3rd C.Diff Medication ?

I just entered a clinical trial for fecal transplant since the GI that holds the FDA protocal is booked til OCt so his nurse suggested that. I am waiting for this test to come back positive then I will be on Dificid. Flagyl does nothing for me and Vanco works slightly.

I thought this was already approved. Hopefully it works well for you with little to no nasty side effects

Please let us know how you are doing.

I di not have any luck with Flagyl. Bad side effects. Vanco pills were bad too. Rifraxin did nothing. Did not try difficid but heard it is very similar to vanco only costs about $2000 for a treatment. I'm trying liquid vanco now. Side effects are less than pill but not sure how well it's working. Wanting to get to the cleveland clinic to see what they say as I've learned I'm in a pretty small minority to get c.diff

Tim, do they have a CC there? Have you tried Mayo's in Arizona? Just asked as I go to the one in Rochester. I hate the Flagyl side effects and think I'm ok now but never really sure if I'm clear of c.diff. The symptoms are so much like my chronic cuffitis.

I hope the liquid Vanco works for you. I was hoping the Dificid was going to be less expensive and more effective. That's really wishful thinking.

Well my C.diff is clear as far as this last test went and I swore I had it. All the same symptoms. I was on Flaglyl when I was tested so maybe it cleared it up and I am good to go but still feel like hell.

I don't know but I did cupping and accupuncture yesterday and today I wore high heels with no pain and ate out 2 times. Who the hell knows what is up with my guts...damn mystery. Maybe if I talk about getting an ileostomy more often my guts will get in order lol

Anyway, I have the info for the clinical trial for c.diff if anyone is interested in it (Bronx, NY at Einstein University). Only GI that has the FDA protocol. They require you have had it 3 separate times to enter it, otherwise you have to book a regular appointment and the next avail is in October.

Yes, I know the Doctor. Dr Lawrence Brandt. I have a friend who is working on a long-term solution for c.diff. Too long for me though!

I personally would hold off on getting an ileostomy. Especially if they say your J-Pouch is good. I had an Ileostomy for a while and was told is was not a big deal. Reality: It was a VERY big deal for me. The acid burns were very painful and took forever to heal. Plus if you have a 'gurgley' gut the ostomy is very embarrassing in public as it produces uncontrolled farting that everyone can hear and you have no control over. Best to find the root cause. Taking a stab at it may present you with a whole new set of issues including unresolved problems that you had to begin with....just my humble opinion...Tim

Thanks Tim! I have been hearing this from a few people. Mainly since I have had so much removed nobody suggests more surgery. I have 60% of a stomach left and no colon or gallbladder. My guts are very hyper-active and gurgly. My pouch sounds like it is farting a lot. I don't have a jpouch I have a continent ileostomy.

vanessavy, I might have read it wrong but you need to be off of your antibiotics for 10-14 days before you take a c.diff stool test or you might get a false result. So you could still have it. Since you are feeling so much better I hope I miss read it and you are over it, FOREVER.

Tim - did you have a loop or an end ileo?

kathy

loop

There's usually a huge difference between a loop ileo and an end ileo. Most people have little or no problems with an end (permanent) ileo. Nothing is as perfect as a nice healthy, well-functioning colon. And even a lot of colons don't always behave.

kathy

My GI dr who fellowshipped at the CC said there are only 9 confirmed cases of people with J-Pouches getting c.diff. From what I've read the out come is pretty depressing. So far it doesn't seem like vanco is doing the job.

I wonder if I'm counted in those confirmed cases. Did my local GI or pathology lab have to report it somewhere when my stool sample was tested positive March 2012? He took the sample during my pouch scope. I was treated with Flagyl. It took several rounds. My GI's fellowship was at Mayo.

Tim, do you take probiotics specifically for c.diff prevention. I don't know if they work for sure or not but I take saccharomyces boulardii+mos 5 billion twice daily, brand Jarrow. There are other brands. I order it off of Amazon and refrigerate it after opening, not required. I'm going to get tested this week, just to make sure I don't currently have it. I've had it before concurrently with cuffitis and have a hard time figuring out if I have it without testing. I'm treating myself for cuffitis, which is hard for me to get rid of. I hope the above has helped.

Yes, c.diff gets reported to the health department as it is a communicable disease. Not sure if the specifics of having a J-Pouch do. I take s.boularrdi and l.reuteri daily and will take consistently after I get well. How long did it take you to get over the c.diff? I've now been treated 2 months with little progress.

I need to look into the other one you are taking. I also take VSL#3DS and that one isn't in it. Maybe your GI was talking about when he was in training how rare it was. I think maybe it's more common since it's increased in the general population plus they've switched to doing more double stapled procedures were we keep 1-2 cm of our rectal tissue at the stump. Did you have the double stapled procedure? I did.

I think I had it at least 4 months the first time but it only took 2 rounds of Flagyl to clear it up last spring. I had it a couple of other times last year and it took only one round of Flagyl each time. I'm getting tested again tomorrow. I get cuffitis bad and can't tell if I have c.diff with it or not. I prefer to get tested as I hate taking Flagyl. I have cuffitis or c.diff or both now. I have the cuffitis medication and it's not going away.

I've never taken Vanco for c.diff.

Have you ever had cuffitis? If so do you get it and c.diff at the same time too? This sucks, let me count the ways...............

Have they given you IV vanco yet? My father had to take it, or something like it, for MRSA and did it outpatient. He went to the hospital twice a day to get it via IV or Medicare wouldn't pay for it.

I hope something starts working for you sooner than later.

I heard opposite at CC ehile there. I was told it is common in patients with no colon. Sometimes it can just be found in a stoma and valve.


My guts are a liquid gassy mix of hell today. How C.diff feels but need to be tested in a few more weeks since i was on Flagyl and I just don't get why I am having so many issues since having c.diff.

yeah, I got c-dif after my takedown at the Cleveland Clinic

I'm surprised to hear there are only 9 confirmed cases of c.diff in people without colons. Just based on people visiting this forum alone, the numbers would seem to be a lot higher than that. Just from reading here, it seems to be not an uncommon post-surgical issue. Maybe the problem is that it presents differently in those with or without colons? Or perhaps, it's that the cases are not being reported properly to the CDC, if at all. Interesting.

Vanessa;
Was Dr Shen your main contact at CC for c.diff?

Marie;
I originally had an ileorectalinastimosis back in 1984. It bought me some time until the J-Pouch was perfected. I was one of the first ones. All of my rectum was removed. No I have never had cuffitis and didn't know about it until joining this site.

IV Vanco would not work for c.diff. Vanco is poorly absorbed and when taken in the gut it pretty much just stays in the gut which is where the problem is. Vanco works very well against c.diff. You have to get liquid vanco at a compound pharmacy and 2 weeks is about $200. You probably can shop around and get it cheaper where you are as my pharmacy tends to be pricy. My Infectious Disease Doctor put me on a tapering dose and will do pulse dosing when it gets towards the end. Basically stop for a while ten hit it hard as c.diff is a colonizing critter.

I think the "9 confirmed cases" has to be either outdated information, or the doc was talking only about his own practice. The reason I say this is because this "old" article (2008) by Dr. Shen noted 21 patients out of 115 (18.3%) were positive for C. diff infection. Of course, being infected does not mean you necessarily have pouchitis or even symptoms. What it means is that C. diff absolutely needs to be in the differential diagnosis if you do not respond to standard pouchitis treatment.
http://www.ncbi.nlm.nih.gov/pubmed/18467184

This data indicates it is not as rare as many doctors think. It was not that long ago, less than a decade, that the conventional wisdom was that C. diff could not colonize outside of the colon. Things are always evolving. What we "knew" to be a fact can later be shown to be completely false. What makes this even more of a challenge is the growing problem of vancomycin resistant strains. So, hearing about new antibiotics is good news. Also good news is the shift to trying find effective probiotics to keep C. diff in check, rather than trying to eliminate it.

Jan

P.S. After looking a little deeper I found a link to a recent pouchitis study showing more than 10% with C. diff at a pouchitis clinic:
http://www.ncbi.nlm.nih.gov/pubmed/23328770

Thanks for explaining about the liquid vanco Bill. I would hate to see anyone have to run to the hospital all the time like my dad did.

So is c.diff like a form of pouchitis Jan? I guess I should read your link before asking questions! Thanks for your research.

Sorry you might still have it vanessa. I'm kicking myself for not getting my test to the lab sooner. If it is c.diff I could already be on antibiotics. This weekend is my daughter-in-laws baby shower out of state and I have my heart set on going. I missed her wedding shower because I was in recuperating from my incisional hernia surgery 6 months after take down. I don't want to miss this one for their first child and probably our only grand daughter! I don't want to go contagious either. I am such a whiner

Hey Jan that was very helpful info. Do you know if the treatment for c.diff is any different for a j-pouch patient compared to a person with a colon. Is it any more difficult to get rid of? I seem to be having a tough time getting rid of it. I seem to have discovered my own test for c.diff. Turns out I wasn't the first person to use this indicator. The odor seems to be very unique and raunchy! Sure enough nurses can tell the same by the emitted odor.

Does Dr Shen specialize in c.diff? I know he does pouchitis. I am considering getting back to the CC as that is where I had my J-Pouch done nearly 30 years ago! I just have to think that their treatment protocols may be different than a standard practice of a GI or Infectious Disease Dr out here. In fact that 9 confirmed cases actually came from my GI who fellowshiped at the CC until 1998.

I have read that c.diff can rarely occur in the small bowel. It seems to me that it must be more difficult to get rid of if it's there. I think mine extends beyond the J-Pouch as my abdomen becomes sore in several areas - even on liquid vanco 250mg. I've been on it for a couple weeks and there has been some improvement...but still the same horrible smell!

The two important probiotics that I've heard that help are l.reuteri & s.boulardii. s.b lives far on down the digestive track and is a yeast.

Paulette, yes C. diff can be a form of pouchitis, but can colonize anywhere in the GI tract. Probably not the stomach though, because of the acid. As a matter of fact, chronic use of PPIs is a risk factor for C. diff, since lowering the acid levels makes the environment favorable to the bacteria.

Also, note that there are non-pathogenic strains of C. diff, and we are only concerned with those that make the toxins. Apparently, the strains that have developed that are resistant to fluoroquinolones (such as Cipro) tend to be more virulent, with more powerful toxins. That translates to more severe disease that is more difficult to treat.

Tim, I don't know if Dr. Shen specializes in C. diff, per se, but he runs the CC pouchitis clinic, so he probably sees more cases of any type of pouchitis. Plus, he gathers data for research. I believe the treatment is essentially the same, colon or not.

Part of the C. diff problem is that it is a spore former, making it capable of laying dormant for long periods, waiting for the ability to proliferate (like antibiotics changing the normal flora that keep it in check, low acid levels, or a suppressed immune system). So, recurrent and chronic cases are becoming more and more common. In those instances, learning how to keep it suppressed becomes the goal, not a cure.

I think this is something we all need to be vigilant about, not just those who have been diagnosed.

Here is a link to the CDC page on it:
http://www.cdc.gov/HAI/organis.../Cdiff_faqs_HCP.html

Jan

My abdomen is sore on the inside which I think is due to it working overtime to produce stools. Does that make sense Bill? I don't think the infection is up past my pouch. I started taking an antispasmodic again today, dicyclomine. I also had a few sharp pains yesterday. I don't remember having them before but nothing surprises me ANYMORE.

My local GI sent me to Mayo, 4 hours away, when he could not figure out how to make my cuffitis go away after 4 months of treatment. Can your GI send you or put a call into a GI that specializes in IBD to obtain more treatment information?

I almost asked my husband to take me to the hospital late last night until I realized I was more than mildly dehydrated. I thought I'd been keeping well hydrated. I drank 64 ozs of NUUN electrolyte/hydration water. I didn't gulp it but had it in an hour or so. Are you still having bad D?

I have a fever but the tylenol in my pain medication is holding it down. Are you running a fever too?

Oh great, I take a PPI for GERD. I tried to go off of it a year or so ago and couldn't. Cipro brought it on years ago when I had my colon.

Thanks Jan

Paulette, I would not be surprised if your abdominal pain is due to C. diff, since that is a symptom...

Perhaps there is a different treatment you can use for your GERD instead of chronic PPI use. It also puts you at risk for B-12 deficiency. I'd suggest an H-2 blocker, like cimetidine, but you've probably already tried those, and they lower the acid too (probably not as much though). Do you have hiatal hernia that you can treat?

It is a shame that treating one thing puts you at risk for something else. Way of the world I guess and you have to pick your poison...

Jan

I just emailed my doctor and nurse with all of my symptoms and am hoping she'll call in a prescription without waiting for the lab results. If it's not c.diff it has to be pouchitis or something and Flagyl is prescribed for pouchitis too. There are severe weather warnings and I'm in the basement or I'd call Mayo's today. I'm probably going to call my doctor's nurses there tomorrow too.

I have a hiatal hernia and have never tried an H-2 blocker. I just had an endoscopy and dilation around 6 months ago. I'll check them out with my doctors. I wanted to go off PPI's because I read something about them and j-pouches in the past. If there is something else that can get the job done I'm all for it. My B-12 is actually a few points over the top of the range as I take a supplement.

Thanks Jan

By the way it's Tim not Bill....no problem though. I would say your trip to the hospital should be avoided unless necessary. You'll end up in isolation. Don't get me wrong. If you need to be in the hospital then you need to be there but please do as much as you can to prevent an unwanted stay. My step-daughter works for food services and c.diff patients have to be treated with great precaution as it is the #2 cause for hospital acquired illness.

I have had to be hospitalized for dehydration which resulted in very low BP. I spent a night in ICU! Since then I take electro-mix all the time. You can buy it through AMAZON for about $6 / box. I drink it all the time.

Since I've been on liquid vanco my movements have decreased to about 15-20/day. Still have the bad odor which is indicative of c.dif. I've heard it's a long haul to get rid of this nasty bug. Months not weeks. I'm starting month 3!

Tim, maybe it is time for that new antibiotic fidaxomicin? Have they done testing to see if it is a resistant strain? Two months on the vancomycin and still with serious diarrhea does not sound good.

Rather than going all the way to CC, you could ask your doctor to consult with the CC pouchitis clinic, and Dr. Shen in particular. It does not seem like you'd need to see him in person, since you know what you have. But, I would think they would be happy to share their protocols. Just a thought....

Jan

Tim I sincerely apologize for calling you Bill!! I'm bad with names but when they are in black and white above your picture, dah!!!

I agree, avoid the hospital. I have NUUN tablets and treat our RO filtered water with them daily. Apparently I need to up the number of ounces I drink when I'm ill. I order from the company, they are tabs I just drop in H2O and they dissolve, think alka seltzer like. Real easy to carry around.

Jan, I've kinda been through the wringer with meds. I started out with flagyl and had horrible a horrible reaction. Then on to 125mg vanco for a week and terrible reactions to it as well. I took a break then onto rifraxin. Didn't do much. Something else which was worthless and cost me $75. Then finally liquid vanco 250mg every 6 hrs which is going on 3 weeks. I'm to see my infectious disease dr June 12. I do have side affects from the liquid vanco but it beats the alternative...R.I.P.

My concern is that he said I should start feeling improvement in about a week. My wife doesn't see much. But it's difficult because the side affects cancel out the little progress that may be there.

I am interested in going to the Clinic because I used to live in the area of NE Ohio and SWNY State. I'm going there to visit family and I thought it might be a wise use of a trip.

On dealing with dehydration Marie I've learned over the years and especially after living in Arizona that it's best to work on being well hydrated 24-7-365. It's the biggest challenge for us 'J-Pouchers'. When you recognize that your getting dehydrated it's too late and VERY difficult to get back to normal. That's on a good day. I find that the Electro-Mix is helpful to just drink all the time. You wouldn't believe but I order 40 cases at a time - all tax deductible : )

I hear you, Tim. It does not sound like you have a multitude of options, and I agree that a partial response is better than no response and worsening condition. Plus, it looks like the fidaxomicin has every bit as much, if not more likelihood of making you sick. I mentioned it because it seems to actually have a better profile in regard to reducing instances of recurrent infections (which they think is due to the spores activating after you finish with the vanco).
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3388030/

I think Dr. Shen also uses Tindamax (tinidazole) for C. diff infections. However, it is related to Flagyl, so you may not be able to tolerate it. Some who cannot take Flagyl seem OK with the Tindamax though.

I guess if you were wanting to take a trip to Ohio anyway, making a side trip to CC might be a highlight (sort of).

I wish I had something magical to tell you. Have you discussed the possibility of fecal transplant with your ID guy?

Jan

Actually I talked to my GI Dr about the transplant but that was before the FDA put a stop to it. Do you know the details of that? Was it just clinical trials that they stopped or can hospitals still perform the 'homemade' versions of it?

Interesting to hear about the other med

Tim if you make going to CC the primary reason for your trip you can write off many expenses of your trip as medical as well. Dr. Shen sounds like a great idea.

I felt so much relief when I went to Mayo as they really know about j-pouches and my next appointment and tests are June 19th and 20th. Hopefully I will be over this but if not I'm confident they will have a better plan. One of the nurses there talked to me about fecal transplants last year.

I drink my hydrating drink everyday but I needed more because I had a bad day with the big D. I was in the hospital 16 days after my first surgery because of dehydration and I never ever want that again.

Tim,

It appears the fecal transplants can still happen, but now that the FDA has been alerted to some concerns (unfounded, I believe, based on all the studies so far), every provider has to apply for an IND (investigational new drug) application in order to treat a disease. The application takes a month, and they can approve or deny at will. That could be enough to discourage many providers.
http://www.gastro.org/advocacy...iota-transplantation

Because of the above issues, there now seems to be a Do-It-Yourself movement going on, with some success. if you are not squeamish and are motivated, perhaps the way to go.
http://blogs.plos.org/publiche...-part-of-the-reason/

Hey Paulette,

In researching the fecal transplant, I found something interesting. In some studies, they have found that treatment of C. diff with the fecal transplant improved neurological disorders, Parkinson's in particular. Symptoms improved for some to become nil. This got me thinking, what if your peripheral neuropathy was related to gut dysbiosis (C. diff that has been chronic and simmering)? Maybe if you were to finally get the C. diff beaten down, your neuropathy might improve. I know your neurologist says it is not reversible...but what if??? See the link below. Scroll down to just before "History."
http://en.wikipedia.org/wiki/Fecal_bacteriotherapy

This is all very interesting stuff. I wonder if there will eventually be probiotics that mimic healthy bowel flora.

Jan

quote:

Vanessa;
Was Dr Shen your main contact at CC for c.diff?

Shen has runs the Pouch Clinic (not pouchitis clinic) at Cleveland Clinic so he does it all. He sees patients that have colons, no colons, pouches, etc. He is the "House" of GIs but don't always expect a quick solve. I saw him for a few months before getting the c.diff diagnoses. I didn't really think I had it. He sees it a lot and sometimes sees it form just in the valve of pouches like the kpouch or BCIR. You can not see my c.diff by scope or biopsy. I tested positive through Stool specimen/PCR.

My guts have been a mess ever since but the last 2 tests I tested negative. So I don't know if when I test it is to close to being off antibiotics that I test clear.

If you are on Vanco you will most likely not test positive and perhaps you have another issue like just colitis. That is what I was told in the ER last week. My stool was ran for anything and everything and came back normal and no high white blood cells.

I have also been diagnosed with a very spasmotic pouch and gut (I don't have a real stomach) with small bowel bacteria overgrowth. I swore my c.diff was around because of the smell. My stoma covers smell like rotting fish and I can blow out bathrooms when normally I have ZERO smell in my stool. C.diff also has a certain look to it I was told, slimey/green coating on top. My specimen even looked clean to the doctors last week.

As for GERD. Shen and my local GI at Georgetown (another Rockstar accoring to Shen) suggest Zantag (Zantac?) is safe to take if you suffer from c.diff.

I emailed my Internist all of my symptoms and inquired if the test results would be back on time tomorrow for her to call in a prescription. She called in Flagyl so I'm starting it today. I love her. She has a lot of IBD patients. If it isn't c.diff it's something else like pouchitis.

Vanessa and Tim mine has the "stink" too.

I'm thinking I am getting this too often and something else should be done, like the fecal transplant. Even if I'd go to an end ileo it could still hit my small intestines, from what Jan said.

Jan and everyone - do you think emotional upset and stress can bring this on, release the spores to rear their ugly heads? I've had a lot of that kind of stress the last few months. It use to bring on UC flares but this is a horse of a different color.