New to the group

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. 

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!