FMT - Only choice for docs and nurses

[mjmcgetr]

During my three month battle with the beast I have talked with a lot of docs and nurses. All of those professionals knew someone who had C diff. Three Doctors and one nurse actually had it themselves. Anyone want to take a guess as to what treatment all 4 chose? You guessed it FMT. 2 had it after one course of meds failed and 2 didn't even try meds! They went out found a good doc who would do it for them and got it done! The moral of the story is health care professionals choose FMT over meds and we should be allowed to do the same. No one should suffer for a year or three positive tests before they get this treatment. Sorry I just had to vent !!! I met another nurse today who skipped meds and right to the FMT. None have relapsed either despite working in health care!

[seekingcure]

Must be nice to have "connections." You're right: it should be a first line option for any of us who want it.

[mjmcgetr]

I totally agree I couldn't help but think that health care connections probably made it easier for them to access. I just think everyone should have this option.

[beth22]

I completely agree. The vanco killed my intestines way more than the c diff did. I wish I had that option, but back in 2008 few people were doing it. I guess if you are a nurse or doctor, you can just get a "buddy" to come and help you do it at home.

[mjmcgetr]

I think they have more resources and one nurse told me that she was able to get a doctor friend to help her because he felt she knew the risks and would be less likely to sue him if things went wrong. Doctors saved my life but honesty they don't give us civilians enough credit. THey wanted to put me on another round of Vanco after deficd failed and I finally stood up and said no and I never stood up to docs. I did the research and found someone reputable who would do my FMT. I couldn't see giving this disease anymore of life !

[mjmcgetr]

My husband and I have already decided if it happens again we will go with another FMT !

[Bobbie]

Wise choice. Read the FMT forum and see the list of doc's who do them.

[seekingcure]

If I am unfortunate to get c-diff again and can qualify for an FMT, I will be getting one also. I would get one now if I could for the proteus mirabilis overgrowth and horrible IBS symptoms. I'm honestly having worse diarrhea some days now than I ever did with c-diff. I think the Flagyl, Vanco, and, most recently, Xifaxan have really done a number on my system. Seems like the best (maybe only) way to get some of the good bacteria back is FMT.

[getwellsoon]

Yes Bea, the merry go round of meds I think sometimes do more harm then good. I was on them for over a year. When I finally stopped it took over 2 yrs to get my gut back to almost normal. Went through heck doing it. I keep you in prayer that you will finally get better and can get off this cycle of meds. I'm with you, if I ever get CDiff again I will ask for FMT immediately. I'm not going through a year of meds again either. Hope today is a better day and the D lets up and you keep healing. Hang in there and we are here for you.

[beth22]

I am in the process of looking into that for myself as well. My donor is not suitable for a while, so I am looking into getting one from someplace with a donor bank. Never thought I would come to that, but you do what you have to in order to survive and not be in pain and suffering.

[mjmcgetr]

I think the stool banks are really coming along these days! I was very anxious about it as well but all three of my possible donors had to go on antibiotics in the course of a month :( So I used an a donor from a bank my doc made me very comfortable with it :) Lots of places are using open biodome now :)

[beth22]

Yes, one of the possibilities is open Biome and there are a few others as well. I may have to go out of town, but one option is enemas with no laxative prep, so that would not be too bad. I did a colonoscopy prep in a hotel once and don't want to do it again.

[Tonja13]

Bea,
Can you tolerate probiotics, or any yeast probiotics? I was reading yesterday about brewer's yeast and it made me think of you, because the brewers yeast showed activity against both c. diff and proteus mirabilis. (It also stimulated the immune system to respond to these invaders better.) It has some side effects (mostly gas), but the benefits were enough to convince me to add it, at least occasionally, to my probiotic routine. (I do get some gas and bloating from it, but whatever.)

[seekingcure]

Thank you, Tonja, for thinking about me. I take quite a few probiotics, including VSL-3 and s. boulardii yeast. I tried adding brewer's yeast a couple of times, because it is supposed to stimulate the immune system. Strangely enough, brewer's yeast seems to cause worsening diarrhea. I'm not sure why. I tolerate the s. boulardii fine. Right now, I'm trying EnteroGam, which is also supposed to boost the immune system, along with about a teaspoon of Pepto Bismol with meals. I don't want to take a strong antibiotic like the Cipro the GI recommended for the p. mirabilis if it is just in the colon. If it is what is causing the UTI, I will probably have to treat it, hopefully with Bactrim or Ceftin, as these are the two least dangerous antibiotics listed that are effective against it. I might not be able to take the Bactrim, though. I had some sort of reaction to it in my early twenties and that has been so long ago that I can't remember exactly what happened. It may have just been vomiting and I probably took it on an empty stomach. Maybe the doctor will agree for me to try it again. Thinking of ordering some more kefir grains and making my own again. It was not something that I actually liked the taste of, but maybe I would get more benefit from it than the VLS-3.

If I had a suitable donor available, at this point, I would be looking into doing some stool enemas at home. FMT was beginning to be available for IBS before the FDA cracked down on them. Now they are only available with a diagnosis of c-diff and only after strong antibiotics have failed. Even my GI says FMT is probably the only thing that will ever actually help me. It's a shame I can't get one.

[mjmcgetr]

Bea,

I am sure you have heard of this but have you tried a strong pre biotic ? My GI just put me on one formulated by a GI doctor to stimulate growth of good bacteria. Its a powder I drink once a day. I also take VSL 3 and the yeast probiotic. You would think we would be the healthiest people around :)