Have you had a J-Pouch or are you considering one? Leave a comment below and share your experience.

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.

Thank you. I needed this talk.

Thank you very much.

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.

Very nyc information, thanks a lot

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.

Thank you for the info 🙏🙏🙏

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 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 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 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!

I am in the decision making state. Thank you for sharing ☺️

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 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.

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!!!!! 👍😊

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

I literally needed this video today! I to have perianal Crohn’s and might need to switch from my j pouch to an osteomy

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.

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!!!

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 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

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.

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 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 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

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.

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 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

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.

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

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

I am planning to n getting the Jpouch soon! Where can i get your T shirt pls?

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.

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.

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?

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 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.

I had diverticulitis and had a storma bag could I get a J pouch done they have ask me to have it reversed

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. 🙏🏻💚

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.

So it is not recommended for Crohn’s ??

What about eating.carnivore before you get to this stage, does anyone know if it has worked for them.

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 ?

See the surgeon tomorow to schedule

..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 ….

My doctors are recommending that I have a colectomy with permanent ileostomy, and I've learned a lot from your videos and others on KZfaq. 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.

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.

Had a colon resection when a baby I've had irregular bowel movements my entire life Have always had very stinky farts

Here is another vegan wishing to get rid of stoma :(

What's a j pouch

I wish I never got my j pouch. It sucks to be me most days.