J-Pouch surgery - 9 years and counting, some personal perspectives

Hi All,

It's been a while since I last posted anything on this forum (2009 I think). I thought it might be helpful for some people out there with an ostomy considering the J-Pouch surgery to have another "long-term" experience share out there to help in their decision making. I know my own decision to have the J-Pouch surgery took a lot of research and thought - for those going through that process now I feel for you; it's not an easy process.

Quickly, a bit about me: Male, 30s, 6'1, 200 lbs, Canadian, married, work as an engineer. Severe UC in the early to mid 2000s. Ileosotomy 2006 (great surgery - changed my life thank God). J-Pouch 2008. Some of my old posts in 2008 detail some of the early struggles I had post J-Pouch surgery (not too bad compared to some, but still legit struggles) and I wanted to follow up with this retrospective.

My overall experience with the J-Pouch has been, in general, a positive one. While my bowel conditions will never be like what they were before UC, the J-Pouch has given me a "new normal" that I have adjusted to and can happily accept.

Here are some positives:

-Most of the time I feel healthy and strong.
-Bowel movements typically range from 6 to 8 per day. Sometimes less, sometimes more. Depends on what I eat / drink and whether or not I take fibre. Sometimes the output is practically the same as a normal BM (i.e like a long log haha).
-No urgency (or very rarely). I've never had a significant "accident" with the J-Pouch.
-Able to lead active lifestyle (sports, weight training, hiking, biking, skiing, go to picnics, parties, etc.).
-Can eat pretty much whatever I want (although some foods are clearly better for the BMs than others)
-Weight loss / maintenance / gain is manageable. Maybe a little bit harder to gain good weight / muscle mass than when I had an ostomy (I think nutrient absorption suffers a little) but not bad.
-Body image is good - scar is barely noticeable now
-Mentally, 9 years in I rarely think of or stress over my bowel situation that much. Like I said, it's a new normal.

Here are some negatives:

-Usually wake up at least once during night to go to the bathroom. This is by far the worst thing for me. Does not seem to matter when or what I eat. The problem is, when I get up, I'm up. So if I happen to wake up at 4 am it's tough for me to get back to sleep. I rarely get a solid 7-8 hrs in. Sleep meds can sometimes help with this.
-Occasional itching / mild pain or irritation around anus area.
-Gas can be painfully bad sometimes, depending on food / drink.
-Unfortunately some of my favourite treats (coffee, beer, spicy food etc.) result in the worst BMs. But I love beer so much I'm willing to sacrifice!
-I'm always able to "hold it", but if it's been a while holding it (like 6 hrs+) sometimes it can get uncomfortable and I start thinking about where's the nearest bathroom and that can get a little stressful. But this is a rare occurrence and nothing like UC.
-Had pouchitis once for several months. Not pleasant but a 3 week course of antibiotics (Cipro / Flagyl) seemed to clear it up.

So, that's about it for my own personal retrospective. My understanding is that this procedure has over a 90% satisfaction rate and I think I'm in that 90%. That being said, I know there are people out there that have had chronic bad experiences with the J-Pouch. My heart goes out to you and I pray you can find some peace and resolution to your problem.

I hope this post helps some people with an ostomy considering J Pouch surgery.

Thanks for reading,

Devin

Thanks for the reply Keith. Just curious - how was your pouchitis diagnosed / classed as chronic versus acute? Was it symptom based or did you have a scopes that indicated persistent inflammation etc.?

Take care,

D

I am also mostly happy with my J pouch, although I am not quite as good as Devin. The first six months with the pouch were very painful and difficult. I wished for the bag back every day. Once I got through the initial experience, it was much better. I now am happy not to have to deal with the bag.

I go 10-12 times a day but without urgency. It is a rare night when I am only up twice. I have had repeated bouts of pouchiitis and then have some urgency and pain. It's not perfect or like having a colon, but I can mostly lead my life without too much thought about it. I am glad that I did it.

Hi All,
I'm new here. I've had my j-pouch done in 2001 in Ottawa,Canada. i'm pretty happy with my pouch. I eat pretty much everything. I sleep through the night. BM 5 to 6 times a day. I stay away from alcohol and spicy food. If I have them I experience huge burn in my butt. Not worth it.

Once a year I have pouchscan done and there are always some ulcers. My last scan showed that the connection between small intestine and pouch is much smaller than year ago,I also feel that my anus opening got smaller as well. So far i don,t feel any pain but the size of the opening scared me to death.
Does anyone have similar problem!!!