I feel lied to about FMT recovery time

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kski84
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Posts: 8
Joined: Mon Jul 11, 2016 3:27 am

I feel lied to about FMT recovery time

Postby kski84 » Mon Jul 11, 2016 8:12 am

When I went to the infectious disease specialist, I saw her PA. After giving her my history, she recommended FMT via endoscopy or I could try dificid. I opted for the FMT because medication hasn't helped.

I asked her about results..how long until I notice a difference? How long until I'm feeling better? How long until I can actually be somewhat active? She told me it varies, some patients feel better within days, some just a week or two, maybe a month. She said the majority of people are back to normal by 6 weeks. She did say that there was a very small percentage that FMT wasn't successful for. She wrote me a slip to get me out of my work obligations for 3 weeks. 3 weeks. After being told it is manual labor...so I believed her.

What about post procedure complications? None other than slight chance of internal bleeding if the gastro screws up...a risk I was willing to take.

I was starting to freak out.. FMT was June 20th, it's now July 11th and I'm not improved at all. I still have watery D multiple times a day. I'm still exhausted and my muscles ache. My stomach is either gurgling or feels like it is on fire. I thought there would be at least SOME improvement by now...the average time she quoted, half the time the majority of patients are fully recovered according to her. The only thing I've noticed is sometimes the D doesn't smell as rank as it did...or I've just gotten used to it.

It's upsetting to me. My grandpa had the same procedure done last week. He's in and out of nursing homes and the hospital, so him catching c. diff was no surprise. My cousin was worried a few days post procedure because he was still having watery D. He saw the same specialist I did. A different gastro did the procedure, same way mine was done. They were told the same thing about recovery time.

WTF.

I've been thinking the FMT failed. My boyfriend wants me to go get tested for autoimmune diseases and have my thyroid checked to make sure nothing else is going on. He's also pushing for an MS screening as my grandmother and uncle both have it. I already have severe pain from back and knee problems...MRIs reveal damage to my back and knees thanks to arthritis and manual labor at a young age, but nothing that should cause me pain that's barely dulled by a 10mg norco...but I've grown used to it.

This started because my bladder freaked out on me. When November rolled around, every time I laid down I'd have to immediately get up and pee. Didn't matter what time of day or if I'd went before laying down. Up and down 10 times or more before falling asleep. All the antibiotics did was trigger this. I still have to pee when I lay down. I'm going through all of this for nothing.

Lisa33
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Joined: Mon Sep 29, 2014 1:45 pm

Re: I feel lied to about FMT recovery time

Postby Lisa33 » Mon Jul 11, 2016 11:31 am

Kski - I can totally understand your frustrations. There are many on this site who have had FMT's, and took a long time to recover. Am I reading your post correctly - your grandfather and your cousin both had c-diff, or just your grandfather? If you do not feel comfortable with your current GI, then maybe it's worth looking for another that is well versed in c-diff. On your other post, it said that you were on Flagyl, and then Flagyl and Vanco, and then went right to the endoscopic FMT. Most treatment plans are Flagyl, then Vanco, then Vanco tapers or Dificid, and then FMT.

You have another thread going as well, which can become confusing. Try to stick to one thread so that you don't get repetitive replies.

I know this is a really tough time, but you will get through it. It did sound like you were having very frequent D in your other post, so maybe retesting isn't a bad idea. I also agree with your boyfriend to run other tests and have a complete blood workup done to rule out anything else going on.

Lisa

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: I feel lied to about FMT recovery time

Postby beth22 » Tue Jul 12, 2016 5:55 pm

I know a couple of posters had other pathogens besides c difficile. I would get tested for ova and parasites and have a stool culture for other pathogens done. Also, was your FMT upper endoscopy? Because that does not always work and can also contribute to IBS.


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