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Anyone had Fecal Microbiota Transplant (FMT) for C Difficile?
Digestive Health | Last Active: Feb 26 8:22am | Replies (38)Comment receiving replies
I was hospitalized for 16 Days in 2020 for severe Cdiff, Toxic Megacolon, Lymphocytic Colitis. Dr's were considering Surgery .
I was started on Flagyl IV, Vancomycin IV for several days. Neither seemed to be making a difference. Then my Infectious Disease Doctor started Dificid. Within 2-3 days I was significantly better. I was released having lost approximately 20 lbs. I was instructed to finish my Dificid at Home and come to the ID Dr for an IV on Zinplava (a very expensive Monoclonal Antibody Medicine-(Had to be approved by Medicare before they would pay for it). I then went for my First FMT ON 1-28-21. I did fairly well until January 2022, when I had another episode of Cdiff. Took another round of Dificid at home per my Infectious Disease (ID) Doctor. He said since my Stools were fairly normal, no FMT this time.
Again In April 2022 I had another Cdiff episode. Was put on Dificid again. Also had Second FMT , an attempted to take 2nd round of Zinplava and had a bad reaction after IV first started so the ID Doc stopped.
Fast forward to August 24th 2022 another Cdiff episode. Back on Dificid for 10 days. No Zinplava this time . Went for 3rd FMT on September 9th, 2022. So far so good. But really beginning to wonder if there is ever an ending point to this awful Disease.
FYI, my Gastroenterologist was in agreement to all this Treatment the whole way through. Sorry so long, but it's been a long road just to this point. Anyone else experienced this seemingly never-ending saga with their Cdiff?
I have tried all sorts of Dietary ideas. It really doesn't seem to make any difference what I eat the end result is always the same. Cdiff again.
Replies to "I was hospitalized for 16 Days in 2020 for severe Cdiff, Toxic Megacolon, Lymphocytic Colitis. Dr's..."
Hi bbarbiee ,
Yes. I was instructed to continue on a lactobacillus acidophilus probiotic. I have tried a Swanson Brand, as well as Nature's Bounty brand. Neither has seemed to make much difference.
Has your gastroenerologist tried cholestyramine? My husband struggled with for six months after C diff. He took multiple meds but nothing helped. Finally, his GI doc suggested an off label prescription for cholestyramine, a powder to lower cholesterol. Apparently, it binds stool like it binds cholesterol. My husband started on a full dose and gradually tapered off. Finally, his intestines calmed down. When his gut flares up now, years later, he still takes a low dose of cholestyramine for a week or two.
I hope the tapering off approach can help you live more normally!
I am new here, and this might run a little ling, but I am putting it all out here trying to find answers.
It all started about 10 years ago or so. I would vomit and have diarrhea until there was nothing left to get rid of.
I wouldve feel like crap for a couple days, then would be better. As time went on, as i was getting sick, i would feel so much worse. Started going to ER when I had episodes, and all they could tell me is that my white cell cout is sky high and i had low blood pressure. Needless to say, this went on for a few YEARS until i finally got diagnosed with C DIFF. Started the Meds, but would continue getting sick once a month or so. Finally got FMT (pills) and I felt great for a year and a half. Then it came back, making me the sickest I have ever been. I was so sick it through me into A Fib, and blood pressure was dangerously low. I had my second FMT in November (up from the bottom) and was hoping all would be well. I am still getting sick. Went to hospital and tested negative for C DIFF. I am not getting as sick right now(low blood pressure and A Fib), but still vomiting and diarrhea. I feel bad for a couple days then better again. This is my sixth Mini episode since my FMT in February. I am so tired of feeling this way. I am hoping there are others on here that might give me some input. I'm sure like many others, i have tried to pin point what might be causing this, triggers etc... One thing that sticks out in my head is my house. This all started about the same time we bought our new house. I have been admitted to the hospital for this 12 times over the past ten years or so, and all but two have been when i was either at my house or just left that day or the day before. I travel for work, and am rarely home. Only home for 19 days in 2021 for example. I have been home since November and have been having all these mini episodes since FMT, so just thinking there might be something in the house causing it?? Just searching for any help.
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Hello Pixie1960,
Have they put you on any probiotics?