Want FMT, need help/advice how to get it done

If you have had or are considering an FMT please share your experiences here.
thomlea
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Joined: Fri Sep 08, 2017 11:29 pm

Want FMT, need help/advice how to get it done

Postby thomlea » Fri Sep 08, 2017 11:49 pm

This is my first time to this forum and I'm hoping I can get some help. 40 year old female (located in Minneapolis suburb) with 6 reoccurrences of c.diff. since Nov 2016. The c.diff. Infection was a result of several rounds of antibiotics for a bad uterine infection. Have had 2 rounds flagyl, 3 Vanco, 1 dificid, and now on Vanco again. Was working with an infectious disease doctor who finally referred me to a GI clinic that recently started doing FMT. He put me on Vanco again (after two trips to the ER), but the process to even get on his schedule to be seen by him has been beyond frustrating. I'm doing terribly and barely able to get out of bed and there is zero urgency. His patient coordinator today told me that "you really don't want to do FMT if you don't have to, so we try to avoid it if we can". I've also been told something differet with every person I have spoken too. It just seems like they have no idea what they are doing. This clinic is Minnesota Gastroenterology. There are also doctors who perform FMT at Mayo and the U of MN.

Here is where I'm hoping and praying for some help. Has anyone had a fairly recent FMT done at either Mayo or U of MN and can say whether the process to get things moving the FMT is easier? AND even better, does anyone have a referral or contact that might have an "in"? My infectious disease doctor has said he will refer me anywhere. The soonest I can get an appt with the GI to even talk to him is two weeks. And even with that, I don't really have a good feeling about the clinic.

Any advice? Help? Please?? My 5 and 6 year old deserve to have their mom back.

beth22
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Re: Want FMT, need help/advice how to get it done

Postby beth22 » Sat Sep 09, 2017 5:26 pm

Hi Thomlea and welcome to the site. Please read the first forum for information for new posters.

I had my first FMT done in Duluth, but that was 2008 and it was by NG tube. I would not recommend that route. There have been several posters who have had FMT at Mayo and were satisfied with the results. That would probably be my choice, although the U of MN has a good reputation too. I would call both places and see what is involved and how long of a process this is and then have your doctor refer you. It is true that you have to prep with an antibiotic like vanco prior to the FMT, so if you are on it, call and ask how soon they can do the FMT with your doctor's referral. When I went to UCLA a couple of years ago to inquire about FMT, they wanted to schedule me right away. Maybe at least one of the places would do the same.

MKW
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Re: Want FMT, need help/advice how to get it done

Postby MKW » Sun Sep 10, 2017 11:24 pm

Hi, I had a successful FMT done in March after three recurrences. As far as "not getting an FMT if you don't have to", that is just one person's opinion. It's something you need to research and make up your own mind about. I decided there were more risks to me to not get one. FMT's have been miracles for many people. I have mild IBS now, but other than that have been perfectly healthy since my procedure. My donation came from Openbiome. The success rate of first FMT is between 80-90%. And it doesn't take time for most of us to get better after it. I was better the next day after the procedure than I had been since my first infection started. Some people require more than one, but since I have been participating on here for the last year+ I have not seen anyone that wasn't successful with the 2nd. Be hopeful about an FMT, but if you do it definitely go somewhere experienced at the procedure and have it done via colonoscopy. For me I had to go out of town for it and it was worth it to go to an experienced doctor... I'm in Richmond VA and had to go to Charlottesville to a UVA clinic. For me I had been put on Vanco by my GI doc, then went to consult with the FMT doctor. She had me just stay on 1 Vanco every other day until they could get my procedure scheduled. I think it took about a month from when I first called their office to the day of my procedure. Best of luck to you in your efforts. For me the lack of knowledge and experience with C Diff of some of the healthcare workers I dealt with was the hardest part. - Melanie

Bobbie
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Re: Want FMT, need help/advice how to get it done

Postby Bobbie » Fri Sep 29, 2017 11:44 pm

thomlea,


Since u live in MN I would definitely go to Mayo.

Read the FMT forum for info about the procedure and so u will know what questions to ask.

Best of luck and welcome to the site.


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