I had my bag removed in April. I came back to thank you. You're one of the bravest people I've ever come across. This process isn't easy and I needed someone honest and open. Thank you, that's all I have to say. Except I'm cancer free now 1 1/2 years. All my best, Tom.
First off i want to start out saying your videos are amazing and your great. I'm a new ostomate, and you and others going through it have helped me more than any doctor. That being said, I died when you opened the video talking about the music complaints while actually drowning out your voice with the music, lol. Thank you for the laughs. You know there's a lot of rough days when this is all new. People like you help us so much. Regardless if you're still making content or not. Hope all is well and you're kicking life's ass just as you were in this video years ago. God bless
I ended up with an illeostomy as a result of colorectal cancer, had the bag for 18 months and everything has been reversed. I've watched several of your videos and know they must help people get through having to live with the ostomy. I personally was scared, angry, depressed but managed to get through it. I think there should be more support groups out there for people having to go through this, it's not easy and takes some major getting used to. Thanks for your videos, they certainly helped me.
You're an outstanding Ambassador and advocate for people with ostomies. You'd make a brilliant Wound care and ostomy nurse, so enjoy the study getting there, because you already have the other attributes of great communication and natural empathy.
Hey Anton you are very brave my friend. When I was 13 I had already had over 20 procedures and I know that can be hard on a teenager because you are trying to find yourself anyway! Hang in there man, you are not alone I promise!
I want to thank you for all your videos. You helped me get over my squeamishness regarding ostomies. My son's colon was killing him and we both had a hard time facing up to his eventual surgery. I made a point of learning everything I could from you and other ostomates. Because of that, I was able to advocate that he get an ileostomy....and it saved his life (he was close to dying). You guys/gals are wonderful and you helped save my son's life. I am eternally grateful and wish you all the best.
I just wanted you to know that after watching this video and several others I felt very prepared for getting my Ostomy 4 days ago. I am sure you hear this all the time how much you help. However, after getting surgery and No ostomy nurse came to see me the first day, the second day and after begging saw a back up and her trainee one hr before discharge. I was very prepared by you and my first change went smoothly and I was complemented how well educated I was. I gave all the credit to my first actual Ostomy nurse, Maggie. Thank you for what you do.
I'm about 5 weeks out from my total colectomy surgery. In January I found out I had something called FAP(familial adenomatous polyposis) which is a genetic condition that has a 100% chance of eventually causing colon cancer, usually around 38-40 years old. I'm 22 years old. When I was diagnosed(with no family history) I was given approximately 2 years before I would develop cancer. I had my surgery on April 19. Two weeks prior to that I spent a week in the hospital for a severe increase in pain which as a first responder I could no longer work because of it. My surgeon said I was fine and didn't bump up my surgery. Surgery day comes and due to a physical deformity I didn't know I had, my laprascopic surgery turned into an open surgery. All of my organs were completely in the wrong place in my abdomin. My intestines were actually formed around my spine instead of more in the middle/up front so every single abdominal organ had to be moved around. On top of that, i woke up in the ICU without any feeling in my leg. Thankfully I was barely able to move my toes so fear of paralysis was slightly lowered. It took a few days but I could finally feel my legs again, however my thighs are still numb and my left calf is extremely sensitive(touching it lightly causes extreme pain) so there's still lingering nerve damage but at least I can use them. My recovery time is doubled because of the complication with surgery and I spent most of my recovery in and out of the hospital anyway. Four hours into my first day back to work and I'm taken by ambulance to the hospital again because I couldn't breathe and my chest hurt. My entire neck and chest cavity was full of air(outside of my lungs obviously) which I found out is extremely life threatening. I was too scared to cry because I thought if I did I'd trigger everything and die. Another week in the hospital and the air finally started going away. They never found the leak though. Now I'm still not in work, I'm not allowed to do anything but walk around, and I have several hernias trying to form under my main incision. I'm having stoma troubles too. My stitches won't disolve at all and I've got something called granulomas forming around it that ruin any seal I have. They're not being treated yet. At my follow up my surgeon also told me "Oh by the way, we actually did find cancer in your colon. But at least it's out now." Like it was nothing. I'm only one month in but I'm so over it all. Some days I literally just want to cry all day. My only solace is that in August, assuming my bottom has fully healed, it will be reversed. I don't have the heart or willpower for this and I commend everyone who has ostomies/these surgeries for years/life. I'm sorry for the long whiney comment, I just wanted to say that your channel and others like it have helped me a lot going through this. My grandmother was an ICU nurse but even she doesn't know much about ostomies so she's been helping me learn. My husband's got to be way stronger than I'll ever be for putting up with me though. Thank you all and good luck and health
Wow, what a story. It sounds like you've been dealt a crummy hand of cards to say the least. But hang in there, I don't have an ostomy, I'm just researching it because I have a concern with something that is likely just a hemorrhoid, but Im still worried, seeing the doctor in an hour and a bit. But you'll get better, and think about how awesome it will be when your ostomy can be reversed! You sound like a very strong young woman. Keep on keeping on! (:
I figured I'd give an update though no one asked 😂 I'm doing relatively well. I'm having nuerological issues that they haven't quite figured out yet but it's being managed. I was in a rollover in March and walked away with cuts and bruises luckily. I've been back at work for almost half a year although I'm temporarily out right now due to a concussion. Needless to say the punches seem to keep on rolling 😂 but we're getting there. I had my ostomy closed and now have a semi-normal functioning digestive tract sans colon and rectum which helped a LOT. I really struggled with my ostomy and severe reactions to adhesives. I commend anyone who needs to have a permanent one. You are stronger than I
Just found your channel and subscribed to it. I've got friends who suffer from Chron's disease. As a sight impaired person, I believe in spreading awareness on issues that most people may not fully understand. Therefore, I very much like your enthusiasm, honesty and clarity in sharing your IBD journey with us. I wish you the very best with everything, especially with your general health.
I am a colitis/crohn’s disease patient for 30+ years and going in for my second surgery and this time i am getting an ileostomy, thank you for the info, very helpful 🙂
Thank you, thank you, thank you! I'm so scared about this and I love the way you acknowledge that it is indeed a big deal, but you show us how it is possible to take all this in stride and just get on with life. You are a treasure to those of us dealing with this.
I had a bowel blockage and ended up with a colostomy. I refused to touch it, acknowledge it, anything. My ostomy nurse made me change it before I could leave the hospital and of course it leaked on my way home. My best advice came from her "Go home, get in the shower, take off the bag, explore, poke prod, get to know this thing, then name it." I did not find any of this funny but took to heart this is now your reality. While it's been 10 years (because of severe scarring it could not be reversed) "Ralph" and I still have our issues but generally live in peace.. Should anyone be in this situation feel free to contact me.
Fiali656 I had my colon surgery 18 months ago because of perforated colon. Soon after surgery I developed infection and my surgery was delayed. My infection is gone now but my doc says there are adhesion and my surgery is risky. Age is also a factor. I'm 70 years old healthy women. Other than ostomy I don't have any problem. I'm still not befriended with my stoma. My surgeon has left the decision totally on me. I'm confused about surgery. Should I go for it. If any one is in my position, would like to listen
It is a hard call. I had a massive infection and they waited 2 years. By the time they did try to re-attached but basically woke me up to say that they could not because of the adhesions. You need to go with your feelings.
My wife has one, she actually thought no one would want to have sex with her anymore. Her husband had decided he wanted to do younger women. She divorced him after she caught his butt in his camper trailer frolicking with one . There are pretty ones out there. It's not such a hassle for her. Has to watch what she eats. Has to eat small bites of food. She's 63 in January. Hang in there. Glad to have someone to talk to. Thanks for letting me type to you. Happy holidays.
I had my Ostomy for two years. Thankfully I don’t have it anymore, but your viewers should know that most of the times when your Ostomy is taken out, most people get hernias. I had one and had to have surgery and two mesh patches placed.
Maggie, I hope you continue to do video because you have such a nice way about you when your teaching or explaining things to us. That's what I did I got lots of samples but I didn't have someone like you telling me about this I figured this out long after I had my Ileostomy surgery. I got a hernia because I am tiny like you and had to be opened again and it was worse than the first operation. You can be active but doing abdominal exercises especially the first year after surgery is not recommended. Thanks so much for being so positive about our comments on the music being a little loud. That's great with putting your music in the beginning and the end and we can listen to you in the middle. We are just so interested in what you have to say. 😊
At first I was worried about the things you were gonna talk about but you basically have touched on everything I’ve researched so far! Phew! Lol. My ileostomy surgery is in 2 weeks! I’ve had colitis for 9 years and I am so ready for this. Still a little anxious but so ready! Thank you for making this video! 💕
Thank you so much for your honesty and positive attitude! I am a Cancer patient 4th time now and got my stoma about four months ago! I’ve learned so much from you and now I know I have options and I don’t feel so alone! Thanks again 🙏🏻❤️🙏🏻
VentionMGTOW most likely. Please know you will be ok. I know it’s scary but thank goodness we have people like Maggie helping us through. God bless you!
I took care of a woman who had an ostomy bag and her biggest problem was her skin was so raw all the time from where you had to glue the bag to the skin. And we only changed it every 3 or 4 days
I think I'm gonna pass out. I'm not ready to have my bowels messed with. I don't want a bag. It seems so "the end". I'm in so much pain though. What a terrible thing we have.
I have a j pouch and wish they could reverse it back to an illeostomy bag, its so much 1easier to live with psychologically and physically and mentally,
Chelle B get whatever surgery you need, I did, and I have no more pain, no more cramping, no hemoroids, no gas, it's sooooo much better, I travel, I paint, I go anywhere ...no worries...I love it now, such a good life.
I had an ileostomy surgery , it’s been for 4 weeks now (have Ulcerative Colitis, or had 😂idk, they removed my colon). It was kind of scary and I’m still getting use to it. Your channel was the first to pop up when I was looking for information and stuff, let me tell you I am so grateful I found you. You make it seem so natural and I feel much more confident now that I’ve been watching your videos❤️ wish you the best and to all the people that’s been going through the same. We’ll get through this!!! ✨❤️✨❤️✨❤️
How is your experience so far sense your surgery?I'm scared to death my surgeon is wanting me to have a total colectomy with ileo rectal anastomosis. Any advice?How was the pain after the surgery?And was it controlled well?
TIPS TO KNOW: 1. Stomas make sound - there is nothing to muffle 2. Stomas move - your intestines move due to peristalsis (wave motion to move food through) 3. Stomas bleed - your intestine has blood flow and this is normal 4. Stomas have no nerve endings - you can't feel when you touch your stoma 5. Pain after surgery - general pain throughout your whole abdomen (like intense ab workout) 6. How often do empty bag and how often do you change the bag? depends and varies person to person. 7. Dehydration - depends on type of ostomy surgery (ileostomy vs colostomy). Ileostomy requires you to drink more water than a normal person with colon done 8. Supplies - while in hospital, you will have unlimited supplies but limited to the supplier the hospital uses. Check with your insurance to see if they cover ostomy supplies and what kind. There are lots of variety of ostomy supplies. Order samples from each company so you have some supplies for first few days once home from hospital. 9. Exercise - you can play sports. You might try protective or supportive belt. Concern for hernias when you're active. Hernia is when intestine comes through abdominal wall 10. WOCN Stoma Nurse - Wound Ostomy Continence Nurse - You may have access to this. Sole support for dealing with an ostomy. Might meet one in the hospital and also have home care when you're having issues (bag isn't sticking, skin issues etc.)
In 🇨🇦 they are called Nurses Specialized in Wound, Ostomy and Continence Canada (NSWOCC) partnered with the Canadian Society of Colon and Rectal Surgeons (CSCRS). They will guide you through & be there for you even a year after or anytime you might have an issue. I have an ileostomy. Hope all your surgeries go well 🙏 💜🌻
I have crohns colitis going on 6 years and been through medications and now nothing is helping was told I have to have surgery to remove my colon I have been going back and forth but now I’m waiting for a surgeon to call. I’m scared but I’m tired of being in pain and feeling sick
Thank you for this informative video, you are on point. I am having a sigmoid loop colostomy in two months. I am also a quadriplegic c6-c7 complete spinal cord injury for a decade (twenty nine now). I am having the surgery primarily because my current situation is unbreable. Excessive sweating, hypotension, shivering temperature (symptoms of Autonomic Dysreflexia), irritable bowels, gastrointestinal complications, distension, implication, severe spasms due to rectal tension, insomnia, spending endless hours in bed post bowel program, a demonising bowel program extending from two to three hours, with many times little to no results, psychological burden, physical exhaustion. I hope the pros of the colostomy will solve such problems and give me a better life quality. The askward part is that my doctor never had a patient who suffered from a spinal cord injury and is in need of a colostomy, which meant the choice was mine to make.
Thanks so much for this. I'm getting ostomy surgery in two days and videos like these make me feel like I have a slightly better idea of what I'm in for.
Practical information based on your experience is incredibly helpful. Thanks for taking the time to share what you've learned. One question I haven't seen addressed is sleeping with an ostomy bag. Will I have to learn to sleep on my back?
Thank you for your video. I am new to the ostomy world. One month and a half. Mine is a colostomy from cancer. The front butt is far better than what I had going! I will admit I'm a clumsy guy. I had two messes in public and one tonight at home that was a disaster. I know to empty it at half full lol. Just learning. My biggest problem is the cat box order on every thing after a couple of days of wear. I employed the deorderant tonight after the disaster! Try that out? Hopefully with your tips I can clean the end to keep the order down! I ordered the stealth belt but I prefer free bagging! Lol thanks so much for your help! Look forward to learning more!
Just found you. Thank you for being so gracious and sharing this. I'm a colonostomy because of diverticulitis. Sure wished someone like you lived near me.
I’ve had my stoma, which I named it Stella as a coping mechanism, for about 9 months and I started public school again this year and when it would make the noise in class everyone would know it was me and at first I felt embarrassed but now everyone is like yea that’s Cierra lol and it’s become a regular and normal thing. Honestly the only thing I miss anymore is not being able to fart. So times the gas will get “stuck” and I have to push it through abs I wish I didn’t have to think about it anymore
@Cierra Larry, I LOVE the idea of naming your stoma!! I am going to have to borrow that from you. I, too, have problems with the 'noise'; still humiliating to me. Thanks for your post. 💜
Here us a ostomy tip: so I feel unsafe walking around without something holding it down bc I feel it will come off and I have had it come off so what I do is use strapless bras and were it as like a belt but it's really cozy and makes me feel safer
Bratzyybabezz those belts are the best thing I’ve ever invested in. Also since it sounds like you had the same feelings I did, you should check out ostomysecrets.come they have wraps that go around it as well that I love
I've had a iliostomy 5 years I've had to have it moved twice. Do to reoccurring stoma hernia Thank you this video. And helping kids with their new ostomy I'm actually laying in the hospital now with a blockage. Theyre trying to free it up by just IV fluids thru my port. I had but yet a surgery 3 weeks ago. I have fifty Staples in my tummy
Thank you so very much!!!! I stop watching videos with music!!!! I’m a senior citizen and it’s very difficult to hear what is being said!!!! Bless you for listening to your viewers!!!
I used edge park is workout fine. I had no problem with them. They were very helpful. I had a ilsecomy reversal on 28 April 20, so far so good. I'm just dealing with wound care and dressing changes. I thank you so much for your information.
Thank you sweety you are an inspiration to me. I am soo soo depressed going to get one but seeing you and how your dealing is just so great and is helping me. I still think who wants to date me when I get one and I am just so self conscious about it but you are an encouragement and I want to say thank you so much.
I have had a ton of reconstructive bladder surgery and precancerous cells in my uterus. They couldn't get my uterus out because scar tissue fused it to my bladder. I was also having to use catheters. So a month ago I had a radical cystectomy and hysterectomy. It hurt! I had an amazing ostomy nuse named Rich who worked with me for hours while I spent my week in the hospital. It's hard to find urostomy stuff on TH-cam, but I am greatful that you share this part of your life. Knowledge is power! Cassie aka urostomy girl. Im a month out, stoma shrunk perfectly, still in pain, but what do you expect when you are filleted open for 8 hours while people dig through scar tissue. Unfortunately because of my previous surgeries I did not qualify for laparoscopic surgery. They had to get in there and get their hands dirty!
just had basically same surgery and have been disappointed at the lack of specifically urostomy content on YT. at least some of the rest can be relevant. be well!
When I had my surgery, I have a six inch incision, six laparoscopic incisions, 12 inches of bowel removed and a liter of stool was squeezed out, the pain was insane. I’ve had hip replacement surgery, hip dislocations and severely broken ankle. I would rather go through any of those instead of the bowel surgery.
Maggie, I am going to have surgery because the docs have found a mass between my bladder and rectum , due to a recurrence of Ovarian cancer and have been told I will probably have a colostomy bag for life. I am scared stiff!! I am glad I found your videos, but I really feel,like I won't be able to handle the procedure of putting on and taking off the bags.
Great video. I had my ileostomy surgery in 2015 and just had major surgery for FOUR hernias! I used to bodybuilding so lifting was second nature to me. Never again! Also, I had gained 20 pounds after losing 65 after my original surgery and my Dr told me this was a major cause of the hernias. I lost 33 pounds after the 2nd surgery and plan to keep it off!
R Shipman Had a colostomy surgery 5 months ago, am due for closure of the colostomy end of this month and my major concern is if i will ever resume playing football again, the thought of the hernias is freaking me out, i love playing football as a way of keeping fit.
Hi, I just wanted to add something to what you said about the generalized abdominal pain one can have after a stoma. The intestines are attached to the body with a pad of fat one one end of the tubes called the mesentery. They nevertheless DO flop around quite a bit and move pretty freely. That goes for most of the small bowel, which is most of the bowel, and a good portion of the large bowel too. There is some cutting into the mesentery during surgery on the bowel, but this shouldn't really result in pain as just like the bowel it doesn't have nerve endings the same way as your skin or eyeball or something. The reason for generalized abdominal pain after laparaoscopic surgery is probably the gas they use to inflate the abdomen. The gas stretches the peritoneum attached to the wall of the abdomen on the inside and if there is enough pressure in there (just like a tyre being inflated) that stretch can cause quite a bit of pain. On top of that, there is quite a bit of tug and pull going on even with the minimal access, and it can result in some muscular pain. Nothing very severe, but on top of everything else it can be just that little bit too much.
Such an informative video. I don't have an ostomy but very glad I found your videos because you have such a wonderful presence, and I'm learning a lot. Thank you.
I love your attitude about living with an ostomy. My “girl” Candace and I lived together for 4 years. Thank you for educating people about the life of ostomates. One favor that I ask is to tell people that your ostomy covering is not a bag, it is a pouch.
I have a loop colostomy atm and will soon have an end colostomy.... I too have feeding suppelmets etc as well as umpteen other health problems and complaints. (permanent catheter neurogenic bladder and bowel tethered spinal cord syndrome spina bifida etc) I'm 34 and have 3 kids n am wheelchair bound. any who moral of my story is it is SO NICE to see some 1 else out there who's young n has similar problems but doesn't let it affect their attitudes or life. n it's great you are sharing as my family n friends have NO IDEA what it's like to have an ostomy so any info for them is great. 😊😊👍👍
YES the sound is so funny sometimes and you have no control over it. I learned to just laugh through it. And if someone comments on it I just tell them you pass gas right? I just tell them my “baby butt “ is having a field day and I have no control over it.
My big bowl blew up in 2017 and I have a permanent ostimy bag. I called to place my normal order with Edgepark and freaked out when they told me they needed an update or confirmation from a Dr before they could ship to me. Turns out it was for insurance purposes. But it left me in a panic. So that's just an FYI from me. Don't run out of supplies. Make sure your insurance company keeps a renewal on file.
I just found your channel . I have a J pouch ( illeostomy) internal colostomy. I gave had it for more than 2 decades . Your description of things they never told me .. Is like being able to go back and say hey Dr this stuff HURTS
I had mine about 27 years ago an I had just above my belly button right down to the top of my pubic bone 40 stitches and they also had to have my rectum done and the whole of my large bowel out big operation but am still her You’re doing a good job of talking to people about it xxx
I'm at hospital right now and removed my colon a couple of days ago. The hardest thing I find is the smell when emptying and changing the bag and the strangest thing I thought was that I got to eat till a couple of hours before the surgery
globalko some people put a couple of mint tic tacs in their bag. Not sure if you're in the UK but I use Ostomist Gardenia & Jasmine drops which makes a big difference too. Tip some in the end every time you empty. You might want to wait a month or two before using and let your skin and stoma settle in.
I had the same shock in the hospital and my nurse said she couldn't understand why ALL new ostomates said they could smell it after emptying. I finally figured out WHY: THE HOSPITAL GOWN is like a TENT~~ It DOES collect the odor and waft right up through the neck hole.
I almost ended up with an ostomy, my Crohn's was so bad they were going to go surgery. I decided I wanted to wait, thank god the swelling went down and I didn't need it. I worry about the day I need surgery.
I had a temporary transverse colostomy...4 months I was interviewing a woman once for a job. She said..excuse me..do you have a transistor radio under your shirt???? I used to use bags that had like a tupperware ring for abdomen that stuck very well. The bags were open or closed and had the tupperware ring that fits in the flange. Worked great.1983 Insurance paid partial amt.LOTS of money. A great fan from FL.Mary
Hey girl! I've been using a Lav mic. It makes voices sound super clear so we don't have to project our voices as much. Plus, it won't pick up background noise as bad as other devices. I have one that plugs right into my iPhone that I picked up for about $25 off of Amazon. I'm looking into a new one that has its own battery supply, which will work with my DCLR.
Excellent video. I was told before my surgery that I would be able to wear my jeans and other pants. That was not true. I could not wear any pants with a waist band due to the location of my stoma and pouch. The waist band rubbed against the pouch causing a lot of discomfort. I had to wear loose fitting jogging pants or bib overalls.
BRR It totally depends on the position - I was told I probably couldn't wear jeans and am actually able to because my stoma is high up on my belly. Some stomas are placed right on the waist line though, making tight pants hard to wear
My husband had to have his bladder out in March due to deterioration from prostate cancer radiation 10 years ago. A year before his surgery he had a superpubic tube put in his lower abdomen for urine drainage
Sine of the best info ever. Your right they dont tell you a lot of this, you just have to discover it on your own. There is not an ostomy nurse within about 150 miles of me. I sure wish there were more. Even after years you still have questions and problems
I wished I would of found this video before I got my surgery, but you are 100% right I had to learn as I went through it and still am. Very good info!!
i got in a car crash last year resulting in me getting an ileostomy bag, and it was high up bc a lot of my colon was destroyed so it was very liquid and it was an emergency surgery and it also leaked everyday for 9 months. i have a kinda large scare like 4 fingers below my boob
FYI-If you are going in for a reversal surgery, you have to be nicotine free before surgery. It takes 4-6 weeks to get nicotine out of system. They will do 2 urine test before surgery to make sure there is no nicotine. Just some info for the smokers out there. Going to have to quit. Helps the healing process.
I had to irrigate a lady in the nursing home back in the summer of 1974 and it was very strange, she was very uncomfortable though so we had to give her some relief
I'm currently in Nursing school and learning about Ostomy care and I was wondering about contact sports such as Rugby, Hockey, or even American football. Some of those belts you mentioned, are they sturdy enough to last up to 80 minutes of constant tackling?
McKesson wouldn't send me anything to my PO box,we are rural, we don't get home delivery. And they charged my $600 for I don't know what supplies because I haven't gotten anything from them since I came home.
Whats up with brits being so happy about the NHS? Us germans are constantly complaining how shit our state health insurances are, despite them actually paying for more stuff as far as I can tell. Teach us your ways.
We bless the NHS because everything is free, you only pay a paltry £7.50 prescription charge for medications and supplies if in employment. Yes I don’t mind paying more tax for this because the point is everyone has access.
Have an ostomy for One year and I am having so many problems and no help from my Dr. I feel like I can’t go anywhere it was the worst experience of my life
i've dealt with chronic constipation my entire life. right now, i do not have an ostomy- but it's looking as if it will become a very real option for me. i currently feel like i have to choose between being in pain and constipated, or being in pain and incontinent (using many laxatives). my muscles are too weak to have bowel movements normally, and i just wanna say thank you. you've made me feel better about the possible ostomy i may be receiving in the future.
@@ashtongoodlad4174 thanks for answering i am also contiplating getting a ostomy due to my severe constipation that started when i was 22 and now i am 29 its been too long dealing with this.. I am in so much pain and the bloating no appetite being underweight sucks.. I am just sad that i have to get this surgery so young when did your constipation issues start?
I have had my ostomy for a little over 11 years. I have had to have polyps snipped off from my stoma, and although they say that there is no nerve endings in your stoma, I will say that when I had some polyps clipped off I did in fact feel pain with the clipping. js
At 2:52 into the clip I was so bored with the irrelevant chit chat that I was going to click you off. But I hung in and I'm glad that I did because eventually, you imparted a lot of stellar information. Thanks. You're a thumbs up for me
I've been having gastro problems for years always being constipated and only going to the bathroom once a week now the past 5 months things have changed I've been seeing a gi doctor alot I've had cdiff 3 times in 5 months and and after i finish this go around they are finally going to do a colonoscopy and they think i might have Crohn's disease
I don’t have an ostomy bag, but I am SO interested yet concerned why there are not better options for this!? Is this really all doctors have come up with so far :( my heart hurts for these people.. having been anxiety ridden my whole life I’m not sure if I could cope.
Ok girl you seem to know stuff, I’ve had an permanent ostomy now for almost 10 years. Have discovered an opening around the bottom of my stoma I’m scared and my insurance is cheap! 😳 I can’t find a Dr. What should I do. And your right the noises are embarrassing. I’m getting so sick and tired of it! HELP😕
Do you mean the skin is separating from the stoma? If that is the case, I would say it is important to see your surgeon or at least a WOCN to ensure it is ok like that. It can be a source of infection if it continues to get bigger!
AMEN on the intestines moving!! I was so freaked out when I saw Stella the stoma after surgery and it was moving 😂 same goes for the nerve endings. I was so nervous that it would hurt.
For me, my stoma is sounds like a frog croaking under water. Mine is an Iliostomy, after colorectal surgery. My colon was totally removed. I use edgepark, coloplast brand.
You mentioned in this video that you have two children. Well, you take excellent care of yourself because you barely look 20 years old. I am going to have my bladder and prostate removed very soon. I am old, I am 60. I am absolutely terrified. I have already had 15 surgeries as I was diagnosed with C in 2012. I am checking out videos trying to learn what I have to do. I already have to do a numerous of other things to just stay alive. I have had 8 UTI's last year (2022) and been admitted to the hospital for lengthy stays. I am confused, I thought only urine comes into the bag. A bit of a bold direct question, do you no longer evacuate your bowls the normal way? After the surgery, how long did it take you to fully recover? My doctor said he may have me go to an assisted living because I have nobody to help me. Hmm... Would you want to come over and... Yeah, I am sure that would be a no as I am sure you have an amazing family. As I sit here and type out this message I am in a lot of pain and I struggle as I don't want to keep taking Norco. Any advice for newbies who are on the fence? Thank you for sharing your advice. You, Rock!
I had emergency surgery that ended with an osteomyelitis bag due to diverticulitis and an aggressive kink in my colon. My health care nurse with a wicked sense of humor said “ look at this way, you butt hole is now in a new location.” I find it funny that people have a hard time adjusting to “poop”, when all it is , is composted food. Think about that! The food goes in, the body takes out the nutrients, the rest is just compost.
I have a ton of complications after my fistula in ano.. but surgeons say this is my only option..because I have bowel incontinence, sphincter nerve damage and a rectal prolapse. I'm scared to have the bag..i had 7 operations in 11 months.. so I'm really tired of chronic pain.. please could you advise me on what it's like. I'm female.. studying law, I'm basically a cabbage. I just want to be healed.. but I'm overly stressed as I am on antibiotics depressants and sleeping pills.
I have no idea why this was recommended to me. Probably because I had bariatric surgery and was looking up bariatric videos?? But either way. I find medical stuff interesting!
I have a question - I am sensitive to the adhesive on bandaids. My skin gets red and inflamed quicker, easier and worse than most people. Should I expect this to happen with the adhesive on the wafer/disc? How long can you go without wearing it, allowing time for any redness, wearing, etc to breathe and heal?
Maggie your video was so helpful I had my ostomy surgery done 10 weeks ago and before surgery I was not told about the possibility of getting hernia but just last week when I went back to my local hospital I showed my stoma care nurse swelling around my stoma and it's quite painful she said it's ahernia starting I was shocked when I googled about ahernia but because of my weak bladder I have to use alot of pressure to empty my bladder and it must have been that, that started my ahernia at this early stage. I just pray and hope it does not get worse and need further surgery. take care Michael from Ireland and safe driving with your new motor.
I had my bag removed in April. I came back to thank you. You're one of the bravest people I've ever come across. This process isn't easy and I needed someone honest and open. Thank you, that's all I have to say. Except I'm cancer free now 1 1/2 years. All my best, Tom.
That's awesome
So are you going to the bathroom normally now?
God bless you.i am permanent clostmybag patient..permanent clostmy reverse in operation..plz tell me ????
🙏
Well done, congrats. I'm still doing the stage 4 thing. Colon cancer. It's in my liver too.
First off i want to start out saying your videos are amazing and your great. I'm a new ostomate, and you and others going through it have helped me more than any doctor. That being said, I died when you opened the video talking about the music complaints while actually drowning out your voice with the music, lol. Thank you for the laughs. You know there's a lot of rough days when this is all new. People like you help us so much. Regardless if you're still making content or not. Hope all is well and you're kicking life's ass just as you were in this video years ago.
God bless
I ended up with an illeostomy as a result of colorectal cancer, had the bag for 18 months and everything has been reversed. I've watched several of your videos and know they must help people get through having to live with the ostomy. I personally was scared, angry, depressed but managed to get through it. I think there should be more support groups out there for people having to go through this, it's not easy and takes some major getting used to. Thanks for your videos, they certainly helped me.
You're an outstanding Ambassador and advocate for people with ostomies.
You'd make a brilliant Wound care and ostomy nurse, so enjoy the study getting there, because you already have the other attributes of great communication and natural empathy.
So i just got a Ostomy 2 weeks ago and I am only 13 and this video has helped me a lot so thank you
Oh wow. Was it colitis?
Hey Anton you are very brave my friend. When I was 13 I had already had over 20 procedures and I know that can be hard on a teenager because you are trying to find yourself anyway! Hang in there man, you are not alone I promise!
im 17 and im about 4 days away from my surgery
JessKeegan q
I got my ileostomy when I was 11. I'm 36 now.
I want to thank you for all your videos. You helped me get over my squeamishness regarding ostomies. My son's colon was killing him and we both had a hard time facing up to his eventual surgery. I made a point of learning everything I could from you and other ostomates. Because of that, I was able to advocate that he get an ileostomy....and it saved his life (he was close to dying). You guys/gals are wonderful and you helped save my son's life. I am eternally grateful and wish you all the best.
I just wanted you to know that after watching this video and several others I felt very prepared for getting my Ostomy 4 days ago. I am sure you hear this all the time how much you help. However, after getting surgery and No ostomy nurse came to see me the first day, the second day and after begging saw a back up and her trainee one hr before discharge. I was very prepared by you and my first change went smoothly and I was complemented how well educated I was. I gave all the credit to my first actual Ostomy nurse, Maggie. Thank you for what you do.
Hi....My long time girlfriend is getting Ostomy or the other one, and these videos are helping both of us. THANK YOU!
I'm about 5 weeks out from my total colectomy surgery. In January I found out I had something called FAP(familial adenomatous polyposis) which is a genetic condition that has a 100% chance of eventually causing colon cancer, usually around 38-40 years old. I'm 22 years old. When I was diagnosed(with no family history) I was given approximately 2 years before I would develop cancer. I had my surgery on April 19. Two weeks prior to that I spent a week in the hospital for a severe increase in pain which as a first responder I could no longer work because of it. My surgeon said I was fine and didn't bump up my surgery. Surgery day comes and due to a physical deformity I didn't know I had, my laprascopic surgery turned into an open surgery. All of my organs were completely in the wrong place in my abdomin. My intestines were actually formed around my spine instead of more in the middle/up front so every single abdominal organ had to be moved around. On top of that, i woke up in the ICU without any feeling in my leg. Thankfully I was barely able to move my toes so fear of paralysis was slightly lowered. It took a few days but I could finally feel my legs again, however my thighs are still numb and my left calf is extremely sensitive(touching it lightly causes extreme pain) so there's still lingering nerve damage but at least I can use them. My recovery time is doubled because of the complication with surgery and I spent most of my recovery in and out of the hospital anyway. Four hours into my first day back to work and I'm taken by ambulance to the hospital again because I couldn't breathe and my chest hurt. My entire neck and chest cavity was full of air(outside of my lungs obviously) which I found out is extremely life threatening. I was too scared to cry because I thought if I did I'd trigger everything and die. Another week in the hospital and the air finally started going away. They never found the leak though. Now I'm still not in work, I'm not allowed to do anything but walk around, and I have several hernias trying to form under my main incision. I'm having stoma troubles too. My stitches won't disolve at all and I've got something called granulomas forming around it that ruin any seal I have. They're not being treated yet. At my follow up my surgeon also told me "Oh by the way, we actually did find cancer in your colon. But at least it's out now." Like it was nothing. I'm only one month in but I'm so over it all. Some days I literally just want to cry all day. My only solace is that in August, assuming my bottom has fully healed, it will be reversed. I don't have the heart or willpower for this and I commend everyone who has ostomies/these surgeries for years/life. I'm sorry for the long whiney comment, I just wanted to say that your channel and others like it have helped me a lot going through this. My grandmother was an ICU nurse but even she doesn't know much about ostomies so she's been helping me learn. My husband's got to be way stronger than I'll ever be for putting up with me though. Thank you all and good luck and health
Wow, what a story. It sounds like you've been dealt a crummy hand of cards to say the least. But hang in there, I don't have an ostomy, I'm just researching it because I have a concern with something that is likely just a hemorrhoid, but Im still worried, seeing the doctor in an hour and a bit. But you'll get better, and think about how awesome it will be when your ostomy can be reversed!
You sound like a very strong young woman. Keep on keeping on! (:
Thanks for sharing your journey. You have more strength than you know and will be a beacon of light and hope for others. God bless you
God love you darling
I figured I'd give an update though no one asked 😂 I'm doing relatively well. I'm having nuerological issues that they haven't quite figured out yet but it's being managed. I was in a rollover in March and walked away with cuts and bruises luckily. I've been back at work for almost half a year although I'm temporarily out right now due to a concussion. Needless to say the punches seem to keep on rolling 😂 but we're getting there. I had my ostomy closed and now have a semi-normal functioning digestive tract sans colon and rectum which helped a LOT. I really struggled with my ostomy and severe reactions to adhesives. I commend anyone who needs to have a permanent one. You are stronger than I
@@Bleu_Bug I wish you a full recovery.
I have had active Crohns disease all of my life. You are doing a real service here. Thank you.
Same :)
What a beautiful hero you are. I can sure use someone like you in my life to get me out of my "feeling sorry for myself" attitude.
Just found your channel and subscribed to it. I've got friends who suffer from Chron's disease. As a sight impaired person, I believe in spreading awareness on issues that most people may not fully understand. Therefore, I very much like your enthusiasm, honesty and clarity in sharing your IBD journey with us. I wish you the very best with everything, especially with your general health.
I'm getting an ostomy bag surgery on Friday and I'm sooo scared... thank you for this video it helped me feel a little bit better
How's everything going so far :)
I am a colitis/crohn’s disease patient for 30+ years and going in for my second surgery and this time i am getting an ileostomy, thank you for the info, very helpful 🙂
Thank you, thank you, thank you! I'm so scared about this and I love the way you acknowledge that it is indeed a big deal, but you show us how it is possible to take all this in stride and just get on with life. You are a treasure to those of us dealing with this.
I had a bowel blockage and ended up with a colostomy. I refused to touch it, acknowledge it, anything. My ostomy nurse made me change it before I could leave the hospital and of course it leaked on my way home. My best advice came from her "Go home, get in the shower, take off the bag, explore, poke prod, get to know this thing, then name it." I did not find any of this funny but took to heart this is now your reality. While it's been 10 years (because of severe scarring it could not be reversed) "Ralph" and I still have our issues but generally live in peace.. Should anyone be in this situation feel free to contact me.
Fiali656 I’m getting a colostomy tomorrow and I need some advice. I’m 16 and 65 pounds
Sure send me an email tarbklw@gmail.com
Fiali656 I had my colon surgery 18 months ago because of perforated colon. Soon after surgery I developed infection and my surgery was delayed. My infection is gone now but my doc says there are adhesion and my surgery is risky. Age is also a factor. I'm 70 years old healthy women. Other than ostomy I don't have any problem. I'm still not befriended with my stoma. My surgeon has left the decision totally on me. I'm confused about surgery. Should I go for it. If any one is in my position, would like to listen
It is a hard call. I had a massive infection and they waited 2 years. By the time they did try to re-attached but basically woke me up to say that they could not because of the adhesions. You need to go with your feelings.
My wife has one, she actually thought no one would want to have sex with her anymore. Her husband had decided he wanted to do younger women. She divorced him after she caught his butt in his camper trailer frolicking with one . There are pretty ones out there. It's not such a hassle for her. Has to watch what she eats. Has to eat small bites of food. She's 63 in January. Hang in there. Glad to have someone to talk to. Thanks for letting me type to you. Happy holidays.
I had my Ostomy for two years. Thankfully I don’t have it anymore, but your viewers should know that most of the times when your Ostomy is taken out, most people get hernias. I had one and had to have surgery and two mesh patches placed.
Maggie, I hope you continue to do video because you have such a nice way about you when your teaching or explaining things to us. That's what I did I got lots of samples but I didn't have someone like you telling me about this I figured this out long after I had my Ileostomy surgery. I got a hernia because I am tiny like you and had to be opened again and it was worse than the first operation. You can be active but doing abdominal exercises especially the first year after surgery is not recommended. Thanks so much for being so positive about our comments on the music being a little loud. That's great with putting your music in the beginning and the end and we can listen to you in the middle. We are just so interested in what you have to say. 😊
Donna61111 thank you so much for all of your wonderful comments! definitley some great tips in this comment ^ !
At first I was worried about the things you were gonna talk about but you basically have touched on everything I’ve researched so far! Phew! Lol. My ileostomy surgery is in 2 weeks! I’ve had colitis for 9 years and I am so ready for this. Still a little anxious but so ready! Thank you for making this video! 💕
how are you now? Can you tell us more about it.
Thank you so much for your honesty and positive attitude! I am a Cancer patient 4th time now and got my stoma about four months ago! I’ve learned so much from you and now I know I have options and I don’t feel so alone! Thanks again 🙏🏻❤️🙏🏻
Scary. I got a rectal tumor that's got to go. I suspect I'll have to go with a bag. Good luck on your journey sister.
VentionMGTOW most likely. Please know you will be ok. I know it’s scary but thank goodness we have people like Maggie helping us through. God bless you!
I took care of a woman who had an ostomy bag and her biggest problem was her skin was so raw all the time from where you had to glue the bag to the skin. And we only changed it every 3 or 4 days
I think I'm gonna pass out. I'm not ready to have my bowels messed with. I don't want a bag. It seems so "the end". I'm in so much pain though. What a terrible thing we have.
Out of sight Out of mind how was it I don’t have one
I have a j pouch and wish they could reverse it back to an illeostomy bag, its so much 1easier to live with psychologically and physically and mentally,
Chelle B get whatever surgery you need, I did, and I have no more pain, no more cramping, no hemoroids, no gas, it's sooooo much better, I travel, I paint, I go anywhere ...no worries...I love it now, such a good life.
@@watercolorartist646 ZZZ
I had an ileostomy surgery , it’s been for 4 weeks now (have Ulcerative Colitis, or had 😂idk, they removed my colon). It was kind of scary and I’m still getting use to it. Your channel was the first to pop up when I was looking for information and stuff, let me tell you I am so grateful I found you. You make it seem so natural and I feel much more confident now that I’ve been watching your videos❤️ wish you the best and to all the people that’s been going through the same. We’ll get through this!!! ✨❤️✨❤️✨❤️
How is your experience so far sense your surgery?I'm scared to death my surgeon is wanting me to have a total colectomy with ileo rectal anastomosis. Any advice?How was the pain after the surgery?And was it controlled well?
TIPS TO KNOW:
1. Stomas make sound - there is nothing to muffle
2. Stomas move - your intestines move due to peristalsis (wave motion to move food through)
3. Stomas bleed - your intestine has blood flow and this is normal
4. Stomas have no nerve endings - you can't feel when you touch your stoma
5. Pain after surgery - general pain throughout your whole abdomen (like intense ab workout)
6. How often do empty bag and how often do you change the bag? depends and varies person to person.
7. Dehydration - depends on type of ostomy surgery (ileostomy vs colostomy). Ileostomy requires you to drink more water than a normal person with colon done
8. Supplies - while in hospital, you will have unlimited supplies but limited to the supplier the hospital uses. Check with your insurance to see if they cover ostomy supplies and what kind. There are lots of variety of ostomy supplies. Order samples from each company so you have some supplies for first few days once home from hospital.
9. Exercise - you can play sports. You might try protective or supportive belt. Concern for hernias when you're active. Hernia is when intestine comes through abdominal wall
10. WOCN Stoma Nurse - Wound Ostomy Continence Nurse - You may have access to this. Sole support for dealing with an ostomy. Might meet one in the hospital and also have home care when you're having issues (bag isn't sticking, skin issues etc.)
You're seriously a really wonderful person.
cheese man ❤️
❤️
In 🇨🇦 they are called Nurses Specialized in Wound, Ostomy and Continence Canada (NSWOCC) partnered with the Canadian Society of Colon and Rectal Surgeons (CSCRS). They will guide you through & be there for you even a year after or anytime you might have an issue. I have an ileostomy. Hope all your surgeries go well 🙏 💜🌻
I have crohns colitis going on 6 years and been through medications and now nothing is helping was told I have to have surgery to remove my colon I have been going back and forth but now I’m waiting for a surgeon to call. I’m scared but I’m tired of being in pain and feeling sick
Thank you for this informative video, you are on point. I am having a sigmoid loop colostomy in two months. I am also a quadriplegic c6-c7 complete spinal cord injury for a decade (twenty nine now). I am having the surgery primarily because my current situation is unbreable. Excessive sweating, hypotension, shivering temperature (symptoms of Autonomic Dysreflexia), irritable bowels, gastrointestinal complications, distension, implication, severe spasms due to rectal tension, insomnia, spending endless hours in bed post bowel program, a demonising bowel program extending from two to three hours, with many times little to no results, psychological burden, physical exhaustion. I hope the pros of the colostomy will solve such problems and give me a better life quality. The askward part is that my doctor never had a patient who suffered from a spinal cord injury and is in need of a colostomy, which meant the choice was mine to make.
I hope you found some relief!
Thanks so much for this. I'm getting ostomy surgery in two days and videos like these make me feel like I have a slightly better idea of what I'm in for.
how are you now? can you tell us more about it.
Thank you so much for the info! my husband has colon cancer surgery in 2 weeks. He's terrified and I'm trying to learn as much as I can in advance ❤
Practical information based on your experience is incredibly helpful. Thanks for taking the time to share what you've learned. One question I haven't seen addressed is sleeping with an ostomy bag. Will I have to learn to sleep on my back?
Can you talk about using A car seatbelt? I have an ileostomy and a urostomy and I hate having a seatbelt across my belly.
i love that you dont have music playing while you are talking. makes it easier to listen. thank you :)
Thank you for your video. I am new to the ostomy world. One month and a half. Mine is a colostomy from cancer. The front butt is far better than what I had going! I will admit I'm a clumsy guy. I had two messes in public and one tonight at home that was a disaster. I know to empty it at half full lol. Just learning. My biggest problem is the cat box order on every thing after a couple of days of wear. I employed the deorderant tonight after the disaster! Try that out? Hopefully with your tips I can clean the end to keep the order down! I ordered the stealth belt but I prefer free bagging! Lol thanks so much for your help! Look forward to learning more!
Thank you so much I just got my Ileostomy Oct 30th, 2019 a week ago. Your information has helped me a lot.
Just found you. Thank you for being so gracious and sharing this.
I'm a colonostomy because of diverticulitis.
Sure wished someone like you lived near me.
I’ve had my stoma, which I named it Stella as a coping mechanism, for about 9 months and I started public school again this year and when it would make the noise in class everyone would know it was me and at first I felt embarrassed but now everyone is like yea that’s Cierra lol and it’s become a regular and normal thing. Honestly the only thing I miss anymore is not being able to fart. So times the gas will get “stuck” and I have to push it through abs I wish I didn’t have to think about it anymore
@Cierra Larry, I LOVE the idea of naming your stoma!! I am going to have to borrow that from you. I, too, have problems with the 'noise'; still humiliating to me. Thanks for your post. 💜
Yes ,same I miss my my morning wake up farts.they were so loud and proud🤭
Here us a ostomy tip: so I feel unsafe walking around without something holding it down bc I feel it will come off and I have had it come off so what I do is use strapless bras and were it as like a belt but it's really cozy and makes me feel safer
Bratzyybabezz those belts are the best thing I’ve ever invested in. Also since it sounds like you had the same feelings I did, you should check out ostomysecrets.come they have wraps that go around it as well that I love
I've heard that some people use tube tops to go over them aswell.
I've had a iliostomy 5 years I've had to have it moved twice. Do to reoccurring stoma hernia Thank you this video. And helping kids with their new ostomy
I'm actually laying in the hospital now with a blockage. Theyre trying to free it up by just IV fluids thru my port. I had but yet a surgery 3 weeks ago. I have fifty Staples in my tummy
Thank you so very much!!!! I stop watching videos with music!!!! I’m a senior citizen and it’s very difficult to hear what is being said!!!! Bless you for listening to your viewers!!!
Don't forget us old-timers on Medicare. They are capricious about what they send, too. I didn't get an actual stoma guide till two weeks post-op!
I used edge park is workout fine. I had no problem with them. They were very helpful. I had a ilsecomy reversal on 28 April 20, so far so good. I'm just dealing with wound care and dressing changes. I thank you so much for your information.
Thank you sweety you are an inspiration to me. I am soo soo depressed going to get one but seeing you and how your dealing is just so great and is helping me. I still think who wants to date me when I get one and I am just so self conscious about it but you are an encouragement and I want to say thank you so much.
I have had a ton of reconstructive bladder surgery and precancerous cells in my uterus. They couldn't get my uterus out because scar tissue fused it to my bladder. I was also having to use catheters. So a month ago I had a radical cystectomy and hysterectomy. It hurt! I had an amazing ostomy nuse named Rich who worked with me for hours while I spent my week in the hospital. It's hard to find urostomy stuff on TH-cam, but I am greatful that you share this part of your life. Knowledge is power! Cassie aka urostomy girl. Im a month out, stoma shrunk perfectly, still in pain, but what do you expect when you are filleted open for 8 hours while people dig through scar tissue. Unfortunately because of my previous surgeries I did not qualify for laparoscopic surgery. They had to get in there and get their hands dirty!
just had basically same surgery and have been disappointed at the lack of specifically urostomy content on YT. at least some of the rest can be relevant. be well!
I really have had no problems in six years, so far so good. ☺
😉
how often do you get leaks
When I had my surgery, I have a six inch incision, six laparoscopic incisions, 12 inches of bowel removed and a liter of stool was squeezed out, the pain was insane. I’ve had hip replacement surgery, hip dislocations and severely broken ankle. I would rather go through any of those instead of the bowel surgery.
Maggie, I am going to have surgery because the docs have found a mass between my bladder and rectum , due to a recurrence of Ovarian cancer and have been told I will probably have a colostomy bag for life. I am scared stiff!! I am glad I found your videos, but I really feel,like I won't be able to handle the procedure of putting on and taking off the bags.
Great video. I had my ileostomy surgery in 2015 and just had major surgery for FOUR hernias! I used to bodybuilding so lifting was second nature to me. Never again! Also, I had gained 20 pounds after losing 65 after my original surgery and my Dr told me this was a major cause of the hernias. I lost 33 pounds after the 2nd surgery and plan to keep it off!
R Shipman Had a colostomy surgery 5 months ago, am due for closure of the colostomy end of this month and my major concern is if i will ever resume playing football again, the thought of the hernias is freaking me out, i love playing football as a way of keeping fit.
Although i have a different chronic condition,im very happy theres a platform for all things.
Hi, I just wanted to add something to what you said about the generalized abdominal pain one can have after a stoma. The intestines are attached to the body with a pad of fat one one end of the tubes called the mesentery. They nevertheless DO flop around quite a bit and move pretty freely. That goes for most of the small bowel, which is most of the bowel, and a good portion of the large bowel too. There is some cutting into the mesentery during surgery on the bowel, but this shouldn't really result in pain as just like the bowel it doesn't have nerve endings the same way as your skin or eyeball or something. The reason for generalized abdominal pain after laparaoscopic surgery is probably the gas they use to inflate the abdomen. The gas stretches the peritoneum attached to the wall of the abdomen on the inside and if there is enough pressure in there (just like a tyre being inflated) that stretch can cause quite a bit of pain. On top of that, there is quite a bit of tug and pull going on even with the minimal access, and it can result in some muscular pain. Nothing very severe, but on top of everything else it can be just that little bit too much.
I'm 5 years post op ileostomy...2 piece coloplast, cut to fit. I get an average of 10-12 days out of pouch
CanadianBeefman123 10 -12 days? THAT'S AWESOME!
Such an informative video. I don't have an ostomy but very glad I found your videos because you have such a wonderful presence, and I'm learning a lot. Thank you.
I love your attitude about living with an ostomy. My “girl” Candace and I lived together for 4 years. Thank you for educating people about the life of ostomates. One favor that I ask is to tell people that your ostomy covering is not a bag, it is a pouch.
I have a loop colostomy atm and will soon have an end colostomy.... I too have feeding suppelmets etc as well as umpteen other health problems and complaints. (permanent catheter neurogenic bladder and bowel tethered spinal cord syndrome spina bifida etc) I'm 34 and have 3 kids n am wheelchair bound. any who moral of my story is it is SO NICE to see some 1 else out there who's young n has similar problems but doesn't let it affect their attitudes or life. n it's great you are sharing as my family n friends have NO IDEA what it's like to have an ostomy so any info for them is great. 😊😊👍👍
Thank you so much Kayla!!
You are wonderful
YES the sound is so funny sometimes and you have no control over it. I learned to just laugh through it. And if someone comments on it I just tell them you pass gas right? I just tell them my “baby butt “ is having a field day and I have no control over it.
My big bowl blew up in 2017 and I have a permanent ostimy bag. I called to place my normal order with Edgepark and freaked out when they told me they needed an update or confirmation from a Dr before they could ship to me. Turns out it was for insurance purposes. But it left me in a panic. So that's just an FYI from me. Don't run out of supplies. Make sure your insurance company keeps a renewal on file.
Who i this lady? What a character! Bundle of joy! All off the cuff.Brilliant!
I just found your channel . I have a J pouch ( illeostomy) internal colostomy. I gave had it for more than 2 decades . Your description of things they never told me .. Is like being able to go back and say hey Dr this stuff HURTS
I had mine about 27 years ago an I had just above my belly button right down to the top of my pubic bone 40 stitches and they also had to have my rectum done and the whole of my large bowel out big operation but am still her
You’re doing a good job of talking to people about it xxx
You give me Hope! Thank you!
I'm at hospital right now and removed my colon a couple of days ago. The hardest thing I find is the smell when emptying and changing the bag and the strangest thing I thought was that I got to eat till a couple of hours before the surgery
And great video btw! The sound was great!
My trick is to put a little bit of mouth wash in my pouch, it helps with the smell. Good luck in your recovery.
globalko some people put a couple of mint tic tacs in their bag. Not sure if you're in the UK but I use Ostomist Gardenia & Jasmine drops which makes a big difference too. Tip some in the end every time you empty. You might want to wait a month or two before using and let your skin and stoma settle in.
I had my surgery last week and I feel like i can smell it all the time!
I had the same shock in the hospital and my nurse said she couldn't understand why ALL new ostomates said they could smell it after emptying. I finally figured out WHY: THE HOSPITAL GOWN is like a TENT~~ It DOES collect the odor and waft right up through the neck hole.
I almost ended up with an ostomy, my Crohn's was so bad they were going to go surgery. I decided I wanted to wait, thank god the swelling went down and I didn't need it. I worry about the day I need surgery.
My brother is same. And surgery is only option left . Really not sure what to do next
I had a temporary transverse colostomy...4 months
I was interviewing a woman once for a job. She said..excuse me..do you have a transistor radio under your shirt????
I used to use bags that had like a tupperware ring for abdomen that stuck very well. The bags were open or closed and had the tupperware ring that fits in the flange. Worked great.1983 Insurance paid partial amt.LOTS of money.
A great fan from FL.Mary
Hey girl!
I've been using a Lav mic. It makes voices sound super clear so we don't have to project our voices as much. Plus, it won't pick up background noise as bad as other devices. I have one that plugs right into my iPhone that I picked up for about $25 off of Amazon. I'm looking into a new one that has its own battery supply, which will work with my DCLR.
The Front Butt TH-camr I'M SITTING HERE WITH A STOMA AND I REALLY DON'T CARE ABOUT YOUR SOUND PROBLEMS. JUST SAYING!
i hink you re so brave speaking of these things.
Excellent video. I was told before my surgery that I would be able to wear my jeans and other pants. That was not true. I could not wear any pants with a waist band due to the location of my stoma and pouch. The waist band rubbed against the pouch causing a lot of discomfort. I had to wear loose fitting jogging pants or bib overalls.
BRR It totally depends on the position - I was told I probably couldn't wear jeans and am actually able to because my stoma is high up on my belly. Some stomas are placed right on the waist line though, making tight pants hard to wear
If someone kicked me in the stomach, they would have poo flying out at them.
I'm scared that this is my next step so thanks for making it less scary
My husband had to have his bladder out in March due to deterioration from prostate cancer radiation 10 years ago. A year before his surgery he had a superpubic tube put in his lower abdomen for urine drainage
Sine of the best info ever. Your right they dont tell you a lot of this, you just have to discover it on your own. There is not an ostomy nurse within about 150 miles of me. I sure wish there were more. Even after years you still have questions and problems
I wished I would of found this video before I got my surgery, but you are 100% right I had to learn as I went through it and still am. Very good info!!
Thank you so much for this info! It is life changing. I appreciate all the knowledge I can get before the surgery.✌🙏☺
i got in a car crash last year resulting in me getting an ileostomy bag, and it was high up bc a lot of my colon was destroyed so it was very liquid and it was an emergency surgery and it also leaked everyday for 9 months. i have a kinda large scare like 4 fingers below my boob
Woah that’s crazy I hope you’re doing well now
FYI-If you are going in for a reversal surgery, you have to be nicotine free before surgery. It takes 4-6 weeks to get nicotine out of system. They will do 2 urine test before surgery to make sure there is no nicotine. Just some info for the smokers out there. Going to have to quit. Helps the healing process.
I had to irrigate a lady in the nursing home back in the summer of 1974 and it was very strange, she was very uncomfortable though so we had to give her some relief
I'm currently in Nursing school and learning about Ostomy care and I was wondering about contact sports such as Rugby, Hockey, or even American football. Some of those belts you mentioned, are they sturdy enough to last up to 80 minutes of constant tackling?
Polly carbonate shields, yes but Carbon fiber..😉
McKesson wouldn't send me anything to my PO box,we are rural, we don't get home delivery. And they charged my $600 for I don't know what supplies because I haven't gotten anything from them since I came home.
I had 4 surgery's so far 3months in hospital and it could be wurse god bless the NHS and I still go the
Pub
Whats up with brits being so happy about the NHS? Us germans are constantly complaining how shit our state health insurances are,
despite them actually paying for more stuff as far as I can tell.
Teach us your ways.
We bless the NHS because everything is free, you only pay a paltry £7.50 prescription charge for medications and supplies if in employment. Yes I don’t mind paying more tax for this because the point is everyone has access.
Have an ostomy for One year and I am having so many problems and no help from my Dr. I feel like I can’t go anywhere it was the worst experience of my life
Do you ever get help, relief, answers? I hope so
Can you have it reversed?Has it gotten any better?
Congratulations on your new car !! And thank you for your videos……wish I could see videos with the stoma’s and bags were as high up as mine .🤦♀️❤️
i've dealt with chronic constipation my entire life. right now, i do not have an ostomy- but it's looking as if it will become a very real option for me. i currently feel like i have to choose between being in pain and constipated, or being in pain and incontinent (using many laxatives). my muscles are too weak to have bowel movements normally, and i just wanna say thank you. you've made me feel better about the possible ostomy i may be receiving in the future.
I’m in the exact same boat, I have accepted the colostomy and having it done on the 20th x
@@ashtongoodlad4174 were you alao chronically constipated anx how old r you?
@@ashtongoodlad4174 were you alao chronically constipated anx how old r you?
@user-ze7qh3sm8q yes I was to the point were I was hospitalised nearly every month & I am 25
@@ashtongoodlad4174 thanks for answering i am also contiplating getting a ostomy due to my severe constipation that started when i was 22 and now i am 29 its been too long dealing with this..
I am in so much pain and the bloating no appetite being underweight sucks..
I am just sad that i have to get this surgery so young when did your constipation issues start?
I have had my ostomy for a little over 11 years. I have had to have polyps snipped off from my stoma, and although they say that there is no nerve endings in your stoma, I will say that when I had some polyps clipped off I did in fact feel pain with the clipping. js
At 2:52 into the clip I was so bored with the irrelevant chit chat that I was going to click you off. But I hung in and I'm glad that I did because eventually, you imparted a lot of stellar information.
Thanks. You're a thumbs up for me
thank god... what would she do without you :-p
I've been having gastro problems for years always being constipated and only going to the bathroom once a week now the past 5 months things have changed I've been seeing a gi doctor alot I've had cdiff 3 times in 5 months and and after i finish this go around they are finally going to do a colonoscopy and they think i might have Crohn's disease
I don’t have an ostomy bag, but I am SO interested yet concerned why there are not better options for this!? Is this really all doctors have come up with so far :( my heart hurts for these people.. having been anxiety ridden my whole life I’m not sure if I could cope.
Thanks alot for your sharing, Zak & Maggie! Smoga kita semua smakin sehat2! Gruess aus Indonesien!
Ok girl you seem to know stuff, I’ve had an permanent ostomy now for almost 10 years. Have discovered an opening around the bottom of my stoma I’m scared and my insurance is cheap! 😳 I can’t find a Dr. What should I do. And your right the noises are embarrassing. I’m getting so sick and tired of it! HELP😕
Do you mean the skin is separating from the stoma? If that is the case, I would say it is important to see your surgeon or at least a WOCN to ensure it is ok like that. It can be a source of infection if it continues to get bigger!
Thisxwas Awesome video,Thank you 🎉🎉
Stoma nurses in the uk do come to your house after you return from hospital, they are the most kindest of people.
AMEN on the intestines moving!! I was so freaked out when I saw Stella the stoma after surgery and it was moving 😂 same goes for the nerve endings. I was so nervous that it would hurt.
Molly C Hahaha I love the name Stella! so catchy! Thank you for the comment - definitely odd seeing them move around!
For me, my stoma is sounds like a frog croaking under water. Mine is an Iliostomy, after colorectal surgery. My colon was totally removed. I use edgepark, coloplast brand.
John,I just had my ileostomy done on 3/27/18. colon totoally removed like you. how do you deal with the smell and taking showers?
You mentioned in this video that you have two children. Well, you take excellent care of yourself because you barely look 20 years old.
I am going to have my bladder and prostate removed very soon. I am old, I am 60. I am absolutely terrified. I have already had 15 surgeries as I was diagnosed with C in 2012.
I am checking out videos trying to learn what I have to do. I already have to do a numerous of other things to just stay alive. I have had 8 UTI's last year (2022) and been admitted to the hospital for lengthy stays.
I am confused, I thought only urine comes into the bag. A bit of a bold direct question, do you no longer evacuate your bowls the normal way?
After the surgery, how long did it take you to fully recover? My doctor said he may have me go to an assisted living because I have nobody to help me. Hmm... Would you want to come over and... Yeah, I am sure that would be a no as I am sure you have an amazing family.
As I sit here and type out this message I am in a lot of pain and I struggle as I don't want to keep taking Norco.
Any advice for newbies who are on the fence?
Thank you for sharing your advice. You, Rock!
Good idea about the music! Before and after, not during!
I have crohns disease and had a colostomy bag for 4 months and just had my surgery in Jan
I had emergency surgery that ended with an osteomyelitis bag due to diverticulitis and an aggressive kink in my colon. My health care nurse with a wicked sense of humor said “ look at this way, you butt hole is now in a new location.” I find it funny that people have a hard time adjusting to “poop”, when all it is , is composted food. Think about that! The food goes in, the body takes out the nutrients, the rest is just compost.
I have a ton of complications after my fistula in ano.. but surgeons say this is my only option..because I have bowel incontinence, sphincter nerve damage and a rectal prolapse. I'm scared to have the bag..i had 7 operations in 11 months.. so I'm really tired of chronic pain.. please could you advise me on what it's like. I'm female.. studying law, I'm basically a cabbage. I just want to be healed.. but I'm overly stressed as I am on antibiotics depressants and sleeping pills.
You sweet person, lovely personality amazing doll eyes. This will help so many people.
you are a voice that people help i have psc , ileostoma the information🌍give hope to a lot of people
I have no idea why this was recommended to me. Probably because I had bariatric surgery and was looking up bariatric videos?? But either way. I find medical stuff interesting!
I have a question - I am sensitive to the adhesive on bandaids. My skin gets red and inflamed quicker, easier and worse than most people. Should I expect this to happen with the adhesive on the wafer/disc? How long can you go without wearing it, allowing time for any redness, wearing, etc to breathe and heal?
I met my stoma nurse in the hospital. Love her!
Maggie your video was so helpful I had my ostomy surgery done 10 weeks ago and before surgery I was not told about the possibility of getting hernia but just last week when I went back to my local hospital I showed my stoma care nurse swelling around my stoma and it's quite painful she said it's ahernia starting I was shocked when I googled about ahernia but because of my weak bladder I have to use alot of pressure to empty my bladder and it must have been that, that started my ahernia at this early stage. I just pray and hope it does not get worse and need further surgery. take care Michael from Ireland and safe driving with your new motor.