I would try the Cleveland Clinic.  Dr. dietz is a surgeon and the fix it guy!  Others here have more experience with doctors at CC than I do.  But I would go there before I do anything else.  Also a great GI is Dr. Shen.  I hear folks here talking about both of these doctors all the time.  Good luck to you.  My son is facing similar issues and getting ready to make decisions soon as well.

This is the link to the article:

http://www.cghjournal.org/arti...3%2900483-7/fulltext

Jan

When Cipro and Flagyl stopped working for me individually I started taking them together. That's been working very well for me for over a year.

Without looking at your pouch your GI suggests removing the j-pouch??? What kind of doctor is that; I'd find a new GI.

You could have strictures causing you issues which can be seen by a scope and usually fixed easily with a dilation.  

My pouchitis responds to the combination of Augmentin and Cipro.  

You could also try a biological medication like Remicade or Humira. 

I live in Council Bluffs, Iowa. I have a great gastro Doctor in Omaha, Dr. Brian Ward. I know it may be a little bit of a drive, but he is wonderful! I also have a j pouch (for about 24 years, I am 44). I have struggled with pouchitis and many other problems along the way. I have pouch scopes done once every 1-2 years. A year ago I was diagnosed with crohn's and after trying different meds, I now will be starting on a biologic (Humira) in the next few weeks. PLEASE do not take the pouch out and PLEASE get a second opinion. If your doctor will not even scope your pouch, how can he treat you! My blood tests always come back great, but my pouch inside looks like a cauliflower farm . I hope this helps, please don't give up. Believe me, it takes time for for your body to get used to your pouch, it was a major surgery, but make sure you have a doctor that you can trust and you are comfortable with. Take care.

Have you been tested for a C.diff infection? Pouchitis is pretty uncommon in those without IBD. However, you say you had surgery due to gangrene, so you definitely had something going on in there (like a twisted bowel or mesenteric blood clot). Your initial problem could be causing residual effects. Yet, without proper diagnostics, it is all conjecture. You neec new eyes on this.

Jan

Thank you all for your replies. My dr is doing a scope tomorrow as he did not know the dr that did my pouch didn't do a scope. I had to go to someone else to get the pouch and didn't like the place. So when they said I could go back to my normal GI I was happy. I realized he didn't know that. so hopefully tomorrow I can find out what's going on.

if he can't help me, I definitely will search elsewhere before making a big change. I fought hard for this pouch, I just wish I was like others that don't have problems. I would love to go to Cleveland but could not afford to go that far.

I had my scope today and all the dr found was a ulcer on the anastomosis. He said the pouch looked healthy otherwise. He is sending in a biopsy to see if I have chrones, which was not what I had before, I had ulcerative colitis. So I will see what happens from here. The only thing he could suggest was going back to the U of I. ��

The biopsy could easily be inconclusive. An ulcer at the anastamosis might be cuffitis, which can make you pretty miserable if untreated. Cuffitis is best treated with UC meds, but delivered as suppositories or enema that get right to where the trouble is. I wouldn't jump to Crohn's on that basis, but I didn't get a look at the ulcer, either.

BTW, the expensive pouchitis med with an "x" sounds like Xifaxan/rifaximin, which didn't do anything for my pouchitis, either.

According to the medical literature I have read, lesions that arise at or near the suture line should not be considered evidence of Crohn's, since this is an area where inflammation can occur without any IBD. A biopsy may help, but can also be inconclusive.

Jan

Scott, 

he he has me using canasa suppository. Will that help cuffiis?

thanks, halo

Canasa suppositories are a treatment for cuffItis, yep. It's mesalamine, which is a treatment for UC. 

Rachelraven,

thanks i I hope they help.

Canasa will take a while to work. Have you just started it?

you could also have mechanical problems with your pouch. generally only a very very experienced gi pouch doc can figure that out. I had that from day one of jpouch connect.  If thats the case, pouchitis and cuffitis can and be never ending depsite what drugs are thrown at it.

Yes I just started the suppository. I'm also on cipro and I'm having but pain now.the only time it feels better is laying down. My husband and I agree we got together more when I had the bag cause my butt never hurt. I will go back to my surgeon and see if he can figure anything out. Thanks for the advice.

Hi Halo52208,

I live in the Des Moines area.  My local GI is a good doctor. .He did a pouchoscopy and along with cuffitis I had c.diff.  Jan mentioned c.diff above. They test your stool for c.diff so unless you gave them a stool sample I doubt you've been tested. After treating my cuffitis for months with Canasa or Anucort he referred me to an IBD specialist at the Mayo Clinic.  We discussed The University of Iowa Hospital Clinics and he thinks Mayo  is better so referred me there.  I've been going there since 2012.  I don't know what kind of insurance you have but mine covered Mayo and Medicare does as well.  Mayo in Rochester, MN is just 3.5 hours away from DSM and I bet around the same from Cedar Rapids. 

Keep using the canasa daily.  As Scott said, it might take time to work. I was on it for months before my cuffitis calmed down .   My GI there said he had some patients that had to take it a few times a week when it is under control .  Unfortunately I need to use everyday.  I suggest you check out Mayo's as it's closer than the CC.

I hope you are feeling better soon.  Let me know if you have any questions.

Good Luck

Well even though my pouch looked good, the biopsy showed pouchitis. I have been forgetting the canasa. I am still on my cipro and I am already getting the butt pain back. I was doing fine last week, so I'm thinking the canasa was helping. I see the dr Thursday to see what else we can do. i don't want to take flaygl anymore, it's awful. 

How ow does some people stay on cipro for so many years and their body not get use to it? I like the cipro, no problems , but it stops working if I take more than one rounds.��

I'm  allergec to sulfa so have to stay away from that, but is there any other meds that can help, besides flaygl?

hopefully doc will have an idea besides go back to my surgeon.

I had to quit taking Flagyl too.  I'm alternating Augmentin and Xifaxan (rifaximin) using one for 2 weeks then back to the other for 2 weeks and so on.  If you feel better with canasa please take it daily until things settle down.  I had to quit taking it because of my recent surgical dilation for my stricture. I should be feeling better from the dilation but feel worse. It only takes a few days off of it and it flares again.  When I first started taking it I was inserting in with no gloves on.  It was gross so I've been using medical gloves and it all works better.  I buy them at Walgreens, so not hard to find.

Some people do take one antibiotic for years without changing so you might want to ask your doctor about that.  I can't take Cipro as it caused c.diff once when I still had my colon.  That's a big reason for me wanting to alternate.  There's a lot of variables and I feel like I'm stumbling along unable to catch up to a well functioning j-pouch. Like a moving target.  My GI at Mayo's said that the doses of antibiotics given to us is much less than what would be required for other health problems. He's never had a patient that had problems when needing greater doses. 

Take care and please let us know how your appointment goes.

Hi, we all had issues but different from each other. I had my J pouch done last year July of 2014.

I feel so much better than before. But, the only problem i have is my bowel movement. Some days i am better and other days i have to be in the bathroom a lot, I forgot to ask my doctor the size of my j pouch... Recently, i'm constipated and still had to use the bathroom . I use canasa still especially when i have diarrhea. Going to work is hard bec. i don't know  the number of trips in the bathroom i am gonna have.

The only thing that will work is not to eat after 4 pm.  but only eat between 6am -4 pm.. and just light food! But the problem is it is not healthy....

Halo, I'm on 500 mg Cipro and 250 mg Flagyl, both taken once a day. I started out at higher doses and gradually lowered them until symptoms reappeared - that was the sign that I'd lowered the dose too much.