Marc, antibiotics (Cipro or Flagyl) are the usual first-line pouchitis treatment, and one or the other usually works quite well. Is there some missing information to explain why that hasn’t been tried this time?

Biologics (like Humira) can be very helpful when it’s time to move on from antibiotics, for one reason or another.

Thanks Scott, 

i have no idea why I have not been put on a course of antibiotics , i had pouchitis a few years ago and they gave me prednisone for six weeks, it seemed to help. 

Is there something I am missing ? I have no allergies to it or symptoms of anything else. 

Marc, if your diagnosis is really pouchitis and your doctors have never tried antibiotics then you either need a new doctor or to educate your current one. At the top of the pouchitis forum here is a post with links to a couple of excellent journal articles. If your doctor is worth keeping then printing out those articles for him/her is worth a try, but many won’t take the time to read. In the meantime, perhaps you could ask to try a two-week course of Cipro. A typical dose might be 500 mg twice daily. For folks with pouchitis the results are often quick and close to miraculous.

Note that if your doctor doesn’t know how to treat pouchitis there’s a risk that he/she doesn’t know how to diagnose it, either. If you actually have cuffitis a different treatment would be recommended.

Scott, thanks again.

So I pushed and asked about an antibiotic and she said she is really concerned I may have crohns also .

she wanted me to the pred taper then go on humira , would that make more sense ? 

Is that possible ? I had a bag for years after having my colon removed and never had an issue, , now I have a reversal and have CD.

so she called in cipro and tinidazole (my insurance sucks) twice a day for a month. 

Does this sound more in line ?

Scott is right, antibiotics are the first line of treatment for pouchitis, NOT prednisone and NOT humira or any biologic. Are we missing something here?

Forget about whether it’s CD or pouchitis. I am officially CD and I can tell you the difference is IRRELEVANT - it’s inflammation of the Pouch, doesn’t matter what it is or what you call it, antibiotics is the first line of treatment. And anyone who states the contrary doesn’t know what they are talking about. I would suggest you may want to switch doctors.

I take Cipro with flagyl and then rotate into tinidizole. I haven’t heard of Cipro being taken with tinidazole but I suppose it is possible to do that and rotate into flagyl. I do the reverse. Augmentin/Amoxocillin also works well but I can’t take because of the methotrexate.

Marc, like CT I don’t clearly have a pure UC diagnosis. Cipro and Flagyl have kept me well for 8 or 9 years so far. I’m not sure why your doctor is using two antibiotics at this stage, and a month may be longer than you need, and only your doctor knows what evidence there was to suggest Crohn’s. If it were me I’d want to start with just Cipro and see how it works. If Cipro alone does the trick, who needs the additional side effects of a second medication, and the confused mess if you don’t tolerate the combination (no easy way to tell which one is the problem). You could start with just the Cipro and give it a few days. You can still add the tindazole if the Cipro alone doesn’t seem to do much.

I think we are not getting the full picture here. Why did you have the ileostomy for years before reversal? Even with a CD diagnosis, antibiotics are a treatment option. I get the sense that there is something specific about the presentation that is different. In some cases they are opting for biologics earlier rather than later. I don’t think we can assume the suggested treatment is wrong, even if unconventional. I also suspect a quite severe case of pouchitis to prompt a full month of combination treatment.

Bottom line, more questions and answers are needed from the doctor.

Jan

I definitely think we are missing something here- perhaps incomplete communication between patient and doctor, not really sure.  I also agree with Scott that I have never heard of a Doctor prescribing 2 antibiotics when 1 is possible or even likely to do the job.  Cipro alone is usually the first antibiotic prescribed; I was given flagyl when we found out that Cipro alone did not completely ameliorate the situation and because my doc told me they come from different antibiotic families and work on different bacteria.  The same theory could be behind using a cocktail of Cipro and Tinidazole but makes no sense to use this "shotgun approach" first when Cipro alone might very well do the job.  

Also a Crohn's diagnosis is completely irrelevant to treatment modalities.  I had inflammation in my pouch for 15 years and it was diagnosed as pouchitis, and then  in the last 11 years inflammation inflammation was also seen in my ileum above the pouch and the diagnosis was then changed to Crohn's Disease.  But my treatment has not changed, and what works works, and what doesn't work, doesn't work.  Instead of using labels like Crohn's Disease or Pouchitis, we should just call it chronic inflammation of the pouch.  And all treatments for chronic inflammation of the pouch are the same and are usually given in the same order.  

Thank you for the overwhelming response and advice, I really do appreciate it.

i had acute UC and emergency surgery at 28 . I lived quite comfortably for 13 years with a bag by choice (and fear of what ileo pouch would do). I had my issues with it but they were really minor, I ate and drank what I wanted when I wanted. Yes, I was a paranoid mess as I believed everyone could see it , but it worked.

I eventually choose to get a reversal after years of “what ifs” and now that my kids are old enough to swim etc, I wanted to be involved with them without wearing a bag to the pool and beach. I wanted to try a reversal , so I did . It has been 3 years and it has been really rough. 

I can offer advice to anyone on the bag and living with it, if is not the end of the world, but it is nice not to have it and feel a little normal without it.

I hope that clears a few things up.

To my lknowledge, all I have is pouchitis, she does think I may have CD but that is unconfirmed . All my labs were negative for anything including C Diff and Cufitis.Inflamation was the underlying cause. 

So,  I am going to take all of your advice and just go with Cipro. If things do not improve , I will add Tinidazole. 

Again, all of you, you do not realize how good it is to have you here, thank you again .

ugh prednisone! That is what drove my husband to have his colon removed. Antibiotics is the first course of action with pouchitis. I hope you can get a second opinion.

Doc wants me to try Remicade Infusions or Humira, this is after 9 weeks of Cipro and now Tinizadole, neither worked. , I have been on Tapered Prednzone as well for some time, now at 5mg , Doc rightfully wants me off of it. 

Anyone try Remicade or Humira ? Or should I try another Antibiotic ?

This is driving me insane,,,,

Hi Marc,

I am sorry that you are still suffering with this terrible Pouch inflammation.  You have been through a lot.  I have been on both Humira and Remicade.  I am not sure which drug would be more effective for you, but for me Humira was much easier to take.  Humira comes in a pen and you inject yourself- very easy.  Remicade for me was a 4 hour intravenous drip.  Humira seems to also have less side effects because it is formulated from human proteins, and Remicade has a component of mouse protein.  Away from the biologic choices before you - I would absolutely get a second opinion - there are GI doctors that may have more experience with Pouch inflammation.  I am not saying your doctor is not good, but I think it would give you a sense of comfort to get another opinion.  The Cleveland Clinic seems to have experts on Pouch problems.  If you are close to a major city you may find another expert.  From what I have read, Flagyl also is a treatment for Pouch issues.

I take Remicade and it’s around a 2 hour infusion time. It’s been very effective for me for 2.5 years now.

When Cipro works it tends to be astonishingly quick for most people. 9 weeks makes no sense to me; it was clearly not working after 10 days. There are others worth trying (but not for 9 weeks!): Flagyl, rifaximin, Augmentin, and perhaps one or two others. Is the doctor sure it’s pouchitis? Has C. Diff been ruled out?

C Diff has been ruled out. Cipro was working at the start with Prednisone but once I tapered off the pred it came back, so we switched over to Tinazadole which I have been on 7 days, it does not seem to be not working.

Marc, My story is almost identical... a very rough daily 3 yrs with my pouch. Ive tried everything, every diet, antibiotic, pred, stelara. Hindsight the best years physically were with my ostomy.... maybe we should both throw in the pouch and go back??? I want to, im so close... my life is dependent around my shitty pouch. Cant eat, cant sleep, cant work out, meds meds meds... gaining weight. They say cd, they say pouchititus.. or both? 

Whats your plan? I need inspiration too

Tara

Oh, and Im a fulltime Remicade infusion nurse manager, who literally thinks, lives, eats and breathes this life and disease... and i truly feel ive tried everything and its just not meant to work out. Im always super positive and im getting more and more ok with a permanent ostomy