Surgery

6550mom

After suffering for years and running out of options, I had the J-pouch surgery in 2010. Although it is/was a slow process of healing and getting to a comfortable place, I am living a relatively normal, med-free life. I have some ups and downs, but have been very lucky in my postoperative course.

The surgery isn't right for everyone, but I couldn't take any more prednisone or remicade, so it was the right thing at the right time for me.

I just wanted to say that if anyone has any questions about the surgery, I'll check this thread/ forum from time to time to see if I can answer them.

ctalimenti

How many BMs are you having daily now? Are they loose? Do you have any urgency or accidents?

6550mom

I don't count so much anymore. I can say it's probably about the frequency with which other people go to the bathroom to pee. I get up once per night usually. If I had a big meal, maybe twice for quick visits. During the day 4-6 times, maybe more, but quick and nothing that gets in the way of living my life. Stools are still and always will be loose and occasionally watery.

The urgency varies. Sometimes, I have some uncomfortable urgency, but it's the exception now and not the rule. I don't usually have any lifestyle limitations. I've gone on boat rides, hikes, help coach the kids' baseball, worked hours on end... If I know I will be away from a bathroom, I sometimes just take 2 imodium before I leave the house. Sometimes, I don't need it, sometimes I do.
I rarely, rarely have accidents at night when I'm really tired, had too much alcohol or am suffering from a GI bug. It's rare.

I still get inflammation from time to time and I notice it in my joints- they will ache and feel weak, but it's nothing severe and I get over it pretty quickly.

I have had a couple bouts of 'pouchitis' - kind of miserable, like having a UC flare. Each time, I just take cipro for a week and it fixes me right up and I'll take a probiotic with that.

I am WAY, WAY better off now and for me, the surgery was beyond worth it!! I feel so, so lucky.

LauriePar

Thank you for being so honest with your answer. My niece has been struggling with the same issues as you. She is currently doing the Remicade and her GI has suggested surgery. She is giving the Remicade and some kind of other medicine another try first. I will pass on your remarks to her. She is 41, by the way.

I too have UC, but Asacol works for me and eventually puts me in remission-- where I am now.I am 54 and have had this since I was 25, and finally diagnosed when I was 30. When I do have a flare up, it is totally exhausting because of the amount of blood I lose. I pray they will come up with some kind of cure for us!!