FMT second round

If you have had or are considering an FMT please share your experiences here.
Kim4cure
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Joined: Fri Jul 03, 2015 7:36 pm

FMT second round

Postby Kim4cure » Fri Jul 03, 2015 9:27 pm

Hi everyone. My name is Kim. I am a 34 year old female. Cdiff + x3. First bout was 3 years ago. Went on a trip to Mexico and my travel partner and I came back with cdiff. Symptomatic last day of trip and plan ride home. She and I started treatment at same time with flagyl but I also had a sinus infection and I am asthmatic and ended up on augmentin and steroids. Long story but ended up needing vancomycin. Took full course and I was good. Two years later had a root canal and was prescribed augmentin and steroids. Forgot to mention I am a registered nurse. So I made sure I took probiotics and monitored myself closely. Started treatment on Monday and by Thursday I was in the emergency room with full blown cdiff colitis. I was admitted and possibly facing a colostomy as my bowel was so swollen it was not getting blood supply and dying. After flagyl IV and orally and vancomycin IV & orally and completely NPO (nothing by mouth) I was discharged without having to undergo any surgery. Skin and bone except for a belly that certainly looked like a 6 month pregnant woman. I underwent a FMT one week later and had two negative specimens after. Success they said. Well here I am 5 months later and one course of steroids for my asthma and already constipated and looking pregnant again. Vancomycin taper dose and next week going in to talk about another FMT. I have done everything. Probiotics, clean eating, lactose free and I am slowly falling apart. Physically and mentally! After serving a divorce after 17 years with my high school sweetheart, bilateral fasciotomies to my lower extremities for compartment syndrome, being a wheel Chair unable to use my legs after surgery, losing my house to foreclosure, & learning I may have trouble conceiving due to other familial/hereditary issues, I am completely and utterly lost. Now round two of this FMT. Any advice or guidance? Anyone here with a positive second times a charm? When it comes down to it even as a registered nurse for many years I feel lost and hopeless. <3 Kim

NikaNik
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Joined: Wed Mar 11, 2015 11:52 am

Re: FMT second round

Postby NikaNik » Fri Jul 03, 2015 10:16 pm

Hi, Kim,

I'm sure one of the mods will be along with the welcome letter soon. I'm so sorry for everything you're going through. Too much for one person. But know that you've beat c diff before and you will again!

Did you test positive this recent time after the FMT? Do they know how/why it came back? Was it because the steroids lowered your immunity and you possibly picked it up while working in the hospital? Have you tried Dificid yet? It has a lower relapse rate than Vanco particularly in the taper/pulse dosing of it. Or maybe fecal transplant pills in addition to the colonoscopy FMT would do the trick? What has your GI suggested?

Again, I'm so sorry for all the pain and stress you've dealt with. Hang in there and know that you've come to a great place for support! I will pray you feel better very soon.

Nikki

beth22
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Joined: Tue Apr 07, 2009 2:23 pm

Re: FMT second round

Postby beth22 » Sat Jul 04, 2015 2:58 am

STANDARD INTRODUCTION:
Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Site History” and “Information and Guidelines for Posting to our Discussion Boards.” (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, The C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.
“Doctors” lists physicians our posters recommended and also a list of C. diff. specialists throughout the world with contact information. (Many perform FMT's.) See the new forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.
The majority of patients (about 80%) recover with one to two rounds of Flagyl or Vancocin. An unfortunate small percentage doesn’t and can suffer for months. Most recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate, and Dificid. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. You can help by educating your family, friends, neighbors, and co-workers. Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them again. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.
If a medication contributed to your case, please fill out an Adverse Event Report online at: http://www.fda.gov/Safety/MedWatch/default.htm. Under "Resources for You," in left-hand column, click on "Report a Serious Medical Product Problem Online." (Allison provided this information.)
The best protection for you and others is thorough hand washing and good hygiene. (See Dr. Borody’s articles and “CDI.”) For more information, see other support groups on Facebook, including http://www.peggyfoundation.org, the Mayo Clinic and Web MD web sites, and “The FMT Foundation” under “Links” on the homepage.
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. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, emotionally, and financially disabling it can be.
Again, welcome. Remember, the odds are in your favor. (End of letter.)

Hi - So sorry for all you have gone through. I am the "queen" of FMTs. I got my first one in 2008 via NG tube transfer and it did not work. Then I had one via colonoscopy and the c diff went away, but I was left with terrible IBS and SIBO. I finally had to treat that with Xifaxan because it was so bad. Unfortunately, a few months later I took Cipro for another infection, the same drug that gave me c diff to begin with and had the worst relapse of my life. After a few more relapses I had another FMT - upper and lower. Since then, I have done FMT enemas at home and they have helped me. Other posters have had more than one FMT with good results.

Bobbie
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Re: FMT second round

Postby Bobbie » Sat Jul 04, 2015 11:07 pm

I am so sorry for all you have gone through. I've had c diff on and off for 22 years - always linked to antibiotics.

How did you and your friend contract c diff while in Mexico? Food, water, etc? I've gone to the UK 10x s since having c diff - older son lives there - and thinking of meeting them in Mexico this year.

I, too, have constipation. Had a FMT 3 years ago, and altho it "cured" my c diff. I was left with IBS - but every treatment has done the same thing. I do all the "natural" stuff - drink lots of water, exercise, take magnesium, vit C, Benefiber, and an occasional stool softener and have been doing OK.

Best to you, and I hope your luck changes for the better. Altho we can't give you medical advice, we can support you emotionally and tell you what worked for us.

Quite a few nurses post on the site plus several doc's. Even medical knowledge sometimes does not help with c diff.

Keep posting. Again, sorry for all the havoc it has done to your life.


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