I had a J pouch procedure 22 years ago, and I'm a 59 year old male . It's been the best decision I've ever made. I struggled with UC for 6 years. Six years of flare ups, severe fatigue, cramps, hospitalizations and HIGH doses of steroids. The side effects from all the meds were bad enough, let alone the UC. I will admit, it took almost a year for me to feel the way I do now, but it changed my life for the best.
@@randallalford900 what are the risks of j pouch and should i try a j pouch before permanent stoma i am young 29 years old so its very hard to make a decision
I have a J - pouch going on 27 years now At the Cleveland Clinic . An still doing well I'm greatful for the years living .My way of dealing with daily bathroom issues clean ,move on be kind to yourself learn to understand your body enjoy life.
I had a j pouch it failed after 5 years , I have a permanent ileostomy now. I don't regret having tried the j pouch , at least I know I gave it a try. Thanks for your videos Eric, they really helped me mostly when I just had my ostomy, and still do today as well.
What was your experience of the j-pouch during those five years? Any major complications? I'm currently considering getting it done after spending the last three years with a stoma.
I have a stoma after 8months .. I had a j pouch dun threw my opp ... I am getting reversal in may .. my doc disagrees but my surgeon says my bowel was fully removed & says the pouch will b perfe6 fine for me as my, bowel was removed & surgery recome6 I use j pouch am confused ???
I had a successful j-pouch for about 6 years. Then I had a year or so of pouchitis off and on. After consulting with my doctor and surgeon I felt an ileostomy was the right choice for me. I have now had my bag for 21 years. There are frustrating parts of having an ostomy, but it's so much better than being in and out of the hospital. I truly recommend both surgeries. The have both served their purpose and were the right decision at the time. Hope this helps!
I'm the same as you, I have a illeostomy now after having UC and crohn's and having a failed J-Pouch. Both have advantages and dissadvatages. best thing is to talk to your surgeon . Illeostomy helps with having no pain, and less hospital trips, but has frustrating difficulties. Either way , people who go through this are strong enough to get through either choice
Did theybever determine what was causing the pouchitis? I have had a j-pouch for 7 years now and don't really think about it too much. I have a normal life now. But then I hear about people like you and wonder if if it's just bad luck, or were there lifestyle choices that caused the pouchitis.
@@jonvanwyk2026 They never really determined why I had pouchitis so many times. They think it could have possibly been the curvature of the "j" and that infection wasn't able to get back out.
I am 56. I have had my J pouch since I was 29. Works great. Although the last 10 or 12 years I have been having issues with a lot of inflammation in my pouch. The dr. Says it looks like chrones, but blood work says it’s not. I have no pain. Not loosing wt like most people with that do. We have to look every year at the pouch to make sure it’s ok. I’ve learned I have to stay away from anti inflammatory drugs. Don’t eat spicy all the time. Leafy stuff not all the time either. I do take a probiotic which almost gets rid of the inflammation. It is called Visbiome. I have a subscription for it. But it is spacificly for people like us. 400 billion. Cost is 80.00 a little more.
I can beat that. Now 62 I have had a j pouch since I was 27. The rest of your story is also mine, aside from being male. I live in a small country and was luck number 13 in the country for this procedure. I plan to enquire about the Visbiome. As an amusing aside I work as a pilot for a foreign airline and I got to fly with another pilot that also had a j pouch. You may ask how the subject came up but you wouldn’t believe the utter “ crap “ airline pilots talk to alleviate the boredom of the job. We joked that the airline should do a PR stunt about two pouch recipients on the flight deck. A demonstration of how “ inclusive” their corporate culture is. ( more crap) They do it when they have an all female crew, and I’m sure two pilots with our physiology flying together is far more unique.
I had the ostomy bag before a short time before having the second operation for the j-pouch. For me personally I prefer the pouch, even though I have a lot of bowel movements.
I just wanted to thank you for your videos. They have been so helpful and informative. I have an ileostomy due to colon cancer and felt so lost when I came home from the hospital. For the last six months you and a couple others out there have saved me in moments of stress and panic. I'm not sure if I'll reattach or get a j-pouch. I've heard so many horror stories (real life and the tubes) that I'm still unsure. Sorry no questions. Just thanks!
How are you doing now, Dana? I’m right where you were a year ago. I also had colon cancer, and am in kind of a dark place right now, with anxiety. It doesn’t help that I have had a life-long germophobia and mild OCD issues. Definitely not an ideal candidate for an ileostomy. :( Did you end up getting a j-pouch? If so, how did it go?
I had absolute terrible UC before having my ostomy.. I am planning on keeping my stoma.. my reasons call it PTSD but I cant think about going through pochitis.. I know its not as bad as colitis itself, but NO THANK YOU. My surgeon also said because my colitis was so aggressive chances are I would develop it as well.. Also my pelvic floor is terrible. I for years have urine incontinence, and I am afraid of poo incontinence with the J pouch. Also some say they still have to go to the bathroom 8 to 10 times a day on good days and maybe more on other days.. Maybe a bit better then when I had colitis but not much better iin my opinion. So Im keeping my stoma.. Dont fix whats not broken, and dont rock the boat anymore then it has in my life already.. Plan in the future to get the proctectomy surgery which would be sewing up my bum hole, bt after that hopefully no need for anymore surgeries after that.. If I wanted the J pouch that would be 2 surgeries and then if I ever had to go back to a stoma again yet another surgery.. None of its worth it for me
A deer friend of mine had a j pouch and was miserable due to having to go to the bathroom more and incontinence was a major issue unlike a natural rectom you dont have as much controle at least from what she told me so she went back to an ostomy and she became more active due to having less fear of accidents
I'm getting my j pouch hooked back up soon. I was struggling with it so they gave me a temporary ileostomy to give my pouch a chance to heal. My surgeon said it would only be a year, but it's been five because she didn't want to hook it back up. I got a new surgeon who is willing to do it as long as I'm taking Stelara and my upcoming scope procedure look good. I'm just so rediculously sick of this ostomy. I'm sick of occasional leaks, completely ruining expensive sheets and clothing, waking up at 2am to scrub my mattress, take a shower, and put on a new bag while my stoma is rediculously active, getting harassed by TSA every single time I go through airport security, and having to kneel on piss covered floors in public restrooms. I'm so sick of the embarrassment and shame. I once stood up at a restaurant in the hospital and the weight of my bag ripped off the seal and it crashed on the floor in front of everyone. I said "I'm sorry" and ran out. I went zip-lining in Hawaii with my wife on our honeymoon and it immediately ripped. I was hours away from our hotel. I had to immediately ride back with it leaking in our Uber. Because of this stupid bag, I can't snowboard, box, or play paintball anymore. More than anything, I just want to cuddle my wife without it ballooning up against her. We are having a child and I don't want this thing holding me back. I can see how it might be better for some people, but for me it has been a total nightmare. It's lowered my quality of life and genuinely affected my mental health. For me the j-pouch isn't perfect, but I was genuinely happier.
I'm sorry that you had such a poor experience with an ostomy, and I can understand how that experience was lowering your quality of life. I wish you all the best in the future!
Your videos are so very helpful 👍 I have gotten most help from your videos and a few others. I’ve had 4 surgeries due to diverticulitis which resulted in infection, obstruction and ultimately I now have an ileostomy… since March 4, 2020… had also before my last surgery I had a colostomy and also ileostomy … my life is much better now with ileostomy … still have my colon but not connected… my main issue is I have a parastomal hernia… unless I run into complications the surgeon and my GI doctor told me they prefer not to do surgery as it is quite involved .. so I’m taking it a day at a time… thank you so much for your informative videos!!!!! 👍😊
Thank you for watching. I agree with your doctor about not jumping to surgery for the hernia. Best is to manage it, and if any problems arise, then you can likely consider a surgical repair at that point. Even repairing the hernia doesn't guarantee that it won't happen again, but the fewer the number of surgeries, the better.
@@VeganOstomy Thank you so much Eric for your input. I have been so conflicted but yes, I’m really tired out from all my previous surgeries so I am doing everything I can including wearing a hernia support guard and no lifting, bending or stretching. I’ve had my small bowel twist causing a blockage last month but it did untwist on its own hours later so I avoided surgery that time. Your videos are so very helpful👍 thank you so much for sharing your experience..😊
Not a j pouch candidate since I have a colostomy. I can be reversed any time after mid May. I had a Hartmann's procedure mid November 2016 for diverticulitis perforation of the colon. I had about a foot of colon removed, mostly sigmoid I believe. So tell me oh wise one, what do you know and feel about reattachment. I'm fine with my stoma because I pretty much know what to expect with it and are just wondering about reattachments. By the way, you are doing the ostomy community a great service with your videos and community involvement for the cause!!!
+Gerard Webster Hey, Gerard, one of my forum members had the exact same question and she also had the Hartmann's procedure due to diverticulitis! Perhaps you should join in the conversation? ☺️ www.veganostomy.ca/community/general-ostomy/ostomy-reversal-surgery/
Older family member has j pouch and while it does work her life is a painful hell going from pouchitis to rectal pain and she’s been taking dilaudid for pain for a decade now and has gotten worse. Constant diarrhea and now incontinence. She’ll most likely reverse and go for the ileostomy now and hopefully will greatly reduce medicines.
Got a pouch about a year and a half ago. Considered a reversal and talked about it with the doctor. He didn't say they would do a J pouch although I think that is the way they reverse the situation. Ultimately decided to stay with the pouch since it works and I know I don't have problems with it traveling
I have had a j pouch for 15 yrs now after having colitis for just over 16 years. Had to have an emergency colectomy bc the colitis turned into pancolitis and my colon tripled in size. Seriously horrible pain, couldn’t breathe without wanting to scream. They had to keep me knocked out before I was moved to another city for the surgery. I have had issues with the pouch but I have learned what I can and cannot eat that helps keep some problems away. Main problem I have had are is the leftover muscle back there becoming so sore that sitting is very painful. But knowing what foods to have and not has helped
@@VeganOstomy yes. I had it for 5 months before the takedown but I had to have 3 individual surgeries where some can have the colectomy and j pouch creation at once. I was much too weak to have the duo surgery. I woke up in the ICU and all I remember saying is, I’m dying I want drugs. At times I do miss the stoma and bag strangely enough bc the soreness is so bad. But like I said, I have learned what and what not to eat to help that out
It may have a low failure rate but as one of the 'failures' I can assure you that it is hellish. My pouch failed due to an incorrect diagnosis of Ulcerative Colitis. I have Crohns. Before you consider having a J-Pouch I would confirm your diagnosis. I'm now having to deal with adhesions, in part, caused by the ileo-anal pouch and subsequent pouchectomy. Look before you leap, that's all I'm saying.
Hey Tom, I'm sorry to hear about that. I've heard too many people who were diagnosed with UC and later found out they have Crohn's! It's wise advice to make sure that the diagnosis is spot on before deciding.
I got a j-pouch and it went sooo horribly, I got so much sicker and was in and out of the hospital for year, kept getting multiple fistulas and infections, couldn't sleep through the night like ever, got gangrene in my pelvic floor, got a blood clot in my liver. My 1st surgeon never even presented skipping the j-pouch as an option and I'm pretty mad about that. Although, who knows; if I'd been presented with a choice I'd probably have chosen trying the j-pouch anyway. But seriously fuck that shit.
+juju hermit I'm under the impression that most surgeons feel that patients would outright reject the idea of an ostomy bag, so perhaps they simply don't mention it. I would much rather be given the options, especially since both surgeries carry risks and benefits.
I'm in almost the opposite situation right now. My surgeon told me to take my time and think about it carefully after the initial operation. I've now had a stoma for over three years and things have been going pretty well, but not without problems. Maybe 'annoyances' is a better word, bag itching all the time, having to replace it often (I had to replace it every day and sometimes multiple times a day for almost a year), etc. Right now things are mostly okay though, I found that by replacing Coloplast Brava seals with Hollister ones the itching almost went away and I can keep the bags on for much longer. And once the bags are on I practically don't even notice, I don't really feel restricted in any way. And now I'm wondering whether I can improve my situation even more by getting a j-pouch and just came across your comment... haha. Really hope things are going better for you and thanks for sharing this, it's giving me some serious food for thought.
@@michael_t5323 I had a jpouch after having ileostomia for 1.5 year. It was working perfectly fine for me. But after a year I had hernia and because of some complications they had to put me back on stoma again.. I have it now another 1.5 year and leaks itching.. Irritating skin problems.. I'm on my way to have jpouch again.. If my body will let me. I hope everything will be fine for you. Good luck!
@@VeganOstomy Thank you! I seriously need to hear this! I am so afraid of the osomy, but i am going to keep looking at videos from your channel to prepare myself!
I had UC from age 28 to 38. After those 10 years, my annual colonoscopy revealed "precancer" and my doctor recommended a j-pouch to prevent colon cancer. I had a bag during my 3 months of recovery while my j-pouch healed. I would never want to live with a bag long-term. When my doctor told me that "most" people with UC get a j-pouch after ~10 years, I was frustrated that I had not done it sooner. A j-pouch is 1,000% better than having UC, and equally 1,000% better than having a bag after a colectomy. I am now 45 years old and have had my j-pouch for 7 years. With the exception of having to use the restroom ~6x daily, I live a completely normal and active life. I can eat whatever food I want and have never had pouchitis (though I live with the knowledge that if it's hot going in, it'll be hot going out). If you're on the fence about getting a j-pouch vs having UC or having a bag post-colectomy; it's a no-brainer. It's life changing!
I'm not at a point (yet) where I'm considering surgery but there is a good likelihood I will need it eventually, due to either the disease itself (I have moderate/severe pancolitis that is not yet responding to treatment) or colon cancer (I am in my twenties so I will have colitis for a long time, therefore increasing my risk down the road). Even though I am a j pouch candidate, I have to say I'm really leaning away from it. The issues that plague me the most are frequency and urgency, and I don't want my "cure" to leave me still having 8-10 bowel movements a day - why bother at that point? Now, my question is: do I advocate for an end-ileostomy (if that time comes) or do I let them do the temporary ileostomy and then just not get reattached. If I have no intention of getting a j pouch, can I live forever with the temporary ileostomy? Is it better to leave that door open, so to speak? I have a feeling a surgeon would push me towards the temp ileo/j pouch route so this is a question weighing on my mind. Also, I have backwash ileitis so I can't help but wonder what that would mean for a j pouch situation.
+Amber S. Thanks for sharing your thoughts. If it's between an end or loop ileostomy, definitely get the end ileostomy as you'll have fewer complications when managing the stoma. I'd personally opt to have everything else removed to remove the risk of those bits becoming inflamed, diseased, or problematic in the future. Wishing you all the best whichever way you decide!
I had the option. I had colorectal cancer stage 3 and UC. But, there was a big chance it wouldn't take and the cancer could come back every few years. Like you said, I didn't want to go through multiple surgeries. Just to need to reverse and a higher chance of the cancer returning. So, stayed with a permanent ileostomy
If you have Crohn's Disease, you likely won't be able to have the surgery. But you would be a candidate with Ulcerative Colitis. Talk to your doctor (preferably your GI doc), who would refer you a surgeon to discuss the option. Good luck.
Hello friend. I want to say im vegan as well and i as well have had a colostomy i have a ostomy bag right now it been 3 years almost i still have my rectal that needs to come out. The thing is a lot happened and i was wondering if i could send you a email because i really do need help i need advice and im really really lost. 🙏🏻💚
Good luck! The shirt was given for participants in the Crohn's and Colitis Canada Gutsy Walk several years ago. In that sense, it's a limited edition and likely not sold.
When I was on my last resort for medications, my original GI told me that if I considered a J-Pouch to keep in mind that he still treats patients who have them that have complications and still take medication. I truly appreciated his honesty. He referred me to a Dr at MUSC for further treatment. After being miserably sick with UC for so long I told my Dr at MUSC that I had enough and wanted to have surgery. I could not see myself going through surgery and running the risk of the J-Pouch failing. I had a total collectomy on 4-12-16 and never looked back. It was the best decision I've ever made. The surgeon did leave 1 cm of my rectum incase there would be a new scientific breakthrough but I'm really not interested in any surgery.
Hi, my surgeon also left me 10 cm for later j pouch... 1 question. after 5 weeks out of surgery with ileostomy, i still go to wc 1-2 a day some blood and some white stuff. how long will that last? thx
I had some blood after surgery while I was still in the hospital and a couple of other times afterwards in the first few months. Since then I have had a small spotting of light blood once in a while but nothing serious. The mucus is something that will continue since that part of your rectum is still a working part of you. It can be a bit of a bother but considering all of the discomfort from UC symptoms before my surgery that is a small price to pay. BTW my surgery was 15 months ago.
I have a genetic abnormal polyps in my colon where I'll need to have surgery to remove it and have a j pouch so I can keep having regular bowl movements. My mom has an ostomy bag and I know how annoying it is to deal with so I am choosing to go to Louisville for surgery, I have a specialist who is the best of the best with this kind of surgery and said I was the perfect, ideal candidate and I'd have very little complications with the surgery and recovery. I'm just worried about any issues later down the road but I'm trying to stay positive about this
Good luck with everything, Jeff. There is one study that looked at long-term success dated back in 2003, so the results could be even better with today's advancements. Have a look: www.ncbi.nlm.nih.gov/pubmed/14501509
I watched a video about the j pouch if I ever have to have an ostemy I will go with one over the pouch. I can’t afford to have to be by a bathroom all the time. There are too many problems because of them. I’ve heard a lot of horror stories of the j pouch. I don’t think it’s worth all the trouble.
There are people who haven't had the best luck after surgery, but keep in mind that we only tend to hear from the people who've had difficulties and not the ones who are out living their lives after a successful surgery. Poor outcomes are possible with any surgery, but hopefully we can all have a surgeon who is willing to go over the risks and benefits in detail with each one of us.
I got my jpouch after years of troubles from UC. I had the ostomy for 6 months then did the reversal. The following year with my jpouch was the worst of my life. While they say failure is low, i was one of them. I was told that I’m in good shape to go back to the pouch but I’ve decided to keep the ostomy. It’s not very convenient but I am unwilling to take a chance on another failure. I count my blessings that I can have a fairly normal life.
@@VeganOstomy thanks brother I finished chemotherapy two weeks ago I had a ct and it showed a small peristomal hernia my oncologist said that typically they would have to do surgery to repair it but since I'm going to have surgery to and the bag they'll go ahead and do that and that surgery will also at the same time fix the hernia so I was anticipating my surgery happening or even seeing the surgeon and maybe October but he pushed that up to seeing the surgeon this week
I'm sorry to hear about that experience, Alison. What was the reason for going with a stoma after that many years? Do you have the option to go back? A new j-pouch may not work the same as your first, so this would be a conversation to have with your surgeon to see what your QOL would be like doing the reversal. Best of luck.
Hi , my name is juan im 51 years old im having my colon removed in December but have to decide whether to have a permanent bag or a jpouch, is a hard decision
It is a hard decision, Juan. Hopefully, this is something you can discuss with your surgeon to see what they believe might give you the best outcome and quality of life. Best of luck to you!
Hi got my ilostomy bag on March 28 /2023 I have so many complications 2 more surgery s know it just barely having output no blockage ct scan just fell sick and tired I have lost 120 pounds weigh 100 I am thinking of getting reversal can anyone tell if there mostly just barely has output
QUESTIONS : I'm getting surgery and thinking about getting a J Pouch instead of a permanent bag. Overall, is it worth going through two surgeries? Also, is it less risky just to get the permanent bag? And if for some reason, the J Pouch doesn't work, can't they reverse it and just give you the permanent bag?
+Ryan Blanche Hey Ryan, your surgeon should be able to address specific questions based on your situation, but I've heard of people who have no trouble with their j-pouch while others have to go back to an ostomy. Many people who decide to stick with a permanent ostomy (without any trouble) often don't want to risk having a j-pouch that might not work as well for them. Sometimes, it's a matter of deciding whether you can live with the potential risks or not. Good luck.
Ryan Blanche hey I cant answer everything since im not a doctor. but I am in the process of the jpouch surgeries. mine has been formed but im waiting for the takedown of my stoma(i had it done in three surgeries instead of two to hopefully have a better outcome). honestly if youre removing the large intestine id say its worth trying. the first surgery (removing colon) was much more painful than the second when they form the jpouch. so for me I dont regret trying it even if somehow it does fail. if it does one con would be is yes they can just reform an ileostomy but some of your small intestine would be wasted since it was used for your jpouch. again I may be giving you incorrect info so you should talk to your surgeon. youll hear a bunch of failed jpouch stories but many are doing great with theirs and living their lives. I've spoken to a few patients of my surgeons who are doing amazing and have almost a normal life. aside from using the bathroom more than the norm
@@VeganOstomy *UPDATE* In December 2017, I got the first part with the ostomy, then got the reversal in May 2018. However, I was too tall of a guy to make the Pouch, so they had to keep my rectum and connect the small intestine to it. I'm still on a few meds, and still have around 4-5 bowel movements a day but am overall in a much better place than I was in 2016 (when the UC first developed) and 2017.
Hi Edward, having an ostomy or needing a j-pouch is not really a diet issue. Reducing meat consumption could help reduce the risks of why someone might get sick or end up with an ostomy, but it's not usually a way to prevent having a j-pouch.
@@VeganOstomy I have ulcerative colitis and have had it for 15yrs, been on loads of drugs but they stop working and doctor's try prescribing stronger meds, I just think that the processed food's we consume are causing a lot of these diseases.
Processed foods certainly don't benefit our health, and they do increase the risk factor for various GI disorders, but how influential their role is on our disease is unknown. Good luck to you.
..baloney …the pouchitis is the least of ur worries…diarrhea constantly is the problem…all bodies r different and nobody really knows how ur body is gonna react..until the pouch starts functioning..by then it’s too late..and if the bowel movement per day gets up around 10-15times a day..u’ve lost control..and will need to get an ileostomy ….
I couldnt get a j pouch as i have crohns, But I could have an IRA ileorectal anastomosis which is a straight forward joining of the ileum to the rectum , Im not sure if I should , my stoma is not causing me many issues, Did you have that option for an IRA ?
Because of the severe perianal involvement of my Crohn's, I wouldn't have wanted anything to be connected down there, even if the option was available. An ostomy was my best option and glad that's what I got.
My doctors are recommending that I have a colectomy with permanent ileostomy, and I've learned a lot from your videos and others on TH-cam. I especially appreciate how fearless you are in talking about sensitive topics. In that tradition, I have a question I've never seen addressed in any of the videos you and others have posted: What happens with your anus after colon removal (with or without removal of the rectum). To be blunt: Do they just sew it shut? But I've read there can still be some discharge of mucous... I will eventually ask my doctors about this -- and please accept my apologies for asking about something so sensitive and being so naive -- but I could use some help in understanding this from young your followers.
Thanks :) I don't have any videos on the topic, but I did write quite a bit about my experience after the removal of my anus and rectum: www.veganostomy.ca/category/perianal-disease/ The problem is that everyone seems to have a very difference experience with this surgery. I wasn't sewn shut, but they had me on a wound vac - I know several people who have been sewn shut and had a much faster recovery (and some who haven't fully healed for years). But... that's only if you opt to have those removed. if you decide to leave it all there, it will still put out mucus and sometimes blood. Some people are happy with that, some leave it in because they plan for a reversal, but many just remove it all (especially if there was perianal disease) or it'll continue to be a problem. I hope that helps!
Vegan Ostomy I really appreciate your videos and all your helpful and candid info! How much of the rectum do they need to leave in in order to potentially do a j pouch in the future? I have my surgery Aug 9th (due to complications from ehlers danlos, functional bowel disorders, severe pelvic floor dysfunction with severe rectal prolapse, and dysmotility) for a laprascopic colectomy with ileostomy... Despite my rectum being badly prolapsed, my surgeon is leaving in the rectum in order to prevent hopefully prevent even more pelvic floor damage/prolapses from the other pelvic organs (which I'm prone to bc of the ehlers danlos connective tissue disorder) and also if I want to explore a J pouch in the future. Also, how much mucus will the rectum still make and is there any maintenance to address this? Down the road, I'll probably opt for a removal if the prolapse keeps occurring, but for now, this is the option my surgeon feels most comfortable doing.
Usually, the entire rectum is removed - you don't need to keep any of it for a j-pouch. Are you talking about mucus after the j-pouch is made or while nothing is attached to it? I had pretty regular mucus from my bum during the months in between surgeries. I'd basically just "poop" normally on a toilet to get rid of it - no other maintenance was necessary.
It's an internal reservoir commonly used when someone has an ostomy reversal. It's made using the end of the small bowel and is shaped like a J, hence the name.
My J pouch is 4 months old, my colon was removed 8 months ago due to 400+ polyps. I have trouble with tons of gas, a chronic lack of sleep, and incontinence. But given that I didn't have a choice and have to give myself time to adjust, I can't say yet that the j pouch was a mistake.
Vegan Ostomy Does the excess go away in time, as well as the extreme urgency to go to the bathroom? Half of the time I get a big urge to "go", and it turns out to be gas. It still beats the ileostomy though.
I feel much better. The 1st 2 years was rough. I still have issues, but I sleep through the night most of the time, and use the bathroom about 8 times a day.
Have you had a J-Pouch or are you considering one? Leave a comment below and share your experience.
My first surgery is coming up; April 29th!
@@rondasmith7041 How did everything go, Ronda? Did you have any follow up surgeries after your first one?
J pouch leaves you with constant leaks. I had mine 20 years ago and giving thought to having it taken down.
@@rwood6980 Did these problems come about gradually or all at once?
Have one
I had a J pouch procedure 22 years ago, and I'm a 59 year old male . It's been the best decision I've ever made. I struggled with UC for 6 years. Six years of flare ups, severe fatigue, cramps, hospitalizations and HIGH doses of steroids. The side effects from all the meds were bad enough, let alone the UC. I will admit, it took almost a year for me to feel the way I do now, but it changed my life for the best.
I'm really glad that it worked out for you, Randall! I hope you have *at least* another 22 years of success :)
How many times you pass stools now
@@karnipraveen2521 Usually 3 -5 during the day and 2 times at night.
@@randallalford900 what are the risks of j pouch and should i try a j pouch before permanent stoma i am young 29 years old so its very hard to make a decision
I have a J - pouch going on 27 years now At the Cleveland Clinic . An still doing well I'm greatful for the years living .My way of dealing with daily bathroom issues clean ,move on be kind to yourself learn to understand your body enjoy life.
I had a j pouch it failed after 5 years , I have a permanent ileostomy now. I don't regret having tried the j pouch , at least I know I gave it a try. Thanks for your videos Eric, they really helped me mostly when I just had my ostomy, and still do today as well.
Thank you for sharing, Clinton!
What was your experience of the j-pouch during those five years? Any major complications? I'm currently considering getting it done after spending the last three years with a stoma.
I have a stoma after 8months .. I had a j pouch dun threw my opp ... I am getting reversal in may .. my doc disagrees but my surgeon says my bowel was fully removed & says the pouch will b perfe6 fine for me as my, bowel was removed & surgery recome6 I use j pouch am confused ???
What do you mean it "failed" in what way?
@@Razah. after 5 years I started developing abscesses.
I had a successful j-pouch for about 6 years. Then I had a year or so of pouchitis off and on. After consulting with my doctor and surgeon I felt an ileostomy was the right choice for me. I have now had my bag for 21 years. There are frustrating parts of having an ostomy, but it's so much better than being in and out of the hospital. I truly recommend both surgeries. The have both served their purpose and were the right decision at the time. Hope this helps!
Thanks for sharing that! I wish you all the best.
I'm the same as you, I have a illeostomy now after having UC and crohn's and having a failed J-Pouch. Both have advantages and dissadvatages. best thing is to talk to your surgeon . Illeostomy helps with having no pain, and less hospital trips, but has frustrating difficulties. Either way , people who go through this are strong enough to get through either choice
I went that route, but mine lasted 5 yrs. then pouchitis was too much, back to the bag now
Did theybever determine what was causing the pouchitis? I have had a j-pouch for 7 years now and don't really think about it too much. I have a normal life now. But then I hear about people like you and wonder if if it's just bad luck, or were there lifestyle choices that caused the pouchitis.
@@jonvanwyk2026 They never really determined why I had pouchitis so many times. They think it could have possibly been the curvature of the "j" and that infection wasn't able to get back out.
I am 56. I have had my J pouch since I was 29. Works great. Although the last 10 or 12 years I have been having issues with a lot of inflammation in my pouch. The dr. Says it looks like chrones, but blood work says it’s not. I have no pain. Not loosing wt like most people with that do. We have to look every year at the pouch to make sure it’s ok. I’ve learned I have to stay away from anti inflammatory drugs. Don’t eat spicy all the time. Leafy stuff not all the time either. I do take a probiotic which almost gets rid of the inflammation. It is called Visbiome. I have a subscription for it. But it is spacificly for people like us. 400 billion. Cost is 80.00 a little more.
I can beat that. Now 62 I have had a j pouch since I was 27. The rest of your story is also mine, aside from being male.
I live in a small country and was luck number 13 in the country for this procedure. I plan to enquire about the Visbiome.
As an amusing aside I work as a pilot for a foreign airline and I got to fly with another pilot that also had a j pouch. You may ask how the subject came up but you wouldn’t believe the utter “ crap “ airline pilots talk to alleviate the boredom of the job. We joked that the airline should do a PR stunt about two pouch recipients on the flight deck.
A demonstration of how “ inclusive” their corporate culture is. ( more crap)
They do it when they have an all female crew, and I’m sure two pilots with our physiology flying together is far more unique.
I had the ostomy bag before a short time before having the second operation for the j-pouch. For me personally I prefer the pouch, even though I have a lot of bowel movements.
Glad that a pouch works for you :)
Thank you. I needed this talk.
I just wanted to thank you for your videos. They have been so helpful and informative. I have an ileostomy due to colon cancer and felt so lost when I came home from the hospital. For the last six months you and a couple others out there have saved me in moments of stress and panic. I'm not sure if I'll reattach or get a j-pouch. I've heard so many horror stories (real life and the tubes) that I'm still unsure. Sorry no questions. Just thanks!
Glad I could help :) Thanks for watching (and nice artwork, BTW!).
Thank you!
How are you doing now, Dana? I’m right where you were a year ago. I also had colon cancer, and am in kind of a dark place right now, with anxiety. It doesn’t help that I have had a life-long germophobia and mild OCD issues. Definitely not an ideal candidate for an ileostomy. :( Did you end up getting a j-pouch? If so, how did it go?
I had absolute terrible UC before having my ostomy.. I am planning on keeping my stoma.. my reasons call it PTSD but I cant think about going through pochitis.. I know its not as bad as colitis itself, but NO THANK YOU. My surgeon also said because my colitis was so aggressive chances are I would develop it as well.. Also my pelvic floor is terrible. I for years have urine incontinence, and I am afraid of poo incontinence with the J pouch. Also some say they still have to go to the bathroom 8 to 10 times a day on good days and maybe more on other days.. Maybe a bit better then when I had colitis but not much better iin my opinion. So Im keeping my stoma.. Dont fix whats not broken, and dont rock the boat anymore then it has in my life already.. Plan in the future to get the proctectomy surgery which would be sewing up my bum hole, bt after that hopefully no need for anymore surgeries after that.. If I wanted the J pouch that would be 2 surgeries and then if I ever had to go back to a stoma again yet another surgery.. None of its worth it for me
A deer friend of mine had a j pouch and was miserable due to having to go to the bathroom more and incontinence was a major issue unlike a natural rectom you dont have as much controle at least from what she told me so she went back to an ostomy and she became more active due to having less fear of accidents
I'm glad it worked out for your friend in the end. Thank you for watching!
I had same problem it was not fun
I'm one surgery down with two to go. I'm nervous about getting the j pouch surgery but excited at the idea of not having this bag the rest of my life.
Good luck!
I'm getting my j pouch hooked back up soon. I was struggling with it so they gave me a temporary ileostomy to give my pouch a chance to heal. My surgeon said it would only be a year, but it's been five because she didn't want to hook it back up. I got a new surgeon who is willing to do it as long as I'm taking Stelara and my upcoming scope procedure look good.
I'm just so rediculously sick of this ostomy. I'm sick of occasional leaks, completely ruining expensive sheets and clothing, waking up at 2am to scrub my mattress, take a shower, and put on a new bag while my stoma is rediculously active, getting harassed by TSA every single time I go through airport security, and having to kneel on piss covered floors in public restrooms.
I'm so sick of the embarrassment and shame. I once stood up at a restaurant in the hospital and the weight of my bag ripped off the seal and it crashed on the floor in front of everyone. I said "I'm sorry" and ran out. I went zip-lining in Hawaii with my wife on our honeymoon and it immediately ripped. I was hours away from our hotel. I had to immediately ride back with it leaking in our Uber. Because of this stupid bag, I can't snowboard, box, or play paintball anymore. More than anything, I just want to cuddle my wife without it ballooning up against her. We are having a child and I don't want this thing holding me back.
I can see how it might be better for some people, but for me it has been a total nightmare. It's lowered my quality of life and genuinely affected my mental health. For me the j-pouch isn't perfect, but I was genuinely happier.
I'm sorry that you had such a poor experience with an ostomy, and I can understand how that experience was lowering your quality of life. I wish you all the best in the future!
Thank you very much.
Your videos are so very helpful 👍 I have gotten most help from your videos and a few others. I’ve had 4 surgeries due to diverticulitis which resulted in infection, obstruction and ultimately I now have an ileostomy… since March 4, 2020… had also before my last surgery I had a colostomy and also ileostomy … my life is much better now with ileostomy … still have my colon but not connected… my main issue is I have a parastomal hernia… unless I run into complications the surgeon and my GI doctor told me they prefer not to do surgery as it is quite involved .. so I’m taking it a day at a time… thank you so much for your informative videos!!!!! 👍😊
Thank you for watching. I agree with your doctor about not jumping to surgery for the hernia. Best is to manage it, and if any problems arise, then you can likely consider a surgical repair at that point. Even repairing the hernia doesn't guarantee that it won't happen again, but the fewer the number of surgeries, the better.
@@VeganOstomy
Thank you so much Eric for your input. I have been so conflicted but yes, I’m really tired out from all my previous surgeries so I am doing everything I can including wearing a hernia support guard and no lifting, bending or stretching. I’ve had my small bowel twist causing a blockage last month but it did untwist on its own hours later so I avoided surgery that time. Your videos are so very helpful👍 thank you so much for sharing your experience..😊
I am in the decision making state. Thank you for sharing ☺️
Good luck, however you decide to go. 😉
Vegan Ostomy Thank you ☺️
Very nyc information, thanks a lot
Not a j pouch candidate since I have a colostomy. I can be reversed any time after mid May. I had a Hartmann's procedure mid November 2016 for diverticulitis perforation of the colon. I had about a foot of colon removed, mostly sigmoid I believe. So tell me oh wise one, what do you know and feel about reattachment. I'm fine with my stoma because I pretty much know what to expect with it and are just wondering about reattachments. By the way, you are doing the ostomy community a great service with your videos and community involvement for the cause!!!
+Gerard Webster Hey, Gerard, one of my forum members had the exact same question and she also had the Hartmann's procedure due to diverticulitis! Perhaps you should join in the conversation? ☺️ www.veganostomy.ca/community/general-ostomy/ostomy-reversal-surgery/
Older family member has j pouch and while it does work her life is a painful hell going from pouchitis to rectal pain and she’s been taking dilaudid for pain for a decade now and has gotten worse. Constant diarrhea and now incontinence. She’ll most likely reverse and go for the ileostomy now and hopefully will greatly reduce medicines.
I wish her the best of luck if she decides to go for the reversal. I'm sorry that she's had to go through all that pain.
Got a pouch about a year and a half ago. Considered a reversal and talked about it with the doctor. He didn't say they would do a J pouch although I think that is the way they reverse the situation. Ultimately decided to stay with the pouch since it works and I know I don't have problems with it traveling
Thank you for sharing that 😀
Thank you for the info 🙏🙏🙏
My pleasure
I have had a j pouch for 15 yrs now after having colitis for just over 16 years. Had to have an emergency colectomy bc the colitis turned into pancolitis and my colon tripled in size. Seriously horrible pain, couldn’t breathe without wanting to scream. They had to keep me knocked out before I was moved to another city for the surgery. I have had issues with the pouch but I have learned what I can and cannot eat that helps keep some problems away. Main problem I have had are is the leftover muscle back there becoming so sore that sitting is very painful. But knowing what foods to have and not has helped
I'm so sorry to hear that you've had to go through that. Did you have a stoma before getting the jpouch?
@@VeganOstomy yes. I had it for 5 months before the takedown but I had to have 3 individual surgeries where some can have the colectomy and j pouch creation at once. I was much too weak to have the duo surgery. I woke up in the ICU and all I remember saying is, I’m dying I want drugs. At times I do miss the stoma and bag strangely enough bc the soreness is so bad. But like I said, I have learned what and what not to eat to help that out
I'm undecided for now to get the j-pouch because I'm not sure how my body will respond... 😕 just enjoying the ostomy bag for now
+Grace Lee And that's the dilemma! Good luck.
It may have a low failure rate but as one of the 'failures' I can assure you that it is hellish. My pouch failed due to an incorrect diagnosis of Ulcerative Colitis. I have Crohns. Before you consider having a J-Pouch I would confirm your diagnosis. I'm now having to deal with adhesions, in part, caused by the ileo-anal pouch and subsequent pouchectomy. Look before you leap, that's all I'm saying.
Hey Tom, I'm sorry to hear about that. I've heard too many people who were diagnosed with UC and later found out they have Crohn's! It's wise advice to make sure that the diagnosis is spot on before deciding.
Usually, it needs to be confirmed via biopsy taken during a scope.
You should sue them! You will have a very big pay out especially if you went through the surgeries under the impression you have UC and not chrons
I got a j-pouch and it went sooo horribly, I got so much sicker and was in and out of the hospital for year, kept getting multiple fistulas and infections, couldn't sleep through the night like ever, got gangrene in my pelvic floor, got a blood clot in my liver. My 1st surgeon never even presented skipping the j-pouch as an option and I'm pretty mad about that. Although, who knows; if I'd been presented with a choice I'd probably have chosen trying the j-pouch anyway. But seriously fuck that shit.
+juju hermit I'm under the impression that most surgeons feel that patients would outright reject the idea of an ostomy bag, so perhaps they simply don't mention it. I would much rather be given the options, especially since both surgeries carry risks and benefits.
I'm in almost the opposite situation right now. My surgeon told me to take my time and think about it carefully after the initial operation. I've now had a stoma for over three years and things have been going pretty well, but not without problems. Maybe 'annoyances' is a better word, bag itching all the time, having to replace it often (I had to replace it every day and sometimes multiple times a day for almost a year), etc. Right now things are mostly okay though, I found that by replacing Coloplast Brava seals with Hollister ones the itching almost went away and I can keep the bags on for much longer. And once the bags are on I practically don't even notice, I don't really feel restricted in any way.
And now I'm wondering whether I can improve my situation even more by getting a j-pouch and just came across your comment... haha. Really hope things are going better for you and thanks for sharing this, it's giving me some serious food for thought.
@@michael_t5323 I had a jpouch after having ileostomia for 1.5 year. It was working perfectly fine for me. But after a year I had hernia and because of some complications they had to put me back on stoma again.. I have it now another 1.5 year and leaks itching.. Irritating skin problems.. I'm on my way to have jpouch again.. If my body will let me. I hope everything will be fine for you. Good luck!
I literally needed this video today! I to have perianal Crohn’s and might need to switch from my j pouch to an osteomy
Good luck, Michelle! I had the same form of Crohn's and an ostomy changed my life for the better.
@@VeganOstomy Thank you! I seriously need to hear this! I am so afraid of the osomy, but i am going to keep looking at videos from your channel to prepare myself!
@@michellebabcock7794 It's totally normal to be afraid or uncertain. Connect with others, ask questions, and learn! =)
I had UC from age 28 to 38. After those 10 years, my annual colonoscopy revealed "precancer" and my doctor recommended a j-pouch to prevent colon cancer. I had a bag during my 3 months of recovery while my j-pouch healed. I would never want to live with a bag long-term.
When my doctor told me that "most" people with UC get a j-pouch after ~10 years, I was frustrated that I had not done it sooner. A j-pouch is 1,000% better than having UC, and equally 1,000% better than having a bag after a colectomy.
I am now 45 years old and have had my j-pouch for 7 years. With the exception of having to use the restroom ~6x daily, I live a completely normal and active life. I can eat whatever food I want and have never had pouchitis (though I live with the knowledge that if it's hot going in, it'll be hot going out).
If you're on the fence about getting a j-pouch vs having UC or having a bag post-colectomy; it's a no-brainer. It's life changing!
I'm not at a point (yet) where I'm considering surgery but there is a good likelihood I will need it eventually, due to either the disease itself (I have moderate/severe pancolitis that is not yet responding to treatment) or colon cancer (I am in my twenties so I will have colitis for a long time, therefore increasing my risk down the road).
Even though I am a j pouch candidate, I have to say I'm really leaning away from it. The issues that plague me the most are frequency and urgency, and I don't want my "cure" to leave me still having 8-10 bowel movements a day - why bother at that point? Now, my question is: do I advocate for an end-ileostomy (if that time comes) or do I let them do the temporary ileostomy and then just not get reattached. If I have no intention of getting a j pouch, can I live forever with the temporary ileostomy? Is it better to leave that door open, so to speak? I have a feeling a surgeon would push me towards the temp ileo/j pouch route so this is a question weighing on my mind.
Also, I have backwash ileitis so I can't help but wonder what that would mean for a j pouch situation.
+Amber S. Thanks for sharing your thoughts. If it's between an end or loop ileostomy, definitely get the end ileostomy as you'll have fewer complications when managing the stoma. I'd personally opt to have everything else removed to remove the risk of those bits becoming inflamed, diseased, or problematic in the future. Wishing you all the best whichever way you decide!
I had the option. I had colorectal cancer stage 3 and UC. But, there was a big chance it wouldn't take and the cancer could come back every few years. Like you said, I didn't want to go through multiple surgeries. Just to need to reverse and a higher chance of the cancer returning. So, stayed with a permanent ileostomy
Thank you for sharing. I hope that you've been managing well.👍
had the same thing-- lucky to survive it, and j pouch only lasted 5 yrs, perm. ileostomy was my only option
How can I request or get approved for j-pouch surgery? This disease costed me enlistment into the Navy and the infusion costs are ridiculous.
If you have Crohn's Disease, you likely won't be able to have the surgery. But you would be a candidate with Ulcerative Colitis. Talk to your doctor (preferably your GI doc), who would refer you a surgeon to discuss the option. Good luck.
Hello friend. I want to say im vegan as well and i as well have had a colostomy i have a ostomy bag right now it been 3 years almost i still have my rectal that needs to come out. The thing is a lot happened and i was wondering if i could send you a email because i really do need help i need advice and im really really lost. 🙏🏻💚
I can be reached at info@veganostomy.ca, or you're welcome to join my online forum at www.veganostomy.ca/community/.
I am planning to n getting the Jpouch soon! Where can i get your T shirt pls?
Good luck! The shirt was given for participants in the Crohn's and Colitis Canada Gutsy Walk several years ago. In that sense, it's a limited edition and likely not sold.
@@VeganOstomy oh thats a shame. I would have loved one.
When I was on my last resort for medications, my original GI told me that if I considered a J-Pouch to keep in mind that he still treats patients who have them that have complications and still take medication. I truly appreciated his honesty. He referred me to a Dr at MUSC for further treatment. After being miserably sick with UC for so long I told my Dr at MUSC that I had enough and wanted to have surgery. I could not see myself going through surgery and running the risk of the J-Pouch failing. I had a total collectomy on 4-12-16 and never looked back. It was the best decision I've ever made. The surgeon did leave 1 cm of my rectum incase there would be a new scientific breakthrough but I'm really not interested in any surgery.
Hi, my surgeon also left me 10 cm for later j pouch... 1 question. after 5 weeks out of surgery with ileostomy, i still go to wc 1-2 a day some blood and some white stuff. how long will that last? thx
I had some blood after surgery while I was still in the hospital and a couple of other times afterwards in the first few months. Since then I have had a small spotting of light blood once in a while but nothing serious. The mucus is something that will continue since that part of your rectum is still a working part of you. It can be a bit of a bother but considering all of the discomfort from UC symptoms before my surgery that is a small price to pay. BTW my surgery was 15 months ago.
+xskip I had mucus and some blood for a few months, then I had my surgery to remove my rectum after that. It is pretty normal.
Tiger Stripe not sure how to take that.
That's totally uncalled for, Tiger.
I have a genetic abnormal polyps in my colon where I'll need to have surgery to remove it and have a j pouch so I can keep having regular bowl movements. My mom has an ostomy bag and I know how annoying it is to deal with so I am choosing to go to Louisville for surgery, I have a specialist who is the best of the best with this kind of surgery and said I was the perfect, ideal candidate and I'd have very little complications with the surgery and recovery. I'm just worried about any issues later down the road but I'm trying to stay positive about this
Good luck with everything, Jeff. There is one study that looked at long-term success dated back in 2003, so the results could be even better with today's advancements. Have a look: www.ncbi.nlm.nih.gov/pubmed/14501509
I watched a video about the j pouch if I ever have to have an ostemy I will go with one over the pouch. I can’t afford to have to be by a bathroom all the time. There are too many problems because of them. I’ve heard a lot of horror stories of the j pouch. I don’t think it’s worth all the trouble.
There are people who haven't had the best luck after surgery, but keep in mind that we only tend to hear from the people who've had difficulties and not the ones who are out living their lives after a successful surgery. Poor outcomes are possible with any surgery, but hopefully we can all have a surgeon who is willing to go over the risks and benefits in detail with each one of us.
I got my jpouch after years of troubles from UC. I had the ostomy for 6 months then did the reversal. The following year with my jpouch was the worst of my life. While they say failure is low, i was one of them. I was told that I’m in good shape to go back to the pouch but I’ve decided to keep the ostomy. It’s not very convenient but I am unwilling to take a chance on another failure. I count my blessings that I can have a fairly normal life.
Thank you for sharing that, Timothy.
See the surgeon tomorow to schedule
Best of luck 👍
@@VeganOstomy thanks brother
I finished chemotherapy two weeks ago
I had a ct and it showed a small peristomal hernia my oncologist said that typically they would have to do surgery to repair it but since I'm going to have surgery to and the bag they'll go ahead and do that and that surgery will also at the same time fix the hernia so I was anticipating my surgery happening or even seeing the surgeon and maybe October but he pushed that up to seeing the surgeon this week
Used Jpouch for 20 years then had a iliostomy after 12 months got a hernia and thinking about going back to the jpouch Any Advice Many Thanks
I'm sorry to hear about that experience, Alison.
What was the reason for going with a stoma after that many years? Do you have the option to go back?
A new j-pouch may not work the same as your first, so this would be a conversation to have with your surgeon to see what your QOL would be like doing the reversal. Best of luck.
Hi , my name is juan im 51 years old im having my colon removed in December but have to decide whether to have a permanent bag or a jpouch, is a hard decision
It is a hard decision, Juan. Hopefully, this is something you can discuss with your surgeon to see what they believe might give you the best outcome and quality of life. Best of luck to you!
Hi got my ilostomy bag on March 28 /2023 I have so many complications 2 more surgery s know it just barely having output no blockage ct scan just fell sick and tired I have lost 120 pounds weigh 100 I am thinking of getting reversal can anyone tell if there mostly just barely has output
QUESTIONS : I'm getting surgery and thinking about getting a J Pouch instead of a permanent bag. Overall, is it worth going through two surgeries? Also, is it less risky just to get the permanent bag?
And if for some reason, the J Pouch doesn't work, can't they reverse it and just give you the permanent bag?
+Ryan Blanche Hey Ryan, your surgeon should be able to address specific questions based on your situation, but I've heard of people who have no trouble with their j-pouch while others have to go back to an ostomy. Many people who decide to stick with a permanent ostomy (without any trouble) often don't want to risk having a j-pouch that might not work as well for them. Sometimes, it's a matter of deciding whether you can live with the potential risks or not. Good luck.
Ryan Blanche hey I cant answer everything since im not a doctor. but I am in the process of the jpouch surgeries. mine has been formed but im waiting for the takedown of my stoma(i had it done in three surgeries instead of two to hopefully have a better outcome). honestly if youre removing the large intestine id say its worth trying. the first surgery (removing colon) was much more painful than the second when they form the jpouch. so for me I dont regret trying it even if somehow it does fail. if it does one con would be is yes they can just reform an ileostomy but some of your small intestine would be wasted since it was used for your jpouch. again I may be giving you incorrect info so you should talk to your surgeon. youll hear a bunch of failed jpouch stories but many are doing great with theirs and living their lives. I've spoken to a few patients of my surgeons who are doing amazing and have almost a normal life. aside from using the bathroom more than the norm
elena rose how do you feel now please?
@@VeganOstomy *UPDATE*
In December 2017, I got the first part with the ostomy, then got the reversal in May 2018.
However, I was too tall of a guy to make the Pouch, so they had to keep my rectum and connect the small intestine to it.
I'm still on a few meds, and still have around 4-5 bowel movements a day but am overall in a much better place than I was in 2016 (when the UC first developed) and 2017.
@@RYMAN1321 Thanks for that update, Ryan! Glad you're doing better!
So it is not recommended for Crohn’s ??
Not typically, since crohns could spread into the j-pouch.
I had diverticulitis and had a storma bag could I get a J pouch done they have ask me to have it reversed
You'd have to ask your surgeon about that. Each person is different.
What about eating.carnivore before you get to this stage, does anyone know if it has worked for them.
Hi Edward, having an ostomy or needing a j-pouch is not really a diet issue. Reducing meat consumption could help reduce the risks of why someone might get sick or end up with an ostomy, but it's not usually a way to prevent having a j-pouch.
@@VeganOstomy I have ulcerative colitis and have had it for 15yrs, been on loads of drugs but they stop working and doctor's try prescribing stronger meds, I just think that the processed food's we consume are causing a lot of these diseases.
Processed foods certainly don't benefit our health, and they do increase the risk factor for various GI disorders, but how influential their role is on our disease is unknown. Good luck to you.
Had a colon resection when a baby
I've had irregular bowel movements my entire life
Have always had very stinky farts
..baloney …the pouchitis is the least of ur worries…diarrhea constantly is the problem…all bodies r different and nobody really knows how ur body is gonna react..until the pouch starts functioning..by then it’s too late..and if the bowel movement per day gets up around 10-15times a day..u’ve lost control..and will need to get an ileostomy ….
I couldnt get a j pouch as i have crohns, But I could have an IRA ileorectal anastomosis which is a straight forward joining of the ileum to the rectum , Im not sure if I should , my stoma is not causing me many issues, Did you have that option for an IRA ?
Because of the severe perianal involvement of my Crohn's, I wouldn't have wanted anything to be connected down there, even if the option was available. An ostomy was my best option and glad that's what I got.
My doctors are recommending that I have a colectomy with permanent ileostomy, and I've learned a lot from your videos and others on TH-cam. I especially appreciate how fearless you are in talking about sensitive topics. In that tradition, I have a question I've never seen addressed in any of the videos you and others have posted: What happens with your anus after colon removal (with or without removal of the rectum). To be blunt: Do they just sew it shut? But I've read there can still be some discharge of mucous... I will eventually ask my doctors about this -- and please accept my apologies for asking about something so sensitive and being so naive -- but I could use some help in understanding this from young your followers.
Thanks :)
I don't have any videos on the topic, but I did write quite a bit about my experience after the removal of my anus and rectum: www.veganostomy.ca/category/perianal-disease/
The problem is that everyone seems to have a very difference experience with this surgery. I wasn't sewn shut, but they had me on a wound vac - I know several people who have been sewn shut and had a much faster recovery (and some who haven't fully healed for years).
But... that's only if you opt to have those removed. if you decide to leave it all there, it will still put out mucus and sometimes blood. Some people are happy with that, some leave it in because they plan for a reversal, but many just remove it all (especially if there was perianal disease) or it'll continue to be a problem.
I hope that helps!
Very helpful. Thanks.
Very helpful. Thanks.
Vegan Ostomy
I really appreciate your videos and all your helpful and candid info! How much of the rectum do they need to leave in in order to potentially do a j pouch in the future? I have my surgery Aug 9th (due to complications from ehlers danlos, functional bowel disorders, severe pelvic floor dysfunction with severe rectal prolapse, and dysmotility) for a laprascopic colectomy with ileostomy... Despite my rectum being badly prolapsed, my surgeon is leaving in the rectum in order to prevent hopefully prevent even more pelvic floor damage/prolapses from the other pelvic organs (which I'm prone to bc of the ehlers danlos connective tissue disorder) and also if I want to explore a J pouch in the future.
Also, how much mucus will the rectum still make and is there any maintenance to address this? Down the road, I'll probably opt for a removal if the prolapse keeps occurring, but for now, this is the option my surgeon feels most comfortable doing.
Usually, the entire rectum is removed - you don't need to keep any of it for a j-pouch.
Are you talking about mucus after the j-pouch is made or while nothing is attached to it? I had pretty regular mucus from my bum during the months in between surgeries. I'd basically just "poop" normally on a toilet to get rid of it - no other maintenance was necessary.
Here is another vegan wishing to get rid of stoma :(
What's a j pouch
It's an internal reservoir commonly used when someone has an ostomy reversal. It's made using the end of the small bowel and is shaped like a J, hence the name.
He explains it in the video, Cindy!!!
My J pouch is 4 months old, my colon was removed 8 months ago due to 400+ polyps. I have trouble with tons of gas, a chronic lack of sleep, and incontinence. But given that I didn't have a choice and have to give myself time to adjust, I can't say yet that the j pouch was a mistake.
Glad that you're giving yourself that time to adjust. It may take a while longer before your body adjusts, so hang in there!
Vegan Ostomy Does the excess go away in time, as well as the extreme urgency to go to the bathroom? Half of the time I get a big urge to "go", and it turns out to be gas. It still beats the ileostomy though.
Exactly, I have the same issue, but as you said it beats the ileostomy.
How do you feel now please?
I feel much better. The 1st 2 years was rough. I still have issues, but I sleep through the night most of the time, and use the bathroom about 8 times a day.
I wish I never got my j pouch. It sucks to be me most days.
☹☹☹ I'm sorry to hear that, Ann.