Good morning,
I had a pouchoscopy done yesterday and they found my jpouch was inflamed and full of ulcers.
I have a follow up in two weeks and I have already already tried Cipro, Flagyl, and Rifaximin.
What are other medications that are available for pouchitis? Can anyone give any insight? I want to get some knowledge and get a chance to think about things going into my appointment.
thank you in advance,
Michael
Replies sorted oldest to newest
The antibiotics you mentioned are the first level of treatment for pouchitis- Cipro, Flagyl, Xifaxin, Augmentin, Levacquin, Keflex, Docycycline, Zithromax, etc.
The second level of treatment are the biological drugs like Remicade, Entyvio, Stelara, Humira etc.
Other treatments that can be used are Budesonide, which is available in both capsule (Entocort) and enema format as Rowasa enemas, steroid enemas (Cortenema) and probiotics. Some people are able to use probiotics alone to treat pouchitis, although in most cases it's merely a secondary supplement and is dangerous to use as stand-alone treatment for active pouchitis. Fecal transplants are another option, although one doctor told me that "it's nothing more than a powerful and ultra-expensive probiotic", and its efficacy in treating pouchitis as opposed to the other options is questionable.
Those are the primary treatment options. I was on rotating antibiotics for 25 years, which suppressed the symptoms but did not completely stamp out the inflammation. Starting in 2015, I had better success with Remicade. Remicade is typically, although not always, the first biological drug used on J Pouches, due to there being more clinical data on its efficacy with J Pouches. But other posters have also used other biologics with success Remiacde is administered via an infusion. Humira is self injected in the thigh.
Good luck.
I would say biologics possibly, like Remicade or entyvio.
Rectal medicine: Mesalamine suppositories/enemas.
Budesonide is a good option as well 
Michael, I’m assuming that you had no luck with Flagyl, Cipro, and rifaximin (you implied this but didn’t say so directly). If you tried them long enough at adequate doses then CT has laid out an excellent set of options for you. One other thing to consider is two antibiotics in combination. Cipro and Flagyl is probably the most common combination, and it has sustained me for 5 years or so after single antibiotics failed. Per some misinformation above, mesalamine has no value for pouchitis, though it can be quite useful for cuffitis.
Hello everyone and thanks for the response.
Scott, I only ever tried Cipro and Flagyl together, to no avail.
CT, thank you for this, I will follow up with my specialist and ask about these if she doesn’t mention it.
anymore recommendations are welcomed and appreciated
Michael
Michael,
I rotated antibiotics continuously for 25 years. The cipro/flagyl in tandem, as mentioned by Scott, always was my strongest go-to and I would rotate with 4-5 others that were less effective. But the effectiveness was measured by how they alleviated my symptoms. They never did anything more than keep my inflammation in a "simmering" state (see pics below from 2012 and compare with your own pics). Biologics starting in 2015 worked better on not only clearing up symptoms, but in reducing the inflammation dramatically (although not completely). Here are the pics from 2012, pre-biologics, post 18 years antibiotics treatment. First one is pouch outlet, second one is pouch inlet:
@Scott F posted:Michael, I’m assuming that you had no luck with Flagyl, Cipro, and rifaximin (you implied this but didn’t say so directly). If you tried them long enough at adequate doses then CT has laid out an excellent set of options for you. One other thing to consider is two antibiotics in combination. Cipro and Flagyl is probably the most common combination, and it has sustained me for 5 years or so after single antibiotics failed. Per some misinformation above, mesalamine has no value for pouchitis, though it can be quite useful for cuffitis.
Here are my sources for using meslamine for pouchitis
@Former Member posted:Here are my sources for using meslamine for pouchitis
Fair enough - thank you for supplying references. Mesalamine doesn’t tend to work in pure pouchitis, as these articles admit, but if all else fails at least you wouldn’t be the first one to try it.
@Scott F posted:Fair enough - thank you for supplying references. Mesalamine doesn’t tend to work in pure pouchitis, as these articles admit, but if all else fails at least you wouldn’t be the first one to try it.
Your welcome. Thank-you Scott. I will try to post references on here more often whenever something is questioned.
You might need a combination of antibiotics and biological, like others have suggested. I am on Cipro and Humira and it seems to be a good mix for me, but I had to try an few to get here. It’s almost like you have to be a chemist to figure it out.
Sorry you’re going through this. I know that once we get the j pouch we hope we’re past the tough patch! I hope you can find the right mix that works for you!
