Something Besides Pouchitis?

I will also add that I've had a fistula and know what that feels like and this doesn't seem like one, since I feel fine for a few weeks after taking the antibiotics and there is no drainage (unless its deeper/internal?).

Like I said, I take Align, but maybe I need a stronger probiotic after a course of antibiotics to balance things out and the pain/fatigue/chills I get is a bacterial overgrowth coming back?

I also had recurring pouchitis symptoms like yours, but also with increased frequency and abdominal pain. For 19 years pouchitis was infrequent until last fall. A scope revealed pretty severe pouchitis and I went back on Flagyl, but at a higher dose. Fine while on antibiotics, but symptoms would creep back after a couple of weeks of the end of the course. I also was taking Align, but stopped it, since it did not seem to be helping. I used Canasa suppositories for about 5 days when I felt the symptoms coming back, plus I started taking a multistrain probiotic (Nexabiotic) to switch things up. Things are more stable now, but it may also be because I changed my biologic from Humira to Cimzia in December because the Humira was not controlling my arthritis well anymore. If that did not work, my GI was infavor of my rheumy adding methotrexate or Imuran to the regime.

Another strategy I have been working on is reducing my carb intake. Since my husband and I have type 2 diabetes, this was necessary anyway. It seems to help too.

Jan

Thanks Jan!

I am going to try to severely limit my carb intake, as it seems like every time I've had a flare up has been after a carb heavy meal. I have been using Canasa as well, as I have also been experiencing some cuffitis symptoms.

Right now I am at the point where I am teetering on the edge of feeling full-blown sick again and am just trying to do whatever I can to stabilize things before I have no choice but to start another round of antibiotics.

I have a meeting with my GI doc on Apr 1 where we are going to discuss other possible causes (Crohns, etc). I respond favorably to antibiotics (temporarily) so I always figured it was just pouchitis again, but I have learned that many other conditions, like cuffitis, can also respond to antibiotics as well. I'll keep you posted!

Thanks again!

Kevin

I think you're on the right track Kevin. Just a note about carb reduction, and detary change in general: we tend to focus on the immediate effects of dietary changes, and this can distract us from larger matters. Carb reduction, in particular, seems most effective as a long-term strategy to adjust the bacterial balance in the gut. One meal might (or might not) cause a noticeable effect, but look for any substantial benefit (if you're fortunate) over a period of months. Also, diet alone may not be enough to get the result you're looking for, but it can be helpful if you pay attention to longer-term trends.

Thanks Scott!

I agree about it taking time to see a positive effect with dietary changes, which makes it difficult to notice sometimes. I started taking VSL#3 today and am waiting to see if that helps. I'm on the verge of pouchitis, so it may be too late to turn things around without antibiotics, I just thought I'd give it a shot to see if things can subside or if I am just delaying the inevitable course of antibiotics. I am just getting so sick of taking antibiotics and it's hard to stay positive when I get off them when I just keep getting sick again. I'm just hoping that one of these times I find a way to stay off them. If I have to do another 2 weeks of Cipro/Flagyl I'm going to eat low carb and follow it up with  high doses of VSL#3 afterward to see if I can at least prolong the time until I get sick again.

-Kevin

Update: The VSL #3 came this morning. I had one packet in the morning and another in the evening. This may just be in my head or coincidence, but after the second one I swear I'm starting to feel better. If watching my diet and upping my probiotics doesn't completely turn things around and I have to take antibiotics again, I am definitely still going to continue the VSL#3 afterwards. This may have been posted before, but it looks like there is some solid research in VSL#3 keeping pouchitis away for a pretty significant number of people.

http://www.ncbi.nlm.nih.gov/pubmed/14684584

If pouchitis is an overgrowth of bad bacteria and recurrent pouchitis is the overgrowth coming back again after antibiotics are taken, then it would make sense to try and maintain a positive balance of bacteria after the antibiotics clear everything out. 

-Kevin

So my stool test results came back positive for C. Diff so this was in fact something besides pouchitis. My GI doc called in a Rx for a 2-week supply of Flagyl and vancomycin. I have taken Cipro and Flagyl 3 times in the past 3 months and the C. Diff always came back, but apparently it's hard to get rid of. I'm hoping the vancomycin and taking a much stronger probiotic (VSL #3) will do the trick this time. The crazy thing is that I asked for the stool test based on my own research online into possible other conditions and C. Diff seemed like a possibility since I had been on so many antibiotics.

Has anyone had any experience with C. Diff? Any advice on how to get rid of this or thoughts on my prescribed treatment? Thanks!

-Kevin

I'm glad you have a proper diagnosis. For what it's worth, C diff is considered a type of pouchitis, but calling it that can cause more confusion than clarity. It forms spores, which help it to survive treatments that seem like they should kill it. If antibiotics can't get rid of it, fecal transplant is remarkably effective.

The probiotic most commonly used to help with C diff is S boulardi (Florastor), rather than VSL. I don't know of any great clinical studies about this.

Thanks Scott! 

I am happy to finally know what's going on after months of feeling lousy and antibiotics not working. I always knew this felt different than traditional pouchitis, as I had abdominal pain, chills, and my stool smelled like ammonia, all of which had never happened before.

My doctor decided to only have me take the vancomycin, and not the flagyl. I'm not sure why he decided against the flagyl as well, maybe because I have taken it so many times in the past, without success. It seems like vancomycin is the main drug used for C. diff though so I'm hoping this does the trick. I just took my first pill.

Thanks for the advice on the Florastor! It looks like it can be purchased at most pharmacies, so I am going to swing by my local Walgreens and see if I can pick some up. I read that C. diff can sometimes be tricky to get rid of, but I have an appointment in 2 weeks with my GI doc to assess where I'm at. I'll keep you posted!

-Kevin

C. diff can be resistant to Flagyl, and is nearly always resistant to Cipro. There are a couple of new antibiotics for C. diff, but Vancomycin is the gold standard. Sometimes they combine it with with other antibiotics and or bismuth subsalicylate (Pepto Bismol). But, first they use vanco alone. 

Jan

Ok that makes sense. Thanks Jan! I'm hoping the vanco does the trick, as I have heard that C. diff can be tricky to get rid of sometimes. I've also read and heard from some friends in the medical field that fecal transplants are becoming a popular method of treatment for those who can't clear it up from antibiotics. I see my GI doc in 2 weeks and depending on how I'm feeling I was going to get his thoughts on that. I live in Dayton, OH but my surgeon is at the Cleveland Clinic and I figured they were probably doing that procedure up there, as they are usually on the forefront of new treatments.

-Kevin

I'm glad they figured out you have c.diff as it's nasty.  I've had many bouts of it.  Before my j-pouch surgeries one occurance was caused by Cipro so I can't take it for pouchitis or anything else. After my surgeries I had a prolonged bout of it.  It subsided but only after taking 4-5 courses of of flagyl. If it ever comes back I'm planning on asking for vanco for several reasons including I don't want a 8 month marathon with it again.  My GI at Mayo's has me alternating the use of flagyl and augmentin against pouchitis because I can't take cipro. It is considered pouchitis too as are many things. It's my understanding that "pouchitis" means inflammation and there are many reasons our pouches can be inflamed.  Dr. Shen co-authored the following and  I think it's a good one to read about anything that can go wrong with our pouches.

 http://dom.pitt.edu/gi/fellows...eadings/shen2005.pdf.

As Scott mentioned Saccharomyeces Boulardii is a probiotic yeast specifically to fend off c.diff.  I order mine on-line but am sure you can find it locally.  The kind I've been using includes MOS and is made my Jarrow Formulas.  I take one gel cap twice a day and refrigerate it as the label says that might extend it's shelf life.  It doesn't come refrigerated like VSL#3DS.

So far the vanco has unfortunately not improved my C. diff symptoms at all. I am a bit concerned because I have already taken flagyl 3 times for what we originally thought was pouchitis, but was C. diff all along. After doing some research online, it seems like the overwhelming consensus is that fecal transplant is the best option for those with recurrent C. diff. My surgeon is at the Cleveland Clinic and I read that they perform the procedure, so I called and am waiting for a call back from her nurse. My question is has anyone done this procedure? I'm assuming you have to jump through some  hoops before they agree to do it, but I would like to get it done as an alternative to continued antibiotic use. Plus, I just took the bar exam and have to wait 2 months for my results so this is the ideal time for me while I am unable to work.

Also, my parents said they'd pay for the procedure if insurance doesn't cover it. They are tired of seeing me suffer for months on end and will do anything to help me out.

My concern is that if I don't do the procedure now and this round of antibiotics doesn't do the trick, or only does for a while that when it comes back in the future, I will be a new associate at a law firm working 80-hour weeks and I will either have to suffer through work with this and more antibiotics or take time off work to then get the procedure done, and possibly risk losing my job.

Kevin,

I got my J Pouch in 1992 shortly after passing the New York and Connecticut bar exams.  Like you the stress attendant to those exams undoubtedly worsened things for me.

I am a practicing litigation attorney for 22 plus years now.  I have taken chronic antibiotics for 20 plus years to treat pouchitis.  I have never had CDiff, and it may be that early on I resigned myself to chronic antibiotic use and assiduously rotated antibiotics (I rotate cipro and flagyl with augmentin and xifaxin every few weeks) to prevent it.  Perhaps I am just lucky.

Doctors are very resistant to keeping patients on antibiotics chronically but in my case it's been of necessity (I can't get off without massive and swift pouchitis attacks that crush me within 6-8 days of going cold turkey). Probiotics cold turkey have not worked.  I take them between antibiotic dosages. But I am proof that chronic antibiotic use can be done to treat pouchitis.  My last two physicals came back with spectacular results for a man my age, which is 51.

I have had a stellar and enjoyable career as an attorney.  I work with a small firm of 5 attorneys so I don't work 80 hours but I work hard, I have done many trials and arbitrations and mediations, and the pouchitis has never really slowed me down, although I can keep it under control with antibiotics.

Once you get the C.diff under control develop a good strategy to control pouchitis and you can live with it and practice law with it.  I have done it for over 20 years.

Good to hear! Thank you for the advice! I have never had a problem with chronic pouchitis until now, but after discovering it was actually C. diff I am hoping that if I can get rid of this I will be able to move forward. The timing was unfortunate because I got this while studying for the July bar exam, which I failed after obviously not putting forth an 100% effort. I retook the February bar while still suffering but I am hoping I did well enough to finally put it behind me. It's just unfortunate that I finally figured out what was ailing me 2 weeks after the exam.

There is another antibiotic to try before going with the fecal transplant. That is fidaxomicin. I agree that you want to be aggressive while you have time to deal with this stuff. Also know that now that you know you have C. diff pouchitis, you cannot use the typical pouchitis antibiotics any longer. Even Flagyl may not be in your "bag of tricks" since your C. diff is Flagyl resistant. So, if you do have troublesome pouchitis after you get the C. diff under control, you may have to go with UC meds instead. Hopefully, it is all C. diff and controlling that is your key to better health. Once you have failed the known antibiotics to treat C. diff, it should not be difficult to get approval and coverage for fecal transplant.

Here is the CDC link on the topic:

http://www.cdc.gov/hai/organis...f/Cdiff-patient.html

Jan

Thanks Jan! I am still waiting to hear back from my doc at the Cleveland Clinic, but I am going to be pretty forward about asking if I can get the fecal transplant done. I know doctors usually prefer the "watch and wait" strategy, but to be honest I am so sick of taking antibiotics so if there is an alternative I would gladly choose it. I have been dealing with this for probably 6 months now and it has severely impacted my life. I was very sick when I took the bar exam in July and unfortunately failed it and lost a great job as a result. I really can't afford to have any major setbacks like that again.