Fecal Transplants - Why does it take so long to get one?

[thesciteach]

Hi,
I have been reading that fecal transplants are highly effective. Why does it take so long to qualify for one? Why do they make you suffer for months? ---S

[seekingcure]

Excellent question! I wish I knew the answer.

[getwellsoon]

Most Dr. have to CYA, they answer to boards, practices etc. Maybe soon it will become a second line treatment instead of a last resort. There is much research going on at the moment so the future looks brighter for CDiff sufferers. Carol

[cdiffmomagain]

I'm wondering if some doctors have different qualifications? The one I saw is part of a research study, which specified several things:

1) a positive C Diff test within 90 days of the procedure
2) at least 1 treatment with vanco that failed
3) the donor to be tested within 2 weeks of the procedure (and allowing for a week for all tests to come back)

His schedule was full, but they found an appointment within 3 weeks, and that seemed about par for the course considering my donor labs.

That said, I postponed the appointment to see if Dificid would work. When it didn't, I was going to have to wait 6 weeks for another appointment! Thankfully, something opened up and I'm scheduled to go in 3 weeks from yesterday. I'm ready!

If your doctor has a longer timeframe - could you consult with someone else?

[Prayingmother]

We called for consultation on fecal transfer on the advice of my daughter
s specialist, and the earliest appointment is Feb 7! This is at Lahey clinic in MA. I think my daughter's vanco taper will be finished before that. I hope the timeline works out for her.

[mryan63]

My mom was diagnosed with c-diff a few years ago. She was doing ok until July when she started with reccurent c'diff infections as soon as she was discharged from the hosp. The Dr here in Florida that we consulted with discussed Fecal Transplant which we never heard of. The only problem was he was told by the FDA to cease doing any kind of fecal transplant procedures effective Immediately do to the hospital not being a "teaching" hosp, therefore the FDA would not approve a protocol for the research to be done. He then advised us to consult with Dr Lawerence Brandt in Bronx, NY. Dr Brandt is one of the pioneers of the fecal transplant studies and developer of the protocol in which he utilizes in Monefiore Hosp in the Bronx NY. We had a phone consult with Dr Brandt's associate in Dec 2013. Unfortunately my mother was not approved for the fecal transplant under Dr Brandt's protocol. His protocol is for patients 74 years or younger, mom is 78. Feeling defeated Dr Brandt's associate advised us to consult with a Dr Sovi Joseph in Port Charlotte , FL . We called immediately and got an appointment to consult with Dr Joseph. Needless to say the fecal transplant was scheduled and done within a week! Mom had the transplant done yesterday, so far she is doing very well. The only complaint she has is , she has had no bowel movement yet! Yay for me! that is. She is so used to living in the bathroom so she is worried about not having one! I do hope this means she is cured! Anyway, if you are in the area or can consult with Dr Joseph I highly recommend you see him for the transplant! He will do it quickly!

[seekingcure]

It certainly sounds promising for your mom to be cured. I believe it's pretty common to not go for several days following a transplant, especially if she took Imodium prior to the procedure like a lot of patients are advised to do so that they will be able to retain the transplant for at least a few hours. And just being so cleaned out of everything with the prep might keep her from going for awhile. But maybe some of the folks who have had a FMT can chime in with more definitive information regarding this. Perhaps some extra fiber would be advised if it goes on more than a couple of days and she starts getting uncomfortable. Call her doctor before doing anything, though. Don't want to add anything that he doesn't approve.

I'm interested to know if Dr. Joseph recommended any specific diet before and after the procedure, if you have time to share that information. And did you have to find a donor or did the practice provide one?

I'm so happy for your mom. I know you are both relieved to have this behind you. Now she can start healing. She's very lucky to have you as an advocate, making sure she gets the treatment she needs, when she might not feel up to doing it on her own.

[cdiffmomagain]

I was told that I might "leak" a little after the FMT - which I did, just a tad that first evening - but that I should have an actual movement within 3 days. I had my first one at 2 1/2 days. The doctor who did mine (Barry Schneider - Charlotte NC) has cured 100% of his patients so far with FMTs, with just one requiring 2 transfers. That patient who required 2 couldn't hold the transfer - she "went" quickly after. If Dr. Schneider's results are typical, your mom not "going" is definitely a good thing! Prayers she continues to do well.

[Bobbie]

Some patients have benefits if they hold the transfer for even 15 min but most need to hold it longer. Reassure your mother that she will be fine. Imodium and usually given and then the prep,probably has something to do with it. Many docs advise adding fiber to the diet after an FMT. If she still has a problems inter next day or two, call the doc.

Hope this works for her. It has a high cure rate. I agree - you are a wonderful son.

[seekingcure]

cdiffmomagain,
I was wondering how you were doing after your transplant. Glad to hear that you are doing well. Seems like more and more of our members are getting them and doing well. Very encouraging news! Please keep us updated on your progress.

[mryan63]

seekingcure,

This morning mom had a bowel movement, Yay! It was small but formed, so far everything is looking very good! I also spoke with Dr Joseph's nurse practitioner and she said that not going for a couple of days following the procedure is typically normal. The prep and immodium slow down the system. Nothing to worry about. Anyway, Dr Joseph had no specific dietary instructions other than diet as tolerated following the procedure. She can resume her usual diet. Dr Joseph does use donors for the procedure. He uses specific donors that he knows, and calls on them a few days prior to the procedure. I just have to say that he was wonderful before, during and after the procedure. I would highly recommend him. For now, everything looks great, we think she is cured! I will continue to keep my fingers crossed and pray that this is a sign that she is cured! Lots of luck to everyone else that is looking into or planning on having this procedure done in the future!

[getwellsoon]

So happy your Mom is doing so well. I hope this is the cure for her and she never has to worry about CDiff again. Let us know how she does. Carol

[mryan63]

Thank you very much Carol!
I will certainly keep you all updated on her progress. I just wish I had found this forum a long time ago! We could have used some insight and support for this terrible disease!

[Bobbie]

myan63,
Glad your mother is doing well. Dr. Joseph is on our list of docs. for FMT's. I would ask again about fiber - supposed to "feed" the good bacteria. Of course, docs. (even in the same field) differ on almost everything.

Congrats to you and your mother.

[pinkangel]

Myran That is great the Dr. Joseph was able to help her. I was actually looking at this Dr myself. I live in Orlando, FL and googled the 3 or 4 who do FMT in our state. I was wondering if anyone here had used him. Also great that he has donor stool. That takes one worry away from this procedure. I am wondering if you know the charges? Does he deposit the stool just into the colon? My insurance covers it but DR Shepard and another doc here in FL do not take my insurance so was going to call him and get info if I needed one.

Cdiffmom Also good to know about the Dr in Charlotte, NC . 100% cure is impressive! I am from NC so happy to know there is also a good doc there in case I get worse and go with my dad for a bit.

I hope one day they will let people receive the FMT earlier in treatment. With all the news about antibiotic resistance I would think they would want a proven method with high cure rate to come before giving all the harsh antibiotics.