Delaying Step 3 Surgery: How Long Is Too Long?

Hi Guys,

New here. I've had one question on my mind that I've been unable to find any answers on. In November I was finally relieved from Ulcerative Colitis after failing a few medications and throwing in the towel. I went into surgery explicitly wanting the bag and the bag I did come out with (loop ileostomy with a constructed j pouch, step 2). My surgeon is already pushing me to finish up step 3 but I'm not interested at this time (I am genuinely fine with the bag). How long could I theoretically put off the final j pouch surgery? I wanted to keep the bag for at least a year, but I could always decide longer at the 1 year mark.

Thank you!

Ryan

Ah, yes, more information is helpful. Most people active on here are former J-pouchers, we’ll see if anyone can give you a ballpark timeline. Did your surgeon mention how long he/she is comfortable with waiting?

Hello,

Sorry I didn't include more information. The J pouch was always in the equation. I had no desire to keep my rectum (where the most inflammation resided) and stay at step 1 or do it all in one shot and have the ken butt without exploring the J pouch option. I wanted the colitis gone for good. However I want to master the bag and I don't want to take another 6+ weeks off of work so soon. I was thinking at this point to have the reversal in November or December (1 year after step 2 was completed).

Hello,

I met with him at the end of the month and he wanted to meet again in March to discuss it further. He DID entertain the possibility that I may come to that appointment and be concrete in my decision to push it off to the end of this year. He did not seem necessarily for or against that idea. His concern is that an unused j pouch may degrade over time and eventually the reversal will not be possible. I would like to know how long current or former j pouchers kept the loop.

Thank you,

Ryan

Hello C,

I have a friend who has been exactly where you are for perhaps twelve years now. She refuses to have the pouch activated. We both have the same surgeon, and I knew her somewhat before both our surgeries, but she has moved away now. Before I had the pouch activated, we would discuss this when we crossed paths. I went on with it, and it was awful. After twelve months, I went back to the ileo. I still have the pouch, but it is disconnected, so my friend and I are the same, and I have been this way for perhaps six years now, and that is how it will stay. I technically have a loop, but the second opening has been closed at the stoma. Some do have a pouch, and it seems to work for them, but I would question how many are really back to normal or struggling every day. All I got out of it was that I won't die wondering if it would have worked for me.

Words of Encouragement from Ostomy Advocates I Hollister

Hi,

Thanks for the anecdote! Ideally I'd like to live my life a little bit in between operations instead of being hospital and house-bound while the surgeon does his rounds on me. While I'd like to leave the option open to trying the pouch, the success rate I've seen around here and Reddit are less than stellar, and from what I've read anecdotally, failures can often be catastrophic (sepsis, perforation). I'll try it eventually, but right now I have plans for some winter activities and a big trip in June. Those will not be interrupted by J pouch complications (hopefully not loop ileo complications either).

Thank you,

Ryan

Hey Ryan, I’m a former j-poucher. I had my  total colectomy in February of ‘10, had my j-pouch created in May of that year and pushed off my reversal until that December  (I, too, had work concerns and had taken so much time off at that point.) I’m not sure how long one can keep an inactive j-pouch before using it but I do know I needed to see my surgeon regularly for finger manipulation at the opening of it so it wouldn’t close - not fun.

Finger manipulation, yikes that sounds exciting, I've not heard of that, you have all the fun 😂

G-Day,

I had my colon removed in 2004 and got a J-Pouch. I put up with it for 18 years, and it was hell. Always looking for a toilet and the feeling of wanting to go was painful. Over 3 years ago, I got my surgeon to remove it and got my ileostomy, the best thing I ever did, and now life is 100% better. It works for some, or so they say, but not for me.

Regards, IGGIE

It sounds a lot more exciting than it is! 😬