In my case, if I had known how bad the four years between diagnosis and j-pouch would be, and how good my j-pouch outcome would be, I would definitely have chosen surgery much sooner! Lifelong remission on low risk meds would have been nice, but that's just not how things went for me. I'm really happy with my j-pouch: I eat and drink normally, feel healthy, almost always sleep through the night, and don't feel the j-pouch limits my life in any significant way. The one thing that bothers me is that emptying it can be loud. Today, I went to the bathroom early before leaving the house, took my kids to school, worked all day, and didn't even think about using a bathroom again until I got home at about 5. Compared to my life with UC, the transformation is incredible.
In my experience, using a j-pouch is nothing like chronic diarrhoea. When someone has diarrhoea they generally feel ill, and their bowel movements are exhausting and urgent. If I'm not actually ill with some bug, a normal j-pouch movement is fine. I feel well, my stool is usually fairly formed (though softer than someone with a healthy colon), and there is no urgency.
Albnnach that is amazing that your pouch is working that well. From reading the posts on here I believe there are more success stories then not . Unfortunately I am one of the not . Maybe that will change . It’s been a year and three months since my takedown and I have yet to sleep more then 3 hours without getting up my norm is anywhere between 3-4 trips a night by 5 am the pouch is empty . I know that because the next few trips consist of yellow bile only . I still experience chronic pain for most of my BM trips and all are loud and full of gas that I can deal with .
For me surgery wasn’t a choice I got to make . My bleeding couldn’t be stopped blood transfusions were wasted within a few days . So no regrets here I am
just waiting for my pouch to settle down so I can live a normal life like others on here.
49 year old female mother of 4
UC since 1993 remission off and on
The last flare-up was 2008 till 2009 remission till June 2017
Hospitalized November 2017 for 5 weeks
Anemia 4 blood transfusions in hospital
prednisone, asacol, pentasa,encort enemas, steriod enemas, hurmia all failed
Dec/17 Total colectomy
March/2018 2nd surgery J pouch
Take down 3rd surgery Aug/ 18
Cuffitis sept/Mar 2019