CDiff?

Posted by fr33dom7 @fr33dom7, Feb 3 12:21pm

Can anybody in the group recommend, from personal experience, a Chicago area doctor that performs Fecal Microbiota Transplants? I am treating my 4th recurrence of CDiff, and it is getting exhausting; being also diagnosed with an anxiety disorder, I’m kind of a wreck.

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I am on my 3rd round of dealing with C Diff. I am waiting for the other antibiotics to arrive tomorrow since I have had no luck with the Vancomyacin. I am calling Dr. Maria my Gastro Doctor and telling her to set it up this time. I also need the Fecal treatment. I caught this in June 2022 after I broke both my ankles and ended up in an aftercare waiting to be transferred to Loma Linda here in California for the surgery to put steel rods and screws in. That aftercare was disgusting. After 2 weeks there and having to us a bedpan it started burning like hell when I went # 1 or 2. The diarrhea, nausea,dizziness,vomiting, shakiness ect. is horrible. I was sick for over a year and kept telling my now x-doctor that I knew I had gotten some kind of infection in my colon that is also causing burning when I urinate and all the other symptoms and told him to please do some stool sample tests. So I go to the Lab to pick up the test and I was like..
Is he serious..one of those little cardboard tests that you barely wipe a little bit of stool in with a brush. This went on 3 times and I kept telling him...I said STOOL TESTS! Like collect a good amount in tube to be tested. I finally went to a Gastro Doctor. She did the proper tests and after over a year of barely being able to get out of bed she found the C Diff. She told me I was lucky my colon didn't explode or I didn't die from being so sick for so long. I told her I don't believe in luck...I am blessed by the most high God. I feel your pain. This is a nightmare 😫 Please do a Google search in your area for a place that will do the Fecal treatment for you. Keep in touch please. You are the only other person that I have come across that knows what we are going through.

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@suzzee3

I am on my 3rd round of dealing with C Diff. I am waiting for the other antibiotics to arrive tomorrow since I have had no luck with the Vancomyacin. I am calling Dr. Maria my Gastro Doctor and telling her to set it up this time. I also need the Fecal treatment. I caught this in June 2022 after I broke both my ankles and ended up in an aftercare waiting to be transferred to Loma Linda here in California for the surgery to put steel rods and screws in. That aftercare was disgusting. After 2 weeks there and having to us a bedpan it started burning like hell when I went # 1 or 2. The diarrhea, nausea,dizziness,vomiting, shakiness ect. is horrible. I was sick for over a year and kept telling my now x-doctor that I knew I had gotten some kind of infection in my colon that is also causing burning when I urinate and all the other symptoms and told him to please do some stool sample tests. So I go to the Lab to pick up the test and I was like..
Is he serious..one of those little cardboard tests that you barely wipe a little bit of stool in with a brush. This went on 3 times and I kept telling him...I said STOOL TESTS! Like collect a good amount in tube to be tested. I finally went to a Gastro Doctor. She did the proper tests and after over a year of barely being able to get out of bed she found the C Diff. She told me I was lucky my colon didn't explode or I didn't die from being so sick for so long. I told her I don't believe in luck...I am blessed by the most high God. I feel your pain. This is a nightmare 😫 Please do a Google search in your area for a place that will do the Fecal treatment for you. Keep in touch please. You are the only other person that I have come across that knows what we are going through.

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THE FECAL TRANSPLANT IS NOW IN A DRUG.
THE DRUG IS CALLED VOWST. GO TO VOWST
AND THERE IS A FORM ON HOW TO APPLY FOR IT.
AFTER 3 BOUTS OF CDIFF. I AM STARTING TO TAKE THE 12 PILLS
HOPEFULLY BY NEXT WEEK.

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I don't know how you people survived. I only had it once last year after a stubborn UTI and taking antibiotics. I texted my pcp and told him I was going every few minutes felt sick and the stool was bright green. He called for a stool sample that day. I got the results back within 12 hours and was put on vanco right away.

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@karel

THE FECAL TRANSPLANT IS NOW IN A DRUG.
THE DRUG IS CALLED VOWST. GO TO VOWST
AND THERE IS A FORM ON HOW TO APPLY FOR IT.
AFTER 3 BOUTS OF CDIFF. I AM STARTING TO TAKE THE 12 PILLS
HOPEFULLY BY NEXT WEEK.

Jump to this post

Oh wow..
Thank you so much. I am on my 3rd bout at this time sitting in the ER being admitted. My lips are swollen, it's in my chest/lungs and you know the horror story of the other symptoms. I.am going to check that out now. I got this in an aftercare in 2022. The place was filthy.

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@gussie

I don't know how you people survived. I only had it once last year after a stubborn UTI and taking antibiotics. I texted my pcp and told him I was going every few minutes felt sick and the stool was bright green. He called for a stool sample that day. I got the results back within 12 hours and was put on vanco right away.

Jump to this post

You are one of the lucky one's. I did Vanco twice and it did not work. I am in the hospital at this very moment with my 3rd bout. My Gastro Doctor prescribed me Dividid this time and I could not find a pharmacy that could get it. I looked for about 6 days before it really got bad. My lips swelled, nasty diarrhea with mucus that was as sticky as glue..and all the other crap. My thumb on my right hand even swelled up. This was the worst one. I got it in an aftercare while I was waiting to be transferred to Loma Linda for a surgery. My freaking Gastro Doctor keeps dragging her feet about getting the cure for me. I talked to the Doctor that is in charge of my case here in the hospital and he said he is gonna get me set up to get it done. So thankful for him. The only way I have survived is my husband and my soulmate taking care of me. I thank God for him every day. I am so glad you did not get it to where it kept recurring. This is my 3rd time since November 2023

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First I see you're a California gal. I'm in the Bay Area. Your story is horrid. I feel so bad for what you have gone through. Escpecially since your gastro keeps dragging her feet to help you. Please keep me posted. It sounds like a horror story.

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My symptoms are not common apparently but everyones experience is different
the length of time I see others have been suffering really gives me pause
I have had this continually since September 2023 and can’t seem to get past a few days at a time without symptoms so I don’t understand the part of testing positive so many times in a similar timeframe as mine.
I have only tested positive one time, tested total of 3 times. I have constipation so one lab refused to even run my test. I’ve had a physician state he didn’t believe I had cdiff at all.

The worst part is the toxin running through my system wreaks havoc on daily living, relationships, mood, productivity etc. My husband is a saint.
I feel I can control this through diet, exercise, rest and calming down. I know this helps but if I deviate one of those, I'm down the next few days
I’m 59 so I shouldn’t be getting so old so rapidly but this is challenging.
Testing positive only once makes me discouraged I qualify for fecal transplant, VOUST, etc.
Thanks for any advice

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Oops, meant to say I’m worried I will NOT qualify for treatments available because I test negative.

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There is a good gi locator on Peggy Lillis cdiff foundation site. University of Chicago has good docs. Wait list is long.

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