On 3rd FMT for Cdiff

Posted by pixie1960 @pixie1960, Sep 11 7:26pm

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.

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Hello Pixie1960,
Have they put you on any probiotics?

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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.

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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.

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@lengel

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.

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Hi lengel,
Thank you for the Reply. I am glad to hear uour husband is better in this regard. Of interest, the Surgeon that was called in for consultation while I was hosptalized in November/December 2020 for Cdiff, and decided to hold off on Surgery at that time, did indeed start me on Cholestyramine twice daily. I took it the balance of my time in the Hospital, until 12-10-20. Then I was sent home on it (along with other meds) , and filled at my Pharmacy an RX from the Surgeon for twice daily use of Cholestyramine.

I did take it twice daily until 12-29-20 when I had to go to the ER for a Bowel Impaction. That was resolved by the ER Doc , but to say the least, it was unpleasant. Honestly I decided on my own to Discontinue the Cholestyramine and I havent had that problem again, thankfully.

But what I have had since is Cdiff , with short breaks of semi-normal life in between. That said, thank you for telling me about your husbands successful treatment. I may well try the Cholestyramine again with the gradual taper off as he did.

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I hope the tapering off approach can help you live more normally!

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@lengel

I hope the tapering off approach can help you live more normally!

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Thank you very much! It would be a Blessing!

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