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Hi all,


Long time lurker, first time poster. I suffered from UC and had the j-pouch surgery at the Cleveland Clinic in 2008. Since then, my pouch has been pretty normal. I could generally eat what I wanted and dealt with the occasional bout of pouchitis every few years, which antibiotics always cleared up.


Around 3-4 months ago I got pouchitis and like usual took cipro and flagyl for 2 weeks, which cleared things up. Unfortunately, I have been unable to stay off of the antibiotics this time. I will get off of them for 2-3 weeks, start feeling lousy again, and my doc will put me right back on them.


The weird thing is that my symptoms are not the same as when I had pouchitis in the past. I have had no increase in frequency or nausea, the two tell-tale signs. Instead, I get a pain/ache in my pouch that comes and goes, along with chills and fatigue. I also notice that my stool smells like ammonia or something, but other than that it does not appear any different.


I am starting to think this could be something else besides pouchitis, or maybe a different kind. I take Align and have ordered some VSL#3 to try. I am also giving my GI doc some stool samples tomorrow to rule out things like C. diff.


I should mention, I just took the bar exam two weeks ago so I have been under a tremendous amount of stress. After I finished it, I definitely felt better, but nonetheless it has been 3 weeks since I got off the antibiotics and I feel these new symptoms creeping back.


It's just frustrating because I keep getting off of the antibiotics and over the next few weeks I slowly feel my symptoms creeping up again. Has anyone ever experienced this type of intermittent pain/fatigue/chills but with no increased frequency or nausea? Any other suggestions on what this could be or how to tackle this?




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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.



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!



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.



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.


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. 



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!



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!





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.



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.


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.

Last edited by TE Marie

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.

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.



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.

Last edited by CTBarrister

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:



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.

So my the nurse of my GI doctor at the Cleveland Clinic called me back. She said that colorectal surgery does not do the procedure, another GI department does. She spoke with the nurse of one of the doctors who does the fecal transplant and the nurse agreed that I would be a candidate, but was checking with the doctor because I have a pouch and she wanted to make sure that they could still do the procedure on someone with a J-pouch. I'm pretty sure I've read on this forum about people with J-pouches getting this procedure done. Other than the size being smaller, I'm not sure why this would pose any type of extreme difficulty.

I have an appointment next Tuesday with Dr. Shen at the Cleveland Clinic to discuss the fecal transplant procedure. I was told to bring the person I want to be my donor. After they go over the procedure and do any additional testing, they set up another appointment to do the procedure and I'm assuming I bring my donor to that as well. My mom was going to bring me but she has had GI issues, so I was going to ask my dad or brother, assuming they can get off work. That should be an interesting discussion haha. My mom, who was unfamiliar with the procedure had trouble at first understanding the procedure and at first I think she thought I was joking. I just hope I can find someone willing to do this and go with me both times, as I live 4 hours away. It's not like I'm asking for a kidney, though!

This is definitely easier for the donor than donating a kidney! It's not a huge ask, but the 4-hour drive makes it bigger. One question to ask would be whether their protocol permits the donor to stop making the trip after the initial one, and how many trips are actually required. As Jan suggested, fecal microbiota transplant (FMT) is generally reserved for recurrent C diff, rather than a case that just took too darn long to diagnose. FMT seems to be remarkably effective for C diff, but it's usually wise to be cautious with fairly new procedures. 

I am surprised they are even planning for a fecal implantation so early.  I might even be a tad jealous!  This has mainstreamed a lot in a short period of time.  There was another j-poucher that got it and the fecal matter he got was from a donor in Europe!  That was right after all the problems I had getting rid of it so would have been around the beginning of 2013.  From what I've read there is a lot of testing to the donor's fecal matter and that sounds expensive.  My dosing of Flagyl was stronger for c.diff than for pouchitis.  It makes sense that you can't take flagyl but I'm wondering if by taking it if your symptoms weren't as bad as if you took nothing.  Believe me, I am not crazy about taking Flagyl but it did eventually get rid of mine and I took it 4 -5 times while I had my j-pouch.  This is why I'm hoping it will still be available to you for non c.diff pouchitis.  


I look forward to hearing about your trip to CC and your treatment.


Last edited by TE Marie

From what I have read it seems like most cases of C. diff can be cured through antibiotics, but it also seems fairly common for C. diff to keep coming back again and again until a course of antibiotics finally gets it all. I may be jumping the gun on the fecal transplant, but like I said in my previous post I just took the bar exam and have the next 2 months off while I wait for my results so this would be a much better time to explore that option because once I start working at a firm I'm not going to be able to take time off and I would hate to keep battling this while I am swamped with stress and work. I'm sure Dr. Shen will thoroughly analyze my situation in our consult before deciding to go forward with the procedure. In terms of the cost, I read somewhere that if insurance doesn't cover the procedure, it's around $2,000, although with the expense of all of my medications that doesn't seem like a lot in comparison. I will report back after my meeting on Tuesday to let you know how it went and what they decided to do.



I don't know what bar exam you took but good luck with it.  With the New York State Bar exam in Albany in 1991 I still had UC at that time and it flared badly that day. I had to make numerous trips to the bathroom which I thought would make the proctors suspicious.  If I recall correctly I then drove 3 hours from Albany to New Haven to take the multistate in New Haven the next day, and then the Connecticut bar exam on the third day.  My multistate scores were exactly the national average and when I found that out I figured I would pass because the essay portion is my meat and potatoes. 


Upon leaving Albany I remember popping like 60 mg Prednisone.  It kicked in and the Connecticut bar exam went much smoother.  New York was MUCH harder but I passed both and in 1999 I also passed the bar exam of the Mohegan Sun Gaming Disputes Court which was an open book exam, but you didn't have the time to read anything if you didn't already know it.  Which is why it is dumb to call any bar exam "open book".  If you have to look something up you are dead, there is no time.


I hope you make it this time.  Possibly having been through the experience helped you.  Time management is important on bar exams but ultimately you have to know the law and if you do, you will pass.  Good luck and hope you soon become a brother in the profession soon.

Last edited by CTBarrister

Thanks for sharing your story! I took the Ohio bar exam. Not to make excuses, but I was very sick when I took it the first time and as a result did not pass and lost a very lucrative job opportunity, which was devastating. The second time I was on a course of antibiotics when I took it so I was feeling better, but I was still suffering from undiagnosed C. diff while I was preparing for it throughout the months leading up to it. I am hoping that despite that, I performed well enough to pass. I find out the end of April. At least I finally figured out what was going on with my health and can get that under control, which I can tend to lose sight of when I'm caught up in school or work.



About 5 years ago I had a case that presented an interesting conflict of law issue between Connecticut law and Ohio law.   The issue involved which state's law regarding the marital communications privilege applied to the facts of a Connecticut civil case arising from a multiple motor vehicle accident involving a fatality.  After the accident, which occurred in Connecticut, my client had a conversation with his fiancee over lunch, which also occurred in Connecticut. My client discussed the accident with his fiancee, who then drove to Ohio. They were both later married in Ohio and resided there as a married couple as of the time the issue arose in the case.


When the other side attempted to depose my client's wife, who was living in Ohio, about the conversation she had with my client after the accident in Connecticut, I immediately filed a motion for protective order asserting both the Ohio and Connecticut marital communication privileges, as it was not clear to me which one applied (note that under Connecticut law the party spouse has standing to assert the privilege as to the deposition of the non-party spouse).  My research revealed that the marital communications privilege in Ohio is statutory, whereas in Connecticut it is rooted in the common law.  In both states the privilege may be asserted to prevent one spouse from being compelled to testify against another spouse in a civil proceeding.  The policy behind these laws is that allowing one spouse to be compelled to testify against another would tend to undermine the harmony of the marital relationship, in which things are said in confidence as they are to one's own attorney.


What is really odd about the Ohio marital communications privilege is that by statute it extends to all communications AFTER the marriage is consummated and even after the marriage ends in a divorce, but not BEFORE the marriage when a couple is engaged, as was the case here.  The Connecticut marital communications privilege does not have the same precise limitation, but the cases can be read as applying only to legally married persons and not common law spouses or fiancees.


The other side argued the privileges did not apply because they were not married when they had the conversation after the accident.  I argued that the intent of the Ohio and Connecticut marital communications privileges is to preserve the sanctity of the marriage and that purpose would be defeated if it was not applied to a couple who, although only engaged, in fact did later get married (within a month after the conversation happened, if I recall correctly) and remained married as of the time that this motion was argued.


I won that argument, the motion for protective order was granted, my client's wife was never deposed (which was a huge victory for the defense), and I made some law here in Connecticut.  In its decision, the Court never said whether it was applying the Connecticut or Ohio privilege, but it didn't matter because I had argued both states' privileges should produce the same result.  I don't know if this issue has ever been litigated in Ohio with respect to an engaged couple, but I would be interested to know.


You should get yourself elected to the Ohio legislature and then amend that statute to include premarital communications between people who later do get married and are married when the issue arises.  Otherwise that Ohio statute does not make any sense in these situations.



Last edited by CTBarrister


Please read this about an innovative fecal transplant treatment and a specific patient.  The hospital Mary Greeley Medical Center is in Ames, Iowa.  Ames is the home of the Iowa State University's basketball team that won the big 12 Conference title to be shot down in the first round of the NCAA tournament - buy 1 stinking point.  Guess where my children and I graduated from?  This hospital is not affiliated with ISU but thought just in case you were a basketball fan and the city of Ames rang a bell in your mind.


The reason I am posting this is the GI's here have fecal transplants available without the need of finding your own donors.  Finding a donor and testing of that donor's fecal matter is an expensive part in the process.  They have identified a healthy person who regularly donates fecal material.  The material goes through a clarifying process involving liquefying and straining. The result is a thin, brownish liquid loaded with healthy bacteria.  The material is then frozen, providing Mary Greeley a readily available supply.  This innovate approach saves time, which means a lot for someone dealing with the debilitating pain of C.diff.  It's also cost-effective because testing doesn't have to be done with each fecal transplant procedure.  The transplant can be done via an enema or during a colonsocopy.  Or in our case, a pouchoscopy.


If I ever get c.diff again I am going to the Mary Greeley GI's and by-passing the Mayo Clinic.  Sometimes smaller groups are better. I don't know maybe CC is doing this too.  I thought you'd appreciate it since it might be done outside of your insurance coverage and lower costs should translate to lower bills to the patient.

Wow, that's really interesting. Good for Mary Greeley for thinking outside the box in the interests of both their patients health and finances. Unfortunately, I was told that the CC requires you to supply your own donor and they have to go through extensive testing. The procedure itself is relatively quick so it seems like the majority of the cost is on screening and testing the donor, which Mary Greeley has found a way around. I am bringing my dad, who is pretty healthy and has never had a GI issue in his life (unlike most of my relatives on my mom's side, including my mom). I am looking forward to hearing what they tell me at my appointment. I realize that I have not exhausted all potential options at this point, but if this is such a relatively easy procedure with such a high success rate, I'd rather forego future rounds of antibiotics. I've been on the vanco for a week now and I don't really feel any better. I may at times, but then I will get the pain/nausea/chills back. I'm just looking forward to not having this consuming my life any more.

Sorry if I gave the impression that you should do antibiotics before a fecal transplant. I was just afraid your insurance company would require you to do the antibiotics route because of the cost of the screening and procedure involved.  That's why I posted this link.  Just in case the CC cost is too high.  Coming to Iowa would have expenses that probably would make CC costs the way to go.  I wouldn't wish this nasty infection on anyone and I had it for over 8 months and 4-5 rounds of antibiotics.  You shouldn't have to go through what I did.  You need to get on with your life and career 



Also, apart from the issue of whether your insurance company will require you to exhaust antibiotic therapy, I have not heard of some of the antibiotics you have been on, and it's not clear if you have ever been treated with levacquin or augmentin or xifaxin.  My ex Cleveland Clinic-trained J pouch specialist is not so impressed with fecal transplants- he told me "it's nothing but a strong probiotic, and a very expensive one, and if other probiotics have not worked, it could be a colossal waste of time and money."

Last edited by CTBarrister

I have only been treated with flagyl and vancomycin. That's interesting about your doctors take on the treatment. Reading the news stories about the high reported success rates for the treatment got me excited about it, but I should also keep in mind that the news has a tendency to sensationalize stories like this. They claim the procedure has a success rate of 90%, but that could mislead patients and dissuade them from antibiotic treatments. My appointment is just for a consultation so I just want to explore all of my options. I wouldn't be surprised if Dr. Shen has me try some of those other antibiotics before he approves the procedure. I would like to hear his take on the success of the procedure. Aside from insurance concerns, it seems like if it is so effective a patient should be able to get it when a few of the possible antibiotics have failed them. This is my 5th round of antibiotics in probably the last 5 months and I am just sick of taking so many, although this is mostly because I was being treated for pouchitis when I likely had C. diff this whole time (I started noticing some of the tell tale symptoms as early as July).



My ex J Pouch specialist (who was mentored by Dr. Shen at Cleveland Clinic) told me he thought fecal transplants would be a waste of time, but I had tried VSL#3 DS, Culturelle, Align, and other probiotics cold turkey after going off antibiotics and none came close to working.  Antibiotics work well for me to keep the pouchitis in a low level "simmering" state (according to my Doc who described it as "simmering").  I have seen many posters on this board who reject as implausible the idea of being on antibiotics permanently.  I am here to tell you as living proof it's doable and I have done it for 20 plus years with some minor side effects here and there.  Rotating antibiotics is of PARAMOUNT importance which is why dabbling with a couple and giving up is not the way to go IMHO.  The only antibiotic you have used that is effective in treating pouchitis is flagyl.  Cipro is a superior antibiotic and broader spectrum but they can be taken together as they are in different antibiotic families and work on different bacteria, giving you the broadest possible "shotgun" coverage.


But who knows maybe fecal transplant will work.  How did you respond to other probiotics?

I have always responded to cipro and flagyl to clear up pouchitis and have been taking Align as well. In terms of the C. diff, I have recently been taking VSL#3 and Florastor with my vanco and they seem to be helping. Here is a link about Ohio hospitals (including the Cleveland Clinic) doing the fecal transplant procedure, which suggests that the cost and effectiveness of the procedure can be preferable to continued rounds of antibiotics.


Here is another from the Mayo Clinic that claims the procedure is "Quick, inexpensive and a 90 percent cure rate."


Reading articles like these it's hard to not get excited about this procedure, although I am trying to not get my hopes unrealistically too high for a relatively new procedure. Still, that is a pretty bold claim for the Mayo Clinic to publish on its website and it seems like it wouldn't make such a claim unless it was seeing good results. It seems like doctors were more skeptical of this procedure in the past (and rightfully so), but as more and more hospitals and studies are reporting positive results, the medical community seems to be changing its tune.

Last edited by Kevin Q

Did I mention that I got c.diff from taking Cipro when I had my colon.  I can never take it again and don't think it is used to treat c.diff.  My GP called me and told me to not take another CIPRO and she'd called in a different kind of antibiotic. It was a big deal.  I wasn't taking Cipro for my UC or diverticulitis rather it was for a sinus infection....I think. That was many moons ago


C.diff is an entire different animal that pouchitis caused by other things. It is much worse and after all I've been though I contend it is the worst single thing that I've ever had to deal with. (Well the recovery from surgery #1 was worse.) I'm rotating antibiodics for pouchitis now.My current pouchitis is not like c.diff in my j-pouch was. I can tell the difference.


Thanks for the Mayo reference Kevin. My current GI is there and he tests for c.diff every time I go there but we haven't discussed it since 2012. It is wonderful that this treatment has evolved so quickly!  

Last edited by TE Marie

You know what's frustrating is that I've always been fine with flagyl and years ago when I first got pouchitis that's all my GI prescribed me, which worked. Then, years later when I got it again she added Cipro. I didn't question it, and just assumed that she wanted to make sure the antibiotics cleared it all up, but I was always kind of skeptical about why I needed extra antibiotics, as I would only get pouchitis every year or two and the flagyl always worked. From then on, it was always flagyl and Cipro for pouchitis. Plus, the Cipro gave me horrible tendon pain the last time I took it and I had to stop because apparently that can be a very serious side effect. 


I agree, dealing with C. diff has been the worst thing I've dealt with since getting my J-pouch 8 years ago, including dealing with 2 fistulas and pouchitis numerous times. Although pouchitis gave me flu like symptoms, the C. diff is so debilitating and completely wipes me out. Having just studied for the bar exam, this put me in a very tough position and made it very difficult to get through the day. It makes me so tired and generally uncomfortable (chills, feeling feverish). Also, always constantly worrying about keeping everything clean and sterile is driving me crazy.

Last edited by Kevin Q

There's a reply Jan Dollar wrote, on another current thread, explaining how Cipro differs from other antibiotics.  It's synthetic.  My GI took a stool sample during my first pouch scope. I'm glad he was smart enough to do that as some said we couldn't get c.diff in our j-pouches!! I don't know your doctor but she might have had a valid reason for prescribing it.  A lot of people that rotate antibiotics use Cipro. Sorry this is so frustrating. 



Those links you posted certainly leads one to conclude fecal transplants could be a very effective treatment for C.Diff.  My comments above about what my Doc told me were meant to discuss fecal transplants as a treatment for chronic refractory pouchitis.  I guess I got a little confused reading this thread.


Good luck with the treatment.  Hopefully you pass the bar exam, get through this and can get on with your career.

Last edited by CTBarrister

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