Skip to main content

Replies sorted oldest to newest

@Scott21 posted:

Or should I give it a few weeks to see how I fair?

thanks!

See how it goes but at the first sign of a return of symptoms, refill or renew the prescription.

I was on rotating antibiotics for over 20 years- continuously- before going on Remicade in 2015. I weaned off antibiotics 2 years ago. Long term use is doable, but rotation is helpful for a variety of reasons, among them to avoid building up a resistance.

CTBarrister
Last edited by CTBarrister

Most cases of pouchitis clear up with a single course of antibiotics. Some cases need another course (or a different antibiotic, or a higher dose). For some folks (like CT and me) the pouchitis comes back shortly after the treatment is stopped, and in those cases of *chronic* pouchitis treatment is needed long-term. Reading posts here will make it seem like chronic pouchitis is more common than it actually is, since folks with chronic illness are more likely to spend time on support forums.

Scott F
@KenB posted:

Hi folks. I'm at week 7 post take down with either cuffitis or pouchitis, according to my surgeon. He prescribed a 10 day Cipro course. It seems to have some pretty bad possible side effects including the risk of tendon damage. Has anyone experienced this?

Ken, of course people have experienced side effects, including bad ones, from Cipro. OTOH most people who take Cipro don’t have a bad reaction. Every medication involves a risk/benefit trade-off. I’ve been taking Cipro without a problem since 2008.

Scott F

Give it time. You may find that you need to add a probiotic, especially after antibiotics. I seem to get about 6 months between pouchitis flairs if I take Visbiome(a probiotic) daily. If I don't take Visbiome my flairs are much more regular and worse.

Everyone is so different and it can be very difficult to know what works for you. The biggest thing to try and do is recognize the next flair and if it starts again make a plan.

I don't think everyone will agree but if you can do nothing all the better. Usually once experiencing pouchitis means it will reoccur and then you have to see what works for you.

If your doctor will give you a script and allow you to fill it as needed great! Some doctors won't period and some may not trust you until you have dealt with it a few times.

Probiotics come in many forms, most commonly used here are vsl3 and Visbiome. Both are expensive enough and it will depend on how much you need. Also availability, I can only access Visbiome. There are others but I don't believe any others are specifically for people with our medical needs and testing behind it.

Good luck

P

I've been taking Cipro & Flagyl quite often during the last two years. It seems to be the only thing that really helps for chronic pouchitis. Many of the modern meds like Remicade failed.

What worries me is that my liver blood levels are often increased, most significantly gamma GT and alkaline phosphatase. That may indicate an upcoming chronic liver's disease, a so called PSC. Has anyone experienced that in a similar way? Those blood levels are sometimes in the normal range, like this spring, and then they are completely off limits some weeks later.

SteveG

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×