I have struggled for the last two years with my health, ever since I became pregnant and gave birth to my daughter. During the pregnancy I was going 25 times a day and had constant leakage. I was put on Augmenten for Strep B and by BM's slowed way down but the leakage continued...I assumed it was the pressure of the baby. I'm wondering now if I've actually struggled with a mild case of pouchitis this whole time.

After her birth, I was taken off meds and again had 25 BM's a day and was close to throwing in the towel with my J-pouch. I was placed on the Paleo Diet and again my BM's slowed down to about 8 a day which is great and I'm happy with.

BUT, I started having pain and burning in the pouch, and had some perianal ulcers. I was scoped and found to have some sort of undetermined type of inflammation. They put me on Cipro and Flagyl and within two weeks the ulcers were gone as well as the pain and leakage. But after the two weeks the leakage started again. I still only go about 8 times a day and they stools are formed and solid but I ALWAYS have leakage. Is this possibly pouchitis still or just that I have leakage issues?

I also have EXTREME fatigue and can barely make it through the day. I sleep as much as my baby does and it's not enough to help me feel good. My doctor is willing to try anything to help me.

Currently I've switched from Flagyl and Cipro to Xifaxin.
I also take two VSL packets a day, fish oil, and Vit D.

Any thoughts or advice would be appreciated.

Olive Oil,

Wow sounds like you have your hands full!

I am no expert...so keep that in mind, but when I first was diagnosed with pouchitis I was under great stress. It started with leakage, fatigue, going to the bathroom WAY more, etc. When I started cipro and or flagyl all the leakage went away almost immediately. My BM's often went from 10+ to 4 or 5 a day.

Then after a few weeks the antibiotics did not work as well, the leakage came back, and I started to feel worse and worse.

I then started a new antibiotic things get better again. I now know I have chronic pouchitis that requires antibiotic rotation.

So hopefully by the time you read this post your cipro and xifaxin have started working well, and you are feeling better. Then with any luck, you will be able to get off of them

Hope this was helpful, and you are feeling better!

Thank you so much for the response! The Xifaxin didn't seem to do any good at all and after a week I started on Cipro again which has worked pretty well the last two days but I don't know how long it will last for me. Right now it seems only Flagyl and Cipro work but only for a week, maybe two...

What's the next step after antibiotics? Steroids?

I've been there. Since you are getting A response, even though short-lived, antibiotics do technically work for you. Now you just have to find the right combination.

If you look up some papers by the great god of j-pouches Dr. Shen up at Cleveland Clinic he presents an algorithm for treating pouchitis. Reading his papers has really helped me understand everything better.

In short he says that if your pouchitis gets better on antibiotics but you have frequent relapses then you have antibiotic dependent pouchitis. There are a couple other factors that play into this (like correct diagnosis), but in general this is what his algorithm says.

With antibiotic dependent pouchitis he recommends low dose antibiotics and/or probiotics. So now you and your doc just have to find which antibiotic(s) work for you and for how long. Steroids and other immunosuppressive agents are typically reservd for people who get no help from antibiotics at all.

Hope this was helpful. Bummer xifaxin did not work for you. I am going to ask my doc if I can try it when my pouchitis is under better control. I have heard that xifaxin is not good at getting a pouch into remission but has been shown (with limited evidence) to help keep a pouch under control. And it is not absorbed systemically (hence why I want to try it). Just something to think about.

Good Luck!

Sorry to hear about this. It is very tough. I am in a similar boat right now.

I feel the best on Augmentin and I gather it is safer than CIpro and Flagyl - but recently had to increase the dose to 3 X 500mg/day. I cannot tolerate cipro any longer and it does not help nor do I tolerate Flagyl.

My accidents are getting worse and worse (esp at night when I am getting multiple large accidents).

I am getting the afternoon exhaustion again, and the burning and diarrhea is getting worse.

They dont have xifaxan in Canada. I am not sure what to try next.

Anyway, I am sorry that I dont have any answers. I hope that things improve for you - it must be tough with such a young child!

As I continue to read posts, I'm starting to feel that the statistic that only 1% of patients will have chronic pouchits is very skewed. There's at least 10 of us on here regularly talking about it, probably dozens more that have pouch problems and don't realize it's pouchitis, and always more being added. Anyone out there have any idea how many people are walking around with J-pouches or are having this surgery each year? I still find it hard to believe that my surgeon (who has done this surgery for 20+ years) has never had a patient with chronic pouchitis other than me.

I feel the exact same way! Until I found this board all my doctors acted like NO ONE else they have ever seen has ever been stricken with chronic pouchitis. Yet here, I feel that it is a common trend-far more than 1%.

I think you have to remember that we get a skewed view of things here, because more people post on a board like this BECAUSE they have problems-there are thousands of people who are very lucky and are not having these sorts of problems with their pouch. On the UK online support group I also post on there seems to be fewer people complaining with pouchitis than here, but then the UK is a much smaller country than here.