Home Fecal Transplant via Enema by RN

[Bobbie]

post by R.N. » Thu May 09, 2013 12:18 am

Hello to all,

I am a Registered Nurse who contracted c diff while working in the ICU in September of 2012 after having been on cipro for an upper respiratory infection. Being a nurse I knew from the beginning I had c diff as the smell is something we nurses know all too well. Over the span of 7-8 months I have completed 4 rounds of flagyl and 2 rounds of vancomycin. I knew after the 2nd round of abx that the medications weren't going to work and that I was in trouble but the only way I could continue to work and function was to continue the antibiotics. While the antibiotics didn't get rid of the c diff they did get rid of the symptoms while I was on the antibiotics, however, within 3 days of stopping the medications I would relapse resulting in a return of my symptoms (diarrhea, abd pain/cramping, low grade temp, etc.). 6 rounds of antibiotics was it for me and so I did a lot of research (and praying) and found that FECAL TRANSPLANT was what I needed and so I wasted no time and performed my own HOME FECAL TRANSPLANT (enema) 1 week ago using donor stool from my wife. SO FAR SO GOOD and I am optimistic as hell about my prognosis.

I will cont to give updates to my health status every few days and will try to answer any and all questions that I can.
R.N. Brand New Poster Posts: 1Joined: Wed May 08, 2013 11:52 pm
Bobbie Administrator Posts: 7269Joined: Sat Aug 06, 2005 7:00 pmLocation: Kansas City

Postby Bobbie » Thu May 09, 2013 12:53 am

STANDARD INTRODUCTION: Welcome to the site. Read the first forum All Users Read This First and its subtopics Please Read before You Post and Guidelines for Posting to our Discussion Boards. They will guide you in using the site and answer some frequent questions. Read Dr. Borody's article and topics in CDI - formerly FAQ – including Hygiene, Nutrition, and Testing.

The majority (about 80%) recover with one to two rounds of Flagyl or Vancocin. An unfortunate small percentage doesn’t and can suffer for months. Most eventually recover unless there are factors such as advanced age or other severe health problems. New treatments include fecal infusions and Dificid. Other drugs and treatments are in the pipeline, and there is increased recognition of the infection.

If antibiotics contributed to your C. diff, be careful about taking them again. (See CDI - Antibiotics). Some people tolerate them; some develop C. diff again. (See Dr. Borody's article). Don’t take medication unless you are tested. (See CDI – Tests.)

For further information see http://www.peggymemorial.org and several other support groups on FB. Do research on medical sites such as Mayo Clinic and Web MD.

This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. No one will understand what you are going through except someone who has/had this unpredictable disease. The best protection (for you and others) is thorough hand washing and good hygiene.

Although we know how devastating C. diff. can be - physically, mentally, and financially - it is not a fund-raising site. We rarely ban posters unless they are verbally abusive, combative or insulting; use inappropriate language consistently; or attempt to sell something through the site. We usually issue a warning first.

Again, welcome. Remember, the odds are in your favour. (END)

Even though you are an RN, I posted our usual "welcome."

I moved this from "Treatments" because this forum and "Questions" are the most popular forums. "Treatments" is a hodgepodge of different ideas ( some "way out") and needs updating but don't have the resources to do so.

Where did you get the protocol for doing the f. enemas? Were you and your wife tested?

I have a long history of C. diff. (My son also had it when he was young - twice - once in l979 when he was four - one of lst & youngest people given oral Vanco. - and again 6 yrs. later.) I developed C. diff. many years later. Have had it off and on for 20 yrs. but did have a 9-10 year respite until 2 yrs. ago. Had a FMT a year ago but now have a related infection - neg. PCR but intense pain for months. This is one of the many things I said I WOULD NOT do - but did.

Hints I found useful - I am not in the medical field - use Vicks in your nostrils to alleviate smell. (Am sure you learned this in nursing school.) Make your own saline to mix with "donation."

Several on the site have tried this altho. we can't suggest or promote any med/procedure.

Keep us posted.
Bobbie Administrator Posts: 7269Joined: Sat Aug 06, 2005 7:00 pmLocation: Kansas City



Re: Home Fecal Transplant via Enema

Postby beth22 » Thu May 09, 2013 12:49 am

Thanks for sharing your story. Many of us have had the FT, including myself. I, too, had a number of relapses. Mine ranged from 17 days to 4 months post meds. The FT is the only thing that worked for me, although I still have SIBO/IBS. Please continue to update as this type of information is very useful for others. Good luck - hope the one treatment did it for you. If not, you can always repeat. How soon after stopping meds did you do the procedure - the next day or did you wait a few days?
Bobbie Administrator Posts: 7269Joined: Sat Aug 06, 2005 7:00 pmLocation: Kansas City

[R.N.]

Hi Bobbie,

Sorry for the late response. I got tested after my 2nd relapse (completed a total of 3 rounds of abx) and the results came back positive which was no surprise. I've taken care of numerous pt's with c diff so I know all about this horribe disease. My wife wasn't tested as I didn't feel it was necessary. My wife and I have been together for over 20 years and she is in overall good health, particularly GI wise. I used Dr. Silverman's protocol for the actual process of the transplant, however, I decided to take what I read from Dr. Borody and others to create my own "protocol" if you will. I took Vanco 500mg Q6h X 3 days, waited 24 hours then performed a bowel lavage using nu-lytely and then the next day I performed my 1st of 4 daily transplants. I retained the transplants for 18 hours without difficulty. Immediately after the transplant there was some gurgling in my abdomen which I took as a positive. For me the gurgling was an indication that I transfused a good volume of stool and that the war had began, lol. This happened after each transfusion. I have had complete resolution of diarrhea, however, I now have what I believe is yeast overgrowth (bloating, gas, fatigue).

I completed 4 rounds of flagyl and 4 rounds of vanco. After the 3rd round of flagyl I developed an overgrowth of yeast on my tongue, which is a side effect of long term antibiotic therapy. When I was prescribed the 4th round of flagyl by an ER physician I showed him my tongue and he said it was nothing (whaaaat), however, I wasn't as surprised as one might think because i've been working with physicians for over a decade and learned a long time ago just how much they DON'T know and how incompetent MANY of them really are.

I am about to start a low carb diet for 2 wks which should cure me if it is indeed an overgrowth of yeast. Could possibly be SIBO, however, my history of yeast overgrowth (thrush) on my tongue for an extended period of time leads me to believe it is an overgrowth of yeast.

[R.N.]

Hi beth22,

Thanks for your reply. I believe I answered your question in my recent reply to Bobbie. Let me know if I can help in any way or if I can answer any other questions you might have.

[R.N.]

Bobbie,

Regarding the use of vicks.. I didn't learn that in nursing school. We nurses learn most things on the job and what we do in particular as it relates to masking odors is we use 2 masks with a layer of toothpaste between. Works great.

Regarding saline solution.. While it is possible to make your own saline solution I bought mine at a local pharmacy. I bought 2 bottles (each bottle has 1000ml of saline). Pretty cheap at $4 or $5.

In my transfusion I used a good amount of stool (most of 1 bm) diluted in 250ml of saline and then mixed it in a blender. I transfused the mixture within 20 minutes of preparation.

[beth22]

My mother got the yeast overgrowth in her mouth from Flagyl as well. She was given Diflucan one time and Nystatin another time - swish and swallow for the Nystatin. Both worked.

[saraht]

R.N.
Wondering how your yeast overgrowth is doing? I had taken clindamycin and developed what they thought was oral thrush. I had multiple relapses with c.diff for a year, as well as taking tons of anti-fungal meds (which didn't help), all from the antibiotic. Its been a year and a half and I still have problems with my tongue. It's not contagious though. Almost like an overgrowth that can't be beaten down because my flora is so off. Hope all is well!

[AThurston]

RN, Thank you so much for sharing. I also am a nurse that was infected with c diff on the job in Jan 2011, after many treatments Flagyl oral & IV, many different doses of Vanc oral, 1 round of Dificid and many relapses. July of 2011 I had 7 days FT's via nasogastric tube inpatient hospital, 3 weeks later I relapsed. I then was put back to the drawing board with Vanc with long treatment, as long as I was on Vanc I was able to somewhat function. Stop the vanc, relapse. I then had treatment of Dificid and Vanc combo. Relapsed within one week. July 9th 2012 I had colonoscopy FT followed by 5 days of donor home enema's. I have been negative for c diff a year July 9th 2013. I have horrible IBS, ( D &C), diverticulosis, L side pain daily since July of 2011, thickening in areas of my colon & dietary intolerances. I have to take Micro K and B12 inj now, due to never has returned to normal levels. I was like you, I put all my faith in the FT and home enema and knew it was the end of treatments. I was not able to go back to my job that I had for over 30 years and was devastated but I knew I had to suck it up and go on. I'm a triage nurse in the call center in a busy dr's office. I miss patient care and the contact, but, I love my job and so thankful to be where I am. I tell myself could be so much worse, could still have c diff. I love your take action approach and positive attitude! Stay well. Please do keep us posted.

[fred66]

Hey another RN here who took Clindamycin for an abcessed tooth (that has since been removed and still causing the TROUBLE!!) also having experienced the "smell" of c-diff at work...knew what this was..started Flagyl 500mg every 8 hours..MD called in 4 days to say the test was negative...stop taking ...against my better judgement I stopped as do not like to take ANY medications...one week later bloody/mucousy stools started again...went to larger Hospital ER for another test was positive..I started taking Flagyl 500mg every 8 hours for 14 days...stopped last Friday and last night I could tell I was getting it back...today I have had about 6 very bloody/mucousy stools...called to MD who called in Vancocin but than I was reading about Dificid and he actually called it in for me..only hitch will not be at RPH until Monday...and I really didn't think I should wait as the stools today are the worst they have been..so I started the Flagyl tonight...does anyone have any feedback on taking Dificid...I am willing to pay the $3400... for it if it will get rid of this for good....I'll even settle for a year!!! also wondering how long I should stop the Flagyl before starting the Dificid...any feedback could be greatly appreciated thanks....and thanks for creating a "community" so we all don't feel alone through all this...

[gm37]

Fred66,
Dificid worked for me after 4 years of being on and off Vanco. If I get it again, I will ask for the Dificid. It is meant to be used first. It does not destroy as much good flora as the Vanco. It is ten days, 2 pills a day. It takes a while to get back to normal afterwards, but that is to be expected with colon issues. Your good flora has to repopulate.
My insurance company paid all but $47.
Ask your doctor or your pharmacist about the time between Flagyl and Dificid.
Good luck. Keep me posted.
Anne

[fred66]

thanks so much Anne
did you have many/any side effects with the Dificid? and did you use Probiotics with the Dificid...I have been taking Culturelle but I did buy Florster also I have not taken started...at this point I am not worried about the $$ I told the pharmacist that and he was a bit surprised...health is more important and I am fortunate enough I can afford it right now... thank you so much for you time and feedback...good luck

[gm37]

I did not have noticeable side effects from the Dificid. However, it does not work overnight. It seems that it took several months of healing before I began to feel better.
I always took, and still take, probiotics. I jump around. I do take S. Boulardii and sometimes VSL #3. Always eat yogurt.

[getwellsoon]

I do the same Anne, but I didn't have an easy time with the Dificid. I felt bad the whole time taking it and for some months after but I am now 15 months out from meds so it must have finally kicked some CDiff butt. My GI told me to take probiotics for life since I had such a severe case of CDiff and couldn't get rid of it. I do eat yogurt everyday but there was a time I couldn't tolerate it. I'm glad I can eat it now.