I haven't finish the video yet, but I wanted to give my opinion! To me, healthy is just taking care of yourself Eating in a way that isn't harmful to your body, adopting a positive outlook on life (mental health is VERY important) and mainting healthy relationships with others while remaining independant. If you're chronically ill, I guess "healthy" is just "feeling like a person without my illness" Sooo yeah Hope you agree!!
Hannah, your feelings make perfect sense. Unfortunately I don't have a good grasp on what healthy means to me. Like you, I am chronically ill, disabled. I'm unable to work. My life is better than what it was but the med has caused massive weight gain. I want my body back. Make sense? I'm not ungrateful for the improvement, but as a recovered anorexic this is so hard! Sending you much love.
Hannah Witton I don’t have a chronic illness but i admire you soooo much for being able to share your experiences and talk about your feelings.❤️ Im certainly not mentally healthy and i have Postural orthostatic tachycardia syndrome. I’d say being healthy would mean everything physical and mental being in working order.
Hi Hannah - I can completely relate to what you feel. I have FAP Polyposis, which has - for several years - been managed through the brilliant team at St Marks Hospital in London. Like you, I had years of perfect health, daily tablet to take and twice yearly check ups, but other than that my life and health was fantastic. However, out of the blue the condition mutated itself against the drug, which meant I had to have a Whipple procedure January 2018, and then a permanent Ileostomy at St Marks this last February. The stoma has been all ok so far - but yes, given the option I’d go back to having no bag in a heartbeat. Ultimately though, if the Ileostomy wasn’t completed and my bowel left instead of removed, I’d not be here by the start of next year, so it wasn’t an option. I am very grateful as I have my life though. Your videos have been a HUGE help, leading up to surgery too. I also use the Coloplast Sensura Mio, which is also a big help with the daily managing of the stoma for how good I’ve found the bag to be.
I think you can acknowledge that your stoma saved you from the illness and flare up but still regret having to deal with what comes with it. It does feel odd having both emotions but I think you're right in feeling both.
When I was ten years old, I had an emergency surgery to remove my large intestine and get a bag. It was a temporary bag that I had for almost a year I believe. Then they created a j-pouch and hooked me back up. Now I'm 34 and over the last 5 years, my Crohns disease has been getting worse and worse. I flare up for a month or two, (usually two) and then I'm fine for like two weeks and then flare again. It's like my whole life has just been one giant flare up........ I just had another surgery a little over three weeks ago and have another temporary bag. Because of all the scar tissue from all the years of flaring, it made it extremely difficult for the surgeon to create the stoma. It's a loop illiostomy and it barely sticks out at all. In fact it pretty much points down right into the edge of my skin. (I wish I could show you a picture of it...) It's been super frustrating. I am constantly getting skin rashes because the stoma outputs right against the opening of the wafer, and because I don't have a large intestine, the output is super liquidy which makes it really difficult for the wafer to stick properly. Anyways, I totally get how you feel about people thinking that I must be doing so much better and happier now that I had the surgery, which just isn't the case. Sure, I'm not running to the bathroom 20+ times throughout the day and night and the rashes cause by the nighttime accidents, but seriously this is not the outcome I or my surgeon was hoping for. For instance, because the stoma is so low and the liquid output causes the wafer to not stick correctly, I have to use the appliance belt which has to be super tight to pull the wafer down onto my skin to make a seal. But my stomach is so sensitive that the tightness alone really hurts my guts. Alright, well I realise I'm doing a lot of ranting and this was a long comment, but I really enjoyed your video and wanted to share a bit of my story. Thank you so much for sharing your story and letting me know that I'm not alone. (Now I'm off to watch the rest of your videos)
It sounds like you’re struggling with the transition of going from an able bodied person to a disabled person. And it also seems like this is why you feel guilty. Because no one wants to say that life with a disability is worse, in case it gets conflated with disabled people being lesser/not having full lives etc etc. This is something I struggled with when I found out I had narcolepsy. I am still depressed about it, tbh. I wish my life was not this way. But I am working with a therapist and hopefully I will be able to accept it better.
Having a stoma is not a disability. Its only a disability if you let it be. Its all about mindset. I have a stoma and have made my life as normal as can be by changing my thinking on how i see the bag and stoma. To me i dont see it as a disability because if i didnt have it id b in lots of pain and stuck at home.
I’m one of the people that woke up in recovery with a totally unexpected ileostomy. Mentally and physically exhausted. Surgery was one month ago. Listening to you makes me feel better even though our situations are not alike. Thank you for posting and know that there are people out here with new ostomies that are watching your videos!!
Hey Hannah! I found this so interesting! I’ve just written my dissertation on how kidney transplants are seen to be ‘a gift’ and massively improve life but actually can make life so difficult and complicated! There comes medication and side effects, a new body, new assumptions and expectations and a whole new attitude! Kidney failure can affect everyone differently - some people can be bed bound, some don’t even notice! Health is so unique!
I just came across someone on another platform who had renal failure at a young age, had a successful transplant, and then had bipolar flare which caused them to come off their meds and fail the transplant. The guilt and awfulness is so rare - Transplant organs are an obligation and burden and blessing all at once.
Hi Hannah! I have Crohn's, but no stoma as of now. I completely understand what you mean by thinking of yourself as "healthy" when you are in remission and actually talking lots of medications. Sometimes I can even forget I have a chronic condition. Going from the way I am now to a flare and a stoma would be emotionally devastating, even if it is lifesaving. Being grateful for your life and being grateful for your stoma are two different things. P.S. You have helped me understand that if I need this surgery eventually, a happy and fulfilling life is still possible. Thank you 😊
Omg this. I know this is late but, i have been fine (with medication) for over a year, practical remission from crohns (i know only for a short time). I am currently experiencing a flare, which absolutely sucks, and i completely forgot how useless i feel and how little i can do during a flare. Its ridiculous. I really hope i dont need a stoma at some point, i know that i will struggle with missing my life as it has been for the past year.
Hi Hannah, you unpacked allot in this video. I HAD a stoma. I was having intestinal pain, and saw a Doctor. Well one week later woke up after being a coma, with a stoma. I was healthy all my life. In my 50s. After 9 months, I was lucky to have a reversal. I watched your other videos on your life with a stoma. I think I remember you saying that some structure of your intestinal organs had been left intact for the possibility of reconstructing your colon. Not sure if that is still an option. But is so, you want to give that some consideration. Check with your Doctor and see if they can work something out. You are young and are so upbeat. You ooze positivity and enlighten people. I appreciate your videos. Thanks for posting.
Imani Barbarin tweeted something similar to "you can hate the disabling condition and still love yourself as a disabled person," which I definitely needed to have affirmed by another chronically ill/disabled person. Passing along in case it's helpful for you/viewers too. I think this concept is definitely applicable to people who identify as chronically ill but not disabled as well.
Hannah, never feel guilty for having these emotions. They're totally normal. It sucks that this is the hand you've been dealt, and I don't think anyone would ever tell you differently. If it helps, you could try being honest. "Well, my last flare-up nearly killed me so it's definitely better than that, but my symptoms weren't constant so I do miss being able to live a normal day-to-day life doing whatever I wanted."
This video is SO conflicting for me. I did not elect for surgery, it was emergency like yours and I wasn’t even told before that a stoma was an option they thought it was just going to be a tiny resection but ohhh no it was a big surprise! I am still super glad I have the bag because of all the long term effects of the medication that would have killed me/ shortened my life before the crohns did. The bag isn’t so bad 99% of the time, but you do have to adjust your life a little and yes be a bit grateful for the things you can do now that you can’t in a flare up. I do think you can’t think of yourself in remission as a ‘healthy’ person, because really you weren’t. Always happy to chat if you want to, I completely get your point of view!
This was a fab video thanks Hannah. I'm autistic and have suffered with OCD since I was a young teenager, and have had a few severe OCD episodes lasting for months to years. I'm currently undergoing an OCD relapse and so I've recently been thinking about how you are made to adjust your concept of "normal" and "healthy" when you have a chronic condition, as even when I'm in "recovery" I'm still taking medication, doing self-administered exposure therapy and probably still have more intrusive/disturbing thoughts than those without my condition. Thanks for opening up about how although it saved your life, having the surgery to get a stoma there are still downsides!
I thought I may be the only person feeling this way. I had surgery for temporary ileostomy with j-pouch 11 years ago. During reversal my bowel was perforated and I ended up with the "temporary ileostomy" I have now. I now have PTSD due to the emergency surgery and complications, and am awaiting surgery for a permanent ileostomy. I miss my colon despite the fact I had to wear incontinence pants to go out. I felt more in control and always had a plan. My ileostomy is very high output and I constantly worry about catching viruses that will put me back in hospital. It's hard to stay hydrated and I'm more afraid to go out now than I felt before surgery. I constantly feel guilty about feeling this way, but I miss my old body and life and if there had been a medicinal alternative I would have chosen it. Thank you so much for sharing.
I completely understand you!! I was hospitalised around the same time you were and was diagnosed with Crohn’s disease affecting both my stomach and my small intestine. I was so so so I’ll while waiting for a diagnosis to the point where I nearly had a heart attack because my potassium was so low, my heart was really struggling. While I’m on a life saving drug now (Humira) and I am so much healthier than I was while I was in a flare, I really wish I didn’t have the disease. I went from being the “healthiest” I ever was (running every day, eating really well and my mental health was the best it has ever been) to the sickest I have ever been. IBD is a real struggle but props to you for normalising it Hannah!! ❤️
I think it's so brilliant that you've made this video - there must be so many people who are in your position (I know people who went to surgery only a few weeks after being ill). I cannot imagine what it must've been like! I had emergency surgery as well and I know the first few weeks I had that same denial but because I'd been so ill I still saw it as an improvement. Thank you for making this video because you'll have helped so many ostomates (I know a few people who are in a similar position to you who have really appreciated this video!) The whole concept of healthy is really jarring for chronic illness isn't it!
I don't think anyone, stoma or no stoma should assume in the first place. No "you must be this or that". The thing is they should be asking "How are you coping?" And that's it. But, it's how people are, thinking that their own experience makes them the most competent to speak about anyone. And they mean well, usually. Please don't ever feel guilty for anything like that. You give so much to the community, so be proud of yourself and allow yourself to feel.
Hi Hannah, I just want to say thank you for sharing your experiences online and raising awareness. I work in the NHS and work with patients following stoma surgery (elective and emergency) but only see those people for the brief time that they are in hospital after the surgery. I've enjoyed watching your series following up your long term experiences and I think it's great that you're choosing to share this part of your life online. I'm sure it's helped many other people too, and hopefully helped you to feel more supported also.
Three years ago, I got Crohn’s and although I am officially in remission, I still can’t work, because of chronic fatigue and all kinds of chronic nastiness 😬 Luckily, my hospital provided me with a psychologist who’s specifically trained to help people deal with illnesses and disabilities. After more than three years, I still struggle a lot, but I feel I am not comparing myself to the old, healthy me all the time. I feel that’s an important part in the process and I hope you can get there, too. I still feel my life kind of sucks now, but I learned how to enjoy it anyhow, without constantly being sad about the healthy life I had lost. All the best to you, Hannah. Your videos help me so much!!!
you're feelings are totally valid! i started having seizures in november and ive had a diagnosis and medication for about a month now. people will say to me "ah things will get better" but im still having seizures, im taking medications multiple times a day and it genuinely feels like my life is worse now. but i guess people are seeing me as how sick i was since november and im seeing myself as how i was before (maybe cause i can't remember shit when ive had a seizure lol). but idk it's all so fresh so im still not coping with it yet
I became an ostomate at birth and I just turned 30. It is all I know and I dont know life with out it. I for sure get down on the fact that I cant related to it being this positive life change. Sending my love and do not feel guilty!
I have a chronic severe mental illness that started when I was 19 years old. The two things that helped me deal with the fact that my life was objectively better before is 1) admitting that I can’t change my situation. This is normal and okay and I’m not going to die and I’m going to still be loved and lusted and reach my goals. It will just take more time. And 2) I have gained things out of this experience that I would have never otherwise. I was forced to form a very close relationship with my parents, learn to identify and choose truly good hearted people to be in my life, appreciate the day to day experience of being alive as opposed to gaining satisfaction from crossing off big ticket bucket list achievements, gain a new level of empathy and the ability to stay positive and internally at peace even when facing hardships. So to summarize, I feel like I’ve stopped struggling with my post mental illness life through: understanding that I need to accept that my mental illness can be debilitating, knowing that I can do things to control how out of control it gets, and focusing on the strengths that I gained out that I wouldn’t have otherwise.
This video made me cry, Hannah. I have a chronic illness called PoTS, which I've had for 8 years. 2 years ago, I was bed-bound and couldn't leave the house. Then I got referred to a top neurologist who has helped me massively, but I'm still unable to work a normal job etc, but everyone tells me how lucky I am, and how much happier I must be...and honestly, I still feel just as unhappy because my life is still affected massively - so I totally get the guilt that comes with "getting better" about being "healthier". It really is so wonderful to feel less alone after watching this video - you're truly an inspiration ❤
I'm a part time mobility aid user (cane or walker, depending on the day) and I always struggle with feeling "more disabled" when I'm using my aid even though using my aid makes me able to do things, whereas choosing to not use my aid means I can't leave the house for very long. So this is...a mood.
Thanks for talking openly about these problems. After two years of listening that I have IBS, I was finally diagnosed with dolichosigma. They cut out 50 cm of my colon, and even though it fixed some problems, I still live with pain. I keep hoping it will go away with time, but one thing is for sure - I will never be the same again.
thank you for opening up about this! you've been such a powerful representation of the invisible illness community, and i appreciate it so much! also, thank you for the hand-written captions! it really means so much.
I'm scheduled for a bowel resection surgery in 5 days. They marked a spot high on my abdomen in case they decide during the surgery that I need a stoma. I was incredibly unprepared for what the ostomy nurse showed me and told me. I have had 4 previous abdominal surgeries so alot of scars. Maybe that's why they marked a high spot. I cannot wrap my mind and what "could" happen on Tuesday. Everyone (doctors and family) tells me I must have the bowel resection surgery. Everything in me wants to cancel and take my chances. The doctor told me I have a chance of coming out of this without a bag and if I put off the surgery it could have to be done in an emergency situation and I have no choice.... he said I could end up with exactly what I don't want if I wait. Thank you for doing these videos... You're adorable and so REAL in the way you relate your thoughts and feelings. I totally understood the guilt thing you mentioned in one of the videos. May the Lord bless you and help both of us count our blessings! Warm regards, Georgette
I'm unfortunately one of those unhelpful people who had an ileostomy whose life has drastically improved, but i can totally understand where you're coming from. for me, it would be like people asking me whether life was so much better having a stoma than before i'd ever been diagnosed. which, duh. going from being healthy to dealing with something so huge is never going to be easy, but your feelings are totally valid and you've helped me so much by helping me be less scared about my surgery in the lead up and giving me optimism about my recovery, so thank you. i hope you can also get the help you need!
I've had crohns disease for 17 years. I totally get where you're coming from. You learn to adapt to your normal, and although you still had your colitis, you felt "normal" and got on with life. I was the same, and the unpredictability of it is so frustrating for me now. I've developed bad symptoms and been struggling on for a few years now, and medication always came to my rescue, but now, I have had everything available on the NHS, and they have all failed and I am officially getting surgery. Everything must go. So big adjustments will be coming for me too. Your videos help massively and you come across so positively. You pointed me in the direction of other youtubers and that has helped me with my research which is so reassuring. I'm glad I'm not as much of an emergency as you were. I have at least a little time to learn and adjust. So dont feel guilty for how you feel, this was sudden for you, and that is a traumatic experience. It is natural that you would have a different path. Thank you for this and your other videos, xxx
Interesting to mention how healthy you felt before the whole illness and Stoma took place. I I too was extremely healthy in body and mind - watching what I ate and drank to be fit, then Crohn's came on after a stressful time with work and caused problems for years. I'm now positive again with a Stoma! I've had it for 6 years and have just started TH-cam videos into our community. You are a great inspiration and start for all to get their message out. Thanks
I have had UC for 23 years now and when in remission I still class myself as unhealthy due to the fatigue etc. Healthy to me is someone who has relatively no chronic illnesses who can lead a normal day to day life etc.
THIS! For my first 13 years I had no symptoms of my disease but when my POTS showed itself when I was 14 I was basically always in a wheelchair and I couldn't push myself. I recently started saline infusions and walking part-time is better than not being able to walk, but from 0-13 my life was much better.
You asked so many questions at once. Lol. You are darling 😍. I just got a stoma. (Ileostomy) Monday will be 2 weeks. You are one of the TH-camrs I watched when I found out before my procedures. Unfortunately my chronic disease was cancer. For several several years and different kinds, but the last 3 years anal cancer. The radiation has changed my body, in ways I keep thinking I should have been told about, but wasn't. The extremities of the side effects of radiation and chemo, kept me chronically ill for three years. So ill, that during that same time I had 17 surgeries. I always feel guilty for any negative thoughts I have about my new me or complaining about life and my new challenges. I am so painfully aware that others don't get theses opportunities, procedures or that they don't always work or live to receive them. With lots of procedures medicine wide. However, I still give value to my experience and my feelings along the way. I am also always grateful. I am also always a human and with that I am allowed the human experience. Grieving is part of that. Yes, you are allowed to say my life was better. Now, you can move forward. Still missing the you of the then and also beginning to appreciate and love the new you and figure out how to continue to navigate it with the positive energy, love, understanding and intelligent discussion I have been drawn to in you. Move forward in your journey and keep feeling and expressing your thoughts as you did before. Keep them real and keep coming out stronger 💪💪💪. That's what I tend to do. I have been on my medical journey since I was 13. Cancer since 24. I am 49. I was blessed with a baby. He is now 27. Will be 28 this year. 👵 Feeling my age, remembering my yesterday's and planning my tomorrows. I fill them with as much love, time, reflection and fun as possible crazy fun. Memories fun. I wish you well my dear. Until the next time I am draw to respond to one of your videos, I also wish you patience with yourself. We are go getters. That's okay. In fact it's great. Don't ever apologise for living your sickness your way. But know it's natural to feel guilty for some of our thoughts.
I hope you ended up finding a form of therapy that helps you with this. I relate to this video, and therapy has helped me greatly. To me, healthy means not having to worry ones self about the way their body reacts, functions day to day. Healthy means getting to exist on autopilot without that voice in the back of the head, and a tightening of the chest that says "what if". I'm lucky to have a bowel condition rather than a bowel disorder, but I very much empathize with much of what you're saying. Being not healthy is the pits, especially when, depending on the day, we exist on both sides of that "healthy" line. I currently live as two people. One version of me when I'm not in a flare up, the other of me exists in one. The healthy me holds myself to the expectations and standards of a healthy person. Then a flare up happens and I have to forgive myself for not being able to meet those standards. Healthy me has to make safe, hard decisions just in case the flare-up me takes the reins that day. Because it can be any day. It took me a while to understand my anxiety stemmed from my living with my condition. Therapy has helped me figure that out. I hope yours brings you revalations also.
I'm very happy that you started speak about it, because I think that it's what we need. Saying that life with a stoma is better is not exactly true. I also have ulcerative colitis and have a flare up two years now, probably everybody with a UC can imagine how exhaustive it is. When you loosing a hope that will be better sometime. I was considering a surgery in my mind after I heard about you and your channel last year (I truly cried because of what happened to you). Anyway when I did a research about it, there were some people who want to warn people against thinking about stoma surgery as a solving all the problems with UC, because it's not. Many people can feel even worse than before the surgery and have lots of complications after that. Of course many times the surgery is saving a life, but shouldn't be considering as a cure for a UC. I wish you and everybody with UC lots of strength to survive and good luck!
As someone dealing with chronic illnesses, the closest I have been to so called "healthy" is on my so called "good days". However, even those are quite relative in regards to actually being good. Usually, it just means that my pain and such is less overall than other days. Those "good days" don't always last for an entire day, in fact, often it is only for a matter of hours before the pain and such returns to much higher levels.
I think chronic illness will never be completely easy to deal with. But you're definitely not the only one. On one hand it's incredibly devastating, but on the other hand it's humbling. It grounds people. Confronts their limits. It makes a better human being (in my humble opinion). Of course I'm speaking from experience.
I had prostate cancer. I am cancer free after brackytherapy.. Life is different. I need a Poise because I leak. Mister Happy works intermittently and never when I want it to. I am able to get up and go to my machine shop every day and do something I like. Was my life better 15 years ago? absolutely. I am still able to appreciate a beautiful young lady, like yourself. You have brightened my days. I start my day with coffee and Hannah W. I thank you for being you.
I deal with chronic illness, with "healthy" remission periods and unhealthy periods. Right now I'm doing very well, and people around me are expecting me to be happier than I actually am. Don't get me wrong, I am happy, but acknowledging that I'm healthy always comes with the qualifier "for now," and people don't seem to like hearing that. They prefer the narrative that I've finally conquered my illness, as evidenced by how well I'm doing now. People try to encourage me to be more positive, and that makes me worry that staying vigilant for a downturn means I'm choosing to be overly negative, or ungrateful. Or worse, that my illness has beaten the positivity out of me. I know this isn't true, but sometimes it's a struggle to remember that. So glad you're tackling this topic!
This sounds like an experience closer to cancer to me. a relative had no symptoms but discovered they had bowel cancer after a screening test. Treatment followed including either a colostomy or an iliostomy, I'm not sure which. I wonder whether cancer communities might have an insight that is more relatable in this particular respect?
Totally understand your points. I'm new to all this. Emergency surgery too. I was told mild chrons so didn't even really know what a stoma was as it wasn't a path I ever thought I would go down. Turns our UC and bowel disintegrated. Emergency life changing and saving surgery. I haven't even decided how I feel about the stoma as open wound (left open no stitches or staples) and still not healed 16 weeks on. I feel on one hand the surgeon saved my life and should feel grateful and on the others I feel butchered. Life was better before for sure but wouldn't have life without the bag. Don't want even if poddible a reversal as I can't think of anything else than another operation.
The sudden precipitation of your UC and the need for a stoma is more similar to someone who had abdominal trauma who needed a stoma - a sudden, unexpected change that required an unplanned lifesaving intervention. This is a different timeline than people with progressively active UC who ultimately got a stoma (and got so much better). The difference between an elective or semi-elective surgery and an urgent/emergent one is massive - you absolutely nailed it. *also, disclaimer - stomas are not made casually by surgeons. They are made to save a life, with long term health and safety of the patient in mind.
The element of choice you discuss makes total sense. So many people got to take control of their before and after and you didn't. People are projecting an easier idea of your before that is not true - people love to do this it's so annoying! Illness isn't always steadily progressive but people hate to admit it and risk feeling vulnerable about their future- which only alienates you and suppresses your real experience! Your perspective makes total sense, it's valid, own it!
I’m 16 and I’ve had scoliosis since I was 12 and I’ve had two major surgeries to fix it. The first surgery was a success until last summer when I broke one of the rods in my back. I then had to go through the whole process again and in that time I developed really bad anxiety about being back in the state of mind of a disabled person. My second surgery was a success, and it has taught me to be grateful for the surgeries that fix you, because things can go wrong again. I’m still dealing with body image issues as I still have one hip higher than the other and 2 massive scars on my back, and non of this is portrayed in any type of media, but one day I know I’ll be fine.
Good on ya. Having people telling you how you should feel about a medical condition is not fun, especially when it's life-threatening and debilitating (and carrying meds and shit everywhere is a bit of a pain too). I know that feeling when you want to scream them and go "no, actually I'm not enjoying myself having this, thanks very much" but having to nod and smile instead. ARGH! I'm glad this popped up as a suggestion for me, I think it's really admirable that you're very committed to honesty for the sake of opening up discussion for other people and you 100% shouldn't feel guilty about sharing, everyone deserves support, I think that takes a lot of bravery and strength. So thank you :)
I'm also glad I saw this for selfish reasons, a few days ago I ended up in hospital for an allergic reaction, got off lightly though, all I have to deal with is a few pills, but it gave me a fright, and I'm not looking forward to the attitude I'm going to get when the long weekend ends and my family start spreading the news.
If people are insensitive enough to assume your life must be better now with a stoma, ask them if they would like your stoma and you take there healthy colon, that'll make em think. You shouldn't feel guilty at all.
@@marieantoinettepaddelboot3149 Good point, and your quite right. I was assuming that in hannah's social circle's she is more likely to encounter acquaintances that haven't had a chronic illness so assume too much without knowing how she feels about living with a stoma. But yes in some instance's when interacting with acquaintance's who do have a chronic illness and stoma you are quite right she wouldn't be able to use that riposte. And hannah said people with stoma's there stories are all very different, like hannah said it is really difficult. I think some people with stoma's do empathize with hannah but misunderstand how she feels about it all. In any case she should not feel guilty at all about telling people with or without stoma's they are wrong. I don't want upset anyone esp. Hannah , just trying to help is all.
Maybe it's different in my case since I have mental illness (clinical depression), but I've been stable for a few years now. I remember exactly what it was like when I was at my lowest points and wishing every moment that I could die. I remember that agony and am weirdly grateful for the perspective it gives me. Despite my current stability thanks to tons of therapy, a strong support network, and mountains of antidepressants (that I've been tapered off of for over a year now under medical supervision), I still consider myself to have a mental illness because it can come back at any time. Clinical depression doesn't have to have a reason, unfortunately. I guess I'm in "remission" from it? My life before depression was great and my life after depression is great, and I'm grateful to be out of the thick of it, but I still wish I'd never been depressed in the first place because it stole 5 years worth of experiences I'll never be able to replicate. Does any of this make sense??
I've 'had' depression since I was about 9. I've had the best mental health year of my life. I feel happy. But I still say I have it because take away my anti depressants and it'll slowly creep back in.
I lost most of my childhood and teenage years to untreated depression and i'll probably be on medication for the rest of my life, but right now i'm in a good space. but i still have chronic depression and i still have to be very careful in daily life to avoid triggers. i get your point about wishing you didn't have depression in the first place, but i can't imagine a life like that. all i can do is try to do now what i couldn't before, and try to live my life in a way that keeps me as happy and healthy as possible
I have a brain disorder that, for me, requires a shunt to drain excess fluid. Right after I was diagnosed I had that shunt placed, and it worked for 7 years with no issue. I would’ve probably described myself as cured, I definitely didn’t FEEL like a chronically ill person. When my shunt malfunctioned, that started a series of subsequent malfunctions, revisions, and a general decline in health that has lasted for years. It was such a struggle going through that transition. I had always known this would be chronic...I never knew it would be LIKE THIS. I have gone back and forth (and back again) through acceptance, denial, forgetting, etc. It’s such a hard thing to settle into, and no one talks about being in ~this~ phase. I really appreciated this video! We’re out here!
Thank you Thank you Thank you for this video! I'm having surgery in a week! A Week! My situation isn't an emergency (yet) but my doc says I have no other option then surgery and I have all the feels on what you are saying! I wouldn't choose this either, and I hear a lot of the same things you mentioned but on the other side. 'Oh you're *going* to feel so much better... you're *going* to get your life back' my problem is my flare has been ongoing for over a year and now coming up to surgery I'm actually feeling better. Better within my own UC experience but still Better then being tied to the toilet every moment of the dang day! Doctor still says Surgery :( I think "Healthy" is relative to your own experience. I wouldn't' say that you were unhealthy during your 10 year remission. You were the healthiest you could be Within having a chronic disease. And I say not having a flare for 10 years is pretty dang healthy! Thank you again. Your (UC/Stoma) videos are helping me so much.
Wishing u all the luck with your surgery. You have this in the bag (no pun intended.) Everyones experience is so different so I can't say everything will be great but you're strong and you can do this. I had my stoma surgery 5 months ago now and I'm still adapting to my new life. But I definitely don't miss the pain I went through before my stoma. Hannah and other you tubers that discuss stomas are a God send, I learnt so much from them. Be kind to yourself and just take it a day at a time. Wishing you a speedy recovery. Lots of love from a fellow ostomate xx
As a young person with a chronic disease that resulted in multiple surgeries with a butt ton of complications, I hear you! I really love your perspectives and hearing your thought process when it comes to these tougher subjects. I’m also not sorry I had surgery - it saved my life. But it left me with chronic pain and multiple challenges. It’s impossible not to sometimes long for the days when life was easier. I sometimes see my life as a before and after, as I drastically changed as a person (for better or worse) as a direct result of my surgeries. Much love to you, Hannah. ❤️
Thank you so much for talking complexly about illness and disability. I don't usually comment as I don't have a chronic illness, but I really related to your feelings of guilt as I experienced this when I had cancer last year. As you say, how people respond to treatments/surgeries is complex and while I felt super grateful for the treatment I received last year, how "lucky" I was hammered into so much that I felt guilty about having negative feelings about treatment. Obviously this was a very different situation, but I really related to what you said about people projecting ideas/feelings onto you and how it can feel so uncomfortable. I hope this makes sense, and thanks again for opening up important conversations!
The other thing - I know, giant comment and then I have more to say! - is that I think a lot of us, when we got our stomas, felt like we had a responsibility to be open about it to decrease the stigma. And obviously that's great - you are one of the people who helped me to feel I could cope with this thing! But I think that can have a cost for us because it does make it harder to acknowledge that getting a stoma is not anyone's ideal life change, and it can indeed feel like we're "supposed to" have the feelings that go with being out and proud about it. But we're emotionally complex creates and it's good to see videos like yours acknowledge that.
Firstly I love your style of speaking on the video, you come across very confident, which is something I lost when I had my Stoma. I was healthy, no bowel problems at all (apart from I had interception when I was 3), then one day I got a perforation from an infected Diverticulitis pocket, again never knew I had diverticulitis, so I was rushed for emergency surgery and woke with a Stoma, my life instantly was destroyed, I struggled every day and it was my wife that was my rock and kept me going, I was promised a reversal after 3 months, which turned to 6 months, then a year and then I finally got a reversal after 2 years when I ultimately broke down to my surgeon. The minute I woke up from my reversal, I instantly regretted it, that regret lasted a good 3 months, and yes it is still hard as my “toilet” trips and not like they used to be they are definitely more frequent, but I am glad I have had the second chance to live without a Stoma, I have since come to terms and accepted that ultimately I believe I will end up with another Stoma at some point in my life, but at least when it happens, like you say, I will be better prepared mentally for it.
My girlfriend has and I've always been kinda very scared about it being severe enough to warrent a stoma. So thankyou so much for you realism and honesty, it really does help
My mum was a somewhat healthy person. At the start of 2020, she had an issue vomiting after every meal that the consultants couldn’t figure out. During the first UK lockdown last year she got really bad very quickly and I rushed her into A&E. They told her she needed an ileostomy to save her life. None of us had ever heard of a stoma. We knew nothing about the metal and physical adjustments needed. Almost a year on, it has been hell for her. She has to change the bag up to five times a day - very high output and a bad scar situation means her bags leak ALL THE TIME. She’s hoping to have a reversal in a few weeks time but there are big risks with that too. Thank you for sharing about your experience. I’ve been bingeing your videos and it has helped me to better understand the struggles my Mum has been having. ❤️
Thank you for sharing your story. I have had UC for four years but I constantly hear my thoughts tell me you’re not healthy your chronically ill no one understands BUT after about two years of doubt I finally accepted the disease. You are strong and being honest makes you vulnerable and real. You are saying everything most people with out condition think about. I constantly think about how much I wish I could go back and somehow prevent getting this disease but thinking in the past only drives you down unnecessary paths.
I would like to share with you,Hannah,the mixed emotions I have about my eye surgery,necessary to save my sight.In January 2010,I had a minor stroke-in my right eye,which peeled the retina..I was too late in getting to surgery,and even though they repaired the retina,the surgery was not successful-the repair failed after only a few months.Then in 2015,I had another stroke,same thing,left eye.Only this time,it split the retina in 5 pieces! I had to have emergency surgery within 5 days,or it could not be saved,I was told.(something I didn't know the first time,or I would have sight in the right eye now)Fortunately,thank GOD, I found the top retinal surgeon in the country(U.S.) was right in my own city,with one of only TWO yellow laser state- of- the- art machines in the world-the other one is in Germany! It was successful,and still holding,nearly 5 years later! And I can SEE! even if it's only one eye,it's sure better than being blind! BUT-the drawback is,because of the 5-way split,and the welds necessary to hold it together,I lost a lot of detail,and where the welds are, obscures my vision.Not so noticeable in general vision,like driving,but when I try to do close-up,or detail work with tiny objects,which is MOST of my work,it's woefully inadequate and maddingly FRUSTRATING! And,what makes it even more difficult,is that a cataract formed ,due to the surgery needed,and I had to have a new lens put in.I was formerly nearsighted,which suited my close-up work just fine.But the new lens had to be a single focus,and it was geared more for farther range,than up close.Meaning anything closer than 2 feet is blurry now..Plus,with only one eye,and thus no depth perception,trying to position things is almost impossible.And reading is terribly difficult,as well-the letters look like you tore up newsprint,then taped it back together,with the letters all jagged and mismatched.BUT-at least I can see.I was blind for about a month until the surgery healed.And I'm SO glad I am not blind now.ANYTHING is better than THAT! But,it's still a mixed blessing. P.S. There is no guarantee on how long the eye will hold out-it COULD fail at any time,particularly if I have another stroke.Or bump my head,or my eye too hard.So,I just hold my breath,try to be careful,and take each day as it comes,trying to enjoy my life,and my sight-such as it is--for as long as I can.
Thank you... just thank you for putting a voice to everything that I am thinking/going through right now. Just became an ostomate in January after 14 years of being a "healthy person" with UC. I can't think of a better phrase to describe my feelings about it better than "it's complicated."
Thank you for sharing your complex feelings on this! These experiences are not always cut and dry. And I think it's important to share those complex feelings so others going through similar struggles know they're not alone and so those of us (like me) who didn't even know what UC or a stoma was before your videos, can learn how to better be supportive and knowledgeable about what our future friends, colleges, family members, or even selves could be going through.
3 years ago I was diagnosed with UC. I haven’t been able to control it for 3 years. I had a colonoscopy to confirm the diagnosis and was given suppositories and sent on my way, I’ve been changing doctors and demanding to see a specialist to get this under control because I am struggling mentally and physically. I also have PCOS, depression and diabetes so I haven’t lost weight, I don’t want to go on steroids because of my weight gain and my depression. I have two young kids and I struggle every day to be a mother, no matter what I eat or drink I just get worse. Every time I’m on the loo Im crying in pain because I don’t want to keep doing this, I would love to have my colon remove so I can increase the value of my life and be the mother my children deserve. Seeing your perspective has opened my eyes to what could happen to me and as much as I wish to be “better” that there is also a lot more responsibility there is with having a stoma, that when I do have my next colonoscopy that what if I wake up and have a stoma. I feel that before getting UC I was healthy and I would do anything I go back to being healthy again.
Hannah, I think your one of the bravest people I ever seen. I have never had any chronic illness but I still listen to your story as it inspires me to stay positive.
Hi Hannah!! Your videos have made me feel so much better, and more confident, since my Ileocecal Resection... I went into surgery being told that there was a 90% chance I would have no Stoma... and I woke up 6 and a half hours later with one.... since having him (my Stoma is called Barrie!) I’ve felt really up and down.... some days, feeling lots better, and other days emotionally struggling so much with the look of my new body.... I was very much like you. I felt like a healthy person. And now I constantly look like a sick person... I’m so grateful that you’re brave enough to voice your opinion. My surgery is reversible, hopefully, but at the moment, I’m very resentful of my IBD....... Lots of love and hugs. You’re such a rockstar. I really appreciate you ❤️
The relationship you described with your condition is really relatable to me from a mental health point of view. I think there's a big intersection between chronic illness, disability, and mental health conditions, in regards to working out what your personal definition of "healthy" is. I don't think it's talked about enough. Thank you for this video!!
You have my sympathy so much, and your experience is so valid. I can relate to this, with mental illness. Which is very different from your situation - of course. But some things are similar. Here's part of my story: But yeah, most of my life I've felt fine and healthy, and then I've had a few anxiety attacks once in a while, which have been bad, but I was stil able to deal with the attacks. But since I started my 20s, I've had a couple of periods where my mental illness has been so bad, so friggin' bad, in a way that has kinda traumatized me. It has happened a few times that my anxity has made med feel like hell for weeks, where I couldn't do anything, including eating, and just had to stay in the sofa feeling so terrible every single second without break. And now I'm better again. So much better. Yes, my life is better again, but I don't really like when people are commentng that, like "You look som much healthier", "Glad to see you're doing well" ++. Because the truth is, I have to live with the fear that I can have periods like that again. Most probably, they will come. And that's become like a huge part of who I am. I'm currently in uni, and I love uni and being a student, but I'm constantly thinking my illness might attack me when I try working a normal job again, and that I might not be able to make the money I need to pay my debts and live a normal life. So yeah, healthy, but at the same time sick. It's there all the time in the back of my head.
I really appreciate this video and your honesty within it. I don’t know if it helps at all - I have Crohn’s disease and had an emergency ileostomy after my bowel ruptured. I struggled with exactly what you talk about, particularly the guilt. The way I dealt with it was I stopped thinking of my life as ‘before stoma or after stoma’ and just allow myself to think about my life. As a whole and as a continuum, my life at 16 and no stoma was great fun and relatively stress free, my life at 18 was painful, horrific and terrifying and no stoma. My life at 19 was bed ridden but WITH a stoma. 20 was healthy, happy with a stoma and at 21 I was healthy, happy with no stoma. Now I am 27, no stoma but really struggling with a fistula, pain and inflammation. I try to think less of ‘before’ and ‘after’ and just take each day as it comes. A stoma is on the cards again and rather than imagining that being the rest of my life I simply think about ‘right, on Tuesday I might have a bag’ Its made a huge difference in my mental health and my acceptance of my chronic illness. I did the same with my medication. I struggled with the idea of injecting every week, but rather than thinking about the fact that I might have to do it forever I changed that mindset and thought about the injection I was currently doing, and tried to remain thankful for all it did for my body. Of course there are days when I get pissed off and frustrated at the fact I have no choice about all of this, but to take it day by day and remind myself of why I take the medication and how surgery/having a bag might help there and then - it really calms my mind! I dont know if this made any sense! Haha! But if anyone wants to chat about it send me a message on my blog - www.sallystoma.wordpress.com 😊 x
SAMEE! I supper from join inflamation for past 7 years, meaning being diagnosed while beeing 15. The thing is, on every day baisis, I feel pretty good but I can’t do certain things and it leaves me feeling vournelable. It’s hard to get used to the new lifestyle and new boundrie for your body. A relief, surely. Knowing that your pain wasn’t made up is helpful, but living among your friends not being able to perform, not so much. Hannah, don’t get guilty. Everyone wants to feel safe AND healthy and any sicknes is anyones choice. What you said is’t ungreatful. It’s natural and healthy to think (or dream) about being healthy.
I can relate to that. When I was 13 I was diagnosed with Osgood Slater's and then Sever's disease. These aren't actually diseases, but were connected to my adolescent growth spurt. Basically my bones were growing so fast it put my tendons under huge strain which caused pain first in my knees (it felt like when you've smacked your knee on something hard and it throbs for ages, except it lasted all day) and later in my achilles and heels (this was *really* painful. On a bad day just flexing my foot felt like someone had thrust a red hot poker into my achilles and I couldn't even stand up). Most days though I could just about hobble between my classes at school, but not much else. Stairs were particularly painful and I dreaded them more than a Dalek does. I went to various specialists and consultants who all said there was no treatment, I just had to wait until my growth spurt was over. In the meantime any extra stress e.g. from exercise or a fall would most likely snap all the tendons in my legs which would mean major surgery, being in plaster for 6 months and leave me on crutches or in a wheelchair for life. Osgood Slater's isn't that uncommon and usually only lasts 3-9 months, but all the specialists said I was the most extreme case they'd ever seen by some distance (it's unusual to have Sever's at the same time too) and it affected me for nearly 3 years. This had a major effect on my life in various ways: 1) Firstly I became increasingly isolated as I couldn't join in stuff with my friends, not just the activities themselves, but also when they were talking about their adventures it was difficult for me to join in the conversation. 2) My mother made it clear how much a nuisance my condition was to her and my father, so I felt guilty about that. 3) I couldn't do PE, but because there were no visible symptoms my P.E teacher said I was faking it (despite me showing him medical notes from several specialists saying under no account must I do any exercise and referring him to my Tutor and Year Head). Every week he tried to bully and humiliate me into doing P.E anyway and would shout at me when I refused (my fear of being crippled for life was greater than my fear of him). This in turn encouraged the other kids to bully me, most didn't believe there was anything wrong with me. Soon all my friends shunned me too and for the next couple of years nobody wanted to sit by me in class or talk to me. I discovered later they were scared of getting the same treatment if they associated with me, but at the time I didn't understand that and just thought everyone hated me including all my old friends, but I didn't know why since I'd never done anything to anybody. From being reasonably popular I suddenly went to being utterly friendless. 4) Whilst all my old friends were going to teenage discos and getting their first snogs and girlfriends I was at home on my own. I thought all the girls must think me a pathetic coward for not standing up to my bullies (I'd been warned that if I got into a scrap even a mild impact to my knee from a blow or fall could cripple me for life, so just took all the shit coming my way and tried not to react). One girl did ask me out, she suggested ice skating and various other things, even just going for a walk, but I couldn't even do that. Pretty much the only thing I could do was watch TV, not very exciting or romantic, especially with all my family being there too and she obviously thought I was making excuses and didn't like her, so then I felt guilty about that. 5) All the above had a massive effect on my self confidence and mental health which was far worse than the physical restrictions and pain. I was living in constant pain/discomfort, fear of being permanently crippled, paranoid (because everyone *was* out to get me) and suffered badly from low self esteem, anxiety and depression. I felt utterly helpless and alone and became suicidal. Although my physical problems lasted less than 3 years and ended when my growth spurt finished the mental effects lasted for years and even today I feel like I missed out on a big chunk of the growing up process, especially those early learning experiences of how to interact romantically with girls ( I didn't get my first snog until uni and even then I was nearly 20). Compared to Hannah and many others my physical problems were minor and only temporary and I'm very fortunate in comparison. And the bullying and trauma I went through is trivial compared to many people's (I know a couple of people, including an ex, who were sexually abused as kids). Despite knowing that, a bit of me still wonder's if my life might have been very different if I hadn't had the Osgood Slater's and Sever's. The one good thing is that the experience made me a lot more empathetic to other people who are having a tough time and whenever life gets shit I can look back and think: "At least things aren't as bad as then and if I got though that I can get through this." P.S. Sorry for waffling on for so long!
I have a stoma too. I have Crohn’s disease. My health failed last year. I almost died. I was in remission for years and years too. I am going to get a reversal in the next few weeks. Keep me in your prayers.
Hello Hannah, i have now 3 weeks my illeostoma. I had collitis ulcerosa, i had almost never complaints with my disease. But they found poliepen with cancercells. I understand your feelings because i think also the same. (Sorry for my bad english) Greets from the netherlands!😘
Hi Hannah, so good to hear this. I've been diagnosed with UC for 4 1/2 years now currently managing with shed loads of medications/treatment. A stoma seems like my worst nightmare and every time I have a flare up I panic like crazy that this is the one! It's nice (and scary!) to see someone speak so openly about what having a stoma can be like. There is a lot of positive things out there about a stoma which I believe are too good to be true!! "Healthy" to me is a day where I complete everything I set out to do without noticing the pain! :)
Hello Hannah, I'm new to your channel but not new to my stoma. I was diagnosed with UC seven and a half years ago and had my colon removed 7 years ago. Thank you so much for this video and sharing how you feel. My surgery was lifesaving and I am grateful for that but I do miss my pre stoma life.. It most definitely is complicated. I am not going to go into it here but it has not been a straight forward journey since my surgery. I think your description of your feelings probably is the most 'normal' way to feel. Certainly one of the most honest descriptions I've came across and I thank you for sharing that honesty.
I never comment on TH-cam videos but I feel very passionately about this subject! I have been extremely lucky to never have had to deal with this life changing surgery. However, last year my mother had to have an emergency stoma put in after a cancerous tumour was found on her bowel having spread from her ovaries. The stoma surgery was first of many and throughout she had intense chemotherapy, not only did she feel pain like I’ve never seen, she suddenly had to change her perception of herself, she had a stoma, no hair, she felt like a ghost of her former self. But she was alive and selfishly, I couldn’t even imagine the other option of her not going through treatment and allowing the tumour to spread further. If she could snap her fingers tomorrow and have her past body back I know she would and who can blame someone for that but the battle she she fought has given me an example of true utter bravery. Watching your videos and your journey with a stoma allowed me to be incredibly empathetic for her and taught me about the implications on her life beyond her cancer diagnosis which is usually what people tend to be concerned with first, ignoring the huge impact of self image on one’s mental health. In short, this is your journey, no one can dictate how you feel about it and every single experience is so personal. Nevertheless, my mum is a fucking boss and so are you! 💗💗💗
You most definitely are NOT alone. My stoma literally saved my life because of complications from radiation I received for cancer. I was told that my quality of life would greatly improve. I suppose that is true if the meaning is that I am still ALIVE....however, LIVING is hard and quality of life is almost non existent. I feel tremendous guilt....I mean it saved my life and I should be happy right? But I am socially anxious now...always afraid I will have a leak or strange stomach noises will occur in public. I spend a lot of time alone because of that. It makes me angry and depressed to be honest, as I have always been a strong outgoing and social person. So yeah....I feel ya. Thank you for being so honest and thank you for what you do.....you are an inspiration.
I have recently been diagnosed with UC. The hardest thing is dealing with the unpredictability of it. How I deal with it is that I don't, its a daily struggle with a body thats got no logical cause and effect anymore. Your videos give me hope in the fact that I can still live my life (one way or another) and some days will be good and to enjoy them when they are there.
The most frustrating part of having UC for me is that people do not understand it’s not just going to the bathroom more than other people.....it’s being exhausted as soon as you wake up and having no energy to play with your kids....it’s taking humira injections that cause horrible side effects that sometimes are irreversible...it’s having some family resent your disease because they can’t possibly understand how someone can be sick all the time and ruin plans......I’m still in a year long process of trying to reach remission and hopefully someday soon i will....I admire your honesty about your situation I can’t imagine how hard it is.....i hope things continue to get better for you in the future!!!
First of all thank you for having this vlog and being so honest. What does 'healthy' mean to me: Days without pain and feeling like I can do anything I could ever do. I'm disabled so I can't and I know that. If I can FEEL like it, though, I'm having a damn good day. Thank you for acknowledging that we have to deal with the negative feelings. I've been sick for 26 years - diagnosed (kinda) for 20. I remember what it was like not dealing with illness all of the time. Looking back I can see I was always dealing with the symptoms but I didn't know, so I didn't have this burden. Would love to have that easier life back. I remember and I mourn it.
I say this with kindness as a stranger. Have you started on the path to therapy yet? You’ve said you wanted to with regards to the hospital stay but therapy can help with this stuff too. It’s great seeing you so open and honest; it’s interesting to learn from and I’m sure they will be others who can relate and find comfort in this. You will not be alone.
This weirdly reminded me of how I think about my anxiety disorder. Sometimes I get stuck thinking about how before therapy, in some ways things seemed much...maybe not easier. But because I didn’t know what “Anxiety” was I thought that was just how life was, and I didn’t gave to deal with how my brain was fucked up? And now having to make the effort to see my therapist every week, and take medication, and continually work on how I’m thinking about things in order to be “healthy”...I think I have a tendency to think about my “past” life like you described as being “healthy” even though I always had an illness. It was I guess maybe “in remission” in some ways. Obviously not the same thing, but this video helped me to think about my chronic illness in a new way. Thanks Hannah! :)
I just want to say thank you SO MUCH for sharing your life in such an honest way!! It’s helped me feel more comfortable on all the emotional rollercoasters that come with chronic illness.
My nine year old daughter had emergency three weeks ago and now has an ostomy. Your videos have given me so much insight and it's helped as I'm helping my kid navigate something I know nothing about.
Thank you for telling us what's going on with you. I am going through a similar experience with people assuming I should be feeling better but I'm not. Friends, family and doctors all say it to me "you must be feeling better by now." As far as dealing with guilt... I'll let you know when I learn how. Thank you for another great video. Thanks for making me feel normal for a few minutes. 😊
I fought like a wild animal for nine years to avoid ostomy surgery. Fed up with the pain and loss of freedom, I gave in 4 weeks ago. So far, the result feels like about a push. I still have the pain, constant bloat and gas, and have having a rough go having a bag of waste constantly glued to my belly. It's still early and I'm not giving up, but the challenge is still to improve the most troublesome issues. Great video and very helpful topic.
Don’t be afraid to share your experience. Don’t be afraid to disagree with what other people say. Don’t be afraid of offending someone by giving your account. Be honest with yourself.
I completely understand that feeling. I'm type 1 diabetic and was diagnosed in my 20s. I went from running marathons to being suddenly ill. I had about 6 months of being very ill and doctors not thinking it was type 1 because I wasn't a child. Finally when I was diagnosed, I was able to be put on a treatment plan with insulin and medical devices. I'll always be grateful for insulin and my devices, but my life isn't "better" now. I'm healthy, but I'm also chronically ill and nothing foreseeable will change that.
My uncle got misdiagnosed with type 2 diabetes when it was really type 1 late adult onset diabetes. He was in his late 40's, so it was very rare and his doctor couldn't imagine type 1 for a person his age, so he was treated with metformin, which is for type 2. He died from this tragic misdiagnosis. Also this was in the early 2000's in the US so there was no financial help for people without medical insurance. He had to pay hundreds in cash to even see a doctor and the doctor he went to knew nothing of this rare type of diabetes. I always tell people about this form of type 1 diabetes because, just like you went through, it can take months to diagnose as many doctors know nothing about it. I'm so glad you finally got the correct diagnosis and appropriate treatment. At only 20 I'm surprised your doctor didn't consider type 1 right away.
I've only recently become aware of your channel and those of the "Squad" and I am devastated to learn of your illness. I am a partner of a woman who had colorectal cancer …. who nearly died of sepsis before her stoma (called Stomy), and lived with her stoma for nearly 4 years while she battled the secondary cancer. She passed away recently. Although you don't have cancer (thank fuck for that), your journey is still a battle and the stoma is a constant annoying negative reminder ……. yes, you are living your life differently, but you are doing an incredible job of publicly documenting the process to relieve the stoma stigma. I know of some of the trials and tribs you are going through and wish you all the best.
This is so important and valid. I've only ever known surgery from 1 years old and that's why when people ask me that question, it never really makes sense because how do you compare to what you don't know? All I know is I used to be in pain daily, and I'm not anymore so THAT is why my life is better but would I choose to never have had a surgery or my scars, who knows? I will never know the other option, I don't know who I'd be without them and frankly, it's a waste of my time to entertain that idea because it will never happen. That guilt is really common - survivor's guilt, and you don't have to always be grateful! You can also be grateful AND angry about it! xx
I've been disabled my whole life, so I can't really relate to "being better before", but I definitely understand the feeling of feeling guilty over preferring an "easier" life than what you have at the moment. I feel that people who don't have that feeling might misunderstand and think that it means you're ashamed of being disabled or whatever it is you have, whereas, with me at least, it's just that I would prefer a life with less difficulties rather than more. I'm still perfectly happy being who I am, but I if I had a magic button that would make my life easier and with less hassles, then I'm pretty sure I'd press it.
I know what you mean. I was “healthy” for 24 years of my life. I’m disabled now and I am struggling with changing my state of mind. I’m still expecting to “get better”.
-I am in the same boat. Almost made it 20yrs before my Stoma Surgery. Chrons Flair's was my only issue and they mainly happen bc I burned myself out. My surgeon made the comment that I was heading towards the stoma surgery tho. So I kinda braced for it. I do feel like I have chrons now that I have my stoma haha. So I understand your point. But you are right, we all process things our own way. And sometimes we know the "step" in life is best but it's so hard to make it. And after, we still question things. That's just being human 🙂 My therapist has deff helped me with my journey and grasp "I didn't lose" I just gave myself a shot to be better in every way. So I hope you find comfort. Sending you the best energies, Hannah ❤️
Rewatching these videos because I had a patient crying so hard today, because the day before yesterday she had surgery to create a stoma. It was emergency surgery after months of being unwell, and she’s heartbroken. She feels like a different person. She feels like she has something disgusting now and she’s grieving the person she was before, and I didn’t know what to say to her. Everyone kept saying to her “but you were so sick before, isn’t this better than dying?” And things like that, but i just think it’s so important to validate her emotions here. Her life is going to be different. And sure, she’s grateful she didn’t die, but this is still a reality she has to deal with now and it’s hard to know what to say to people to validate their feelings without reinforcing their negative self talk. So… im back watching these videos that I haven’t watched since before I even started studying nursing 😅
Thank goodness my symptoms improved SO SO much since became plant based( vegan) i used to black out on the loo in pain which isn't great when you are already disabled like myself, i am super blessed that my diet adjustments stopped having severe daily symptoms with hardly any let ups from the age of 21 until aged almost 51! sending you love and strength xxx
I can relate. As a surviver of a deathly brain aneurysm I never had any health worries until I got diagnosed. So, when I look back I don't think my life is better now but I am alive and I grew from it so yeah I am very thankful to still be here and be pretty much healthy again. It was a tough couple of years but life is worth having to deal with a little bit of extra baggage.
I'm someone who was put in the position of fighting to get surgery on multiple occasions and feeling temporary relief after, but I still romanticise the period of my life where I was "healthy". Only, I wasn't actually that healthy I was just able to be more active. It's something I still have to work on, rethinking and reframing how I term healthy for myself. It's something that's so variable from person to person, I don't think there's one box fits all for healthy (aside from some basics like heart rate etc.) So a lot of my reframing is to kinda avoid comparing my health status to other people's? And finding disease specific support groups. I joined a FB group for my region and that's helped a lot to hear the diversity of experiences with my disability
It doesn’t matter what other people think or say, Hannah. Your experience, and how you deal with it, are unique. There is no right or wrong, so no need for guilt. You have the right to deal with this emotionally in the way that seems right for you at the time. However, acceptance is wonderful. I have been disabled with ME for over 10 years and have had to deal with a massive loss of “normal” quality of life compared with before, but I now do different things. Once you get to the stage of acceptance, you can move on and it doesn’t matter to you so much. Meantime, you are as you are, and nobody has the right to judge you for that! I think you seem to be coping very well, and your outgoing nature and honesty in sharing will stand you in good stead. Bottling stuff up is never the answer, is it!
Thank you for this video. The accepted narratives about illness pretty much all fall apart when you have to live them for more than about five minutes but people writ large still fall back on them because they're all we've got in a lot of cases. For me, I had a life-threatening illness at age 4, so don't remember that "before" time when I was a healthy person, but, after having gone through 6 years of treatment, I've been cured for almost 20 years. It took ages to think of myself as a healthy person, in part because the treatment I had to have can have serious medical consequences decades later, and because the enormity of what happened to me left me with pretty serious PTSD that I'm still working through. So when people are like "oh well its so good that's all behind you now" I don't know what to say, because it still has an enormous presence in my life.
Hi Hannah I have only watched the first minute and already want to say thank you. The overwhelming amount of positive inspo vids pissed me off for two years because I simply couldn't relate. I wasn't there yet and maybe never would be. I just needed it to be ok that I wasnt ok. I'm just here to say Hooray!!!! Nothing else x
Honestly Hannah, how you feel is OK! It just is! We all have different reactions to things. (I'm also willing to bet those positive testimonies from people whose lives were changed by their stoma, for the better, still have times where they aren't really coping with it emotionally and just struggle with it!!) I've been ill with multiple chronic malarkies for 23 odd years now and I have my ups and downs that's for sure! But noone has the right to make you feel like your experience, your feelings, are less relevant than someone else's! Because they aren't. I can tell how hard this video was for you and how emotional you were, so I think you were really brave to make it! Hang in there. And keep being YOU!
Thank you for talking about this openly on your channel! My mom has cancer and got an ileostomy to help with her recovery. I’m her caretaker and it’s been a really amazing learning opportunity. Very, very stressful, but I’m going to have a lot of really funny and gross stories to laugh about later.
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Thank you for watching. Would love to hear your thoughts on this in the comments. What does "healthy" mean to you?
I haven't finish the video yet, but I wanted to give my opinion!
To me, healthy is just taking care of yourself
Eating in a way that isn't harmful to your body, adopting a positive outlook on life (mental health is VERY important) and mainting healthy relationships with others while remaining independant.
If you're chronically ill, I guess "healthy" is just "feeling like a person without my illness"
Sooo yeah
Hope you agree!!
Hannah, your feelings make perfect sense. Unfortunately I don't have a good grasp on what healthy means to me. Like you, I am chronically ill, disabled. I'm unable to work. My life is better than what it was but the med has caused massive weight gain. I want my body back. Make sense? I'm not ungrateful for the improvement, but as a recovered anorexic this is so hard! Sending you much love.
💛
Hannah Witton I don’t have a chronic illness but i admire you soooo much for being able to share your experiences and talk about your feelings.❤️ Im certainly not mentally healthy and i have Postural orthostatic tachycardia syndrome. I’d say being healthy would mean everything physical and mental being in working order.
Hi Hannah - I can completely relate to what you feel. I have FAP Polyposis, which has - for several years - been managed through the brilliant team at St Marks Hospital in London. Like you, I had years of perfect health, daily tablet to take and twice yearly check ups, but other than that my life and health was fantastic.
However, out of the blue the condition mutated itself against the drug, which meant I had to have a Whipple procedure January 2018, and then a permanent Ileostomy at St Marks this last February. The stoma has been all ok so far - but yes, given the option I’d go back to having no bag in a heartbeat. Ultimately though, if the Ileostomy wasn’t completed and my bowel left instead of removed, I’d not be here by the start of next year, so it wasn’t an option. I am very grateful as I have my life though.
Your videos have been a HUGE help, leading up to surgery too. I also use the Coloplast Sensura Mio, which is also a big help with the daily managing of the stoma for how good I’ve found the bag to be.
I think you can acknowledge that your stoma saved you from the illness and flare up but still regret having to deal with what comes with it. It does feel odd having both emotions but I think you're right in feeling both.
When I was ten years old, I had an emergency surgery to remove my large intestine and get a bag. It was a temporary bag that I had for almost a year I believe. Then they created a j-pouch and hooked me back up.
Now I'm 34 and over the last 5 years, my Crohns disease has been getting worse and worse. I flare up for a month or two, (usually two) and then I'm fine for like two weeks and then flare again. It's like my whole life has just been one giant flare up........
I just had another surgery a little over three weeks ago and have another temporary bag. Because of all the scar tissue from all the years of flaring, it made it extremely difficult for the surgeon to create the stoma. It's a loop illiostomy and it barely sticks out at all. In fact it pretty much points down right into the edge of my skin. (I wish I could show you a picture of it...)
It's been super frustrating. I am constantly getting skin rashes because the stoma outputs right against the opening of the wafer, and because I don't have a large intestine, the output is super liquidy which makes it really difficult for the wafer to stick properly.
Anyways, I totally get how you feel about people thinking that I must be doing so much better and happier now that I had the surgery, which just isn't the case.
Sure, I'm not running to the bathroom 20+ times throughout the day and night and the rashes cause by the nighttime accidents, but seriously this is not the outcome I or my surgeon was hoping for.
For instance, because the stoma is so low and the liquid output causes the wafer to not stick correctly, I have to use the appliance belt which has to be super tight to pull the wafer down onto my skin to make a seal. But my stomach is so sensitive that the tightness alone really hurts my guts.
Alright, well I realise I'm doing a lot of ranting and this was a long comment, but I really enjoyed your video and wanted to share a bit of my story.
Thank you so much for sharing your story and letting me know that I'm not alone.
(Now I'm off to watch the rest of your videos)
I would add a prescription pro-biotic. I use Visbiome. It really helps as an adjuct to my Asacol. Stay up, Hannah. Love your channel.
“However, as someone with a chronic illness ‘healthy’ isn’t a thing. Like it’s not even achievable.” Oof, that was so real.
It sounds like you’re struggling with the transition of going from an able bodied person to a disabled person. And it also seems like this is why you feel guilty. Because no one wants to say that life with a disability is worse, in case it gets conflated with disabled people being lesser/not having full lives etc etc. This is something I struggled with when I found out I had narcolepsy. I am still depressed about it, tbh. I wish my life was not this way. But I am working with a therapist and hopefully I will be able to accept it better.
Wait i didn't know people with stomas are disabled? Once they recover what can they not do that other people can do?
@@garybaker466 also my thoughts…I have a stoma and I’m pretty sure I’m not disabled. I actually feel more able than before I got my stoma!
Having a stoma is not a disability. Its only a disability if you let it be. Its all about mindset. I have a stoma and have made my life as normal as can be by changing my thinking on how i see the bag and stoma. To me i dont see it as a disability because if i didnt have it id b in lots of pain and stuck at home.
I’m one of the people that woke up in recovery with a totally unexpected ileostomy. Mentally and physically exhausted. Surgery was one month ago. Listening to you makes me feel better even though our situations are not alike. Thank you for posting and know that there are people out here with new ostomies that are watching your videos!!
Hey Hannah! I found this so interesting! I’ve just written my dissertation on how kidney transplants are seen to be ‘a gift’ and massively improve life but actually can make life so difficult and complicated! There comes medication and side effects, a new body, new assumptions and expectations and a whole new attitude! Kidney failure can affect everyone differently - some people can be bed bound, some don’t even notice! Health is so unique!
I just came across someone on another platform who had renal failure at a young age, had a successful transplant, and then had bipolar flare which caused them to come off their meds and fail the transplant. The guilt and awfulness is so rare - Transplant organs are an obligation and burden and blessing all at once.
Hi Hannah! I have Crohn's, but no stoma as of now. I completely understand what you mean by thinking of yourself as "healthy" when you are in remission and actually talking lots of medications. Sometimes I can even forget I have a chronic condition. Going from the way I am now to a flare and a stoma would be emotionally devastating, even if it is lifesaving. Being grateful for your life and being grateful for your stoma are two different things.
P.S. You have helped me understand that if I need this surgery eventually, a happy and fulfilling life is still possible. Thank you 😊
Omg this. I know this is late but, i have been fine (with medication) for over a year, practical remission from crohns (i know only for a short time). I am currently experiencing a flare, which absolutely sucks, and i completely forgot how useless i feel and how little i can do during a flare. Its ridiculous. I really hope i dont need a stoma at some point, i know that i will struggle with missing my life as it has been for the past year.
Hi Hannah, you unpacked allot in this video. I HAD a stoma. I was having intestinal pain, and saw a Doctor. Well one week later woke up after being a coma, with a stoma. I was healthy all my life. In my 50s. After 9 months, I was lucky to have a reversal. I watched your other videos on your life with a stoma. I think I remember you saying that some structure of your intestinal organs had been left intact for the possibility of reconstructing your colon. Not sure if that is still an option. But is so, you want to give that some consideration. Check with your Doctor and see if they can work something out. You are young and are so upbeat. You ooze positivity and enlighten people. I appreciate your videos. Thanks for posting.
Imani Barbarin tweeted something similar to "you can hate the disabling condition and still love yourself as a disabled person," which I definitely needed to have affirmed by another chronically ill/disabled person. Passing along in case it's helpful for you/viewers too. I think this concept is definitely applicable to people who identify as chronically ill but not disabled as well.
You did a really good job explaining your experience. I hope it helped you to talk about it and that comments from others help you feel less alone.
Hannah, never feel guilty for having these emotions. They're totally normal. It sucks that this is the hand you've been dealt, and I don't think anyone would ever tell you differently.
If it helps, you could try being honest. "Well, my last flare-up nearly killed me so it's definitely better than that, but my symptoms weren't constant so I do miss being able to live a normal day-to-day life doing whatever I wanted."
This video is SO conflicting for me. I did not elect for surgery, it was emergency like yours and I wasn’t even told before that a stoma was an option they thought it was just going to be a tiny resection but ohhh no it was a big surprise! I am still super glad I have the bag because of all the long term effects of the medication that would have killed me/ shortened my life before the crohns did.
The bag isn’t so bad 99% of the time, but you do have to adjust your life a little and yes be a bit grateful for the things you can do now that you can’t in a flare up.
I do think you can’t think of yourself in remission as a ‘healthy’ person, because really you weren’t.
Always happy to chat if you want to, I completely get your point of view!
This was a fab video thanks Hannah. I'm autistic and have suffered with OCD since I was a young teenager, and have had a few severe OCD episodes lasting for months to years. I'm currently undergoing an OCD relapse and so I've recently been thinking about how you are made to adjust your concept of "normal" and "healthy" when you have a chronic condition, as even when I'm in "recovery" I'm still taking medication, doing self-administered exposure therapy and probably still have more intrusive/disturbing thoughts than those without my condition. Thanks for opening up about how although it saved your life, having the surgery to get a stoma there are still downsides!
I thought I may be the only person feeling this way. I had surgery for temporary ileostomy with j-pouch 11 years ago. During reversal my bowel was perforated and I ended up with the "temporary ileostomy" I have now. I now have PTSD due to the emergency surgery and complications, and am awaiting surgery for a permanent ileostomy. I miss my colon despite the fact I had to wear incontinence pants to go out. I felt more in control and always had a plan. My ileostomy is very high output and I constantly worry about catching viruses that will put me back in hospital. It's hard to stay hydrated and I'm more afraid to go out now than I felt before surgery. I constantly feel guilty about feeling this way, but I miss my old body and life and if there had been a medicinal alternative I would have chosen it. Thank you so much for sharing.
I completely understand you!! I was hospitalised around the same time you were and was diagnosed with Crohn’s disease affecting both my stomach and my small intestine. I was so so so I’ll while waiting for a diagnosis to the point where I nearly had a heart attack because my potassium was so low, my heart was really struggling. While I’m on a life saving drug now (Humira) and I am so much healthier than I was while I was in a flare, I really wish I didn’t have the disease. I went from being the “healthiest” I ever was (running every day, eating really well and my mental health was the best it has ever been) to the sickest I have ever been. IBD is a real struggle but props to you for normalising it Hannah!! ❤️
Feeling you, same thing here but I have UC.
I think it's so brilliant that you've made this video - there must be so many people who are in your position (I know people who went to surgery only a few weeks after being ill). I cannot imagine what it must've been like! I had emergency surgery as well and I know the first few weeks I had that same denial but because I'd been so ill I still saw it as an improvement. Thank you for making this video because you'll have helped so many ostomates (I know a few people who are in a similar position to you who have really appreciated this video!)
The whole concept of healthy is really jarring for chronic illness isn't it!
I don't think anyone, stoma or no stoma should assume in the first place. No "you must be this or that". The thing is they should be asking "How are you coping?" And that's it. But, it's how people are, thinking that their own experience makes them the most competent to speak about anyone. And they mean well, usually. Please don't ever feel guilty for anything like that. You give so much to the community, so be proud of yourself and allow yourself to feel.
Hi Hannah, I just want to say thank you for sharing your experiences online and raising awareness. I work in the NHS and work with patients following stoma surgery (elective and emergency) but only see those people for the brief time that they are in hospital after the surgery. I've enjoyed watching your series following up your long term experiences and I think it's great that you're choosing to share this part of your life online. I'm sure it's helped many other people too, and hopefully helped you to feel more supported also.
Three years ago, I got Crohn’s and although I am officially in remission, I still can’t work, because of chronic fatigue and all kinds of chronic nastiness 😬 Luckily, my hospital provided me with a psychologist who’s specifically trained to help people deal with illnesses and disabilities. After more than three years, I still struggle a lot, but I feel I am not comparing myself to the old, healthy me all the time. I feel that’s an important part in the process and I hope you can get there, too. I still feel my life kind of sucks now, but I learned how to enjoy it anyhow, without constantly being sad about the healthy life I had lost. All the best to you, Hannah. Your videos help me so much!!!
you're feelings are totally valid! i started having seizures in november and ive had a diagnosis and medication for about a month now. people will say to me "ah things will get better" but im still having seizures, im taking medications multiple times a day and it genuinely feels like my life is worse now. but i guess people are seeing me as how sick i was since november and im seeing myself as how i was before (maybe cause i can't remember shit when ive had a seizure lol).
but idk it's all so fresh so im still not coping with it yet
So sorry to hear of your Ill health. Sending u the biggest hug x
@@sarahmorley1031 aww thanks, so sweet!
I became an ostomate at birth and I just turned 30. It is all I know and I dont know life with out it. I for sure get down on the fact that I cant related to it being this positive life change. Sending my love and do not feel guilty!
I have a chronic severe mental illness that started when I was 19 years old. The two things that helped me deal with the fact that my life was objectively better before is 1) admitting that I can’t change my situation. This is normal and okay and I’m not going to die and I’m going to still be loved and lusted and reach my goals. It will just take more time. And 2) I have gained things out of this experience that I would have never otherwise. I was forced to form a very close relationship with my parents, learn to identify and choose truly good hearted people to be in my life, appreciate the day to day experience of being alive as opposed to gaining satisfaction from crossing off big ticket bucket list achievements, gain a new level of empathy and the ability to stay positive and internally at peace even when facing hardships. So to summarize, I feel like I’ve stopped struggling with my post mental illness life through: understanding that I need to accept that my mental illness can be debilitating, knowing that I can do things to control how out of control it gets, and focusing on the strengths that I gained out that I wouldn’t have otherwise.
Alicia Wei my experience with mental health is the same.
This video made me cry, Hannah. I have a chronic illness called PoTS, which I've had for 8 years. 2 years ago, I was bed-bound and couldn't leave the house. Then I got referred to a top neurologist who has helped me massively, but I'm still unable to work a normal job etc, but everyone tells me how lucky I am, and how much happier I must be...and honestly, I still feel just as unhappy because my life is still affected massively - so I totally get the guilt that comes with "getting better" about being "healthier". It really is so wonderful to feel less alone after watching this video - you're truly an inspiration ❤
I'm a part time mobility aid user (cane or walker, depending on the day) and I always struggle with feeling "more disabled" when I'm using my aid even though using my aid makes me able to do things, whereas choosing to not use my aid means I can't leave the house for very long. So this is...a mood.
Thanks for talking openly about these problems. After two years of listening that I have IBS, I was finally diagnosed with dolichosigma. They cut out 50 cm of my colon, and even though it fixed some problems, I still live with pain. I keep hoping it will go away with time, but one thing is for sure - I will never be the same again.
thank you for opening up about this! you've been such a powerful representation of the invisible illness community, and i appreciate it so much! also, thank you for the hand-written captions! it really means so much.
I'm scheduled for a bowel resection surgery in 5 days. They marked a spot high on my abdomen in case they decide during the surgery that I need a stoma. I was incredibly unprepared for what the ostomy nurse showed me and told me. I have had 4 previous abdominal surgeries so alot of scars. Maybe that's why they marked a high spot. I cannot wrap my mind and what "could" happen on Tuesday. Everyone (doctors and family) tells me I must have the bowel resection surgery. Everything in me wants to cancel and take my chances. The doctor told me I have a chance of coming out of this without a bag and if I put off the surgery it could have to be done in an emergency situation and I have no choice.... he said I could end up with exactly what I don't want if I wait. Thank you for doing these videos... You're adorable and so REAL in the way you relate your thoughts and feelings. I totally understood the guilt thing you mentioned in one of the videos. May the Lord bless you and help both of us count our blessings! Warm regards, Georgette
I'm unfortunately one of those unhelpful people who had an ileostomy whose life has drastically improved, but i can totally understand where you're coming from. for me, it would be like people asking me whether life was so much better having a stoma than before i'd ever been diagnosed. which, duh. going from being healthy to dealing with something so huge is never going to be easy, but your feelings are totally valid and you've helped me so much by helping me be less scared about my surgery in the lead up and giving me optimism about my recovery, so thank you. i hope you can also get the help you need!
I've had crohns disease for 17 years. I totally get where you're coming from. You learn to adapt to your normal, and although you still had your colitis, you felt "normal" and got on with life. I was the same, and the unpredictability of it is so frustrating for me now. I've developed bad symptoms and been struggling on for a few years now, and medication always came to my rescue, but now, I have had everything available on the NHS, and they have all failed and I am officially getting surgery. Everything must go. So big adjustments will be coming for me too. Your videos help massively and you come across so positively. You pointed me in the direction of other youtubers and that has helped me with my research which is so reassuring. I'm glad I'm not as much of an emergency as you were. I have at least a little time to learn and adjust. So dont feel guilty for how you feel, this was sudden for you, and that is a traumatic experience. It is natural that you would have a different path. Thank you for this and your other videos, xxx
Interesting to mention how healthy you felt before the whole illness and Stoma took place. I I too was extremely healthy in body and mind - watching what I ate and drank to be fit, then Crohn's came on after a stressful time with work and caused problems for years. I'm now positive again with a Stoma! I've had it for 6 years and have just started TH-cam videos into our community. You are a great inspiration and start for all to get their message out. Thanks
I have had UC for 23 years now and when in remission I still class myself as unhealthy due to the fatigue etc. Healthy to me is someone who has relatively no chronic illnesses who can lead a normal day to day life etc.
THIS! For my first 13 years I had no symptoms of my disease but when my POTS showed itself when I was 14 I was basically always in a wheelchair and I couldn't push myself. I recently started saline infusions and walking part-time is better than not being able to walk, but from 0-13 my life was much better.
You asked so many questions at once. Lol. You are darling 😍. I just got a stoma. (Ileostomy) Monday will be 2 weeks. You are one of the TH-camrs I watched when I found out before my procedures. Unfortunately my chronic disease was cancer. For several several years and different kinds, but the last 3 years anal cancer. The radiation has changed my body, in ways I keep thinking I should have been told about, but wasn't. The extremities of the side effects of radiation and chemo, kept me chronically ill for three years. So ill, that during that same time I had 17 surgeries. I always feel guilty for any negative thoughts I have about my new me or complaining about life and my new challenges. I am so painfully aware that others don't get theses opportunities, procedures or that they don't always work or live to receive them. With lots of procedures medicine wide. However, I still give value to my experience and my feelings along the way. I am also always grateful. I am also always a human and with that I am allowed the human experience. Grieving is part of that. Yes, you are allowed to say my life was better. Now, you can move forward. Still missing the you of the then and also beginning to appreciate and love the new you and figure out how to continue to navigate it with the positive energy, love, understanding and intelligent discussion I have been drawn to in you. Move forward in your journey and keep feeling and expressing your thoughts as you did before. Keep them real and keep coming out stronger 💪💪💪. That's what I tend to do. I have been on my medical journey since I was 13. Cancer since 24. I am 49. I was blessed with a baby. He is now 27. Will be 28 this year. 👵 Feeling my age, remembering my yesterday's and planning my tomorrows. I fill them with as much love, time, reflection and fun as possible crazy fun. Memories fun. I wish you well my dear. Until the next time I am draw to respond to one of your videos, I also wish you patience with yourself. We are go getters. That's okay. In fact it's great. Don't ever apologise for living your sickness your way. But know it's natural to feel guilty for some of our thoughts.
Hannah rambling and being her own therapist without realizing it !!
We are here for you babe😘
I hope you ended up finding a form of therapy that helps you with this. I relate to this video, and therapy has helped me greatly.
To me, healthy means not having to worry ones self about the way their body reacts, functions day to day. Healthy means getting to exist on autopilot without that voice in the back of the head, and a tightening of the chest that says "what if". I'm lucky to have a bowel condition rather than a bowel disorder, but I very much empathize with much of what you're saying. Being not healthy is the pits, especially when, depending on the day, we exist on both sides of that "healthy" line.
I currently live as two people. One version of me when I'm not in a flare up, the other of me exists in one. The healthy me holds myself to the expectations and standards of a healthy person. Then a flare up happens and I have to forgive myself for not being able to meet those standards. Healthy me has to make safe, hard decisions just in case the flare-up me takes the reins that day. Because it can be any day.
It took me a while to understand my anxiety stemmed from my living with my condition. Therapy has helped me figure that out. I hope yours brings you revalations also.
I'm very happy that you started speak about it, because I think that it's what we need. Saying that life with a stoma is better is not exactly true. I also have ulcerative colitis and have a flare up two years now, probably everybody with a UC can imagine how exhaustive it is. When you loosing a hope that will be better sometime. I was considering a surgery in my mind after I heard about you and your channel last year (I truly cried because of what happened to you). Anyway when I did a research about it, there were some people who want to warn people against thinking about stoma surgery as a solving all the problems with UC, because it's not. Many people can feel even worse than before the surgery and have lots of complications after that. Of course many times the surgery is saving a life, but shouldn't be considering as a cure for a UC. I wish you and everybody with UC lots of strength to survive and good luck!
As someone dealing with chronic illnesses, the closest I have been to so called "healthy" is on my so called "good days". However, even those are quite relative in regards to actually being good. Usually, it just means that my pain and such is less overall than other days. Those "good days" don't always last for an entire day, in fact, often it is only for a matter of hours before the pain and such returns to much higher levels.
I think chronic illness will never be completely easy to deal with. But you're definitely not the only one. On one hand it's incredibly devastating, but on the other hand it's humbling. It grounds people. Confronts their limits. It makes a better human being (in my humble opinion). Of course I'm speaking from experience.
I had prostate cancer. I am cancer free after brackytherapy.. Life is different. I need a Poise because I leak. Mister Happy works intermittently and never when I want it to. I am able to get up and go to my machine shop every day and do something I like. Was my life better 15 years ago? absolutely. I am still able to appreciate a beautiful young lady, like yourself. You have brightened my days.
I start my day with coffee and Hannah W. I thank you for being you.
I deal with chronic illness, with "healthy" remission periods and unhealthy periods. Right now I'm doing very well, and people around me are expecting me to be happier than I actually am. Don't get me wrong, I am happy, but acknowledging that I'm healthy always comes with the qualifier "for now," and people don't seem to like hearing that. They prefer the narrative that I've finally conquered my illness, as evidenced by how well I'm doing now. People try to encourage me to be more positive, and that makes me worry that staying vigilant for a downturn means I'm choosing to be overly negative, or ungrateful. Or worse, that my illness has beaten the positivity out of me. I know this isn't true, but sometimes it's a struggle to remember that. So glad you're tackling this topic!
This sounds like an experience closer to cancer to me. a relative had no symptoms but discovered they had bowel cancer after a screening test. Treatment followed including either a colostomy or an iliostomy, I'm not sure which. I wonder whether cancer communities might have an insight that is more relatable in this particular respect?
Totally understand your points. I'm new to all this. Emergency surgery too. I was told mild chrons so didn't even really know what a stoma was as it wasn't a path I ever thought I would go down. Turns our UC and bowel disintegrated. Emergency life changing and saving surgery. I haven't even decided how I feel about the stoma as open wound (left open no stitches or staples) and still not healed 16 weeks on. I feel on one hand the surgeon saved my life and should feel grateful and on the others I feel butchered. Life was better before for sure but wouldn't have life without the bag. Don't want even if poddible a reversal as I can't think of anything else than another operation.
The sudden precipitation of your UC and the need for a stoma is more similar to someone who had abdominal trauma who needed a stoma - a sudden, unexpected change that required an unplanned lifesaving intervention. This is a different timeline than people with progressively active UC who ultimately got a stoma (and got so much better). The difference between an elective or semi-elective surgery and an urgent/emergent one is massive - you absolutely nailed it.
*also, disclaimer - stomas are not made casually by surgeons. They are made to save a life, with long term health and safety of the patient in mind.
The element of choice you discuss makes total sense. So many people got to take control of their before and after and you didn't. People are projecting an easier idea of your before that is not true - people love to do this it's so annoying! Illness isn't always steadily progressive but people hate to admit it and risk feeling vulnerable about their future- which only alienates you and suppresses your real experience!
Your perspective makes total sense, it's valid, own it!
I’m 16 and I’ve had scoliosis since I was 12 and I’ve had two major surgeries to fix it. The first surgery was a success until last summer when I broke one of the rods in my back. I then had to go through the whole process again and in that time I developed really bad anxiety about being back in the state of mind of a disabled person. My second surgery was a success, and it has taught me to be grateful for the surgeries that fix you, because things can go wrong again. I’m still dealing with body image issues as I still have one hip higher than the other and 2 massive scars on my back, and non of this is portrayed in any type of media, but one day I know I’ll be fine.
Good on ya. Having people telling you how you should feel about a medical condition is not fun, especially when it's life-threatening and debilitating (and carrying meds and shit everywhere is a bit of a pain too). I know that feeling when you want to scream them and go "no, actually I'm not enjoying myself having this, thanks very much" but having to nod and smile instead. ARGH! I'm glad this popped up as a suggestion for me, I think it's really admirable that you're very committed to honesty for the sake of opening up discussion for other people and you 100% shouldn't feel guilty about sharing, everyone deserves support, I think that takes a lot of bravery and strength. So thank you :)
I'm also glad I saw this for selfish reasons, a few days ago I ended up in hospital for an allergic reaction, got off lightly though, all I have to deal with is a few pills, but it gave me a fright, and I'm not looking forward to the attitude I'm going to get when the long weekend ends and my family start spreading the news.
If people are insensitive enough to assume your life must be better now with a stoma, ask them if they would like your stoma and you take there healthy colon, that'll make em think.
You shouldn't feel guilty at all.
She said that people who also have a stoma assume that. So that wouldn't be much of an exchange
@@marieantoinettepaddelboot3149 Good point, and your quite right.
I was assuming that in hannah's social circle's she is more likely to encounter acquaintances that haven't had a chronic illness so assume too much without knowing how she feels about living with a stoma.
But yes in some instance's when interacting with acquaintance's who do have a chronic illness and stoma you are quite right she wouldn't be able to use that riposte.
And hannah said people with stoma's there stories are all very different, like hannah said it is really difficult.
I think some people with stoma's do empathize with hannah but misunderstand how she feels about it all.
In any case she should not feel guilty at all about telling people with or without stoma's they are wrong.
I don't want upset anyone esp. Hannah , just trying to help is all.
Maybe it's different in my case since I have mental illness (clinical depression), but I've been stable for a few years now. I remember exactly what it was like when I was at my lowest points and wishing every moment that I could die. I remember that agony and am weirdly grateful for the perspective it gives me. Despite my current stability thanks to tons of therapy, a strong support network, and mountains of antidepressants (that I've been tapered off of for over a year now under medical supervision), I still consider myself to have a mental illness because it can come back at any time. Clinical depression doesn't have to have a reason, unfortunately. I guess I'm in "remission" from it?
My life before depression was great and my life after depression is great, and I'm grateful to be out of the thick of it, but I still wish I'd never been depressed in the first place because it stole 5 years worth of experiences I'll never be able to replicate.
Does any of this make sense??
I've 'had' depression since I was about 9.
I've had the best mental health year of my life.
I feel happy. But I still say I have it because take away my anti depressants and it'll slowly creep back in.
I lost most of my childhood and teenage years to untreated depression and i'll probably be on medication for the rest of my life, but right now i'm in a good space. but i still have chronic depression and i still have to be very careful in daily life to avoid triggers. i get your point about wishing you didn't have depression in the first place, but i can't imagine a life like that. all i can do is try to do now what i couldn't before, and try to live my life in a way that keeps me as happy and healthy as possible
I have a brain disorder that, for me, requires a shunt to drain excess fluid. Right after I was diagnosed I had that shunt placed, and it worked for 7 years with no issue. I would’ve probably described myself as cured, I definitely didn’t FEEL like a chronically ill person. When my shunt malfunctioned, that started a series of subsequent malfunctions, revisions, and a general decline in health that has lasted for years. It was such a struggle going through that transition. I had always known this would be chronic...I never knew it would be LIKE THIS. I have gone back and forth (and back again) through acceptance, denial, forgetting, etc. It’s such a hard thing to settle into, and no one talks about being in ~this~ phase. I really appreciated this video! We’re out here!
Thank you Thank you Thank you for this video!
I'm having surgery in a week! A Week!
My situation isn't an emergency (yet) but my doc says I have no other option then surgery and I have all the feels on what you are saying!
I wouldn't choose this either, and I hear a lot of the same things you mentioned but on the other side. 'Oh you're *going* to feel so much better... you're *going* to get your life back' my problem is my flare has been ongoing for over a year and now coming up to surgery I'm actually feeling better. Better within my own UC experience but still Better then being tied to the toilet every moment of the dang day! Doctor still says Surgery :(
I think "Healthy" is relative to your own experience. I wouldn't' say that you were unhealthy during your 10 year remission. You were the healthiest you could be Within having a chronic disease. And I say not having a flare for 10 years is pretty dang healthy!
Thank you again. Your (UC/Stoma) videos are helping me so much.
Wishing u all the luck with your surgery. You have this in the bag (no pun intended.) Everyones experience is so different so I can't say everything will be great but you're strong and you can do this. I had my stoma surgery 5 months ago now and I'm still adapting to my new life. But I definitely don't miss the pain I went through before my stoma.
Hannah and other you tubers that discuss stomas are a God send, I learnt so much from them.
Be kind to yourself and just take it a day at a time. Wishing you a speedy recovery. Lots of love from a fellow ostomate xx
Benita Habkirk sending you all the, big hugs and good luck with the surgery !!! X x x
As a young person with a chronic disease that resulted in multiple surgeries with a butt ton of complications, I hear you! I really love your perspectives and hearing your thought process when it comes to these tougher subjects. I’m also not sorry I had surgery - it saved my life. But it left me with chronic pain and multiple challenges. It’s impossible not to sometimes long for the days when life was easier. I sometimes see my life as a before and after, as I drastically changed as a person (for better or worse) as a direct result of my surgeries. Much love to you, Hannah. ❤️
Thank you so much for talking complexly about illness and disability. I don't usually comment as I don't have a chronic illness, but I really related to your feelings of guilt as I experienced this when I had cancer last year. As you say, how people respond to treatments/surgeries is complex and while I felt super grateful for the treatment I received last year, how "lucky" I was hammered into so much that I felt guilty about having negative feelings about treatment. Obviously this was a very different situation, but I really related to what you said about people projecting ideas/feelings onto you and how it can feel so uncomfortable. I hope this makes sense, and thanks again for opening up important conversations!
*hammered into me so much
The other thing - I know, giant comment and then I have more to say! - is that I think a lot of us, when we got our stomas, felt like we had a responsibility to be open about it to decrease the stigma. And obviously that's great - you are one of the people who helped me to feel I could cope with this thing! But I think that can have a cost for us because it does make it harder to acknowledge that getting a stoma is not anyone's ideal life change, and it can indeed feel like we're "supposed to" have the feelings that go with being out and proud about it. But we're emotionally complex creates and it's good to see videos like yours acknowledge that.
Firstly I love your style of speaking on the video, you come across very confident, which is something I lost when I had my Stoma.
I was healthy, no bowel problems at all (apart from I had interception when I was 3), then one day I got a perforation from an infected Diverticulitis pocket, again never knew I had diverticulitis, so I was rushed for emergency surgery and woke with a Stoma, my life instantly was destroyed, I struggled every day and it was my wife that was my rock and kept me going, I was promised a reversal after 3 months, which turned to 6 months, then a year and then I finally got a reversal after 2 years when I ultimately broke down to my surgeon.
The minute I woke up from my reversal, I instantly regretted it, that regret lasted a good 3 months, and yes it is still hard as my “toilet” trips and not like they used to be they are definitely more frequent, but I am glad I have had the second chance to live without a Stoma, I have since come to terms and accepted that ultimately I believe I will end up with another Stoma at some point in my life, but at least when it happens, like you say, I will be better prepared mentally for it.
My girlfriend has and I've always been kinda very scared about it being severe enough to warrent a stoma. So thankyou so much for you realism and honesty, it really does help
My mum was a somewhat healthy person. At the start of 2020, she had an issue vomiting after every meal that the consultants couldn’t figure out. During the first UK lockdown last year she got really bad very quickly and I rushed her into A&E. They told her she needed an ileostomy to save her life. None of us had ever heard of a stoma. We knew nothing about the metal and physical adjustments needed. Almost a year on, it has been hell for her. She has to change the bag up to five times a day - very high output and a bad scar situation means her bags leak ALL THE TIME. She’s hoping to have a reversal in a few weeks time but there are big risks with that too. Thank you for sharing about your experience. I’ve been bingeing your videos and it has helped me to better understand the struggles my Mum has been having. ❤️
Thank you for sharing your story. I have had UC for four years but I constantly hear my thoughts tell me you’re not healthy your chronically ill no one understands BUT after about two years of doubt I finally accepted the disease. You are strong and being honest makes you vulnerable and real. You are saying everything most people with out condition think about. I constantly think about how much I wish I could go back and somehow prevent getting this disease but thinking in the past only drives you down unnecessary paths.
I would like to share with you,Hannah,the mixed emotions I have about my eye surgery,necessary to save my sight.In January 2010,I had a minor stroke-in my right eye,which peeled the retina..I was too late in getting to surgery,and even though they repaired the retina,the surgery was not successful-the repair failed after only a few months.Then in 2015,I had another stroke,same thing,left eye.Only this time,it split the retina in 5 pieces! I had to have emergency surgery within 5 days,or it could not be saved,I was told.(something I didn't know the first time,or I would have sight in the right eye now)Fortunately,thank GOD, I found the top retinal surgeon in the country(U.S.) was right in my own city,with one of only TWO yellow laser state- of- the- art machines in the world-the other one is in Germany! It was successful,and still holding,nearly 5 years later! And I can SEE! even if it's only one eye,it's sure better than being blind! BUT-the drawback is,because of the 5-way split,and the welds necessary to hold it together,I lost a lot of detail,and where the welds are, obscures my vision.Not so noticeable in general vision,like driving,but when I try to do close-up,or detail work with tiny objects,which is MOST of my work,it's woefully inadequate and maddingly FRUSTRATING! And,what makes it even more difficult,is that a cataract formed ,due to the surgery needed,and I had to have a new lens put in.I was formerly nearsighted,which suited my close-up work just fine.But the new lens had to be a single focus,and it was geared more for farther range,than up close.Meaning anything closer than 2 feet is blurry now..Plus,with only one eye,and thus no depth perception,trying to position things is almost impossible.And reading is terribly difficult,as well-the letters look like you tore up newsprint,then taped it back together,with the letters all jagged and mismatched.BUT-at least I can see.I was blind for about a month until the surgery healed.And I'm SO glad I am not blind now.ANYTHING is better than THAT! But,it's still a mixed blessing.
P.S. There is no guarantee on how long the eye will hold out-it COULD fail at any time,particularly if I have another stroke.Or bump my head,or my eye too hard.So,I just hold my breath,try to be careful,and take each day as it comes,trying to enjoy my life,and my sight-such as it is--for as long as I can.
Thank you... just thank you for putting a voice to everything that I am thinking/going through right now. Just became an ostomate in January after 14 years of being a "healthy person" with UC. I can't think of a better phrase to describe my feelings about it better than "it's complicated."
Thank you for sharing your complex feelings on this! These experiences are not always cut and dry. And I think it's important to share those complex feelings so others going through similar struggles know they're not alone and so those of us (like me) who didn't even know what UC or a stoma was before your videos, can learn how to better be supportive and knowledgeable about what our future friends, colleges, family members, or even selves could be going through.
3 years ago I was diagnosed with UC. I haven’t been able to control it for 3 years. I had a colonoscopy to confirm the diagnosis and was given suppositories and sent on my way, I’ve been changing doctors and demanding to see a specialist to get this under control because I am struggling mentally and physically. I also have PCOS, depression and diabetes so I haven’t lost weight, I don’t want to go on steroids because of my weight gain and my depression. I have two young kids and I struggle every day to be a mother, no matter what I eat or drink I just get worse. Every time I’m on the loo Im crying in pain because I don’t want to keep doing this, I would love to have my colon remove so I can increase the value of my life and be the mother my children deserve.
Seeing your perspective has opened my eyes to what could happen to me and as much as I wish to be “better” that there is also a lot more responsibility there is with having a stoma, that when I do have my next colonoscopy that what if I wake up and have a stoma.
I feel that before getting UC I was healthy and I would do anything I go back to being healthy again.
Hannah, I think your one of the bravest people I ever seen. I have never had any chronic illness but I still listen to your story as it inspires me to stay positive.
Hi Hannah!!
Your videos have made me feel so much better, and more confident, since my Ileocecal Resection... I went into surgery being told that there was a 90% chance I would have no Stoma... and I woke up 6 and a half hours later with one....
since having him (my Stoma is called Barrie!) I’ve felt really up and down.... some days, feeling lots better, and other days emotionally struggling so much with the look of my new body....
I was very much like you. I felt like a healthy person. And now I constantly look like a sick person...
I’m so grateful that you’re brave enough to voice your opinion.
My surgery is reversible, hopefully, but at the moment, I’m very resentful of my IBD.......
Lots of love and hugs. You’re such a rockstar. I really appreciate you ❤️
The relationship you described with your condition is really relatable to me from a mental health point of view. I think there's a big intersection between chronic illness, disability, and mental health conditions, in regards to working out what your personal definition of "healthy" is. I don't think it's talked about enough. Thank you for this video!!
You have my sympathy so much, and your experience is so valid. I can relate to this, with mental illness. Which is very different from your situation - of course. But some things are similar. Here's part of my story:
But yeah, most of my life I've felt fine and healthy, and then I've had a few anxiety attacks once in a while, which have been bad, but I was stil able to deal with the attacks. But since I started my 20s, I've had a couple of periods where my mental illness has been so bad, so friggin' bad, in a way that has kinda traumatized me. It has happened a few times that my anxity has made med feel like hell for weeks, where I couldn't do anything, including eating, and just had to stay in the sofa feeling so terrible every single second without break. And now I'm better again. So much better. Yes, my life is better again, but I don't really like when people are commentng that, like "You look som much healthier", "Glad to see you're doing well" ++. Because the truth is, I have to live with the fear that I can have periods like that again. Most probably, they will come. And that's become like a huge part of who I am. I'm currently in uni, and I love uni and being a student, but I'm constantly thinking my illness might attack me when I try working a normal job again, and that I might not be able to make the money I need to pay my debts and live a normal life. So yeah, healthy, but at the same time sick. It's there all the time in the back of my head.
I really appreciate this video and your honesty within it. I don’t know if it helps at all - I have Crohn’s disease and had an emergency ileostomy after my bowel ruptured. I struggled with exactly what you talk about, particularly the guilt. The way I dealt with it was I stopped thinking of my life as ‘before stoma or after stoma’ and just allow myself to think about my life. As a whole and as a continuum, my life at 16 and no stoma was great fun and relatively stress free, my life at 18 was painful, horrific and terrifying and no stoma. My life at 19 was bed ridden but WITH a stoma. 20 was healthy, happy with a stoma and at 21 I was healthy, happy with no stoma. Now I am 27, no stoma but really struggling with a fistula, pain and inflammation. I try to think less of ‘before’ and ‘after’ and just take each day as it comes. A stoma is on the cards again and rather than imagining that being the rest of my life I simply think about ‘right, on Tuesday I might have a bag’
Its made a huge difference in my mental health and my acceptance of my chronic illness. I did the same with my medication. I struggled with the idea of injecting every week, but rather than thinking about the fact that I might have to do it forever I changed that mindset and thought about the injection I was currently doing, and tried to remain thankful for all it did for my body. Of course there are days when I get pissed off and frustrated at the fact I have no choice about all of this, but to take it day by day and remind myself of why I take the medication and how surgery/having a bag might help there and then - it really calms my mind! I dont know if this made any sense! Haha! But if anyone wants to chat about it send me a message on my blog - www.sallystoma.wordpress.com 😊 x
SAMEE! I supper from join inflamation for past 7 years, meaning being diagnosed while beeing 15. The thing is, on every day baisis, I feel pretty good but I can’t do certain things and it leaves me feeling vournelable. It’s hard to get used to the new lifestyle and new boundrie for your body. A relief, surely. Knowing that your pain wasn’t made up is helpful, but living among your friends not being able to perform, not so much.
Hannah, don’t get guilty. Everyone wants to feel safe AND healthy and any sicknes is anyones choice. What you said is’t ungreatful. It’s natural and healthy to think (or dream) about being healthy.
I can relate to that. When I was 13 I was diagnosed with Osgood Slater's and then Sever's disease. These aren't actually diseases, but were connected to my adolescent growth spurt. Basically my bones were growing so fast it put my tendons under huge strain which caused pain first in my knees (it felt like when you've smacked your knee on something hard and it throbs for ages, except it lasted all day) and later in my achilles and heels (this was *really* painful. On a bad day just flexing my foot felt like someone had thrust a red hot poker into my achilles and I couldn't even stand up). Most days though I could just about hobble between my classes at school, but not much else. Stairs were particularly painful and I dreaded them more than a Dalek does.
I went to various specialists and consultants who all said there was no treatment, I just had to wait until my growth spurt was over. In the meantime any extra stress e.g. from exercise or a fall would most likely snap all the tendons in my legs which would mean major surgery, being in plaster for 6 months and leave me on crutches or in a wheelchair for life. Osgood Slater's isn't that uncommon and usually only lasts 3-9 months, but all the specialists said I was the most extreme case they'd ever seen by some distance (it's unusual to have Sever's at the same time too) and it affected me for nearly 3 years.
This had a major effect on my life in various ways:
1) Firstly I became increasingly isolated as I couldn't join in stuff with my friends, not just the activities themselves, but also when they were talking about their adventures it was difficult for me to join in the conversation.
2) My mother made it clear how much a nuisance my condition was to her and my father, so I felt guilty about that.
3) I couldn't do PE, but because there were no visible symptoms my P.E teacher said I was faking it (despite me showing him medical notes from several specialists saying under no account must I do any exercise and referring him to my Tutor and Year Head). Every week he tried to bully and humiliate me into doing P.E anyway and would shout at me when I refused (my fear of being crippled for life was greater than my fear of him).
This in turn encouraged the other kids to bully me, most didn't believe there was anything wrong with me. Soon all my friends shunned me too and for the next couple of years nobody wanted to sit by me in class or talk to me. I discovered later they were scared of getting the same treatment if they associated with me, but at the time I didn't understand that and just thought everyone hated me including all my old friends, but I didn't know why since I'd never done anything to anybody. From being reasonably popular I suddenly went to being utterly friendless.
4) Whilst all my old friends were going to teenage discos and getting their first snogs and girlfriends I was at home on my own. I thought all the girls must think me a pathetic coward for not standing up to my bullies (I'd been warned that if I got into a scrap even a mild impact to my knee from a blow or fall could cripple me for life, so just took all the shit coming my way and tried not to react). One girl did ask me out, she suggested ice skating and various other things, even just going for a walk, but I couldn't even do that. Pretty much the only thing I could do was watch TV, not very exciting or romantic, especially with all my family being there too and she obviously thought I was making excuses and didn't like her, so then I felt guilty about that.
5) All the above had a massive effect on my self confidence and mental health which was far worse than the physical restrictions and pain. I was living in constant pain/discomfort, fear of being permanently crippled, paranoid (because everyone *was* out to get me) and suffered badly from low self esteem, anxiety and depression. I felt utterly helpless and alone and became suicidal.
Although my physical problems lasted less than 3 years and ended when my growth spurt finished the mental effects lasted for years and even today I feel like I missed out on a big chunk of the growing up process, especially those early learning experiences of how to interact romantically with girls ( I didn't get my first snog until uni and even then I was nearly 20).
Compared to Hannah and many others my physical problems were minor and only temporary and I'm very fortunate in comparison. And the bullying and trauma I went through is trivial compared to many people's (I know a couple of people, including an ex, who were sexually abused as kids). Despite knowing that, a bit of me still wonder's if my life might have been very different if I hadn't had the Osgood Slater's and Sever's.
The one good thing is that the experience made me a lot more empathetic to other people who are having a tough time and whenever life gets shit I can look back and think: "At least things aren't as bad as then and if I got though that I can get through this."
P.S. Sorry for waffling on for so long!
I have a stoma too. I have Crohn’s disease. My health failed last year. I almost died. I was in remission for years and years too. I am going to get a reversal in the next few weeks. Keep me in your prayers.
Hello Hannah, i have now 3 weeks my illeostoma. I had collitis ulcerosa, i had almost never complaints with my disease. But they found poliepen with cancercells. I understand your feelings because i think also the same. (Sorry for my bad english)
Greets from the netherlands!😘
Hi Hannah, so good to hear this. I've been diagnosed with UC for 4 1/2 years now currently managing with shed loads of medications/treatment. A stoma seems like my worst nightmare and every time I have a flare up I panic like crazy that this is the one! It's nice (and scary!) to see someone speak so openly about what having a stoma can be like. There is a lot of positive things out there about a stoma which I believe are too good to be true!! "Healthy" to me is a day where I complete everything I set out to do without noticing the pain! :)
Hello Hannah, I'm new to your channel but not new to my stoma. I was diagnosed with UC seven and a half years ago and had my colon removed 7 years ago.
Thank you so much for this video and sharing how you feel. My surgery was lifesaving and I am grateful for that but I do miss my pre stoma life.. It most definitely is complicated. I am not going to go into it here but it has not been a straight forward journey since my surgery.
I think your description of your feelings probably is the most 'normal' way to feel. Certainly one of the most honest descriptions I've came across and I thank you for sharing that honesty.
I never comment on TH-cam videos but I feel very passionately about this subject! I have been extremely lucky to never have had to deal with this life changing surgery. However, last year my mother had to have an emergency stoma put in after a cancerous tumour was found on her bowel having spread from her ovaries. The stoma surgery was first of many and throughout she had intense chemotherapy, not only did she feel pain like I’ve never seen, she suddenly had to change her perception of herself, she had a stoma, no hair, she felt like a ghost of her former self. But she was alive and selfishly, I couldn’t even imagine the other option of her not going through treatment and allowing the tumour to spread further. If she could snap her fingers tomorrow and have her past body back I know she would and who can blame someone for that but the battle she she fought has given me an example of true utter bravery. Watching your videos and your journey with a stoma allowed me to be incredibly empathetic for her and taught me about the implications on her life beyond her cancer diagnosis which is usually what people tend to be concerned with first, ignoring the huge impact of self image on one’s mental health. In short, this is your journey, no one can dictate how you feel about it and every single experience is so personal. Nevertheless, my mum is a fucking boss and so are you! 💗💗💗
You most definitely are NOT alone. My stoma literally saved my life because of complications from radiation I received for cancer. I was told that my quality of life would greatly improve. I suppose that is true if the meaning is that I am still ALIVE....however, LIVING is hard and quality of life is almost non existent. I feel tremendous guilt....I mean it saved my life and I should be happy right? But I am socially anxious now...always afraid I will have a leak or strange stomach noises will occur in public. I spend a lot of time alone because of that. It makes me angry and depressed to be honest, as I have always been a strong outgoing and social person. So yeah....I feel ya. Thank you for being so honest and thank you for what you do.....you are an inspiration.
I have recently been diagnosed with UC. The hardest thing is dealing with the unpredictability of it. How I deal with it is that I don't, its a daily struggle with a body thats got no logical cause and effect anymore. Your videos give me hope in the fact that I can still live my life (one way or another) and some days will be good and to enjoy them when they are there.
The most frustrating part of having UC for me is that people do not understand it’s not just going to the bathroom more than other people.....it’s being exhausted as soon as you wake up and having no energy to play with your kids....it’s taking humira injections that cause horrible side effects that sometimes are irreversible...it’s having some family resent your disease because they can’t possibly understand how someone can be sick all the time and ruin plans......I’m still in a year long process of trying to reach remission and hopefully someday soon i will....I admire your honesty about your situation I can’t imagine how hard it is.....i hope things continue to get better for you in the future!!!
First of all thank you for having this vlog and being so honest.
What does 'healthy' mean to me: Days without pain and feeling like I can do anything I could ever do. I'm disabled so I can't and I know that. If I can FEEL like it, though, I'm having a damn good day.
Thank you for acknowledging that we have to deal with the negative feelings. I've been sick for 26 years - diagnosed (kinda) for 20. I remember what it was like not dealing with illness all of the time. Looking back I can see I was always dealing with the symptoms but I didn't know, so I didn't have this burden. Would love to have that easier life back. I remember and I mourn it.
I say this with kindness as a stranger. Have you started on the path to therapy yet? You’ve said you wanted to with regards to the hospital stay but therapy can help with this stuff too. It’s great seeing you so open and honest; it’s interesting to learn from and I’m sure they will be others who can relate and find comfort in this. You will not be alone.
This weirdly reminded me of how I think about my anxiety disorder. Sometimes I get stuck thinking about how before therapy, in some ways things seemed much...maybe not easier. But because I didn’t know what “Anxiety” was I thought that was just how life was, and I didn’t gave to deal with how my brain was fucked up?
And now having to make the effort to see my therapist every week, and take medication, and continually work on how I’m thinking about things in order to be “healthy”...I think I have a tendency to think about my “past” life like you described as being “healthy” even though I always had an illness. It was I guess maybe “in remission” in some ways.
Obviously not the same thing, but this video helped me to think about my chronic illness in a new way. Thanks Hannah! :)
This makes me weep. In short, I had cancer, now I'm cured. The world thinks my life should be better, they don't know my life. Thank you.
I just want to say thank you SO MUCH for sharing your life in such an honest way!! It’s helped me feel more comfortable on all the emotional rollercoasters that come with chronic illness.
My nine year old daughter had emergency three weeks ago and now has an ostomy. Your videos have given me so much insight and it's helped as I'm helping my kid navigate something I know nothing about.
Thank you for telling us what's going on with you. I am going through a similar experience with people assuming I should be feeling better but I'm not. Friends, family and doctors all say it to me "you must be feeling better by now."
As far as dealing with guilt... I'll let you know when I learn how.
Thank you for another great video. Thanks for making me feel normal for a few minutes. 😊
I fought like a wild animal for nine years to avoid ostomy surgery. Fed up with the pain and loss of freedom, I gave in 4 weeks ago. So far, the result feels like about a push. I still have the pain, constant bloat and gas, and have having a rough go having a bag of waste constantly glued to my belly. It's still early and I'm not giving up, but the challenge is still to improve the most troublesome issues. Great video and very helpful topic.
Don’t be afraid to share your experience. Don’t be afraid to disagree with what other people say. Don’t be afraid of offending someone by giving your account. Be honest with yourself.
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I completely understand that feeling. I'm type 1 diabetic and was diagnosed in my 20s. I went from running marathons to being suddenly ill. I had about 6 months of being very ill and doctors not thinking it was type 1 because I wasn't a child. Finally when I was diagnosed, I was able to be put on a treatment plan with insulin and medical devices. I'll always be grateful for insulin and my devices, but my life isn't "better" now. I'm healthy, but I'm also chronically ill and nothing foreseeable will change that.
My uncle got misdiagnosed with type 2 diabetes when it was really type 1 late adult onset diabetes. He was in his late 40's, so it was very rare and his doctor couldn't imagine type 1 for a person his age, so he was treated with metformin, which is for type 2. He died from this tragic misdiagnosis.
Also this was in the early 2000's in the US so there was no financial help for people without medical insurance. He had to pay hundreds in cash to even see a doctor and the doctor he went to knew nothing of this rare type of diabetes. I always tell people about this form of type 1 diabetes because, just like you went through, it can take months to diagnose as many doctors know nothing about it. I'm so glad you finally got the correct diagnosis and appropriate treatment. At only 20 I'm surprised your doctor didn't consider type 1 right away.
I've only recently become aware of your channel and those of the "Squad" and I am devastated to learn of your illness. I am a partner of a woman who had colorectal cancer …. who nearly died of sepsis before her stoma (called Stomy), and lived with her stoma for nearly 4 years while she battled the secondary cancer. She passed away recently. Although you don't have cancer (thank fuck for that), your journey is still a battle and the stoma is a constant annoying negative reminder ……. yes, you are living your life differently, but you are doing an incredible job of publicly documenting the process to relieve the stoma stigma. I know of some of the trials and tribs you are going through and wish you all the best.
This is so important and valid. I've only ever known surgery from 1 years old and that's why when people ask me that question, it never really makes sense because how do you compare to what you don't know? All I know is I used to be in pain daily, and I'm not anymore so THAT is why my life is better but would I choose to never have had a surgery or my scars, who knows? I will never know the other option, I don't know who I'd be without them and frankly, it's a waste of my time to entertain that idea because it will never happen. That guilt is really common - survivor's guilt, and you don't have to always be grateful! You can also be grateful AND angry about it! xx
I've been disabled my whole life, so I can't really relate to "being better before", but I definitely understand the feeling of feeling guilty over preferring an "easier" life than what you have at the moment. I feel that people who don't have that feeling might misunderstand and think that it means you're ashamed of being disabled or whatever it is you have, whereas, with me at least, it's just that I would prefer a life with less difficulties rather than more. I'm still perfectly happy being who I am, but I if I had a magic button that would make my life easier and with less hassles, then I'm pretty sure I'd press it.
I know what you mean. I was “healthy” for 24 years of my life. I’m disabled now and I am struggling with changing my state of mind. I’m still expecting to “get better”.
-I am in the same boat. Almost made it 20yrs before my Stoma Surgery. Chrons Flair's was my only issue and they mainly happen bc I burned myself out. My surgeon made the comment that I was heading towards the stoma surgery tho. So I kinda braced for it. I do feel like I have chrons now that I have my stoma haha. So I understand your point. But you are right, we all process things our own way. And sometimes we know the "step" in life is best but it's so hard to make it. And after, we still question things. That's just being human 🙂 My therapist has deff helped me with my journey and grasp "I didn't lose" I just gave myself a shot to be better in every way. So I hope you find comfort. Sending you the best energies, Hannah ❤️
Rewatching these videos because I had a patient crying so hard today, because the day before yesterday she had surgery to create a stoma. It was emergency surgery after months of being unwell, and she’s heartbroken. She feels like a different person. She feels like she has something disgusting now and she’s grieving the person she was before, and I didn’t know what to say to her. Everyone kept saying to her “but you were so sick before, isn’t this better than dying?” And things like that, but i just think it’s so important to validate her emotions here. Her life is going to be different. And sure, she’s grateful she didn’t die, but this is still a reality she has to deal with now and it’s hard to know what to say to people to validate their feelings without reinforcing their negative self talk. So… im back watching these videos that I haven’t watched since before I even started studying nursing 😅
Thank goodness my symptoms improved SO SO much since became plant based( vegan) i used to black out on the loo in pain which isn't great when you are already disabled like myself, i am super blessed that my diet adjustments stopped having severe daily symptoms with hardly any let ups from the age of 21 until aged almost 51! sending you love and strength xxx
I can relate. As a surviver of a deathly brain aneurysm I never had any health worries until I got diagnosed. So, when I look back I don't think my life is better now but I am alive and I grew from it so yeah I am very thankful to still be here and be pretty much healthy again. It was a tough couple of years but life is worth having to deal with a little bit of extra baggage.
I wouldn't change anything about it though. It made me a better person.
I'm someone who was put in the position of fighting to get surgery on multiple occasions and feeling temporary relief after, but I still romanticise the period of my life where I was "healthy". Only, I wasn't actually that healthy I was just able to be more active. It's something I still have to work on, rethinking and reframing how I term healthy for myself. It's something that's so variable from person to person, I don't think there's one box fits all for healthy (aside from some basics like heart rate etc.) So a lot of my reframing is to kinda avoid comparing my health status to other people's? And finding disease specific support groups. I joined a FB group for my region and that's helped a lot to hear the diversity of experiences with my disability
It doesn’t matter what other people think or say, Hannah. Your experience, and how you deal with it, are unique. There is no right or wrong, so no need for guilt. You have the right to deal with this emotionally in the way that seems right for you at the time. However, acceptance is wonderful. I have been disabled with ME for over 10 years and have had to deal with a massive loss of “normal” quality of life compared with before, but I now do different things. Once you get to the stage of acceptance, you can move on and it doesn’t matter to you so much. Meantime, you are as you are, and nobody has the right to judge you for that! I think you seem to be coping very well, and your outgoing nature and honesty in sharing will stand you in good stead. Bottling stuff up is never the answer, is it!
Thank you for this video. The accepted narratives about illness pretty much all fall apart when you have to live them for more than about five minutes but people writ large still fall back on them because they're all we've got in a lot of cases. For me, I had a life-threatening illness at age 4, so don't remember that "before" time when I was a healthy person, but, after having gone through 6 years of treatment, I've been cured for almost 20 years. It took ages to think of myself as a healthy person, in part because the treatment I had to have can have serious medical consequences decades later, and because the enormity of what happened to me left me with pretty serious PTSD that I'm still working through. So when people are like "oh well its so good that's all behind you now" I don't know what to say, because it still has an enormous presence in my life.
Hi Hannah I have only watched the first minute and already want to say thank you. The overwhelming amount of positive inspo vids pissed me off for two years because I simply couldn't relate. I wasn't there yet and maybe never would be. I just needed it to be ok that I wasnt ok. I'm just here to say Hooray!!!! Nothing else x
Honestly Hannah, how you feel is OK! It just is! We all have different reactions to things. (I'm also willing to bet those positive testimonies from people whose lives were changed by their stoma, for the better, still have times where they aren't really coping with it emotionally and just struggle with it!!) I've been ill with multiple chronic malarkies for 23 odd years now and I have my ups and downs that's for sure! But noone has the right to make you feel like your experience, your feelings, are less relevant than someone else's! Because they aren't. I can tell how hard this video was for you and how emotional you were, so I think you were really brave to make it! Hang in there. And keep being YOU!
Thank you for talking about this openly on your channel! My mom has cancer and got an ileostomy to help with her recovery. I’m her caretaker and it’s been a really amazing learning opportunity. Very, very stressful, but I’m going to have a lot of really funny and gross stories to laugh about later.