Pouchitis Advice and Chicagoland Specialists

I don't have a Chicago recommendation, but no one should ever be strong-armed into a research study. It's simply unethical, even if the study itself is perfect in every way.

There are certainly other antibiotics worth trying. The most obvious next one is probably Xifaxan (rifaximin). Unfortunately it's quite expensive. Xifaxan tends to stay in the gut, which reduces the tendency for side effects. There are additional antibiotics as well, hopefully well known to your next GI doc. 

When Cipro alone stopped working for me, and I had run out of single antibiotics to try, adding another antibiotic (Flagyl, in my case) has done the trick for several years now, even though Flagyl alone never did anything for me. 

There are other measures that might help the regimen be more effective. VSL #3 DS definitely seems to help me. I take a high dose, and (after a lengthy battle) my insurance now covers it. It's expensive, too. A very low carbohydrate diet also helps some folks, but I haven't taken that challenging (for me) step yet, though I fiddled with it for a while. 

You might ultimately find your way to biologics (and I might, too), but it should be something you choose (in consultation with your doctor) rather than something imposed on you.

Good luck!

I agree with Scott... I too had Pouchitis. I cannot take Flagyl either for other reasons. 

My cocktail is Cipro and a steady regime of VSL#3DS (stands for double strength). 

I also have stayed on Cipro 500 mgs. Every other day. I also take Lomotil along with Imodium. It may take a couple of weeks for your body to heal. Are they absolutely positive that it is Pouchitis and not cuffitis? 

Good Luck and we all understand your frustration!!!! Hope this works. I wouldn't do biological or Immunotherapy when there are other option way before jumping into heavy duty drugs! 

Janie

I'm not sure that it's quite right to think of biologics as more "heavy duty" than antibiotics. They are different beasts with different pros and cons. Many gastroenterologists do use antibiotics as their "first line" treatment, but that could easily be because the biologics are so much newer.

Lionspride: I live in the northern suburbs of Chicago and my local GI has referred me to University of Chicago, Dr. David Rubin. I have a consult with him in May in regards to my recent bouts of pouchitis. Very reputable IBD Department from my research. All the best! Kara

I have been in the Western suburbs of Chicago my entire life and have had a good run, so I have really had no need for a GI until recently. A few months back I ran into my first bout of pouchitis in MANY years and was unsure where to go. I ended up going back to the University of Chicago as this is where my journey began many years ago. When I began my search for a doctor I realized after 30 years most doctors I dealt with back then are no longer available to assist. I did run across my old GI doctor from the 1980's as he is still practicing. I actually ended up meeting with him and being treated for my recent bout with pouchitis. He says he has another 3 to 5 years left in him before he will retire and really seemed to be on his A game with the J POUCH and pouchitis.  I felt he listened and communicated very well and made me feel like I was part of the decisions he made in treatment.

Good Luck

His name is Dr Ira Hanan out of the university of Chicago. 

http://www.uchospitals.edu/physicians/ira-hanan.html

I used Entyvio and didn't have any luck.  The infusion nurse (in Boston) told me that there are many pouch patients who use Entyvio and it works for them. I am not sure Entyvio is a study drug per se, like in clinical trials. Entyvio is FDA approved for Crohns & Ulcerative Colitis.  Some schools of thought say that pouchitis is a manifestion of ulcerative colitis   Maybe Entyvio is a study for your particular doctor?  Good luck!

I've been on Entyvio for a year and a half. I'm doing really well on it. Good luck. I'm not part of any study, my GI thinks out of the box.

ALLYKAT - I noticed in your list of procedures/medications that you had a diverted ileostomy in July 2015 and had "diverted pouchitis".  What is that?

Also, did the fatty acid suppositories do anything?  Where did you get the suppositories? Did a custom pharmacy make them?

And finally, you started the Entyvio while diverted?  Can you tell me more about that? Did the pouch clear up while diverted?  Sounds like you remain in remission after the take-down?

Thanks,

Joe 

This last round of pouchitis really did me in I could not eat terrible pain and so sick I lost so much weight that my surgeon gave me a temp ostomy to let things rest and to decide from there But I never got better because I got what is known as diversion colitis that is when the pouch lays empty it sometimes developes colitis or diversion pouchitis in this case I had 2 infusions and was connected right before my third I went into remission immediately 

the fatty acid suppositories did little I got them from a pharm that is connected with my hospital Cornel they make them for the IBD center they were suppose to help with the diversion pouchitis it might have helped a little but not much to make a difference so at that point it was either pouch removal or Entyvio I had a bad reaction to remicade although 2 doses keep me pouchitis free for almost 3 years

yes I've been in remission with the Entyvio for over a year and a half the infusion makes me sick for 5 days and I curse it but then I'm fine till the next in fact 2 weeks after my last one I went on a cruise I just have to plan to keep that week free but what choice do I have I'm not doing more surgery and I hated the bag 

oh yeah somewhere along the line I tried the fatty acid suppository for regular pouchitis did nothing

as much as I did not want to do bio drugs I've come to realize that my body needs them

i think in my case the antibiotics especially my favorite xifacan really messed up my flora and made my pouch worse long term use and I loved xifacan but it was that one that I ended up twice in the hospital with these awful flares