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Hi, 

Just wanted to introduce myself and say I check this site often out of curiosity. I suffered with UC from 2008-2012 with really only about a year of true remission. Had total colectomy with end ileostomy 2012 after completely failed all medical therapy at that time and was steroid dependent. My surgeon (at Vanderbilt, Nashville TN) at the time said I would be a good candidate for Jpouch surgery in 3 step procedure. I did so well postop being able to enjoy life, got married, gained about 50-60 lbs of good weight, had my first child that I honestly wondered if I would EVER undergo the Jpouch surgery. plan was to do my masters, enjoy being newly married and being free from the bathroom, then in 2 years I would go for the Jpouch. well..... 5 years later and meeting with my surgeon to discuss the jpouch tomorrow... haha. my wife and I agree that if im going for it now is the time (provided its an option). the ostomy has served me very well but definitely has its downsides. however going from freedom into the unknown is anxiety provoking as it should be. whats worse or.. maybe not as worse is that I am a General Surgery Physician Assistant for 11 different general surgeons in a busy hospital.... so.... I understand the risk and issues at least associated with multiple abdominal surgeries. none of our surgeons do the jpouch procedure however so I dont see it day in and day out. at any rate, excited, nervous, anxious and glad to be a part of a great group. any tips, advice, precautions are greatly appreciated. thanks for having me!!!

 

- Native

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I, too, was steroid dependent and finally got to the point where that didn’t work. I tried Remicade and Entyvio. Nothing worked. Last year I decided to have the surgery (2 step) last Aug - a month after moving into our new home and two months before my wedding. Did I mention I was in the midst of wrjtjng my dissertation to get my PhD?! Not like i had stress or anything lol! The surgery went well. I felt with some trouble with obstructions and just adjusting to life with a loop ileo. 

Less than a week after I got married, I had my reversal. The reversal was pretty easy. The first week I had to go a lot of times during the day. And, the butt burn was tough. I used cream every time I went to the bathroom and used a bidet. I still use wipes and cream when I’m not at home. 

I am so glad I did the surgery. I mean it was life changing. I didn’t love the bag, but who would. I felt like I aways had to carry back supplies just in case of a leak. I could wear clothes without it showing. Anyhow, it was def better than when I had UC but it’s still a life changer. My j pouch has given me back my sense of independence and my sense of normalcy.

I def go more than the average person, but mostly I have a bowel movement when i pee. So it doesn’t come with the urgency or inconvenience like UC did. 

You’re def doing the right thing by getting input from other people who have gone through it. For me, it was a quality of life. I feel like I’m me again. 

Whatever you end up choosing, i wish you luck. I’m sure you’ll make the right decision for you. 

Last edited by Bubba1028

You are asking good questions. One thing to be aware of is that a j pouch brings new challenges especially as it goes through the adjustment mode. These challenges aren’t always pleasant especially when it seems as if you’re back to living in the bathroom again. 

I had four kids six and under when I got my pouch.( My baby was 5 weeks old when I had my original collectomy.) I didn’t sleep well at night until just a few years ago, since my pouch loved to empty at night.I also had a lot of issues with pouchitis.It made for some interesting and tiring days, but we got through it. For a while I wondered if I’d have been better with just the ostomy; however, now that my pouch is actually behaving better due to medications and I’m sleeping, I would have the surgery again. As mentioned earlier there is something freeing about not needing the bag. You will learn what works with your pouch and what doesn’t. Unfortunately, not all pouches behave the same. You will find a new normal for you. Find a good GI who can walk with you during the adjustment process.

Hope this helps some as you think through your decision!

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