Another j-pouch post - looking for some timelines

So I had my reversal last Thursday July 10. Surgically everything went well. I haven't had any real pain since about Sunday.

I knew what to expect afterwards as far as frequency and urgency goes during the adjustment period - my surgeon flat out told me most patients describe it as similar to having colitis all over again. Experiencing it, however, is entirely different. Since I started food on Saturday I've been averaging at least 16 times a day. A lot of the time I'm in the bathroom every hour to hour and a half, and just like with colitis there are times I'll sit on the toilet for half an hour and every time I move or go to leave another wave comes through.

Another issue is the pain and discomfort. Every time I have an urge to go, it hurts. Despite clamping down as hard as I can it's still not preventing things from leaking out.i haven't been able to sleep for more than 45 minutes the past two days without waking up in my own mess.

The frustrating part is even with colitis and in my worst flare I could always control it (minus a handful of times) despite the urgency. Everything also seems to be getting worse, not better.

Again, I know this is all par for the course but I need to gather an idea of when things will start slowing down. I'm aware that things should cut down "significantly" within the first few weeks and then even moreso throughout the next month. But I need something a little less abstract than that.

Any stories, tips, etc are much appreciated. The more specific the better.

I agree with everything Marianne said above. There is no one timeline unfortunately.

How much are you eating and what are you eating? When is your next check in with your surgeon?

Oh - the first week really sucks! But it does get better. I think I was constantly in the bathroom and in a lot of pain at first. But just 4 weeks out, I went back to work. I had to drive an hour each way, and never had any urgency. I even managed to drink coffee on the way in! It took about 5 months to sleep through the night, and I just last week was away from my house and my bidet for an entire week - no problems! I spent my days at the beach and didn't have to leave to use the bathroom! It does truly get better ... but you have to get through the initial stages. Slowly reintroduce foods (I can now eat anything I want, even big salads - sorry Pluot ) and give your body time to heal and adjust. I take Metamucil and a probiotic daily, but no GI meds at all.

PSUDOC said...
(I can now eat anything I want, even big salads - sorry Pluot [img]/community/emoticons/smilewinkgrin.gif[/img] ) and give your body time to heal and adjust. I take Metamucil and a probiotic daily, but no GI meds at all.

darnit, Alison! JK that's OK. Actually I have never tried taking fiber, I have a sneaking suspicion it is what I need to be able to tolerate more veggies. I may give it a try soon, my one year anniversary is fast approaching :-D

ArPar, I didn't include a timeline because for me my trips to the bathroom were down to about 6 per day by the time I left the hospital, and it's been the same ever since. I have heard a LOT of people say there is a turning point around the six week mark.

If you're eating thickeners and following all those "best practices," I would ask your surgeon to evaluate you for pouchitis or C. diff, especially if you feel like you're getting worse over time. It's possible to have pouchitis after takedown and it's better to treat it than to continue to wait and suffer.

Besides eating thickeners the surgeon told me to stay away from fats like butters, oils, etc... I had an Ensure extra protein drink the other day that wrecked my system for half the day.

ArPAr,

I feel for you, the reversal was the step that I was most concerned about because of the uncertainty and I didn't know what to really expect. Fortunately for me I haven't really had too many issues with frequency after the reversal.

Liz makes a good point about being evaluated for c.diff or Pouchitis.