J-pouch Reversal Surgery

Nick, Had the surgery 9 years ago and am doing great. Sure I do have to go 4-6 times per day depending on how much and what I eat but I no longer have the urgency. When I meet people with UC I feel for them and know what they go through not knowing if you are going to make it to the bathroom and feeling sick all the time. I'm here to tell you that I'm thankful that I had the surgery . Yes for the first few months it was tough with butt burn and getting my appetite back but it was well worth it.  The Good Lord has made our bodies to heal and your's will too. Don't be afraid, choose a good qualified surgeon and get it done.

I don’t think the good lord talk is appropriate here. People die during and after surgery, during flares. I had the Jpouch surgeries and I’ve had more problems since takedown than most of my time with UC. Really wish the “good lord” cared enough to fix me. I don’t regret the surgeries. I had to try the Jpouch. Sometimes they just don’t work out (for non paranormal reasons) 

I still recommend trying a Jpouch.

a lot of people are happy with theirs. More so than people who aren’t. 

AARON posted:

I still recommend trying a Jpouch.

a lot of people are happy with theirs. More so than people who aren’t. 

I agree. Even though mine didn't. I would have regretted not trying it. 

It's not easy. Keep that in mind.  It's tough at first no matter what.  It's a major surgery.   

And at your age it's a no brainer if it were I. I was 20 years older and went for it. I had great insurance.  So I went for it. 

Richard. 

Well worth it for me and I was 61 when I had mine done.  It has been 2 years and things are good.  To be honest, I don't keep track of how many times I go anymore.  I just know it's not affecting my ability to do pretty much whatever I want.  

I’m almost a year post op, 38 years young, and just got pregnant for the first time. The surgery has literally changed my life, my ability to do things I enjoy and the way I enjoy life. I have been through three obstructions, so I want to reiterate that it’s not an easy road, but in my opinion it’s worth it. 

Min terms of the take down surgery, idk if it will be more challenging for you since you’ve had your ostomy for longer than I did (2 months). Some times adhesions or scar tissue will be a concern. Just go with the flow and follow instructions from the doc. Keep an eye out for funny stuff (sharp pain that doesn’t go away), fever, signs of dehydration, etc. The gas was pretty intense for me at the beginning. I felt like I was in the bathroom 15-20x a day. But it does get better. Using some barrier- type of cream is going to help a lot. I’d suggest using that every single time you go. Also, you may want to invest in a Bidet - I love mine and I believe it helped cut down on the but burn. I also suggest wearing a depends or a pad to bed at first. You may find a little leakage when you relax during your sleep. Have wipes on handy (or jump in the shower, if you don’t mind waking up) if there is an accident. 

Do you know what time of wound/incision you’ll have for the old ostomy location? Are they packing it or using staples? I remember some people said their doc didn’t do a thing and let it heal from the inside out. I think my doc chose staples bc if there was an infection, it would be easier to put a drain in.

Anyhow, I hope this helps. Let us know how you make out!

I am a former j-poucher who was shocked post surgery by the many ways having a j pouch could be worse than an ileostomy or life with a wonky colon. So first, I would recommend googling something along the lines of “j pouch failure rate” or the like and making sure you are prepared. There are a lot of stats thrown around, but the latest numbers from docs I trust who see both the good and the bad is that around 50% have complications (some minor, some major) and 20% are removed (for varying reasons.) Knowing what to look for if you should have an issue (pouchitis, cuffitis, fissure, abscess, blockage, etc.) will help you deal with it better or quicker.

Then, given your 3–year hiatus from using your rectum, I’d google “pelvic floor physical therapy” or “pelvic PT” and consider tacking on “men” so you don’t have to wade through all the info that pertains to women post-partem. Be prepared for the difficulty you might have with physically retaining your new stool consistency with lax rectal muscles. Understand a lot of j-pouchers have to alter their diet to manage retention issues and be prepared to deal with this as well. Alas, I was not.

Lastly, I would recommend googling “continent ileostomy.” This is what I have now after having had so many problems I had to have my j pouch removed after 5 miserable years. I didn’t even know it was an option and wish I had been made aware earlier. (Many thanks to the others on this site who had to go this route and provided so much valuable info and support!)

I know most people have good results, so I write this not to dissuade, but because I just wish I had been more prepared for what else was possible. I second other recommendations to be prepared for how you are going to handle leakage (pads?) and have a bidet seat installed. And buy some Balneol and Calmoseptine to have on hand in the hospital and at home, very helpful stuff for dealing with the inevitable butt burn. I’m absolutely serious about the bidet, as in, I can’t believe I wasn’t given a script for one prior to surgery, it’s that important.

Best of luck & God bless!

Some good info here.