Desperate for fecal transplant

[Mollyp]

desperate for fecal transplant

I am 51 years old and have had crohn's for 14 years. I had a bowel resection, abcess, another bowel resection and hernia repair with in 12 months. I now have had c-diff for 6 months and can't get off vancomycin without reoccurance. I need to find a Doctor in Ohio that does this procedure and am having no luck. Can anyone out there help me, PLEEEASE! Molly

 

[xJillx]

Hi Molly and welcome. Boy, you've been through a lot in a year. I wish I had some advice, but I don't. I wish you luck, and I hope you can find a doctor who can help you.

Hang in there!

 

[Mollyp]

Thanks for the encouragement.

 

[Jessi]

Hi Molly. Welcome! You've been through a lot this year.

I've heard of fecal transplants being done, but I don't know anyone who does it... especially in Ohio. Perhaps someone in our Doctor Directory? There are around 20 doctors in Columbus on our list. Maybe call around and ask if they do it. http://www.crohnsforum.com/doctor/us/oh/

Glad you joined us. I hope you find the help you need. :hug:

 

[mnsun]

Now, I'm not a doctor and the following was posted as a comment here: http://www.scientificamerican.com/article.cfm?id=swapping-germs

Judy stated, off the cuff, though POSSIBLY qualifiably:
"Frankly, with close household contacts, if there is not scrupulous hand hygiene, people often eat ****, euphemistically known as fecal-oral transmission. Any time anyone is less than meticulous in his or her handwashing after defecation, there is a high risk that that individual's hand will be contaminated with stool, which will be easily spread as the person subsequently touches things. Why not, in urgent cases and with proper informed consent, use stool from a close contact without extensive testing? It is inexpensive and readily available. Effective administration may well not require colonoscopy. The cost of such a fecal transplant--as low as an enema kit and blender..."
Judy Stone, MD

Author, "Conducting Clinical Research: A Practical Guide for Physicians, Nurses, Study Coordinators, and Investigators"
www.conductingclinicalresearch.com

But, as long as I didn't have a fever/sepsis symptoms (which I AM NOT QUALIFIED IN ANY WAY to diagnosis) and have researched such things, maybe I would give it a try. I mean, based on what comes out, your colon wouldn't be so picky as to what comes in...toxicologically speaking. Um...unless your "donor" has some blood borne/digestive illness or otherwise apparent disease BASED ON THIS RANDOM SUPPOSED M.D., I would consider doing it if I was in such dyer straits. AGAIN IM NOT A DOCTOR, IM JUST SOME DUDE OFF THE STREET. I believe a "search" on the forum for FMT would give you some more leads to track down a facility.

 

[Mollyp]

Thanks for the response. What is FMT?

 

[mnsun]

Fecal Microbiota Transplant. Many doctors/universities/clinics from OK, NY, MN... are listed in articles such as the one posted, or this one:
http://www.sciencedaily.com/releases/2011/10/111031114945.htm

Maybe, you could google all the mentioned doctors/univ/clinics to mass email public contact info listed on the internet and ask if they've any reccomendations for your state/region? Maybe briefly state your condition and interest in taking part in further studies or the urgency to contact any known like-minded collegues affiliated with docs/clinics etc. I wouldn't expect immediate replies, though. This seems to be getting a lot of press, so I'd like to think most larger universities/hospitals may be able to steer you in the right direction.

I feel for you, but I really don't know how to go about hunting for such doctors. You could cut and paste relevent email "contact us" addresses and compile a list in Word, then compose one email which you could paste/CC: all the email addresses in one swoop. I hope you can get things moving.

Nutritionally, I don't know much about C. Difficile but Manna Oligo Saccharides seem to be proven take out alot of pathogenic nasties from adhering to intestinal walls. Things like Jarrow S. Boulardii + MOS or other glucopolysaccharides like Epicor products come to mind. Hope this helps.

 

[JohnnyRottenAppleseed]

Shouldn't you be on Flagyl for c diff? Obviously the vancomycin is only keeping it at bay. Ask for flagyl.

 

[Mollyp]

Flagyl was the first drug I tried while in the hospital with c-diff for the first time. It didn't help at all and for three days my temps were 102 -104. I also tried deficid, and new drug that was suppose to be so great. But I'm back on vancomycin. Thanks for the advice though. I really appreciate it.

 

[Mollyp]

Thanks everyone for the information. I was able to find direction on how to do this procedure at home. I will be doing a home version of fecal transplant at home next Saturday.

 

[D Bergy]

Let us know how this works for you. I do not know if the transplant would get rid of the C-Diff, but I hope it does.

Good luck

Dan

 

[glum chump]

I can't answer your questions regarding Ohio, but I know that there has to be doctors who support fecal transplants for people with C Diff. There was a news story locally (Canada) about a doctor who had been asked to suspend her fecal transplant treatments for people with C Diff. It seems that since it's an experimental treatment, hospitals are wary of doing it, although unofficial stats say that 90% of the people who've been treated have gotten better/survived.

I wish you all the best with getting this treatment.

I've attached the link to our local story.

Cheers,

Kismet

http://www.cbc.ca/thenational/indepthanalysis/gopublic/story/2011/01/17/bc-fecaltransplants.html

 

[Emily]

Please tell us how it works for you! I'm very curious. After seeing postings about it on here, I wrote a paper for my medical anthropology class about Fecal Transplants. Really interesting. Hope all goes well and that it works for you!!

 

[JohnnyRottenAppleseed]

Thanks everyone for the information. I was able to find direction on how to do this procedure at home. I will be doing a home version of fecal transplant at home next Saturday.

Keep us posted! Where did you get the "material" to self transplant?

 

[ksjacksonjr]

I have just had my first bout with C-DIFF. I do not get fevers when I get sick due to the amount of humira I take. I have to be retested to see if I still have it. I took a two week couse of flagyl 3 times a day. I felt good for a few days but now I am off of it the bloating and inability to eat anything more than a couple of bites has come back. I got really sick bfore they found it. the only reason they did find it was because I signed up for a drug study for a new drug. it was discovered because of the screening I had to go through. Because of this I can not participate in the study till I am clear.

 

[Mollyp]

I tried the home fecal transplant this saturday. Everything went okay. I stopped the vanco as directed but yesterday (4days later) I became very sick again. Burning feeling migrating all over my belly, hot flashes, fatigue, and then horrible diarrhea. I wish I was prepared to get a stool sample, but I wasn't planning on that. I had to restart the vanco immediately in order to keep working and keep my job. The c-diff was definately back, but I have no way of proving it now.
I'm so tired of seeing gastroenterologists that don't know what to do. I sware that mine wouldn't mind if I dropped off the face of the earth. I am on my 5th month of straight vancomycin. Maybe I need to see an infectious disease Dr. Does anyone know of any good ones in Columbus, Ohio. I'm so desperate.

 

[JohnnyRottenAppleseed]

Ugh that sucks! What's the difference between a flare and c diff?

 

[mickey]

I would suggest you call the University Hospitals in OH and IL and see who they would recommend. Good luck!

 

[Mollyp]

I response to the question how do I know it's c-diff or a flare up. With c-diff my tummy burns and when it does I sweat. My whole constitution is off. The diarrhea is unlike diarrhea from crohn's. It's dark fluid and is very painful coming out. It smells awful and my rectum starts hurting when just passing gas. It tears up my rectum immediately. Vancomycin gets rid of these symptoms. Steroids, which have always helped in the past, make my c-diff worse. The pain is so severe that a normal person would go to the ER. At least I know I don't have a burst appendix because that was removed during the surgeries. This is so unlike anything I've ever known.

 

[JohnnyRottenAppleseed]

Thanks Molly! I'm sorry you are going through this. How do they diagnose C Diff? Is it through stool sample only? I only ask because my flares start with shooting pains in my rectum. I have one of those take home stool sample kits you drop off at the doctor. I think i'm ok now, but it's a daily battle as you well know. Thanks and I hope you feel better soon!

 

[Mollyp]

Hi Johnny. Thanks for the good wishes. The way I understand it c-diff symptoms are caused by the toxins released when the spores open up. C-diff bacteria is peculiar and different looking from most bacteria in the gut. Since it is so different looking they can identify it.

 

[JohnnyRottenAppleseed]

Do u need a stool sample? Is that how they test for it? I'm taking one in Monday.

 

[JohnnyRottenAppleseed]

PS I know good doctors in Cleveland my home town. Prob too far for you. Have a great weekend!!!