What Chronic Illness Has Taken From Me | Let's Talk IBD
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- เผยแพร่เมื่อ 30 มิ.ย. 2018
- I am usually very positive, but in this video I talk about some of the ways my illness has held me back.
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My chronic illness has taken my job away and has changed my family dynamics however, it has made me more compassionate to others. It also has made me appreciate the little victories in life! Take each day and find the good in it!
I was diagnosed with endometriosis when I was 21, after 9 years of struggling with it. Endometriosis is something that I never knew anything about, only knew that I experienced debilitating pain every cycle, and was told that it was normal, which made me feel crazy. I got married at 20, and my husband is who made the push to find out what was going on. I would be up all night, crying, couldn’t get comfortable, etc. Now, I still have pain but we are able to manage it and I have learned to cope with it. I got out of an industry that was physical and into a law job; and we have a great life. It’s not always easy, but I am grateful for the diagnosis(finally) and support I have.
Maggie, I must tell you, I consider you a heroine. You have surmounted many countless waves that were against you. You fought thru the wars, in the thick of it being in a battle for life several times from what I have viewed. I have watched some of your latest vids, but I never watched anything prior, till now. You have someone that stands behind you, and you and he, are now enjoying the times of your lives. I am a praying man, and I do pray that God will Bless you and Zak for many, MANY long years to come with health and with the strength you have shown in these vids. You and he, have got ahold on true love. Don't ever lose it, nor take it for granted. Give God the praise for it all, and always be found doing whats right. Once again May God Bless.
I love your videos and watch you all the time. Maggie you are an inspiration! I am 67 years old with UC... it was dormant for almost 47 yrs. I will probably have resection surgery this summer, I have a few stenosis, five of them , also on entevyo infusions. I am trying to learn everything I can about my disease, so I can live my best life.
You're so brave Maggie!
I have been suffering from severe UC which has affected my school and social life
I missed alot of school and important exams
Everyone wanted to know what was wrong with me but I didn't want to tell them but they pressured me. They asked me why I had a toilet pass, why I went home early sometimes, what was my medications for and why I missed so much school.
The stress of that and school work was causing flare ups when it got to the point I didn't go school for most of the year, so I became home schooled which was better for me.
It had affected my social life a lot, I used to be out and about all the time but now I didn't want to leave the house or talk to anyone else
So anyway, after a massive flare up where no medicines were working, i got an ostomy
I think it has really improved my life and self esteem (despite the fact I have a bag). I go out more, don't have to worry about making sure I always have access to a bathroom and extra underwear with me incase of accedents.
I feel so much more better within my self, no medications to worry about...
But I am glad I have this illness (that sounds weird) like you said, I wouldn't be who I am now without it, I don't know where I would be!
Btw Maggie, you look beautiful without and with make up (not scary!)
And your make up looks great (Im rubbish at make up lol)
I'm so glad u are posting lots of videos lately!
Thank you :)
Nocturnal at night I just got diagnosed with UC, and I am currently taking medications for it. They aren’t working so I might try IV medications soon. A few months ago I had to miss 2 months of school because of a flare. When I came back, everybody was asking me questions about what happened to me and where did I go, and all that stuff. I’m hoping my IV medications will work. I don’t know how I feel about about having an ostomy. But after watching videos about it, and reading your comment. I feel much better, and hope for the best.
Alex Salinas Aww thank you :)
UC isn't all bad, it could be worse, so don't let it put u down!
And if people are asking about u, u don't have to tell them, u can if u want but it is your personal information and u have the right to tell or not tell
I think UC has improved me as a person I have become more grateful and look after myself property
This is weird but I was more scared to have infliximab than an ostomy but everyone is different
Having an ostomy is not bad it doesn't limit. I like to think it as a solution rather than a problem
Good luck :)
I was severely socially delayed and still am to an extent. When I was 14 I was 4' 10" and my weight was probably like... 70 lbs. All my friends were dating and they were significantly more developed physically than I was. I was homeschooled throughout most of middle and high school as well. There's no way I could've survived that physically or mentally. I became so withdrawn and detached from my friends over the years that I was isolated until I was finally diagnosed at 16. After that, I went on remicade and puberty hit me like a truck. I grew so fast that my spine's a bit curved from it. They said I wouldn't go above 5' 5" but here I am at 5' 10". Still can't gain weight though. Maximum I've ever been is 122 lbs. The problem is that I never integrated back into my circle of friends that I'd withdrawn from. Even when I try to meet up with them now, it's like talking to aliens. I've made some great friends since then, but they're quite far from me and they're very few. It's also really hard for me to be in social settings. I can talk to people who are 10+ years older than me with no problems, but people my age? Nah. Basically impossible. I've never had a girlfriend because of this. I've tried, but I feel like I'm not physically up to par. I'm told about how "great of a guy" I am but nothing ever pans out. It feels pointless even trying anymore. Another thing is work. Luckily I'm able to work for my dad so I'm not in fear of being fired because of Crohn's. But it's not consistent and not enough for me to support myself fully on. I'd love to be able to make enough money to provide for a family but that just doesn't seem even close to being a reality right now. It also completely ruined college for me. I was able to be dual enrolled while I was in high school and I actually took a year of college courses. But I was in the hospital getting diagnosed with Crohn's when it came time for the next semester to start. So I got fucked there too. I'm still on a rollercoaster in terms of finding out what's going to help me. It feels like I'm constantly thinking about my health and never finding relief. I'm almost 24 and I feel like so much of my life has just been lost. There are so many basic things that I want in my life that are so far out of reach. It's destroyed my motivation. I can barely even make dumb TH-cam videos anymore. This disease has done nothing but take from me. It's incredible that you're able to have such a positive outlook despite everything that's happened to you. I wish I could be more like that.
My CROHNS has made my life endure many ups and downs.The best thing that happened to me is when i got my illiostomy.Ihave not been as sick as i was prior to my surgery.Iam also on STELARA one shot every month.thank God for good insurance.the price for this med is crazy but it works.You are an inspiration to every person that follows you.KEEP UP THE GREAT WORK .THANKS BERNIE FROM THE UP OF MICHIGAN.
I subbed you awhileback and watch This video made me really think and touched my heart. You are such an inspiration. Were an older couple, hubby is 65 and in 2015 he had a colostomy after suffering with stomach issues.He almost lost his life and they didnt really tink hed make it thru surgery. He is here today and still recovering. Im so thankful for the surgery and the outcome. Ive learned a lot and learn from you. You are a remarkable young lady and I wish much happiness and health to your love of your life and you. I can only imagine your family is very proud of you and Im glad I found your channel.. Please know its a pleasure to meet you and you are a inspiration God Bless Phyllis from northern Wisconsin
Great video Maggie! I love the perspective you gave to it. Your story is captivating and you are so strong!
It is really good you have this channel especially for the people who struggle with Crohn’s disease. I am in my senior years and when I look back there were definitely surgeries etc and even now I have to take meds to control how many times I go to the washroom. But I have a wonderful caring husband who stands by my side even during rose “crappy” days lol. It is hard for people to understand the nature of the disease and often I get asked welllll what did you eat that made this a bad day. It doesn’t matter what I eat just some days are like that so I just smile and continue on. This has made me strong and I enjoyed teaching had my own business (that allowed me to pick my own hours and also worked as a secretary. So those of you who are young just keep on going find a doctor who is supportive and such. Take care ❤️
My heart goes out to you when hearing what a rough time you had at a vulnerable age. You have bloomed for sure ☺️💕
Thank you for sharing this personal side of growing up with a chronic illness. I have a different life-long illness and can relate to this on so many levels. You're a remarkable and very strong young woman!
I love this video. I have been dealing with Crohn’s disease as well as colitis for over 40 years. And I still am not as comfortable with this mess as you are. You are a very good inspirational person . Thank you. Keep well.
Loved the video!! For me I would say the lack of energy, skin issues that come with my Crohns/meds (which totally kills my self esteem/body image) and just all the freakin medical bills are the worst part. But like you, i’m thankful for my illness because it has shown me new perspective on life and what matters.
I love this video, love you & your bubbly-self :D I have chronic pain with Fibromyalgia & Ross River Fever (sort of similar to Lyme) I am still trying to pull myself out of the big black hole I fell into 4yrs ago.....but watching other people with chronic illness makes me look forward to when those crappy days get just a lil bit better, when I can embrace my invisable illnesses more and feel more normal & like the old me - and watching you, you are awesome & give me inspiration :D TY :) Wishing you all the good days!!!!!! SUBSCRIBED & hello from Aussie!!! xo
I loved listening to you talk while doing your make up. It’s like being with a friend. You are such a bright light girl. Much love from Atlanta.
Thank you for sharing your diagnosis story! I currently have a chronic illness and was diagnosed in 2019. Just taking things day by day and praising myself for the small achievements in my life
I was diagnosed with Crohn's in 2012 when my colon perferated. I lost my job and have been unable to work in my field since(I was a steel worker) and it is always a constant struggle of being a burden and being inadequate. Your videos are awesome, you have a good thing going. 👍
You made me feel positive about getting my ostomy. You helped me so much.
Living with chronic illness definitely isn’t easy. Stay strong! You are beautiful!!❤️❤️
Maggie you are such a role model! I actually don’t have IBD but I stumbled across your page years ago, I think it was even before I got sick with chronic illness. I have a rare neuro disease called Reflex Sympathetic Dystrophy aka Complex Regional Pain Syndrome and POTs (Postural Orthostatic Taxhycardia syndrome) Which they classified as Dysautonomia. such long names! I was a cross country and track athlete until spring of my junior year of high school. I also missed junior prom, I was in and out of the hospital and searching for a diagnosis at the time. I honestly don’t even remember missing it, I was in so much pain at the time. Basically my autonomic nervous system shot crap and attacked the nerves/nerve processing in the brain so my brain thinks that there is constant trauma to my left leg, hip, and foot as well as my abdomen and back and then my right foot lower leg and hip. I have had 10+ nerve blocks, 1 IR procedure and 3 surgeries so far. I can’t walk anymore, I can use forearm crutches for short distances but need a wheelchair for long distances, especially because of my POTs because it causes my heart rate to spike and then I pass out. It’s crazy how much my life has changed from the athlete I was and had scholarships waiting to the sick person who could barely get out of bed. I always wanted to be a nurse or physical therapist but I can’t do those things because my situation. I was so much like you, very tiny for my age (I turn 25 this year 5’6”) And I’ve never dared to this day. I graduated last year with my BA in communications but I haven’t been able to use it yet. I’ve had so much going on with my health I haven’t been able to work. I did volunteer in hospice care in college and really found myself and made amazing friends. I have had a few interviews and they have gone great, I’ve just been too sick to take the jobs. Thanks for putting your story out there. You have been a wonderful role model to me even as we battle different diseases.
I have Ehlers-Danlos Syndrome, and unconfirmed superior mesenteric artery syndrome. I say "unconfirmed" because my now former GI refuses to lay eyes on the CT scan. But, my GP is fantastic! He didn't know ANYTHING about Ehlers-Danlos before me. Now, I've opened a world of research for him. He dove in head first! I lost my career because of my illness. But, I'm finding new things that I enjoy doing with different media's. Like alcohol ink, acrylic paint...I can only sit a short while, but it's worth it.
i've had crohns for 4 years. I was diagnosed 1 month after I graduated high school and am happy to finally be working on my career of becoming a nurse. However, my disease is still very active and debilitating. I am likely going to have a temporary ostomy surgery in August and I am so terrified, but i feel a little less scared having found your channel, so thank you
I was seriously surprised about the licencse thing...in germany... i am the only one of my friends with a car. oh no, one other too, but its more normal just to use public transport. And its expensive!
I like how your live has turned around, i have terrible anxiety about being ill, especially after a horrible hospital episode. Right now i caught some...stomach bug idk... and i had a time with really bad stomach issues and being in need of a bathroom all the time IS SO MUCH STRESS. and now i hope the bug just goes away and i will not develop any serious things.
Its funny though... some of the most terrible things in my life too made it possible to be the person one is today and that is awesome. There is no light without shadow.
So proud of you honey ❤️
You look great with and without makeup. You have a great spirit touches people's lives 👏 ❤ 💜
I am also quite small. I'm 4'11" and 100lbs. I love your style! Would you consider doing a video on where you get your clothing and how you style clothing for your body type? There are quite a few of us that are very small because of illness or other reasons and struggle with finding clothes that make us look and feel good. I know fashion isn't a main focus on this channel, but it's something that you do well and your experience could help others find clothing that makes us feel more like real people. ❤️
school and travel most definitely. iv'e been sick since elementary and would miss weeks of school at a time. i remember home health care coming over after my ostomy surgery and the nurse saw my diploma and was so shocked that i was able to graduated high school. it's hard to hear about my cousin (who is graduating this year) and his amazing finale year and all the things hes involved in, because when i was in high school i could barely show up 3 x a week let alone participate in any school activities. travel is another thing i could never do when i was younger (luckily i live in Canada so it wasn't because of medical bills) but because i was just to sick to do anything while on vacation.
my ostomy has given me back my life. i remember my dr. saying he had patients that never wanted a reversal because their quality of life has improved so much. before the surgery i just thought that was crazy. 2 years later i completely understand. i was able to go to Germany the summer after my ostomy with no worry of always knowing the closest bathroom, odd dream to have but it fulfilled a dream i'd had for as long as i can remember. thanks to my ostomy i've traveled so many places i never thought possible and have been able to reclaim my life.
sorry this is so long, but i always try to think about the bright side and this video really made me think, thank you.
Thank you sweetie I my self have been dealing with it since 87 si I understand completely .
My dear Maggie, I don't know you but I watched your video, I don't know if you ever get fully better so I paused it for a while and it seems like you go into remission, thanks be to God I don't have it but it was sad to watch, as I said I don't know if you will ever get better of it so pleased God you will, find you a very beautiful young lady and a truly wonderful person, I know you have a partner in your life so I want to wish both of you a long and very happy life together and please God Il hope you will recover from it. May God bless save and protect both of you always and forever I want to wish both of you every happiness in the World I don't know what more I can say or wish for both of you, it was a very moving video, I think anyone who see it would have to say it touched their heart. God bless both you always and forever and have a great life together.
This past year I was studying agriculture (vocational studies), because I wanted to be a veterinarian and they had a program for that on the third year, so I could go to NMBU and study. But there is a relatively new thing in Norway, where if you have more than 10% (15% for chronically ill) absence in a class, you won't get a grade. Guess who ended up with 85 total days and 41 hours absence. :)) Two months if these days were for my surgery, and the time after tho. Most of these days were planned, since I told my teacher that I didn't want stay at that school anymore and she gave me an alternative plan. Now I'm going to study health the next year, and I'm planning to become a nurse instead.
I’m a high school biology, chemistry and physics teacher, and I have Crohn’s disease too. I’m not as severe of a case as yours is. I’ve only had one resection, and no stoma. I’ve had many other health issues over the years, heart, asthma, maxilliofacial issues.
I always tell my students about my crohns, and they’re amazing about when I have issues. As I tell them, I choose to make it a good day, I could whine and complain, or make bad jokes about it and carry on.
Maggie is also a make up artist. Love her video as a cute, brave, loving and open girl. She is my role model as an ostomate.
Nothing much has changed after makeup. You look beautiful even without makeup.
Enjoyed Maggie you look soooooo pretty 😘
I was diagnosed with crohns back in 2006. I am 34 yrs old and had my first small bowel resection surgery on june 26th 2018. I know exactlt what you are talking about because the past year and a half i did not have a life because of my pain.
Loved this video! :) I was diagnosed with crohns at 13 and had to miss a lot of school however I did a lot of work myself at home and passed my exams to go on to do a law degree. Luckily my crohns was quite well under control from the ages of 15-23 on infliximab/remicade. I also had a baby while on remicade at 21. Now at 24 I've just experienced my first proper flare up since before starting remicade. Due to this flare up I've missed a few months of Uni and so will have to go back and re-do some of my law degree next year . I think having crohns has made me a lot more motivated - if I'm well enough to do something then I want to do it and get as much done as possible as you just don't know when your next flare up will be... I'm sorry to hear about your mum, my dad died when I was younger so I can definately relate to the stresses of having one parent on top of crohns disease! not easy xx
Lucy James Wow you had a baby! When I was diagnosed I thought it would affect if I could have children or not. I am still scared but I'm glad my illness does not affect it :)
Good luck to you!
I think the difficult part is no one knows if they can get pregnant until they do get pregnant (not just people with crohns, but anyone could suffer with fertility issues). I had to do some things differently because of my crohns such as stop taking my infliximab in my last trimester of pregnancy, I was told not to breastfeed and also I had a csection. But it is good to know that with some adjustments it can be possible for people with crohns to have children
It was just me and my dad too when I had surgery as my mum had passed away. Dad helped me with bag changes at first too.
I had ulcerative colitis and now I have a j pouch and still deal with some diarrhea. It's really rough I totally get you. I was diagnosed at 15.
I became a certified nutritionist to help others get the best nutrition to make their body work properly, because I believe everybody deserves their dream life.
I'm so thankful I found you. I have a different chronic disease but have found your stories so comforting. It so hard to feel alone.
I didn't get my license until after I graduated from High School. Not due to illness, just my mom not letting me get it. So I always had to depend on friends too.
I was diagnosed when I was two! Yes, two!
Juliana Goolsby my grand daughter was at two as well. She was sick since birth. It breaks my heart that I may have passed it on.
Chronic pain has affected me in school in my social life and getting my ls ti drive but have come a long way
I think you are lovely!
I’m 21 and in May I was officially diagnosed with Crohn’s! I was super sick from Christmas through January and lost 10 lbs. I got my colonoscopy in April and they confirmed I have Crohn’s in my illeum. They want me on steroids and immunomodulators but at this point I’m doing ok. My parents and I are worried about medication so I’m going the holistic route. Trying CBD and other ways. I eat gluten and dairy free already. I’m 5ft 1 but I’m 120 lbs haha.
Rhiannon sings Aww, good to know you are doing ok :)
I also did a paleo (gluten sugar and dairy free) diet and it really cleansed and detoxed my body, I felt so fresh, energized and heathy!
If u do have the medication I am sure it will all be fine, I was worried the first time I had medication as well, it's normal to feel like that!
Good luck! 😃
What did your Mom pass away from? I'm sorry to hear she passed away when you were young. Thank you for sharing your story.
Hey Maggie, greetings from Finland. I've had a total colectomy done in january and everything has been going quite well. I'm due for a reversal surgery to IPAA some time this year. I was wondering if a person with colitis who has had his colon removed can use ibuprofein? I've not been allowed to use it before the surgery because it caused bloody diarrhea, but since i dont have my colon anymore and i am practically colitis free, can i start using it or should i refrain from using it and consult my doctor? Thanks :) your videos gave a ton of info which helped me manage my ostomy in the first few months.
I am so entranced by her amazing bravery in all that she has endured but I am somewhat confused about where here birth family is..... where is her mom and dad.??......where are her siblings..???? Where is her younger support system?.. so concerned because that piece is vacant
I'm in the middle of a huge flare and diagnosis...i went from doing a masters degree and 16hrs working to 6-10hrs work 😔 not sure what the outcome will be but I'm hopeful
Chloe Rose Hope all goes well! :)
Nocturnal at night thank you :)
I just completed my master’s degree on Thursday (pure math) despite a two-year ulcerative colitis flare and multiple hospitalizations/complications. You can do it!!
Just discovered ypur channel. Why are you wearing make up? You're so beautiful - big eyes, nice thick eyebrows, amazing skin...
Because I like to and enjoy doing so
@@LetsTalkIBD well, i guess that's fine. Whatever makes you feel comfortable :) But you really don't need it. Soooo pretty!
Was there an odour? I often feel gas escaping.
Tell us exactly how you were sick during those teen years.
The short version is. All I wanted all my life was to sing . I sang in the church choir for years . At 13 I took serious bowel problems. At 17 diagnosed with chronic crohn's disease. I thought I would never sing again as I just got more sick by the day . I had a bowel resection, after it I was getting worse, then more surgery, then I went incontinent, then had an ileostomy, a year later a refashioned ileostomy. Just like you I had lots of leaks from my rectum. A year later the rectum and the rest of the colon were removed. After that the left kidney was removed. I got mentally very down . A nurse ask me If i could do something special what would I do? I said i want to learn to sing Opera. She said ok , do it. I found a music college, went for the audition and was accepted in after i had sang 3 songs. 1 . ON my own. From les miserables. 2. I Dreamed a dream . Les miserables. And 3. Panis Angelicus. In college i done so well achieved the soprano voice i wanted . After 3 years of going I started to take sick again with dehydration and was getting tired. I was diagnosed with hyperparathyroidism. I got a surgery for that . After that the ileostomy went so much I got very I'll and ended up diagnosed with intestinal failure. In saying this I haven't lost my singing voice, I could one day go back to college and do a degree but for now . I will learn about Crohn's disease from you Maggie, as I have never been told much.
To
You are cute as a button without makeup.
Financial burden. That's why Medicare for All. Itcwould have been FREE.