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I wrote a long blog post about this (see my signature for link). People with FAP rarely get pouchitis. I was told all year long that my issues MUST have been pouchitis and the surgeon that kept scoping me said I had NO pouchitis. So I finally had Shen scope me at Cleveland Clinic and he said not only did I not have pouchitis I NEVER had it. What I did and do have is C.diff. From being on non stop rotation of Omniceff and Cipro I had C.diff.

I had no clue that antibiotics would make my life worse. I had no idea what C.diff even was. So if you ever have a lot of symptoms of gas, runny stool, pain (my pouch felt like a bowling ball was inside me) and other pouchitis/blockage symptoms. Make sure doctors test for C.diff. Sad a whole year went by and I just got worse to the point I almost booked surgery to remove my pouch.
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I hear ya, Vanessa! C. diff is my number one concern with Cipro and have said many, many times here, that was why I preferred Flagyl as my go-to antibiotic, even though it gives me a funny taste. If it didn't work, that would be another story. Plus, it is waaaaay cheaper than Cipro (but that is a lesser concern). I'm not even sure about Xifaxan, even though it is not systemic, it is the gut flora I am concerned about. But, I think I remember it was OK. But tLk about spendy!

Jan Smiler
The annoying part is everyone said "Oh you have no colon, that isn't really going to be possible". Shen said differently at CC. He has seen C.diff form in just the valve or a cuff.

I just had an upper scope since I have to monitor my disease and I informed the HEAD of Gastro at Georgetown I had C.diff. He said that is really uncommon and brushed it off. Then he asked why I went all the way to Cleveland Clinic. I wanted to answer with, "I called you 5 damn times and nobody helped me with my issues". I had the worst scope experience even though I am clear of polyps.

Then he told me I need to take Zantac for my gastritis issues but I was told antacids were just as bad as taking antibiotics when you have had or have C.diff.

Doctors frustrate me.
well i hope shen gave you the antibiotic they use to rid of c-diff and told you to test about a month later..i had a case of c-diff when i had colitus and a few with pouch..each time with pouch i got appropriate drug and it was resolved..i am surprised and so happy your story has a good end because unattended c-diff can be life threatening..when caught earlier it is easily remedied so no need for anyone to be terrified of it..whenever i have unusual occurrance shen says test for c-diff..its easy enough to do with my local dr.but shen does recommend a certain type test he says is more accurate..un fortunely i do not remember its name..i just ask him..

as a perventative for cdiff since i had a few bouts of it i take two recommended things ..saccharomyces boulardi and culturelle (lactosbasillas gg) i have not had any reoccurrance in over three years since i have been on them..and its my understanding once you have had it you are more suceptible in future..however,as i said i am not fearful of it now..
Yes once you have it you can get it easily. I can't take certain antibiotics or antacids anymore. I got Florastar since that has Saccharomyces Boulardi in it but probiotics don't agree with me. My guts are weird, once I put probiotics in my pouch just can't take it. I try over and over.

I just retested yesterday after being on Vanco for 2 weeks. I still have a lot of the symptoms so we shall see. I am not scared of it being life threatening I just can't stand the pain and everything else associated with it.

The C.diff test is PCR testing.
They are going to start doing fecal transplants soonish where I work (its coming, we're not quite there). Sounds gross, but honestly, if my treatment was months of abx therapy or a stool sample from my healthy husband, done up in the lab and given to me to cure C Diff, I'm going transplant. It has a 90%+ cure rate, 3x better than abx. They think the indiscriminate abx I got in the 70's for "strep throat" every time I had a sore throat was a possible trigger for my ulcerative colitis (though it'll never be proven). I prefer to stay off abx unless absolutely necessary.
I am a huge advocate of fecal transplants for C Dif. If I had C Dif, that's the first thing I would try for sure. Although I have no personal experience with them, I have read impressive things about transplants, have heard about successes anecdotally, and believe that they make pretty darn good sense. Something to consider. . . .

Good luck!
Unfortunately I think most insurance companies would call fecal transplants experimental or at least want less expensive things tried first. I don't think it is as simple as inserting someone else's excrement in your pouch. I have no idea where I read this but I thought they had to test the donor's poop first. It sounds like you know more than I do Vanessa. Is it this simple?
My c.diff is back. I know. I have blood coming out, extreme valve pain and super spasmatic pouch with gas. All the symptoms I had before. Flagyl and Vanco are now not working. I asked my husband to poop in a cup. I am desperate and just really at the end of my rope with the pain and symptoms.

Feel like doctors just don't do enough lately for me. Hate that feeling.

I am very sad to hear that you have C-Dif again. Sounds like you are on the right track by pursuing fecal transplant. I have heard practically miraculous things about that method, including from people who have actually done it. I've also heard that it might take some research to find someone in your area willing to do the transplant (or implant, as my GI likes to call it). Perhaps you could do a shout-out on this site to see if anyone knows a good doc willing to do the procedure?

I hope things clear up for you soon. You make such an effort to be helpful to others and I wish I had something useful to share with you.

Please keep us posted on your progress. Hang in there.
Well I am hesitant to comment because I don't want to jinx my good luck but I have been off Cipro since June 14.
I was having a horrible flare while on vacation & while taking 2 x 500mg cipro. I started flagyl for 3 weeks. I stopped the cipro and started Florester & VSL #3ds 2xdaily and pepto bismol pills 3x a day.
I has some trouble adjusting to adding benefiber or psyllium so I gave up on that.
I try not to eat anything heavy after 6 or 7pm.
I honestly feel I'm not any worse than I was on Cipro in fact I think I'm better. I still have lots of gas rumble pain & noises but not urgency. I'm cutting back on sugar too. My doctor doesn't believe you can get cdiff in a pouch but I think that is what has plagued me for 2 plus years!
Cross your fingers for me.
Lori B.
You can get c.diff in your j-pouch as I've tested positive for it in mine.

I'm thinking maybe you had/have pouchitis instead. Cipro was an antibiotic that helped cause c.diff when I still had my colon. They do not give you Cipro to treat c.diff. They treat it with Flagyl or vanco.

Pouchitis and c.diff can have similar symptoms. It just depends on how long you have had them. I've thought I had c.diff back and it's been pouchitis.
TE Marie I'm curious why you don't think I had cdiff. I haven't been on Flagyl for many years. I was taking cipro 2x daily for 2 plus years feeling all the symptoms and pain involved in a flare of pouchitis during my treatment. I was depressed I was ready to do anything including surgery to rid myself of the misery I was in and then I take Flagyl(one of the 2 drugs used to treat cdcdiff) and I'm better. Why would I still have symptoms while on Cipro? I will have trouble talking to my doctor about this and if you are skeptical, I have no chance
Last edited by LoriB

I'm sorry I must be confused.

If you are taking cipro you can have c.diff. I don't take cipro anymore because it has caused c.diff in me before.

If you took flagyl it probably cleared up c.diff, if that is what you had. I had to take a couple of rounds to clear up an occurrence of c.diff I had with my pouch.

I've been confused as to if I have c.diff or pouchitis so my Internist has put me on flagyl pending results of a c.diff test results and I didn't have c.diff. Flagyl is good for both. That is why I say they have similar symptoms - at least for me in the beginning.

I have tested positive for c.diff with my j-pouch and was treated with flagyl. There are many others with j-pouches that have had c.diff. One j-poucher had to have a fecal transplant and it worked.

I misunderstood what you were saying - my bad!

Tell your doctor you can have c.diff. The problem is you have to be off of antibiotics for 2 weeks before you have c.diff test or you can get a false negative. If your doctor wants to test you please don't take a test if you have not been off of antibiotics for 2 weeks. That is where the catch 22 is and why you are safe with flagyl and just to forget about ever taking cipro again.
Hi there, just been diagnosed with c,diff after being off cipro for 4 weeks, TE Marie as just made me think I was tested before for c.diff whilst i was on cipro, thats why it came back negative. my doc should have realised that you should'nt be tested while on cipro, as soon as i come off it... C.diff was positive. The symptoms are so simular to pouchitis, it seems so easy for the med;s to say pouchitis, we all should be very weary of cipro, its brill whilst we take it, its the side effects it causes.
I've been off cipro
4 months now. I took a course of flagyl and dr always had me continue cipro during the course of Flagyl. I didn't and remained off since then.I had one bout of pouchitis & took Flagyl again but I feel so much better being off the cipro! It's working for me. I'm not saying life is perfect I have pain with gas and the passage of stuff thru me but I feel better than when I took cipro.
Hi Robert,
Dang it, you have c.diff Mad I hope they know to never give you Cipro again as it is probably what caused the c.diff. I don't know how but it is what caused it in me once when I still had my colon so I have to avoid it and don't like taking antibiotics at all. Are you taking Flagyl or Vancomiacin to kill your c.diff? It is so much like everything else it is hard to tell. Plus, without a test or a scope you treat for pouchitis and it with Flagyl and can get rid of it, hopefully, without knowing what you had. It does get worse the longer you do not treat it. You are contagious and this is why I am OCD about washing my hands. You can give it back to yourself as it is a spore based bad bug that can live something like a year on a surface!

People also think I'm OCD on this too. Dr. Oz has also said this on his show as well. Everyone PLEASE close the lids on toilets before flushing them. The spray from the flushing can spread up to 6 feet which can spread the c.diff and any other bad stuff on your bathroom vanity, toothbrushes etc. You can infect others this way. I hate it that I can't close the lid in public restrooms. This is one that restaurant workers spread by not washing their hands well enough.

This doesn't mean that everyone coming across c.diff spores gets c.diff infections. It depends on the state of each person's immune system. It seems as mine hasn't/isn't the greatest, no stretch there. People can die from it and if in the hospital they isolate you like you have MRSA. It's caught a lot in the hospital too.

I've been taking Saccharomyces Boulardii+MOS by Jarrow Formulas probiotic to specifically combat c.diff for at least 6 months now and have not had a recurrence. I don't know if it's because of it or because I'm just doing better. I'm going to keep taking it. This probiotic is not expensive and I refrigerate it as soon as I get it. Refrigeration is not necessary but it says on the bottle that it can extend the life. That's my OCD again.

Sorry for writing so much. I'd like for you to benefit from what I've learned the hard way. I hope you are feeling better soon!
Hi T E Marie, Thanks for your advice, ive just been priscribed Vanamiacin 1x4 times a day for 4 weeks, lets hope this clears it up, I feel a lot better already. I think iam becoming ocd with washing my hands etc: I just wonder how long i have had it, Was treated for over 6 years with pouchitis on different antibiotics, cipro was always the best, but we dont realise the harm they do , do we until it hits us. The symptons are so simular to each other.Iam going to try Saccharomyces Boulardii when ive completed my course for c.diff.
You may not be able to climb the Tower, but we can always jump off it. ha ha xx
I have been tested 2 times since I had it in March I think it was and I am negative and good. I am not OCD, I don't do anything different. In the beginning I was insane but now I don't ever think about it and I am fine. I also don't use the probiotic anymore, I did it for a month but it upsets my guts to much. Vanco cleared me up and no worries so don't stress about it Robert.

Bleach is the only thing that kills the spoors so when I clean the bathroom weekly I wipe everything down with a clorox wipe.
That's good you don't need probiotics vannesavy. I'm still taking the one to prevent c.diff and I have not had a recurrence and it doesn't cause gas. It's not expensive like VSL#3. You have a K or BCIR pouch vs and j-pouch and we are all different. I also take VSL#3DS and don't get pouchitis but I do have IPS.

There are other types of germs in fecal matter that can be spread when flushing the toilet and it's just common sense to close the lid when flushing. That's what I believe lids were designed for, closing. Otherwise why have a lid at all? PLUS it is an excellent way to get the men and boys to put down the seat Wink My husband saw that bit on TV and I've not encountered that problem sense, lol.

It's amazing us older folks ever lived to be as old as we are. When I was born there were no seat belts in cars or car seats. I remember taking the polio vaccine when I was very young and how relieved my parents were that it had been invented! I had measles and mumps as well as chicken pox. Plus we had to have smallpox vaccinations. My grandparents had an out house, forget about flushing there, but the tooth brushes were inside the housed. No one had 2 bathrooms and the ones we had were small. The toilets were right next to the bathroom sinks were the toothbrush holders were.

So here I am 50 years later worrying about my grandsons because they don't close the lid on the toilet when they flush, I don't want their toothbrushes to get fecal matter on them.
Oh I have known for years fecal stuff spreads. my friend's mom was head of a health study that tested all cut lemons at restaurants and all of them always came back positive. I have never ordered lemon again and always say to hold it since she would tell us stories.

Years ago on some daytime news show they had a device you use to wash your toothbrush before use to clean them and the lid protected them from toilet flushes. I guess I just say at age 37, I am still alive so I can't live that OCD. I have too many other things going on to get crazy over that stuff. I also keep my toothbrushes in a medicine cabinet anyway to reduce over all clutter.

I don't think what type of pouch I have makes a different with C.diff. Only thing I don't have is a rectum. All of these pouches are made with the small intestine.
Hi Vanessavy, On my second week now taking Vancamicin, seem to be ok, did it give you the runs ? it has me,I put it down to clearing me out. shall be glad to get off all antibiotics, people say that this is the strongest one of them all, which is a bit of a worry, I can honestly say that i wish i had never gone along with pouch, I have had for over six years now, and apart from the first year i have had pouchitis or C.diff.When i had my colostomy bag it was the best Ide been for years. Was cosidering having the pouch removed until i was diagnosed with c,diff, now it frightens me about having the operation incase of infection in hospital. Who knows what is round the corner ??

We may not be able to climb the tower, but we can always jump off it. ha ah
Thanks Scott,

I called my GI Nutrionist doctor and am scheduled for a Lactose Intolerance Test and I also said I want to be checked out for C.diff.

I looked on line though and I am not sure it is c.diff. My problem is severe gas that starts in the afternoo and lasts until later in the evening. By the time I go to bed, then its not so bed so I can have a decent night sleep.


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