5wks post fmt still not feeling well

If you have had or are considering an FMT please share your experiences here.
lvg
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5wks post fmt still not feeling well

Postby lvg » Tue Mar 30, 2021 8:04 am

Hi all,

Just signed up in hopes some would be willing to share what it was like after their fmt. I had the fmt Feb 24, so it will be 5 weeks tomorrow since the procedure. It’s been very up and down with how I’ve felt. Lately I’ve just had so much nausea, upset stomach, waking up not feeling well with stomachache, some “random” episodes of diarrhea, (like eating a chicken burger and then 10 mins later rushing to the bathroom and feeling sick for 3 days after) that didn’t escalate into a recurrence.

I’m just wondering if it’s normal to feel so awful still. I’ve had some good days but for the past week have just really not felt well at all. My gastro said it’s probably PI IBS and as someone who never had any issues before this it’s just so hard to know what’s “normal.” I have a 5 month old baby (this whole situation started with antibiotics for mastitis) and so badly want to be able to feel well enough to care for her on my own without having someone over to help every day. It’s hard to do normal mom things when I am on the couch feeling like I’m going to throw up or feel like I’m going to have diarrhea throughout the day.

I haven’t gotten the stool tested yet since I’ve been trying to hold out long enough that I wouldn’t get a false positive. I tried pepto this weekend when I had diarrhea 1x on Saturday but it didn’t really seem to make me feel any better.

Did anyone feel this sick but not end up having a recurrence? Did anything help?

Hoping many of you have had great success!

linnyg
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Joined: Thu Aug 25, 2016 11:19 pm

Re: 5wks post fmt still not feeling well

Postby linnyg » Tue Mar 30, 2021 10:52 pm

I know my doctor tried to hold off for as long as possible to retest, too. I had zero post-infectious IBS after my first FMT, but at the 7-week mark, something was VERY off, and there really was no doubt I had it again. And I did.

I had a second FMT 3 weeks later. That recovery was not so easy. I would have sworn on my firstborn it was back, several times. And I think I might have been tested 5 or 6 times in the year after that second one. It was always negative. :)

Also, I had no food intolerances after the first. But the second time- whew, boy. I HAD to eat a very bland diet for almost a year.

Hang in there. But if you cannot take it, ask to be tested again. If your GI won't do it, ask your primary care doc to order a test.

lvg
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Joined: Tue Mar 30, 2021 7:56 am

Re: 5wks post fmt still not feeling well

Postby lvg » Wed Mar 31, 2021 6:14 am

Thanks so much for responding! How long is it now since the 2nd fmt, and how are you doing now, if you don’t mind sharing? Did it take that full year to really feel normal, and did you feel pretty sick at times even though you kept testing negative? So glad you beat beat it!!!

beth22
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Re: 5wks post fmt still not feeling well

Postby beth22 » Thu Apr 01, 2021 1:07 am

I have had more than one FMT as well and it took a long time for me to feel better and to gain weight. Some people have had luck taking cholestyramine (Questran). It is a powder that you mix into juice or water and it helps to bind up toxins and also to firm up stools. It is actually a cholesterol lowering medication, but it has been used post c diff for the reasons I mentioned.

lvg
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Re: 5wks post fmt still not feeling well

Postby lvg » Thu Apr 01, 2021 3:24 pm

Thanks so much for sharing, Beth. I’ll look into the cholestyramine. When did you actually start feeling better after the fmts? I know there’s a light at the end of the tunnel ...

jG43
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Re: 5wks post fmt still not feeling well

Postby jG43 » Fri Apr 02, 2021 12:35 am

I am 2 years since a fmt for cdiff. It just takes time. The first month I had similar symptoms that you describe. By the second month it got better. By six months I still had occasional off days. As time went on I had less bad days. What helped me was to eat very bland on off days. I was lucky that I never had bad nausea. I did seem to become less tolerant of foods I could eat before the fmt. I have had several instances that I thought I was relapsing but waited it out to see if I had three or more really bad days in a row before getting tested. I never did retest. Hang in there.

beth22
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Re: 5wks post fmt still not feeling well

Postby beth22 » Fri Apr 02, 2021 12:41 am

I don't remember how long it took me, but it was quite a while. My case was complicated because I also got SIBO most likely due to a combination of the c diff and the antibiotics I took to treat it. So, after the first FMT, I took Xifaxan and that helped quite a bit. Later on, I would just use Pepto bismol on off days.

lvg
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Re: 5wks post fmt still not feeling well

Postby lvg » Fri Apr 02, 2021 11:53 am

jG43 wrote:
> I am 2 years since a fmt for cdiff. It just takes time.


That does encourage me. I guess I need to be patient. I was hoping I would be that person who never feels another symptom after the fmt! Was there anything else that helped you other than the bland diet on tough days? Thinking of trying things like a heating pad for stomach aches, and my GI did prescribe me zofran yesterday but I haven’t tried it yet. :) So glad you’re doing so much better!

lvg
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Re: 5wks post fmt still not feeling well

Postby lvg » Fri Apr 02, 2021 11:58 am

Thanks, Beth! I am thinking maybe I can give the pepto another try. I’m not sure if it helped the first time I tried it since I went to bed after taking it. So glad you are better now and that there is light at the end of the tunnel.

linnyg
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Re: 5wks post fmt still not feeling well

Postby linnyg » Thu Apr 08, 2021 11:43 pm

Its been 4 years since my successful FMT.
Yes- I felt awful, and my symptoms were very similar to those when I had active c diff. I forgot to add, I did end up taking cholestyramine, too, for a few months. Pepto helped, too.

Bland diet is what helped the most. :)

lvg
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Joined: Tue Mar 30, 2021 7:56 am

Re: 5wks post fmt still not feeling well

Postby lvg » Fri Apr 09, 2021 7:39 am

I really appreciate your sharing your experience, linnyg! It’s sounding like this is normal for a lot of people post fmt...at what point did things start improving for you, if you don’t mind me asking? :)

I’ve been doing a bland diet, too, and just wondering what foods to start adding in. :)

Also, so great to hear you are 4 years post successful fmt! So happy it worked for you!


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