Permanent Stoma or J Pouch Surgery? | Hannah Witton
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- Опубліковано 22 тра 2024
- I currently have a temporary ileostomy (my #MonaTheStoma), and am figuring out whether to get a permanent stoma or go for a J Pouch, so I asked my audience about their experiences!
Questions from the video:
1) Which did you choose & why? Was it an easy choice? Or did you not get a choice?
2) What is your lifestyle/poo routine like?
3) Have you had any complications?
4) If you haven't had the second surgery yet, which way are you leaning?
Let me know about your own experiences in the comments! And thank you to everyone involved in the video:
Anne
Billie - billieander...
Carmelo
Ele - / missele12
Emily
Katie May - www.ktmy.co.uk/
Sarah - / ununpentium & / ununpentium89
Vicky - realitysx?...
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I don't have these particular conditions, but I think anyone talking candidly about illness and disability is doing awesome work. Thank you!
Exactly how I feel. I want to be as educated as possible.
This was one of the most frustrating parts of my illness and its resolution, kidney failure and transplant. I could find support groups where people groused about dialysis but actually getting straight talking about the various options was very hard. Leading up to the transplant the transplant center was really great about ordering every test they could come up with but answering questions about living with a transplant? Not so much.
Yes! I have no need to research any of this, so I was pretty clueless tbh. I've learnt so much more and become so much more educated since hannah has been talking about this!
@@aimeetrudgian4980 Don't ever listen to these people except to prove to you how bad it is to blindly follow doctors. It's an injured gut and can be healed through diet and lifestyle.
I'm Emily, from the video! So pleased that I could share a little bit of my experience and life with Jamal (my j pouch)!
hi Emily!! thanks so much for sharing :) xx
Hi Emily did u say u had hirschsprungs disease? My Daughter had it, shes nearly 16 months now & has n ileostomy she was suppose 2 hav it reversed on 18th of Oct but she ended up having a temperature so op was cancelled. I guess it wasnt meant 2 be but op date will be rescheduled I wonder if u can help answer some of my questions I hav xx
Hi Emily! This is a totally unrelated question, but I love the glasses you are wearing in your clip! They look so good on you! Where did you get them from?
Thank you for contributing! I also have a j pouch and I wondered if diarrhoea and constipation was normal because no one ever talks about it. Now hearing that it happens to other people too, it’s made me feel better
As a newbie doctor, these videos you make are just as educational! It's so important to listen to first hand accounts from patients who have actually experienced the stoma and the reversal. You can only learn so much from books and journals. Thanks, Hannah!
ah thank you! It means a lot to me when health care professionals say that they find value in my videos!
@@hannahwitton another junior doctor here, you rock Hannah! I was just thinking how I will for sure show your videos to some of my UC patients to make their journey easier :) love from Croatia 😘
+
@@hannahwitton I don't think I've commented this before, but I've used your older stoma videos to educate patients. During my internship, I had a 19 year old girl suffering from colon cancer in my ward and I showed your video on Mona to prepare her for what's to come. She didn't speak much English so I'd just skip over areas and translate where needed. I really think it made a huge difference for her to see another young girl going through what she did. She would request me to do her dressing everyday so we could watch your videos together. She named her stoma Hannah after you!
And btw, I am from India so please know that you are making a huge difference worldwide.
How common is having a stoma AND having constipation?
I don't have a stoma but I've clearly been watching so many of your videos Hannah that UA-cam thinks I have a stoma because half way through this video I got an ad for a stoma guide for people having issues with their stoma
v targeted advertising
hahah so did I!
Me too!
Same here!!
I got an ad for keto meal replacement. 🙄?
Don't know why I am watching this. Probably because Hannah can make even a video about pooping interesting.
poop poop poop
Hannah, you're lucky to have a choice. I have a permanent stoma, ileostomy, I didn't have a choice because I had colon and rectal cancer. In order to improve my odds of the cancer not returning I had to have it all removed. The one good thing about a permanent stoma is I NEVER have to sit on a public toilet again.
Id say its sometimes easier not to have a choice because it can be so hard to decide what to do
How often do you poop on a public toilet anyway? 😜
Mostly you pee there, and for that you can use an STP device 😉
Aaaah you featured Ele! I’m so pleased, we call each other our “bagwives” because we bonded so much over having our stomas! It’s great to see her in the video and I really like how everyone’s experiences were represented on this topic. 🥰 I am also currently waiting (3 years now) with my rectum hanging out by itself, in the hopes I can also have a baby before I remove it and make Squishy my stoma permanent. It’s all a bit faster than I would’ve intended, but if the second surgery made me infertile I think I’d be more upset than having a baby a few years earlier than originally intended. Good luck with everything Hannah!
I’ve had a stoma since I was 8. I’ve grown up with it and right now as I’m nearly 18 I am adamant I want to keep my stoma because it’s really all I know. Maybe my mindset will change but I guess we’ll see! My surgeon suggested thinking about it again at 50 so at least I have 32 years to think about it!
I have a jpouch. There certainly are things I didn't expect, like learning to change my behavior and diet to avoid potential embarrassment. To be frank, other that the challenges of surgical recovery, the only other problem I wasn't warned enough about was making a mess while asleep sometimes but I've had ileostomy bags leak before too. I know it's a lot to think of, but having had both the jpouch is better. Especially with supply chain issues that happened with Covid, I think that at least during disasters I won't ever have to worry about getting ileostomy supplies. It is a hassle to adapt to jpouch and some people get pouchitis, maybe I'd suggest otherwise if that had been happening to me. Good luck with whatever you choose.
(long story)
I chose the j-pouch, after 9 months with a ileostomy (which I got after years of struggle with ulcerative colitis). It's genuinely been one of the best choices I've ever made. My stoma was also well-behaved and 'easy'-ish to live with (poo not too thin etc) which would make it more likely that the pouch would be well-behaved as well, as I understood. I was not very keen on having surgery again, but my doctor advised me to go for it. Biggest bonus: I can fully enjoy going out for dinner again, or just meals in general. My stoma started to produce when I started eating, being a very distracting feeling (for me). Also, sports were difficult for me. I do windsurfing, which is very difficult to do with a stoma (equipment is basically incompatible) but now, just a few months after the surgery, I've gone again and loved it!
I have limited issues with toilets, especially not a fan anymore of 2 hr trainrides. Currently, I go about 4-6 times a day, but it's not always a good day. I've found that going before I leave my home is usually good enough. With my stoma I also had limited toilet worries, since I sometimes had a leak.
About the kids btw, my doctor told me that the permanent stoma indeed has some risk related to pregnancy, but the J-pouch doesn't have that. He told me that this is because the uturus sorta leans on the rectum, and thus it is not supported well anymore after getting a permanent stoma. With the J-pouch, it will still have a support and people generally get pregnant.
I think it's most important to find a doctor that's a super expert on this topic to reduce risks. I took this road with confidence and I'd recommend it :) #notadoctor
As a former nurse I’ve taken care of people with stomas and pouches. J pouch issues such as flair ups and infection always seem to complicate treatment, and rarely subsided usually resulting in unplanned surgery and extended recovery.
I think you have wonderfully adapted into a very healthy relationship with “Mona,” and your videos- regardless of the topic- are a well needed resource!
Don’t stop!
Anyone who has contributed to this video has my sincere admiration. It really helps people like me, who work in the healthcare system, but don't have any experience with these conditions. I can't even imagine how helpful it might be to those sharing these experiences. Thank all of you, and btw, you all seem incredible likeable!
I would love to see a video of you and Hank Green and the differences/ similarities with living with UC!
Wait, Hank Green has UC too? I didn’t know that...
Hi Hannah!
My name is Lauren and I have a permanent ileostomy with a previous jpouch due to ulcerative colitis. I had an ileostomy off and on for about 4 years (2013-2017), and when I did not have the ostomy my bowel functioned from the jpouch. However, due to complications with my jpouch, I had surgery in 2017 to complete a permanent ileostomy. As a young adult with an ileostomy it was terrifying to think I would have this for the rest of my life, but here I am 2 years later and I am so grateful that I made the decision. Having a jpouch was a lot tougher in my opinion because when your body tells you to go to the bathroom you NEED to go. It was much like living with ulcerative colitis again because the pouch only allowed so much room to hold stool. With the ileostomy I am free to do what I want when I want and I've realized that it's actually come in handy at times (surprisingly). Once you get over the fear of what other people think about your physical appearance it is really freeing and it seems that you've done a great job at feeling comfortable in your own skin. I am now finishing up my last semester in school to become a nurse and I plan to be an advocate for others with ostomies because we need more people like you! I'm sorry this is long and you may not see it but I hope it helps someone out there. Thanks for being so open with your health as I know it benefits a lot of people out there.
Thank you for this view into the two options. My son is an infant with an ileostomy. I’m struggling with the future choices I will need to make for him. I totally agree there is a freedom to the ileostomy. He has Hirschsprung’s disease.
I just had my temporary ileostomy converted into a permanent one via rectum removal. I'm (24M) decided that needing to rush to the bathroom several times a day did not fit my lifestyle and I had no problem with my temp ileo over the past year. Though upon closer inspection post removal, the rectum was in no shape to handle a jpouch procedure so in the end I think the choice was somewhat made for me. The risk of jpouch complications and several additional surgeries required for a jpouch were not appealing to me. So far I've had zero complications post op and I'm 6 weeks into recovery from a rectum removal. Fingers crossed everything heals well! #nogutsnobutts
hope the rest of your recovery goes well! :)
@@hannahwitton Thank you!!! I'm sure you'll be able to make the best and healthiest decision for Mona the stoma with some time and research. Best of luck!
I didn't have much choice. My UC began near the rectum and progressed up the colon over the years. Given that the J Pouch was relatively new in 1986, I took the safer option and haven't looked back.
Best of luck with your recovery! I went back to a J pouch, but an seriously considering going back to the bag. It was so much easier, less pain, easier to live a normal life, eat and drink whatever I want (including my beloved beer). With the pouch, I have to intermittently fast, watch everything I eat and drink, and can’t venture far from a toilet. Think you made the right call buddy!
I love that you're open enough to do these videos. As a medical student you've broadened my thinking so much and I'm grateful for your honesty and that of your contributors
I am 22 and have had my temporary ileostomy due to UC since April of 2019 and have adjusted extremely well. The same week I was diagnosed with UC, I had emergency surgery to remove my colon and ended up with my stoma, Stanley. I’ve been having a lot of complications with inflammation in my rectum-I’ve tried suppositories and hydrocortisone enemas but nothing seems to be helping. I’m currently leaning towards just removing my rectum to eliminate my UC symptoms and urgency and having a permanent stoma but I’m also hesitate because my stoma and living with UC is still so new to me. I love your videos Hannah and watching how you’ve adjusted to stoma life really encouraged me to recover to my fullest after my surgery-you’ve been a HUGE inspiration for me! ❤️
I have a temporary ileostomy due to Ehlers Danlos Syndrome, as does my husband due to UC. I have some sigmoid and all my rectum left, but no colon. My husband doesn't have anything left but can be a candidate for a j pouch... However, he's had his stoma for half his life and his pelvic floor might not be optimal for this choice. As for me, I have a connective tissue disorder, which causes a lot of stoma issues like organ prolapses, stoma retractions, blockages, hernias, pelvic floor damage etc. I'm contemplating "reconnecting" but worry about how my eating and "bathrooming" will change, since the stool is way different without a colon and accidents and frequency are a concern. But having an ostomy has been hard for me due to complications and wardrobe issues (idk how other ostomates say they can wear whatever with an ostomy... Clothing is really tough for me bc the pouch is so obvious 😔).
I've had my stoma for going on 3 years. His name is Laird and I named my husband's stoma Pootina (he's Canadian, and it's a take on poutine 😂)
Hi, I have hEDS and a lot of GI problems. I didn't know that things could progress to a stoma for us. At what point did your doctor say it was time to go forward with a stoma? I'm working with a new GI doctor so I'd love to hear another first hand account of EDS related GI problems.
@@jordanleighwheatley
hey fellow zebra! 🦓
My case isn't typical.... My eds affects my organs moreso than my joints (my joints are obviously still affected, but my organs prolapse, and I'm also prone to nerve damage, which also affected my gut, in addition to other issues. If you'd like to chat more privately, I'd be happy to give you more details and answer any questions you may have! Eds is a tough thing to deal with, and I feel so much for you for what u are going thru. 🤗
@@summersalix I would LOVE to chat more if you're open. My instagram is @jordanleighwheatley if youd like to go that route.
@@jordanleighwheatley
Yay, awesome! It's always nice chatting with someone so relatable. I'll try to find ya and DM ya over there!
@@jordanleighwheatley just sent ya a DM!
I feel like I've learnt so much - to everyone speaking out about these conditions, you're all amazing!
I had undiagnosed UC for years, and told my GP many times but they wouldn’t believe me. In December 2016, the UC went toxic, and after a month of bleeding, pain and starvation, I had an emergency life saving subtotal colectomy. After the surgery, I was finally diagnosed with UC. I also developed fibromyalgia as a result of the trauma I had gone through.
I am currently struggling with the decision of whether to have my stoma made permanent or go with a j pouch. With fibromyalgia making everything more painful, the added risks and possibility of multiple surgeries, I’m leaning toward the permanent stoma.
It’s a very difficult decision, and as you rightly point out, most of the information about it is surgical explanations and doctor speak. It helps so much to hear the experiences of these brave souls, and to know there are real people in the same difficult situation as me.
Thank you so much for making this video. The more people speak openly about these issues, the more it will help to normalise stomas, and lessen the stigma around the topic.
I know this is an older video, but my mother just had an emergency bowel operation and now has a stoma and you were the first person I thought of to learn more about it. Thank you for speaking so openly. My mum's a sensitive and old fashioned person so I'm looking for anything I can find to help her feel confident with it. You're candidness and confidence to share about the topic is SO appreciated
Edit: and thank you to everyone who shared their story in this video too, it means SO much
I don’t remember all of the questions but here goes. I got diagnosed with Crohns at 7. Health was horrible, I was in and out of the hospital, I got multiple fistulas and had a stricture in my rectum. At 12 I also god diagnosed with ulcerative colitis and everything just got worse. I was always in the bathroom. No medications seemed to work. I was anemic. Got arthritis. At 14 it was the end of the road and I needed to get colostomy. They gave me that, and I had a temporary one for about a year. I never had an option of a j pouch because I was too inflamed everywhere. My rectum didn’t get better, and the rest of my colon contributed to get worse and more ulcers. So after a year, at 15. I had to get a permanent ileostomy. I’m now 25 and I have barely been in the hospital, I don’t have the pains I always had. I’m much healthier over all. Best decision ever. They tried to put off the first surgery for a while longer to help me out because I was young, and I told them to just get it over with. I can’t imagine how much pain and discomfort I would still be in without my ileostomy.
I went for the J-pouch. Personally I couldn't live with thinking what could've been if I hadn't made the choice. The way I see it, I could always go back to the bag if it doesn't pan out. So far it's been going well, around 8 months in to having a J pouch and my life is relatively normal. A lot more convenient than a stoma bag in my opinion.
Hi Jacob. I hope you are still doing well. Can you give me an update on how you are doing? Thank you.
@@malyhe2007 Hi, I am still doing well, my experience has been a relatively good outcome with no complications.
@@StaleNinja I’m very happy for you. They want to put me on zeposia for UC. I’m afraid of all these drugs and afraid for my future.
@@malyhe2007 Hope you get it sorted, I would try and research what treatments you're having, and speak to your doctors about any worries you have.
I had an ileostomy for 4.5 years and got the opportunity to to get a j pouch. I had the surgery on the 17th October, since then I've had discomfort and ring sting for upto 6hrs a day and it has yet to settle, I had no troubles with my ileostomy but when the choice was given I thought ot best to go for it and if it doesn't work I have the option to return to the ileostomy. I frequently visit the toilet upto 8 times during the day and 6 times during the night, I'm not sure if this is standard after the surgery
Wow - thank you, Hannah and all of the people who shared in the video AND in the comments. What a community. I'm learning so much and am inspired by everyone's courage and tenacity.
love this community 💛
I had ulcerative colitis for 6 years and had to get an ileostomy in 1987. I did not have a choice. I immediately felt better and recovered quickly. I elected to get the J pouch in 1989. This was a difficult decision since I was feeling quite well. This surgery was harder on me than the first. I think it was because I felt so bad before the initial surgery. The final surgery (connect to rectum) was relatively easy. I have been blessed to not have any problems since 1989. I would make the same decision again. Good luck.
as I have said before, I do have a stoma but for my pee, not my poo. I've had it for as long as I can remember and I don't have a choice to get rid of it, as far as I know. I'm completely fine with my stoma, but I 100% understand the "I'd see my whole stomach again, without a stoma in the way" (in my own words) argument! that's SO valid, and anyone saying otherwise is dumb, I'm sorry. it doesn't have to be an argument that is important to them in their own journey, still a valid argument.
Thank you for bringing attention to the J-Pouch and Ileostomy experience. In the last year, I had an emergency total colectomy due to aggressive case of UC (no choice) and was given a permanent Ileostomy, however was always told I would have the option to switch to a J-pouch in 6 to 12 months. In the past 6 months, I decided to go with the J-pouch. Obviously every body is different, but so far my J-pouch has been a nightmare. I had the typical “butt burn” irritation for the first 6 weeks or so, which I managed with Calmoseptine ointment and warm soaks. I currently have between 12-15 bathroom trips a day, similar urgency than with UC, and recently developed fissures that are INSANELY PAINFUL! If the fissures can’t heal, then I’m going back to a permanent end Ileostomy. I hope everyone going through this finds relief, and it’s certainly better than being six feet underground!
So interesting to see such a wide variety of people talking about their experiences
I was diagnosed with Crohns in 1992. My first surgery was in 1994 when I got my colostomy. It was not my choice. My gastrointerologist at the time suggested it as a way of allowing my bowel to heal. When 2014 came around I wanted to get a reversal. So we looked into it... haha. I also had to have surgery due to developing a bowel to bladder fistula which was causing faecal matter to pass into my urinary system. Due to a complication with my rectal stump in which we found I had a massive stricture, the decision was made by my doctor to remove my anus and rectal stump and have a permanent stoma.
I have a closed pouch which I use to collect my poop and I change/replace this with a fresh one about 3 times a day. Always shower with it off to wash the area around my stoma for hygiene reasons. Only complications I get are if I eat too much fibrous food and get a bit bunged up, which causes very bad stomach cramps. Very, very bad cramps. Like contractions.
I deal with it the best I can, but from a mental health perspective, I find it really hard at times. I've had a stoma now for 25 years. The fact that it is now permanent, and with all the BS that comes with having a stoma, messes with my head. I hate it so much...
This concept of videos is such a gooden, I really enjoy learning from others experiences and the way your videos are edited makes it really easy to follow! I hope you get to continue this style!
Discovered you not long ago, but I have been hesitant to watch some videos. Still in denial about my health, but I am getting there and your videos help.
Always fascinating to read/listen to people talking about their experience, thanks Hannah!
This is an amazing video, thank you Hannah, and thanks too to the others who helped with this.
Love that people are talking about these things - great job Hannah (was lovely seeing other people’s opinions that have gone through these issues and holds more weight then just an information video)
After a colectomy and temporary ileostomy, several failed reconnections, a failed k-pouch, a gastrectomy, and a major bowel obstruction, I now have a permanent ileostomy. I'm only 23, but after everything I've gone through, my permanent ileostomy has been the best option for me.
I'm really torn between feeling deeply upset that someone so young is having to deal with such life-changing issues (but that just sounds patronising) and feeling immense respect for the way you deal with your health issues, turning it into something SO positive with this channel. So I choose MASSIVE respect Ms Witton. Brilliant channel.
i just wanted to say that you are so great. your videos are always so watchable and your frankness is so valuable and appreciated. i really hope that you catch a break health wise, and as a new mum at 30 i can say having a baby has been the hardest but best thing ive ever done and you will be amazing at it xxxxx
All this is fascinating! So much learning!!
I’m 18, and I have to choose which surgery I want. I have FAP, which is a genetic disease that causes colon polyps and cancer. If I get the JPouch, I still have part of my rectum, and therefore I still have a high chance (like 99% chance) of getting cancer. If I get the ileostomy, my chances of getting cancer drop dramatically, and I won’t need scopes every year anymore. I’m currently leaning towards permanent ileostomy, but luckily I have 4 months before my surgery to decide.
That’s a scary choice to make at any age. I hope that you find the right balance for you.
Hannah, your courage to be open and vulnerable for benefit of others is very humbling. So grateful your health and life.
Stumbled across this looking for something else but found it interesting and even learnt some new stuff.
1)Ive had a j-pouch since 2005 or 2006 (I cant remember exactly). I was about 21 when I was diagnosed with Ulcerative colitis. The drugs didn't work so I was told I would need surgery. I was directed toward having a j pouch over 3 surgeries. My self and the doctors never really considered a permanent stoma or at least not that I can remember ( I was pretty beat up by this stage and loaded with a concoction of drugs so my memory of the 6 months or so between my diagnosis and surgery are bit fuzzy). My would be surgeon was ex military and very much of a 'get the fuck on with it ' attitude so that perhaps had something to do with committing to a j pouch. I appreciated his directness and cold pragmatism and found this very positive.
2)I suppose there are two parts this answer my short 1 year experience with stoma and then the rest of my life with a pouch.
Stoma
Beat the hell out of having collitus. Inconvenient, in the way and irritated my skin but much, much better than still being ill. The stoma started off pretty active but started to calm down with time and as my body got used to eating a wider range of food again.
Finding a pouch that didn't irritate my skin took a while.
I dont think I can say I had a poo routine as I only had the stoma 1 year which is not that long of a time for your body to recover and adapt so my experience would be a poor reflection of living with one long term.
I never really had any body hang ups about it or anything else for that matter but compared to just going for a shit I did think it was more of a hassle. If your like me and find things like having head hair too much of an effort (I keep whats left of mine short) or don't like carrying loads of clutter with you everywhere then you may find a pouch a better choice and worth its potential disadvantages.
J-pouch
I do not regret getting a j-pouch and have lived quite comfortably with it for years, however the disadvantages of a J-pouch some of the contributors elaborated on I also experienced. I was prepared for this in my head beforehand but also trusted that over time my body would adapt and the problems would diminish. This is what I was told would likely happen and is indeed what did happen. My pouch and body performed better and better as time passed and this was very apparent to me.
After about 8 years after the last operation the progress plateaued but at a pretty good level. I felt almost normal. I only really take loperamide now very occasionally for example if I have several days in a row of eating food with veg skins or beans or high fibre I may have take a couple to slow my digestive system but a couple is all it takes. Before this I would take loperamide daily and a couple before activities where I new there would be a few hours where going to the toilet would be impractical.
In the first 6 months after surgery I needed the toilet alot but mostly it turned out just to be gas but I didnt and still don't trust a fart. This settled down as my palate improved and I learned when to take loperamide.
Now I normally get by with going the toilet 3 or 4 times a day. This can be affected by how much and what time I eat and wether Im at work or not. It never often goes beyond 8 times day and most nights I get 8 hours unless I eat late. I always wake up in the morning needing the toilet though.
3)The only major complication I had is that immediately after my last operation my gut twisted and blocked. This was pretty painful. The gp sent me back to the hospital in an ambulance and the surgeon left a family dinner to do emergency surgery. Fortunately my vigorous wretching in the ambulance seemed to untwist it and just before I went to surgery I very urgently and suddenly needed the toilet. The smile on the surgeons face was unforgettable and we both laughed our heads off as I was wheeled to the loo. Made me laugh remembering that.
Other than that the only things are, Im still quite thin and I get bad cramps if I dont drink alot of water.
All in all I think getting an Ileostomy was worth it even when I had the stoma. UC was not alot of fun, just being free of the fatigue let alone the pain was good enough. However Im very glad I had the j pouch and would not do it differently given the choice.
Thanks for discussing this everyone and Im happy to discuss it more if someone would find it helpful.
Have a good Sunday.
Paul
Thank you Paul. That has given me plenty to ponder about what I eventually opt for.
I'm currently in a situation where I had most of my colon taken out 18 years ago and was left with about 7cm on bowel so still had UC and go to the toilet 5 to 6 times a day so now I'm in a n awful flare up and I'm deciding if joouch is for me. This had reassured me quite a it that they cam work and still going fairly frequent won't be anything new to me
@@gerardmcinerney5765
I hope it works out well for you.
Hello Hannah! I am currently in graduate school studying the intestine (mainly from the perspective of the enteric nervous system and its function in disease but as well as a tissue replacement for UC and other resections) and I wanted to thank you for sharing so much about your disease and creating this community. Research can be very trying and your videos (and your followers) often remind me of why my work matters and who all it could impact.
I have EDS and have digestion and pooping issues, so I know this kind of thing is possibly in my future so this gives me so so so much hope for me that if this ever happens I'll be okay no matter what! Thank you so much Hannah!!
I find these sorts of video really interesting. I'm a student nurse and I've just found out that my first placement will be on the female GI surgery ward, so I feel like these sorts of videos really help me with understanding the patient
I have had Crohn’s for 14 years and haven’t needed surgery yet, but I love these videos because I know I may need to make this choice in the future! Thanks for educating us 💜
I love that you guys name your bags/pouches!
Such wonderful names❤️
I love your videos so much, they're so informative and fascinating!!
Your videos are very educational! I take care of patients who undergo ileostomy surgeries and also the BCIR surgeries. I'm learning more and more. Thank you!
I've had UC for 11 years and had constant flare-ups and surgery has been seriously talked about this year. I've always known that if needed surgery to remove my bowel that I would much rather have a permanent stoma than a j-pouch. This video has really helped reaffirm my decision! 💕
Also on the whole “being vain thing” even though I don’t have IBD (I have IBS) I think it’s a perfectly good reason and thing to consider that most people don’t consider or shame others for even thinking about. But it’s a thing, a HUGE thing because it’s your body and u have to see it everyday so it’s something to keep in mind. So I think it’s nice and interesting u highlight that in this decision process and kudos to u. I also just wanted to say that I love your videos and I love how open they r to so many health things that people refuse to talk about publicly. And lol idk being a teenager w a digestive “thing” can feel isolating sometimes and especially when resources r lacking. Like people who like makeup can go bond w makeup gurus or beauty channels but if people with digestive health wanna go watch a relatable video about “poop routines” it’s not as common. But yes, Im looking forward to ur journey through all this and just thanks for all u do
Thanks for these videos Hannah! I don't have a colon disease but I've had accidents and other health issues and surgeries through out my life and often felt disconnected from my peers in my teens. I was jealous because they were going on holiday in the summer and I had to have knee surgery yet again, with the months long recovery process, never being able to walk properly for years while being a former athlete. It hurt. It helps hearing from other people's struggle. Especially the name giving to body parts. I called my knee Erna for a few years whenever it was stiff and hurting and I couldnt walk. I also had a back brace for three years because of scoliosis named Karl. :-D
Hearing about complications also makes me very thankful for my functioning organs. I took them for granted. So thanks, Hannah for the support and perspective. Much love. Emmy
Thank you so much for videos. You have not idea how much these mean to me. I’ve been struggling with UC for over 7 years now and last week my doctor told me that I have failed out of my last class of medicine. He hasn’t told me what is next but I know I have to go to a larger hospital and surgery is a very real option now. Having videos like this really shows me that I am not alone. From the bottom of my heart, I am so grateful that you are comfortable talking about this online. Keep doing you!
I dont have any of these issues, but have suffered with IBS and that urgency to use a loo so know how that feels, can I just say thank you to you all for talking about this and so openly I know it will help many people out there and just making these things normal, living with a disability is hard enough with so many unknowns so thank you all xx
Thank you so much for this video. I have had UC for 21 years, had a temporary ileostomy in August, and am considering a j-pouch. I'm really struggling with the psychological aspects of having a bag (I struggle to feel good in clothing, dress etc.), but other than that it's been life-changing and amazing. I never knew life could be this good. I really would like a j-pouch, but the thought of having to run to the toilet or not having that control again really puts me off....plus the high rates of complications... I really feel the more I research the more I can't make up my mind.
Have you considered making a longer form documentary about ibd/stomas? This video is so enlightening and does more to educate than almost any documentary I've ever watched. Before you started making videos about IBD I knew basically nothing about it. I dont suffer from IBD but I'm so glad that i'm much better equipped to understand anyone who I meet who does.
This video was was super interesting and educational, and I think something like this would be really useful with birth control. Like you said, you can look up the side effects but hearing the experiences of others is really invaluable.
Thank you so so much for sharing! I have been in my UC flare for over a year now and poop my pants about twice a month. I’m currently in the process of switching GIs, which is a pain in the butt. I’m starting to think surgery is going to be the only option soon and it’s really intimidating. Watching your videos on this really helps ease my nerves! ❤️
You are a beautiful lady. I had a bag for 6 months after having chemo and radiation for rectal cancer. Part of the colon was removed and then it was reversed. Prayers to you on your decision and also the outcome. It's not easy dealing with this issue and even harder knowing it would be for a lifetime.
Hannah great video and very informative. Love how you have been able to gather followers feedback and turn this into a group therapy video. Really cool. More please.......
I have so much respect and empathy for anyone with GI problems after a (brief) bout of giardia! I experienced that urgency and fear for the first time and also how it can affect your whole body! I am now so much more understanding when people need to suddenly run to the washroom, and am more sensitive to the fact that they might be in there for a while. I think videos like these shed light on something that a lot of people don’t understand or feel comfortable talking about, and help everyone to be more empathetic.
Thank you so much for this Hannah..this content, for lack of better wording, has been super informative. My 10 Year old daughter is having a total colectomy tomorrow and we've decided to keep her stump with the hopes of an eventual j-pouch. Also a big thank you to everyone who participated in the making of this program, as it's very informative. You are all amazing 👏
When my cousin was 40 years old, he had an emergency surgery for partial removal of the large intestine due to intestinal perforation as a complication of diverticulitis. It got really infected and they had to remove quite a chunk of the large intestine and they couldn't connect it back to the rectum. He had a stoma for 6 months and then they tried to connect the rectum again but the surgery failed and in the end they removed the whole large intestine and proceeded with the Jpouch. I remember my aunt being super sad thinking he'll poo himself in public because the doctor told them that could be a possibility while his body adjusted to the Jpouch.
However, he's been living with a Jpouch for 8 years now and so far no complications, he's gained back all the weight he lost with the previous surgeries and also he eats like he used to pre surgery. He adjusted quite easily. No accidents either!
I think the Jpouch worked for him because he had a different condition; I understand ulcerative colitis is much worse so it may not work that well for people with UC.
Everyone in my family was new to stomas and Jpouches and it was quite shocking when it happened, so I think that's why he wanted to go back to his pre surgery poo routine and everyone supported him because that's all we knew. The idea of a stoma seemed terrible to us.
I was 16 when that happened and I've always had bowel issues (IBS not properly diagnosed with medical exams, just by a doctor that figured it out based on my symptoms) and I was afraid of having a similar surgery in the future. Thanks to your videos, I understand it better now, so I'm prepared to have a more positive mentality if it ever happens (though it is unlikely but anything can happen) and I'm aware that many people live with stomas too and they're doing just fine :)
Currently in the hospital with UC and may possibly need surgery. This video has been extremely helpful and informative. Thanks so much
I absolutely love Anne. And this video was fantastic.
wow this is amazing!!! so informative and interesting even though I don't have a stoma/any of these conditions, thank you so much for spreading awareness and just talking about all of it openly. i really loved that you included all of these little videos, it's really interesting to hear all the different perspectives. it kinda felt like you were all having a discussion/a panel on the topic hahah!
also, i had no clue that with a j pouch you still have to go to the toilet several times a day instead of just one-two!
Thanks for featuring me in your video and for allowing to me to share my story.
Glad I found your channel. I was diagnosed with Crohn’s in 2011 and since then it’s been a very rocky ride. My whole life I had bowel issues but it didn’t manifest as Crohn’s until later. I’ve been on Remicade and Humira which I both failed. Currently on Entyvio with hardly any improvement and the side effects have been debilitating at times. I have strictures in my intestines but the worst one is right at my ileum. I talked with my colorectal surgeon and we both agree that a removal of that stricture and temporary bag is the best way to go for now. I’ve been having so many issues lately and it feels like things are just getting worse. So I’ll probably be getting this surgery ASAP once I see her next week to go over my test results. Not only am I having issues with the abdominal aspect, but my pelvic floor muscles are just destroyed from years of abuse. I have horrible leakage problems that I’ve tried so hard to remedy. I honestly can’t wait to get this surgery. It feels like the light at the end of the tunnel. It’s so close but feels so far while I’m still going through struggles on a daily basis. I can’t work, I can’t travel, I can hardly eat, I can’t gain weight, etc. just so many problems that I can see just going away once I get the surgery. Thank you for making these videos.
Thank you all for sharing! This was super educational and interesting ☺️
I have a stoma due to severe UC. I had emergency surgery so didn't have a choice. I definitely don't want a J pouch because like you, my rectum is not well behaved. There's no way I want to go back to being incontinent and my stoma is very well behaved. I love the freedom of the bag. My surgeon isn't pushing me to get my rectum removed though. I just have regular sigmoidoscopies to check for cancerous cells. So far, so good!
I am about to talk to a surgeon about having a stoma due some pain and urgency issues that I am having, I have been struggling so much these past 3 years that I haven't actually left my home town and rarely leave the house. I am terrified of this surgery but your videos help me so much and give me confidence that having a stoma would be a really good option for me and you make it less scary!
While I don’t have colitis or IBD, I really appreciate your videos. I have a disease called scleroderma and it has significantly impacted my life so any videos talking about disability or chronic illness in a positive manner are awesome. Too often we who suffer do so in silence because the subjects are considered off limits. Thank you!
Hi I'm in a slightly different situation I had colon cancer a year ago and have a colostomy of which I have no routine, having it has made me really anxious, very self conscious and fearful, I'm not happy but it did save my life, I have a consultation due to discuss a reversal which is easier than a j-pouch coz I believe they just join the good healthy bits of my colon back together, hopefully , finger's crossed. Thank you for making this all quite cool to talk about, love your videos x
I've (21M) been through a very similar situation to you. I was diagnosed with UC 8 years ago, had my colon taken out 4 years ago, and lived with my stoma for another year. At that point, I was where you are now; the choice to have a j-pouch or to keep my stoma. Ultimately I chose to go for a j-pouch simply because I wanted to take the chance of becoming as close to normal as possible. I didn't want to have the feeling of a missed opportunity in the back of my mind for the rest of my life. I had no real issues with my stoma, other than the obvious cosmetic issues. Since having the surgery for my j-pouch, despite a very difficult first year, I am very happy I made the decision. The first year was full of a lot of pain, and many trips to the toilet. I had pouchitis straight away and would go to the toilet up to 25 times a day. However, pouchitis was solved with antibiotics and the pouch eventually adjusted so that I have control. Now I rarely get pouchitis (when I do, antibiotics solve straight away), and I go to the bathroom 6 times a day and twice at night on an average night. I may go to the toilet more than I had before, but there is never urgency or pain. As long as I plan well, make sure there is a bathroom nearby, I never have issues when I'm out and about! That being said, having to wake up a lot at night can be a struggle and really, is my only problem. There was a lot of short term pain that came with my j-pouch, but now I can do whatever I want, and pretty much eat all sorts. Once you learn your pouch, you can have complete control over your body. The long term gain made it completely worth it.
There's so much I could say, which is why its such a hard decision to make. So much to weigh up.... but I hope you make the right decision for you! Thanks for providing a platform for people going through the same. It always gets better! :)
I don’t have these issues my back is knackered I have 2 dead disc’s and just have constant pain to manage. But it is extremely interesting to Learn about the different conditions that people have and how people deal with them....
I think there should be a lesson in schools for children to learn about health and medical / first aid etc and teaching of sign language etc. Could you imagine how awesome that could be within a generation....
Keep up the great work with the videos and thank you everyone for sharing
I love learning about this! Thanks for uploading!
I found this so helpful I have Ulcerative Colitis and had my colon removed in May after trying various medications I had no choice but to have the surgery now have a temporary ileostomy. At first I wanted to keep the stoma as it has given me my life back and I can eat and not be in constant pain. Recently I am thinking that I do now want the J pouch surgery and am seeing a surgeon next month to discuss. Listening to everyone’s experiences has really helped and Hannah your videos kept me going whilst I was in hospital so thank you x
Really enjoyed this! So educational.
I have FAP (familial adenomatous polyposis) and at 16 years old I was told I needed to have surgery to remove my large bowel. I wasn’t given a choice, they did a one step j-pouch surgery which is very rare.
I’m now 30 years old, I’ve run into a few complications including desmoids and blockages. Desmoids formed after surgery and over the last 4 years I’ve had to be very strict on my diet.
Cold potato caused my first major blockage, I was in A&E for 8 hours to get everything flowing again. I’m on a low fibre diet, I can’t do spicy food, fatty or deep fried food. Also developed acid reflux, so I’ve had to cut out dairy and stick to water and non-fizzy drinks.
But my brother who’s got the same condition is completely the opposite, so each person’s journey is very different.
I wouldn’t be me without my j-pouch, it’s been a lot to get my head round over the years, but I’ve had a very good family and friends supporting me.
Thank you so much for making these videos Hannah!
I had a temporary ileostomy due to a severe flare up of ulcerative colitis, i then had the further surgeries to form and connect my j pouch and it was the best decision ever. i go currently about 5 times per day and once at night. I have had no complications with my pouch however have had complications due to multiple surgeries. I have not had to restrict my diet in any way and am able to hold and wait to go to the toilet rather than rushing previously. I personally got on well with the temporary bag ab adjusted well with a few hiccups with a different bag and them not sticking properly meaning i would be changing it in the middle of the night and it leaking straight away but overall i got on really well. The reason i chose a j pouch is i personally could not deal with the thought of having a bag for the rest of my life as i am only 18. The bag massively restricted my confidence also as i would be constantly worrying how full it was and if you could see it through my clothing and what clothing i could wear to avoid it being seen especially in summer in swimwear. Hope this helps someone in the middle of making their decision.
I'm a third-year nursing student, so I know of ileostomies, but I haven't had to interact with a person with one yet. I love that you speak so openly and honestly about your stoma, pooing, and life with your stoma. Speaking about these things is so important to educate ourselves and each other and to normalise illnesses.
Great video, as a temporary ileostomate due to colitis, it's always helpful to see different perspectives from people who have the bag, considering the j-pouch or have/had the j-pouch. I was supposed to have my j-pouch surgery just prior to covid, but I had to delay the surgery. In any event, now that I've had more time to think about it, I'm totally on the fence as to whether to proceed with or not, or just go with the permanent ileostomy, essentially for the exact same reasons as Hannah mentioned: current success/health with the ileostomy, and on the flipside, vanity, finding shirts where the pouch doesn't show (I'm a male & use the stealth belt, but still shows), possibility of complications/pouchitits, etc.
Know I’m late, but respect to you all for sharing, loved hearing from Carmelo to see another guy here 😅
Thank you so much Hannah for letting me participate in your video!! It’s amazing to help raise awareness and educate in life with a stoma/j-pouch!!! First time I’ve ever really talked about what I’m going through & wouldn’t hesitate to do it again xx
I would just like to notify you Hannah that the ads I got on this video was for a Stoma help-line/guide page 😁👍
I am having the J pounch surgery December 16th! I am so nervous to have it but it makes me excited to be put back together! I also didn’t have a choice to have this or not. It saved my life !
That was super enlightening. At first I was like I bet most people want to ditch the bag...but then I heard all the complications with the J pouch and how it seemed like they all continued to suffer in a way. How difficult a decision it must be but I can def see why people would prefer if given a choice at all to have a ileostomy permanently. I will never again sound encouraging to someone mentioning they may need to have a stoma when they say its temporary unless they have indicated that is what they want
I don't know if you'll see this so long after you posted, but I just wanted to say how awesome these videos are. I was diagnosed with Ulcerative Colitis last year and it's been a struggle. When I had my colonoscopy, my doctor said it was only of the worst cases he had seen in his 30 year career - the entire colon was inflamed from top to bottom. It's *mostly* under control right now as I'm taking mesalamine twice a day, but I do still get flare ups, bad gas, and really urgent trips to the bathroom decently often. And I still haven't figured out what I can and can't eat beyond figuring out that beer, any hearty soups (like chowders or chili), and greens (i.e. salad) cause bad symptoms so I avoid those but still see symptoms sometimes without knowing what's causing it.
Anyway, there's no surgery in the near future for me, but the prospect of eventually having to have it has weighed heavily on me the last few months. I've researched as much as I can, but your channel has really helped me because it's very different seeing someone who had the same disease as me sharing their progress and journey like this. Gave me a new perspective. So thank you so much.
I love these kind of videos because I‘m currently in the process of deciding too. I had my colectomy last year. Due to complications I‘ve had the temporary stoma only for nearly 2 mounths and then they went straight for the jpouch. Didn‘t really get a choice back then. Unfortunately I‘m struggling with constant pouchitis and this just feels like having a colitis flare up again. This sucks, so I‘m also thinking about going for a permanent ileostomy. Of that means not spending my life on the toilet again, I‘ll go for it.
I appreciated/related to a lot of folks naming their stoma/pouch. My first cancer was a tumor, which my mom and I just called "junior" and some of my nurses took to calling Fred.
Thank you so much for sharing!
Techinically, my stoma is temporary because I still have my jpouch but I have no intention of going back to it so eventually it'll be a permanant end ileostomy. If I could go back in time, I would chose to go permanant instead of going the reversal route bcause of all the issues I have had since the reversal started.
I had ileus straight away after my jpouch surgery which kept me in the hospital for a month, after which, my loop ileostomy caused me quite a few issues because it was so flush against my skin that it would burn under the adhesive and made my skin very sore. I had to use barrier rings under the bag just so I didn't have to change every day.
The biggest complication I had though, resulted in my current loop-ostomy; I had a blockage near my newly-working jpouch and after about two-ish weeks of being in agony from a distended tummy that made me look 5 months pregnant, I was finally put forward for investigation prior to possible surgery, during which one doctor perferating my bowel by accident which meant that surgery was the only option after that. I will eventually have a fifth surgery to remove my jpouch and rectum and form a permanant end ileostomy.
My "routine" is to change the bag every other day in the morning and empty it whenever I go pee or if it feels full (the timing of which depends on what I've eaten). I find the output from a loop ileostomy is looser than that of an end but nothing a bag of sweets won't fix.
It's a difficult decision to make so I would say take your time and do whatever you feel the most comfortable with.
Thank you Hannah & contributors for sharing your stories! I was glad (not sure that's the right word!) that you mentioned about the risks of leaving the rectum there because the whole video I was wondering why you'd have to make the choice of "forever" in having the rectum removed to make it permanent. I'm sure you'll make the right choice for you when the time comes :)
I was diagnosed with UC in December 2006, ended up with a stoma in Feb 2010 & had my reversal in October 2013. In that time I had a completely normal pregnancy and had my daughter in March 2012. I was told that having a baby with the stoma would make things a bit easier and help increase the chances of getting pregnant. I’ll be honest it’s not been an easy go with the jpouch. When I had my first reversal surgery I ended up back in the OR 9 days later for emergency surgery. The jpouch hadn’t been sealed completely and I had gone septic. Had to get the stoma put back and spent a month in the hospital. A year later I went back and had the reversal to the jpouch completed. Since the first surgery I have had a total of 8 surgeries (1 c-section and 7 UC ones). I wouldn’t change having my jpouch for anything. Having the stoma for me was an awful experience and the only thing that got me through having it was knowing it was temporary. I am grateful for the stoma though because I wouldn’t have been healthy enough to have my daughter if I hadn’t had the stoma placed. Thank you for bringing awareness to all things UC/Stoma/Jpouch! I wish there would have been videos like yours when I was going through all this in the beginning. Sending ♥️ from 🇨🇦
Hey there from Canada too! 🖐️ 🍁 I have an ileostomy and I'm so sorry for all you went thru... I'm glad to hear u are doing better now 🤗
Veggie Bee Thank you! Things with the jpouch since my last surgery (Oct 2017) have been great! How has it been for you?
@@MsJulieV
Yay! I'm happy to hear that! My husband has an ileostomy too and has contemplated a j pouch. I have the option of being reconnected (I have a smidgen of sigmoid left, along with my rectum) but worry about how it will be compared to the stoma. Did u need any pelvic pt or help "re learning" how to use the BR when u got the j pouch? I've had my stoma since 2017 and it already feels like I've had it for my whole life.
@@MsJulieV
I have a connective tissue disorder (EDS) so I'm prone to more complications than most (some months, I'll have prolapses and blockages numerous times, and other months are less intense, but I always struggle with digestive issues and bloating after eating). I have a stoma hernia too, which isn't fun. Clothing is tough too. Are there things u miss about the stoma and things you dislike abt the j pouch?
Veggie Bee I only had a little bit of difficulty at night time in the beginning after the reversal re-learning. But after a couple months that subsided and I’ve not had any problems with accidents or anything like that since.
Had a jpouch for many years and love it. I had a revision where I used a bag and there is no comparison. Go for it!
I'm so impressed with your attitude to your health condition. You're a lovely beautiful lady.
I dont have any conditions but always so interested to learn & hear ppl's experiences!! Its turns figures into real people's experiences which is something everyone should see :) Thank you & Everyone for sharing! X
I have EDS and although the symptoms are different from the ones you are discussing this video is just so important for disability awareness 💕
First off,your Awesome !! I was diagnosed 4 years ago with severe UC. I was pretty bad off the first 2 years, dropping from 220lbs to 124lbs over those 2 years . None of the drugs,steroids ,infusions,injections or diets were improving my condition. Dr's were wanting to push for the removal of my whole descending colon at that point. I was trying to come to grips with eventual choice of j pouch or stoma . Against my specialists advice, I continued researching other options on my own. I changed Dr's and tried an experimental drug that was being tested for approval at the time. I was lucky,my body responded well to the Entyvio infusions. Im not in complete remission, but in a way better state of physical health and mind. My Flare ups are less frequent with hardly any urgency .I don't know the details on how far you have gone with your surgery, but Please make sure you have tried every avenue before doing anything that cant be undone.
I hope you get well soon. Hanna praying for you.
I put this decision off for ten years. I also was happy with my stoma and did not want any more surgery and was scared.by risks and possible complications of pouch surgery. However things changed. Be aware that you are very happy with the stoma now and it is very wel behaved - this.may change. My pouch surgery was rough but i am very glad i finally took the plunge. It is not vain to not want a stoma for the rest.of.your life.
Another educational video and love it 😻 Thank you for sharing!