J-Pouch Success: Worth the Temporary Good Times?

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Danno

Hey!

Just curious... For those on here that have had a good experience with an ileostomy but decided to go forward with the J-pouch surgery anyways.

My question to you is:



Did you regret the pouch even though the good times only lasted for a few years/many years?
If you had good times beyond the "norm" but still ended up back with a stoma, would you do it all over again? Or stick with a stoma?

I hear from a ton of people that they saw "years of success" but eventually some go back to a stoma, some don't.

The choice to try a J-pouch is one that most of us think about; I'm just curious if those who have tried it and saw success value the "good times" even though unknowingly (at the time) it would be temporary.

I'm trying to get a feel for my decision and whether I'd be okay with potentially seeing "a duration of time" of success, even if for a few years or, best case forever!!

Thanks for your input.

jeanneskindle

I had no choice. I guess I would look at what disease process I had been enduring and then ask my doctors and people who have been through both how it was. In my case, my doctor said I would simply be reinfected with Crohn's, and I would end up having to have the stoma in the long run anyway. The benefits of a stoma for me versus the J-pouch were that I was out of pain and I didn't expect to be in pain, like I had been. The J-pouch was too iffy. I had had enough pain.

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eefyjig

Danno, I agree with Jeanne. The reason for your ostomy matters. I had ulcerative colitis but went for the J-pouch anyway. It took three surgeries to get there. UC affected what was left of my colon, which was my rectal stump, and my pouch was infected a lot, requiring antibiotics to keep it somewhat happy. Many days were, no pun intended, a crap shoot. I opted for a permanent ostomy to get off the meds, stop the pain, and for some consistency. Consider the reason for your ostomy and ask your doctor how it can affect your J-pouch outcome. Also, keep in mind that, yes, you can go for a J-pouch and then decide for a permanent ostomy but a) you are left with less intestine, and b) you have more scar tissue from more surgeries. Danno, I think it's great that you're asking questions, you will be well-informed!

Danno
Reply to eefyjig

I don't know how they decide, but my surgeon told me they had doctors basically dissect my removed intestines, and after that was done, I would get his decision on the pouch. I had that meeting a few weeks ago, and I was given the thumbs up on the jpouch.

His last words to me were, "You have three options: 1. Do nothing; 2. Get the stump removed and be permanent; or 3. Let him know I'm the next year max if I want the pouch. In that case, I have two more surgeries.

I had UC in a small portion of the large intestines, but he took the whole thing to prevent spreading of the disease to my knowledge. I am not sure how it all works, but maybe I'm good? Maybe not?

I've had the Ileostomy for 3 months now, and I have to say, things are good. I just wonder what I'm going to do in the future.

Danno
Reply to jeanneskindle

My surgeon put me in touch with 5 stoma buddies who had gone through the J-pouch surgery with him.

They are all living the dream. They all have the same story "It was hard at first but once you figure it out, life is good." They all claim to prefer the pouch over the stoma. So I came here to ask if that's common.

Mind you, they likely aren't on here because they are doing well. Haha.

 
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IGGIE

Hi Danno,

I had UC for many years, losing blood all the time, and then I started to show signs of cancer. My doctor said I could go for a stoma or a J-Pouch, but this was 20 years ago and J-Pouches were fairly new then, so I didn't know much about them and I didn't have all these wonderful people on here to talk to. I decided to go for the J-Pouch. He removed all of my colon and formed a J-Pouch. I had to have a stoma for about 3 months until the J-Pouch had healed. Danno, I had 18 years of problems with UC in what was left of my colon at the J-Pouch, plus accidents at night when you have no control over it. 2 years ago, I decided to go back to a stoma and got a Barby Butt. It was the best decision I have ever made. I don't have to keep looking for a toilet and no spasms that I used to get. Life is now 100% better than the last 18 years with a J-Pouch. I LOVE MY STOMA. But it's up to you, Danno. Good luck and let us know which way you go. Regards, IGGIE

AgentSmith

I'd say there's lots of variables depending on your doctors, your health, etc. I'm 44 years old, but when I was 21 years old, I had an emergency total colectomy (removal of LG intestine) in OC, CA, USA. I dropped to 113 lbs from 180 lbs. I had complications due to negligence. They ordered a CT scan with barium sulfate (they should've used gastro-graffin?) so it leaked through my ulcer perforations causing another 10+ surgeries over a 3.5-year period at Stanford Hospital, CA. Most surgeries were emergency as the J-pouch leaked, causing me to go septic. They patched it, repeated that 2x more, then it burst. My midline incision split open in 2 spots while I still had staples in me. So, after 2 years of packing gauze, saline, etc., my insurance finally paid for plastic surgery. Oh, nearly every single surgery in 4 different hospitals, the doctors said I'd die, yet here I am.

I tried the J-pouch, but it was either poorly made or my body rejected it, or? But it was miserable while I had it. But again, I don't think I was your normal case, whatever normal is, but I really wanted it to work, as I did struggle with depression from the stoma. However, I learned to change my perspective, count my blessings, and tried to enjoy life to the full. I never hit the gym, but during CV-19, I got a peristomal hernia from sit-ups. But again, everyone's different, we all have our struggles, but do your research so you're not going in blind expecting the doctors to do everything perfectly. People make mistakes, and everyone's disease varies in severity, but if you're young and healthy, doctors are experienced, and you're willing to weigh the risks, that's all you can do. Much success to you.

Bob 48

I had pancolitis and opted to get J-pouch surgery at Mayo in Rochester. I had some complications after surgery but nothing too out of the ordinary probably. Everything went pretty well for the first 7 or 8 years and then started getting pouchitis quite a bit but it was less painful and not as severe as my UC was so I just dealt with it for years. About 18 months ago, I started having severe back, bladder, and pelvic pain and finally got a scope done after months of trying to get one in my area. I should've admitted myself to ER to force a scope sooner. Anyway, they found a fistula that grew into a vertebrae in my lower back from my pouch that led to nerve damage and bone infection. I'm also type 1 diabetic and fighting a bone infection in my big toe now, probably all connected to the original bone infection in vertebrae. The doctors said my pouch looked perfect except for the area the fistula grew out of and said tests still came back as UC and not Crohn's. I don't know if I would do it all over again or not but don't regret giving J-pouch a try. I wanted to tell you my experience so you can have as much information as possible. I had J-pouch for 18 or so years and know there are people that have had one a lot longer than that and would try to talk to them also to hear about their experiences. Look for people that have had one for 25-30 years and still have a good functioning one to talk to.

Axl

Hi Danno

I had the whole J-pouch thing done and the minute I woke up, I knew it was a mistake. I tried to tolerate it for a year with pouchitis and cuffitis, waiting for an improvement. It didn't happen, so I made them disconnect it and go back to a stoma. The pouch is still there, and I still get mild cuffitis periodically. The surgeon tells me 50% of them fail, and who knows how many of the other 50% are doing it tough. At first, I found a pouch site, then realized most of them were living on a cocktail rotation of antibiotics to try to get by, and then there are the pouches that fail after a number of years. I would never have touched it if I knew what I know now, but now I won't die wondering if it would have worked for me. It was presented to me as the way to go. I don't hear much about the good results, but apparently there are some out there somewhere. It's a tough choice only you can make. It was a tough one going back to the pouch too, but it was the best choice for me.

Good luck with whatever you choose.

Danno

I find it strange that this surgery is recommended by so many doctors knowing the potential risks. I guess there's that chance things could go very well, which is a piece of hope to hold on to. This is the part that makes the decision so difficult. Do I live a great life with a well-functioning stoma? Or give this jpouch a shot and hope I'm the small percentage that has success. Tough decision for sure. But of course, I'm the only person who can make that choice. It's just not an easy one and no one will ever know the outcome but future me. Haha.

eefyjig
Reply to Danno

Absolutely. I have to wonder if my surgeon wanted to up the number of J-pouches he did or if he couldn't conceive of someone in their forties having an ostomy. I think he may have been putting his own "stuff" into his recommendations. Tough decision for us, for sure.

gentlejohn

If a J-pouch functions properly, it is fine. If there are problems, you will wish you had an ileostomy, and you will lose a lot of small bowel. Make sure you read about the complications and number of stools per day before you have the surgery.

Danno
Reply to gentlejohn

When you lose a lot of small bowel, I assume it will function poorly compared to what I have now?

Now I digest food very well, and I don't have issues with dehydration. I assume that can/will change?

Danno
Reply to eefyjig

Strangely, my surgeon is very confident in his J-pouch. He gives me tons of success stories to prove it. And they are all so happy. It's such a huge difference talking to them vs. forums.

Don't know what to do or believe. Haha

crappycolondiaries

There's been lots of good advice and questions to ask. I can't weigh in on the J-pouch aspect, GentleJohn could explain to you better how my reversal is different even though I had an ileostomy as well. I'm only 5ish months into my reversal, so no long-term thoughts. But for me, it honestly came down to trying the reversal...I knew I'd regret not trying it...with my age/health/reason for having colon removed, I knew I could do ok with the possibility of more surgeries if the reversal didn't/doesn't work how I want it to. If I had decided to keep the ileostomy and not try, I would've needed a different type of ileostomy anyways, so I was already looking at least 1 more surgery.

IGGIE

Danno, ask your doctor to give you some names of JP people that are not happy with it. I bet he won't give you any. I don't want to sound condescending but surgeons get paid a lot more for doing a JP than doing a stoma. Regards, IGGIE

7afin

Hey Danno

I had a J-pouch for 25 years or so. It was 100 times better than an ileostomy. Worked fine, and zero issues for the vast majority of the time. Like an ileostomy, you have to factor in bathroom access when you're doing sports or events or traveling, but on the whole, absolutely no regrets. The surgery for it is major and it takes a lot of recovery time.
There is a website: j-pouch.org. Check it out for more people to ask/data.
You are still fairly young so it could be a good option for you. Like I said, it worked great for 25 years and had no issues with it for that whole time.

cupcakegirl512

Hi Danno! I had an emergency colectomy, rectum left behind, and I was given the opportunity to have a J-pouch. As someone who originally refused surgery for as long as possible because I was kind of ignorant about it and just assumed it would be life-ending, I really wanted to make sure I got my other two surgeries as quickly as possible. However, it's been five years now, crazy enough! And I have decided I want to keep my ostomy but I also want to keep my rectum because even though I still have UC in it and sometimes I have to sit on the toilet and release some blood that's built up in there (this is not often at all, I would say maybe once a month if that often), it still gave me a sense of normalcy lol but my life with my ostomy is just so much better. I'm a very big pros and cons list kind of gal and when I made my list for the J-pouch, I didn't really have any pros. The only one at the time was not having my bag and now I don't even see that as a pro because it's saved my life and given me a life. I've moved overseas, I have a normal sex life, I can eat whatever I want without feeling like my life is going to end lol and it's just been amazing. And if I ever do decide one day I want a J-pouch, I can go from there, the decision is still mine, but life with my lil' ostomy has been so good. I hope whatever decision you make is one for you!

Daisy2023

I had my J-pouch from my teenage years until January. I didn't have problems for almost 30 years. I developed a fistula, and my pouch started to leak through the fistula tract. I would do it again if it's an option for me though, but I don't think it is. They had told me it was a 50/50 chance of working, but I jumped on it especially being a teen. My life was awful, so I thought with my stoma. I would say go for it, but here I am with a failed J-pouch myself. All in all though, it functioned well for a long time. I wish I had better advice, I know it's a tough decision.

Redondo

My doctor highly recommended against it because my issue is Crohn's. So, I never did it.

I had a good friend that also had Crohn's and did the J-pouch to then have it reversed. By that time, they used up a major part of her intestines. Unfortunately, due to complications with the J-pouch, she passed away.

Depends on what the underlying illness is, is a big consideration.

7afin
Reply to Redondo

You made a really good point! I forgot to point that out. Thanks.

Past Member

I had a J-pouch after rectal cancer surgery and a brief stint with ileostomy while everything healed up. But unfortunately radiation did a number on my pelvic area - nerves, bladder, intestines -- so the J-pouch became stenosed and I was either bowel incontinent or unable to eliminate without a great deal of work. It was a pretty miserable existence for a few years and I opted for a colostomy. Best decision I made. If you've had radiation to your pelvic area, I'd discourage a J-pouch. Hopefully they've improved radiation techniques since 2002 so the pelvic nerves aren't impacted so much. (I'm also unable to walk now due to the radiation.)

crappycolondiaries

Circling back to add, I had a long wedding weekend this past weekend and there were times I did think having an ostomy would be easier. I was being super careful when I ate, trying to do mostly liquids unless I knew I'd be at one location for a couple of hours. Traveling when driving longer distances is also interesting. I was planning on driving to Chicago in a few weeks but now I'm leaning toward flying. Do I regret it yet? No. But for events and depending on the type of travel, I'm learning I have to be more disciplined, which is hard for my laid-back style. And my system still isn't predictable, so I can't know for sure if I eat at x time how long it will take to go through my system- but I'm also not textbook with any of that.

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