I’ve been happy on continuous antibiotics. Ideally your would rotate between three different ones every few weeks. Every treatment has disadvantages and risks. The fact that antibiotics have worked so well for you is an argument in their favor. In my opinion it’s inexcusable that you have spent so much time unwell. If your GI doesn’t even know about antibiotic-dependent pouchitis then you may need a smarter GI. I’m not sure what the Crohn’s diagnosis is based on, but getting the pouchitis under good, long-term control should be helpful no matter what else might be going on.

Leanne,

i am sorry about your diagnosis . Let me add however that I’ve always been skeptical of the now Crohns diagnosis.  Have they diagnosed this due to biopsies,ulceration in pouch, chronic inflammation in pouch, peri anal issues?  I have all of the above and have not been diagnosed with ctohnss and have had a pouch for 7 years with a stricture at outlet and now anal fissures and  still have not been diagnosed with ccrohns I️ too have about 6 waterybiwtl movendbts a day and they are not treating my pouch inflammation and ulcers.  I have a great GI and have been seen by some of the top colorectal surgeons in the country.  Are your doctors certain you have no mechanical/prior surgery related issue that is causing your chronic pouchitis?  

Thanks for getting back to me!  I had a scope 3 weeks ago and my GI said it was crohn's.  I questioned the diagnosis as I have done some research and found that patients with constant pouchitis are misdiagnosed with crohn's.  He said the scope and biopsies were the bases of the diagnosis.  I left a message for him earlier today, telling him how great I felt on the antibiotics and would like to continue with maintenance antibiotics instead of Imuran.

Scott, what antibiotics do you use?  I can't take flagyl, I know that is one that is used.

Cipro alone worked for me for years. Since I couldn’t find any others to rotate with, it did eventually become less effective. In my case I found that adding Flagyl did the trick, even though Flagyl alone never helped. There are others worth trying: Xifaxan, Tindazole, Augmentin, and a few more. Single ones are best if they work for you. It’s a good idea to find the lowest dose that does the trick, since that reduces side effects.

i have sucess  with xifaxim and Cipro but I try not to take cipro any longer i believe it has caused the constsnt ear ringing  I now deal with. 

 Ask the GI exactly what he/she saw that indicated Crohns Was it in the actual biopsy pathology?  I do think they throw their hands up at times w chronic pouchitis and lean towards a  Crohn’s diagnosis but as Jan would say, it does not really matter what it’s called as it is the treatment plan that is important. 

I had Dr Remzi who is the jpouch guru tell me my pouch was burnt out two years ago and felt i had Crohns. The pouch is still functioning and two other surgeons and my GI say it appears fine even w chronic low level inflammation and some ulcers in it.  It’s my anastomoses that’s  a mess w scarring and inflammation and  now anal fissures from the stricture there. 

I am waiting for my GI to get back to me still.  Thank you so much for your input!  

Let us know  how you make out. Best of luck.  The lack of sleep is very tough. Stay strong. It’s a battle for those of us with IBD. 

I will, thank you!

Like others I was told I had Crohns after 5 years of UC diagnosis. I had a infusion 2 weeks ago. It had a effect for a few days then nothing. I have yet to take the second infusion due to a unrelated cold.  I am asking if this is a process and its too be expected or should I consider other medications when it does not work.