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Hi All,

I have a j-pouch that was diverted to a loop ileostomy per Drs. Shen and Remzi instruction 2 yrs ago. I have since done well but have been suffering on and off from c diff. Last Nov, I had severe c diff that didn't test positive for c diff but had the smell and the look of c diff. And my doctor insisted it was c diff and I responded to a 2 wk course of Vancomycin. Has that ever happened to any of you?

Now that the c diff is over, I have had recurrent bouts of diarrhea for a day or two at a time that never test positive for c diff. And now, for the last 6 days, it has been nonstop diarrhea and my dr says I have post c diff IBS and has only given me Imodium which does nothing for me. I've needed IV hydration due to the loss of fluids and I'm really in a bind. I have zero quality of life. Does anyone have any tips of how to handle post c diff IBS?

Also, has anyone had fecal transplant done for c diff with a j-pouch and ileostomy?

Thanks,
Tina
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Most definitely. I take VSL #3 - DS one in the am and one in the pm along with Florastor one in the am and one in the pm. I still keep having these IBS symptoms despite that. The only things that sometimes seem to help are eating tapioca and bananas along with taking L-glutamine supplements. But that's all I can eat at this stage..

Anyone else have thoughts?
Some people just simply do not tolerate probiotics, and VSL#3 in particular. You might want to cut way back on the VSL#3 and see if things improve. You can gradually increase the dose later.

Another thought: have you been tested for CMV (cytomegalovirus)? Lots of antibiotic treatment can leave you with susceptibility to viral infections. Fungal infections too, but I would think that they would have ruled that out.
http://www.ncbi.nlm.nih.gov/pubmed/24298304

Jan Smiler
Last thing I was diagnosed with but actually said not specifically came up from blood work. think it was more location of where I was having problem that I was told that. best I can remember. given canasa/pelvic floor rehab. which didn't work. I have never heard the meds. listed here but it has been 4yrs. Had this problem before bowel obstruction/pouch prolapse/surgery/suffered before that. did better for really short time after surgery. that is why I went to see doctor again/different doctor four yrs. ago. I have problems emptying at times and when I use the meds. helps give me relief for short period of time then back to square one. sorry post is so choppy but frustrated/exhausted/ready to quit trying to find answers/let nature take its course. seeing a counselor for chronic illness. just started back again. like I told her it would be easier than stressing out trying to get better/reading/reading/finding a good doctor. I actually hugged this doctor b/c I thought he had found the answer after being told by shrug of shoulders/surgeon that did last surgery/don't know why. Needless to say how disappointed I was to find out I STILL DID NOT HAVE AN ANSWER!!!! guess this post should of gone under rant/rave but cdiff. is what was last diagnosed. At least I am posting w/ people that understand more than people without having their colon taken out. more than having extra bowel movements. trust me I know their are people out there w/worst problems b/c I have an I do daughter that was paralyzed right before her 15th b/day and she is 31 now. More to her situation than not being able to walk.....
I also had c- diff that cleared up after 2 rounds of antibiotics. But there have also been times where I would get the same c-diff like stools and severe diarrhea and I have always tested negative. I almost wish I would test positive then I could be a candidate for fecal transplant. Maybe that is something you need to look into. In the meantime Florestor is the probiotic to take to keep c- diff away. Have they checked you for pouchitis? Ps I've needed iv hydration many times.
I had a fecal transplant on March 25, 2014, but have suffered from IBS since. It all started with taking antibiotics for a strep throat back in November. I spent three days in the hospital the first of December, and diagnosed with c-diff. I was treated with Vancomycin, and after ending the 10 day course of meds, the c-diff returned within 5 days. The third time I was diagnosed with C-diff, I was given another 10 day course of the Vancomycin, and within 3 days of finishing that course, the c-diff returned (probably never left). I was then given a 30-day course of Vancomycin with gradual tapering off. During that time, I was referred to Dr. Barry Schneider here in Charlotte NC, who is participating in a fecal transplant study under the purview of the FDA. Dr. Schneider recommended that I have the fecal transplant since I had 4 episodes of c-diff, and most likely would continue to suffer from it. There are strict protocols for the donor (in my case, my husband) who had to have blood and stool lab work performed. Thank goodness my insurance paid for all of that. Then on the day of the transplant, my donor had to provide a "fresh" stool within a two-hour window of my colonoscopy/transplant. My husband was able to hit the mark (but really, how many people can poop on demand Smiler Within 36 hours, the diarrhea returned with a vengeance, and I started taking Imodium. One week after the transplant, I provided a stool sample to be tested for c-diff, but the test was negative for c-diff. After a couple of days of Imodium, I stay off for a few days until the diarrhea returns. I will be visiting Dr. Schneider in 10 days and am anxious to hear what he says about the IBS. Right now, I am thinking the cure may be as bad as the disease? Meanwhile, the Imodium is making it possible for me to feel comfortable about leaving the house. Here is a link about Dr. Schneider that our local newspaper printed last summer about his fecal transplant study. It definitely sounds icky, but if you suffer from c-diff, you are willing to try just about anything to get rid of it. I will follow up with Dr. Schneider's thoughts after my visit with him. http://www.charlotteobserver.c...al.html#.U1LEJ6bQfEY
Hi, thanks for sharing your experience. So I have been seeing the FMT expert at Weill Cornell. His name is Dr. Carl Crawford. Instead of FMT, he asked me to first try VSL3 DS in a rectal enema twice a day, which had fantastic results for slowing things down and thickening the stool. He then added Enteragam, which is a bovine immunoglobulin basically made from colostrum. He said this is used in IBS and has great results in aiding absorption and reducing diarrhea. I think you should talk to your doctors about trying these for your IBS. See if it helps you.
I had c.diff along with cuffitis and got over the c.diff after multiple rounds of Flagyl.

I have chronic cuffitis and IPS. This is diagnosed by my Mayo Clinic GI. I think they call it IPS but it is IBS, I had IBS with my UC. The treatment plan for IPS is Loperamide, prescription Imodium, up to 8 per day and when things get bad I take Augmentin. The reason I take Augmentin is I can't take Cipro as I got c.diff from it when I had my colon. I don't take Flagyl unless I have to as I have neuropathy in my feet and it can cause neruopathy. So your doctor might want to prescribe something else. IPS acts like pouchitis except there is no inflammation in the pouch, therefore there is the frequent BM's, pain etc. It sounds to me like your doctor is on the right by treating it with Imodium. I would ask for a prescription for Loperamide and take it as it slows down your system and therefore reduces the pain and allows your intestines more time to process your food. I hate taking antibiotics but they work. I end up taking them every few months. He gave me a prescription with many refills and I take it as needed.

Dr. Shen, et all, has a paper on the internet about IPS treatment with antibiotics.

I also take Saccharamyces Boulardii for c.diff prevention and have not had it since I started it. Florastor is the same thing I think.

I also use an electrolyte replacement tab/drink called NUUN. I order it directly from them on-line. A bicyclist on here told us about it. It comes in tablets that you put in water. It is a milder flavor than gatorade and has really helped me with hydration! I was in the hospital 16 days after my 1st of 2 j-pouch surgeries because I had dehydration problems, so I really feel for you.

I hope you get to feeling better soon. Smiler
temarie how do you know its ips and not sibo come to think of it..reading the threads wondering how one tells the difference except for bacteria test..dr.shen called my problem to be sibo but wondering why he eliminated ips?and ultimately does it matter?seem to treat same way and i would think diet change would help both since for example scd is recommended for ibs..
Rebe0505 I know it is IPS because I was tested at the Mayo clinic and my IBD GI specialist Dr. Edward Loftus Jr. diagnosed me as having IPS.

Dr. Shen et al has a paper, on the internet about treating IPS with antibiotics.

Rebe05, I know you meant well but I am tired of people telling me the last 18 years that all I need to do is change my diet. You don't know me, you don't know my diet. You don't know how many diets I have been on to try and "cure" UC or j-pouch problems. You don't know how many treatments, what medications I've been on or what tests I have had since I've had my j-pouch.

I was referred to the Mayo clinic by my local GI as he found my case too difficult for him to manage as a generalist. I'm going to follow the plan the expert, I am under the care of, as I am feeling 200% better. I also have chronic cuffitis that is under control through my doctor's treatment plan.

I suggest you (design00ps) discuss the possibility of IPS with your doctor or if possible with Dr. Shen, your doctor at CC.
Last edited by TE Marie
I don't really have any IPS or IBS issues anymore since I started using the VSL3-DS rectally (instead of orally) and taking the Enteragam orally. Theyre both completely natural solutions and allows for better absorption of nutrients, expansion of diet and MUCH less diarrhea. It is like night and day. I would suggest all you guys with such issues try those out before massive long-term doses of antibiotics.
soory marie you misunderstood my thread i was not implying diet was answer for you .. discussion made me actually question how one thing is distinguished from the other and than the thought popped up that maybe either diagnosis could try diet..and on this site we are all just trying to help each other i think ..no one here implies that they have the answer to anyones problems just sharing information ..sorry if i appeared to be the straw that broke the camels back for you on diet issue..i know the diet is hardly the end all for most of us but its just something else to try besides the drugs..i know how frustrating it is ..been there and still am!!! but i am always hopeful i found some answers and my intentions are always to share and help others because i know what its like for us all..
I'm sorry too Rebecca. I took what you said the wrong way and personally. My bad.

I just went back on Flagyl after being on Augmentin, to treat IPS for almost a week and it not helping, I realized I probably have c.diff back. It's been a while since I've had it and I can't be tested you have to be off of antibiotics for 14 days to test.

I am just miserable and tired of all of this after almost 3.5 years of having my j-pouch. (Yes everyone, I know I can go to an ostomy - I'm not going there yet as I have come a long way.)It would be nice to have a week or month off, lol.

After I am done with this Flagyl I am definitely going to try the VSL#3 enema along with ingesting it.

The best to everyone Smiler
design00ps, would you be willing to provide some details on the VSL enema? I'm wondering *exactly* how it's prepared and administered, and how long you're supposed to retain it.

It seems very inefficient for J-pouchers to get our intestinal probiotics orally - the acid in the stomach kills most of the bacteria. The entire pouch is extremely accessible compared with a colon. OTOH, enemas aren't all that much fun, either...
My GI doc initially suggested trying to mix the vsl3 DS in water to make a thick paste and using syringe (without the needle) to insert into the bottom. Since I take other enemas morning and night, he asked me to mix the VSL in with those, which works well. If water isn't thick enough for you to retain, you can work with a compounding pharmacy to use methylcellulose or poloxamer gel to thicken the enema.
I know this is off the subject of VSL#3 but I am going to quote off of the label of my Saccharomyces Boulardii+MOS (s.boulardii). I take it as c.diff prevention:

"..contains a probiotic yeast that survives passage through stomach acid and delivers its benefits to the intestinal tract."

My question is how do we know that VSL#3DS is partially or totally killed off in stomach acid and on the way to the intestinal tract to the j-pouch?

I've never heard anything about this before this thread, which doesn't mean it isn't true. I've been to a conference with specialists discussing the benefits of VSL#3, read papers etc. VSL #3DS has 900 Billion bacteria so I'm unclear as to why it needs to be applied via an enema now. I know it is working for design00s but think we should all discuss this with our doctors before trying this by ourselves like she suggests.

P.S. I'm not taking VSL#3DS while on Flagyl for c.diff.

Thanks Smiler
VSL #3 is not totally killed in the stomach. If it were it could not be effective. Nevertheless the stomach is a very harsh, acidic environment that is quite rough on many types of bacteria; there are plenty of "casualties" there (probably fewer if you're taking an acid reducer like Zantac or Prilosec). Survival of lactobacillus species in stomach-like environments has been studied in the lab - species and strains vary (some do quite well), but so does individual acidity and digestion times in our bodies.

In any case, direct application of VSL #3 in an enema is interesting and promising, but not well studied. The dose of live bacteria would be higher, but maybe the survivors of a thrill ride through the stomach and small intestine are better equipped to set up shop in our our J-pouches.

I agree with TE Marie's suggestion that this is best considered in consultation with your doctor. Folks who are paying full retail for VSL will tend to be more motivated to explore boosting the dose in this fashion.
Folks, I'm not even remotely suggesting trying any kind of enema or medication without speaking to your doctors first so I'm not sure where you're getting that from. I'm merely putting this out there because my doctor prescribed it for me and it worked. I'm trying to pass on my experience so I can help others.

There is a reason why all sorts of enemas and suppositories are prescribed in the first place. Many times meds taken orally don't make their way down to the bottom and it is more effective to apply directly to the area of disease. This has been the case for me whether or not it is relevant for everyone I cannot say.
Thanks, design00ps. I never thought you were suggesting self-medicating. I asked for details because most of our doctors wouldn't have a clue where to start, but they might be game (in selected circumstances) if they have some sort of baseline to work from. Marie was concerned (I think) that folks might misunderstand, and I was just agreeing with that caution.
Fair enough. I only see the finest doctors at NY Presbyterian and Cleveland Clinic and they've suggested this and managed the compounding of the enemas, etc., with my pharmacist. And honestly, it has been miraculous for me and allowed me to avoid fecal microbiota transplant. I would never ever suggest to anyone to try this at home without speaking to a very qualified doctor.
At this point I need a miracle. My last visit to Mayo we were talking about a surgical consult. That was a year ago. It's my fault I haven't contacted my doctor as I thought I was handling things pretty well during the year. I'm down as I have c.diff again. Thanks for everything. I'm going to print this thread out and take it with for my annual appointment.

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