Are there any people on here considering going back to an ileostomy? I read some posts, but don't recall for sure who is considering and why.


Thank you,

This message has been edited. Last edited by: Jenivi,

I have a perm ileo after failed j-pouch. I had my pouch 3 1/2 years and had pouchitis the whole time. I never had a remission of any kind and was on 1000mg of Cipro most of that 3 1/2 years. Even at that, I still had 12 BMs a day and 3-4 at night. I still had cramping and pain and started to have side effects from the Cipro. I tried every holistic treatment, every diet variation, everything anyone could suggest short of immunosuppressive drugs, which I wasn't interested in trying.

At the age of 30, I decided on the perm ileo so that I could get on with my life and start a family (I could NEVER have been pregnant on the Cipro and how I felt). I wanted the pouch out but my surgeon convinced me to just disconnect the pouch. I did and got worse. I still ended upon Cipro 4x in 18 months, still had pain and cramping, had 4-8oz of discharge from my disconnected pouch each day.

So, 18 months after the disconnect I had the pouch out (with a different surgeon - I had to go to three differrent surgeons to find one who would support my choice). Things have been great since. I am healthy, eat what I want, sleep through the night, take no drugs. I had a baby in 2006 and am about to have my second in 3 weeks.

The ileo has been liberating for me because it allows me to live the life I want, without having to manage around my j-pouch, which is what I had been doing the whole time I had it.

Hi Jenivi,

I have surgery 22nd July for j-pouch removal and perm ileo, due to chronic pouchitis for the last 2 1/2 years. Two antibiotics have had bad side-effects, so am now taking 3 in 2 week rotation

My daughter is getting married this Saturday 21st June, so have waited until that is over

Marina

cross/Marina - good luck with your jpouch removal.

JillM & others who had or are having removal: Did you regret having the j-pouch in the first place? Do you wish you stayed with your ostomy?

Love,

I noticed you had your ileostomy about a month ago. When I had my first step....by far the most challenging surgery I ever had in my life....I ended up loving my ileostomy and kept it an entire year. I felt healthy and could eat/drink everything! I really didn't want to have the takedown at all for fear of the unknown! My son convinced me to at least try living with a functioning J-pouch and if I didn't like it....have a permanent ileostomy. So, I went ahead with the takedown. I cried on the operating table and my surgeon told me I could still change my mind! What a wonderful man. I bit the dust, went ahead with the takedown surgery and had the easiest recovery and great success with my J-pouch. That was 6 years ago next month. I am so glad I went ahead with the second surgery. Best wishes!

I was acutely ill when I had my j-pouch surgery and ahd only had UC 6 months. Ihad no time to research options or understand what was really happening. I was told the j-pouch was the "gold standard" treatment for my situation and since I was going 40 times a day, was on TPN and weighed only 88 lbs (and had been in the hospital for 20 days), we said "sign us up"

Do I regret it? No. I was 26 at the time so I think I would have wanted to try the j-pouch. What I regret is that my surgeon was not realistic or honest with me about the possible complications and what the reality of those might be. I was told pouchitis was "no big deal and easily treated with 2 weeks of antibiotic" While that may be true for some people, maybe even most, no one ever told me about the possibility of chronic pouchitis, which I ended up having.

If I had been given all the info, I still probably would have tried the j-pouch. But, other than the UC issues, I was very healthy. I was considered a strong candidate for the j-pouch and had a top notch surgeon. There's no reason I got pouchitis except for that was the luck of the draw. I don't blame the surgeon, I don't blame me, it just is what it is. I do blame the surgoen for not being up front and honest, even throughout my treatment for pouchitis.

When I had my pouch out, I found a new surgeon. I'm very happy with my choice to go to the perm ostomy, just as I was initially happy with the j-pouch decisions (although the only other alternative I was given was to stay in the hospital, sick and miserable).

I had my pouch recently removed due to perianal disease/fistulas. It would be unfair to say in hindsight that I regret having the pouch. I know I would have been unhappy not knowing if it would have worked. My final decision to go back to the ostomy was based on the fact that I was in constant (mild but still constant) pain and discomfort, it affected my energy and willingness to go and do things that I really wanted to be able to do, I got sick of telling a crying baby to "hold on for another minute" because I couldn't use the bathroom in an efficient manner, and I really wanted to be able to be of use to others. I really felt like my life was lived just to deal with the pain. I wanted to feel like I had something to contribute to my family, my community, my friends, and at church. Personal choice. We all deserve to feel like the life we are leading is a benefit to those we love and those that surround us.