How did you feel in the first days after FMT?

If you have had or are considering an FMT please share your experiences here.
kanak
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How did you feel in the first days after FMT?

Postby kanak » Fri Jun 09, 2017 3:14 pm

I am a 42 year old female. I have battled c diff for a year. I finally had an FMT yesterday. I have read every post in this forum but I still have a few questions.
How did you feel the day after, the first couple of days, the first week? Did you experience weakness, nausea, or overall c diff feeling or something else entirely? I want to know how you initially felt.
I just can't find this info on the Web and could really use some support. I know it won't be a "wake and and be 100% miracle" but I really don't have any idea what to expect in the immediate. I plan to post exactly how I felt in these days in a few more weeks. I think it would be helpful. I appreciate ALL your time and consideration.
Amy

overit
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Re: How did you feel in the first days after FMT?

Postby overit » Fri Jun 09, 2017 6:09 pm

I had a FMT one year ago and have been cured since. I didn't notice much of a difference directly after my FMT. While I was healed from the FMT, my actual recovery or "feeling normal" took about 3-6 months. Within the first few days I felt tired and my stomach was a bit off. It slowly subsided. I kept a very mild diet for the first month or so.
Hang in there! You are hopefully on the road to being cdif free!

beth22
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Re: How did you feel in the first days after FMT?

Postby beth22 » Fri Jun 09, 2017 6:55 pm

I felt nauseated at times and had gas pains, probably from the colonoscopy itself. I did not feel the way that I did before I got c difficile and I, too, kept a bland diet.

MKW
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Re: How did you feel in the first days after FMT?

Postby MKW » Sat Jun 10, 2017 12:32 pm

Hi Amy, I had an FMT March 2nd that has been successful so far. I posted about my experience after the procedure. I think it's good to do so for others. There are a lot of people who read on this board, looking for info and understanding, but are not posting. It's helpful to others to share as much as you can!
Everyone's after effects of FMT seem to vary, but this was my experience. First day I felt euphoric, days 2-3 I felt tired and slept a lot. Could have been all the drugs wearing off. As of day 4, I felt great. Very normal. Went back to work, had a high energy level, great appetite and could tolerate most foods. I got constipated from the post-procedure Immodium however, so I didn't have a BM until maybe 5 days following my procedure day. I struggled with constipation for 2-3 weeks, but felt great. So for me, for about a month it was like I had experienced a miraculous cure that had made me healthy. I had a lot of anxiety though. Everything gurgle or pain in my GI, I would panic. During week 4, I had unexplainable diarrhea. Scared me to death, but was not a recurrence. But this further exacerbated my anxiety. I was fine again for about another month. And then during week 8 I had a lot of problems, diarrhea, gas, nausea. I was afraid to eat. This went on for about a week and then improved. Honestly I have had way more GI problems during week 8 until now which is week 14, than I did the first two months following the procedure.
In my opinion, I am going through some type of process of accommodating the donor bacteria. I am assuming at some point harmony between my physiology and the bacteria will occur. I just tell myself all that matters is that C Diff hasn't recurred, and that I am healing.
I can tell you that since my FMT, it's like I have someone else's intestines. Color, odor, activity, I mean everything is like... it's someone else. It freaked me out for a while. I'm not kidding. So, don't be surprised if you experience DIFFERENCES like this! - Melanie

kanak
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Re: How did you feel in the first days after FMT?

Postby kanak » Sat Jun 10, 2017 12:47 pm

Thank you Melanie. Unfortunately within 24 hrs of FMT I feel horrible. Nausea, weakness, feeling of having diarrhea but can't go. It feels so much like a relapse. Each time I have relapsed it has been within just a few days of stopping vanco or dificid. Since I had my last dose on wednesday and my fmt on Thursday the timeline fits for what has happened in the past. I am trying to be positive and prayerful that it isn't a relapse but I was feeling better, as usual, on the Vanco and now this. I keep thinking I'm out of tears but I'm not. I've lost over 50 lbs and am currently at 95. Prior to FMT I had had 3 relapses, 2 of them back to back from April to end of May.
I hoped for a miracle but was expecting some issues. I just didn't think I would feel like a relapse so immediately after the FMT, not.much more than 24 hours.
I'm not sure what to do from here.
Thank you all for your time and consideration.
Amy

sophie
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Re: How did you feel in the first days after FMT?

Postby sophie » Sat Jun 10, 2017 2:05 pm

Hi, have you spoken to your dr who did the procedure?

kanak
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Re: How did you feel in the first days after FMT?

Postby kanak » Sat Jun 10, 2017 2:30 pm

Hi sophie.
I had my procedure Thursday at Mayo. I won't be able to call the office until Monday.
Amy

MKW
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Re: How did you feel in the first days after FMT?

Postby MKW » Sun Jun 11, 2017 11:45 am

Amy, I'm sorry to hear you are feeling this bad, and just know that you are not alone in how you feel emotionally going through this. No one in my life could relate, still can't relate, and this is why this board is a godsend.
I am 5'4" and was 102 lbs for a while. Am now up to 110. For a long time everywhere I went, especially work, I got the looks that people were creeped out by my appearance, probably thinking I was anorexic or had cancer. It was awful.
Keep in mind, even though your doctor may not be available over the weekend, there should be a staff GI doctor on call in case you have any severe symptoms.
There have been posters on here that have not felt well after their FMT, but it not be recurrence of C Diff, including having diarrhea. I think that the foreign bacteria can just cause a wide range of physiological responses.
Also, unfortunately many people require more than one FMT. You have to tell yourself that if this FMT has not worked, that it does not mean you are hopeless.
Keep us posted on how you are feeling and what your doctor says!

kanak
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Re: How did you feel in the first days after FMT?

Postby kanak » Sun Jun 11, 2017 5:34 pm

Thank you for your support. As you know, when you've had multiple relapses you know when it is c diff. It's much more than just the diarrhea, the brain fog, nausea, fatigue. Weakness etc. That is what has come full force. The unknown is so scary. Will they put me back on vanco? Will they order another fmt right away? Can you take vanco after fmt? If not, I don't know how I will ever beat this because as soon as I come off the meds, within just a matter of 24 to 48 hours I relapse. I relapsed on difiCid before my 10 days of pills even ended. I also understand that if I test now after just stopping vanco 5 days ago I'd likely have a false negative pcr. I had two false tests fI'll owing dificid until I was past 15 days out. By then, untreated for more than 20 days I was literally not getting out of bed.
I wish I knew the answer and that my doctors weren't 350 miles away.
Thank you again.
Amy

MKW
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Re: How did you feel in the first days after FMT?

Postby MKW » Mon Jun 12, 2017 9:13 pm

Amy, I have seen different approaches on here by doctors when a first FMT fails. My doctor told me her plan would be to treat with one round of Dificid and schedule a 2nd FMT. But she can accommodate scheduling the procedure quickly with her practice. Did your doctor discuss at all with you what the plan would be if it failed?

kanak
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Re: How did you feel in the first days after FMT?

Postby kanak » Tue Jun 13, 2017 8:00 am

I was told if I relapsed in the first few weeks they would do a second fmt, if it was a long ways out, like months or a year they would do vanco taper. Unfortunately I did have a neg pcr yesterday just like the last time I relapsed. It took 20 days for a positive result so I suffered terribly and untreated for 20 days. Even the lab person said yesterday I know it's a false result but your sample is classic c diff I appearance and smell I think you should get tested again. Mayo will not treat on symptoms alone and I am so sick and I've lost 4 lbs since sat. I am losing hope and faith in the medical system. This is my 4th relapse I am absolutely sure what I'm dealing with. In the beginning I had it for 2 months untreated because I had a positive gdh and then a positive PCR but local gi doc did a colonscopy and said I don't see evidence of c diff so you don't have it. With 2 positive tests! I don't know what to do anymore.
Amy

Zapper
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Re: How did you feel in the first days after FMT?

Postby Zapper » Fri Jun 23, 2017 12:04 pm

I had 2 FMTs and both recoveries were wildly different.
1st FMT was 4/28 and I was not able to hold the donation long. By the time I got home I was having several watery bms and that continued for 2 days. On the 2nd night, I was having bms very similar to colon prep and called the on call doc and advised to go to the ER. I was c diff negative but positive for Norwalk Virus. (No idea where it came from) but after 4 more days I ended up being c diff positive anyway.
My 2nd FMT was 5/24 and I only had 1 small bm upon returning home. Then nothing for 4 days. After that it's been all over the place.. but typically 2-6 bms mostly formed a day. I have had a lot of anxiety and sleep issues since the 2nd FMT. Also, I never had food intolerances while on vanco or dificid but having HUGE problems after the FMTs.
For me, after the 1st week is when I knew I was OK and on the right path with the 2nd FMT. Everyone is so wildly different, but if I am having diarrhea or soft bms with severe urgency/pains I know I am relapsing. That only happened once after eating empanadas (stupid I know) but only lasted for the afternoon (4 hours or so) and stopped. C diff relapse only gets worse. So every morning when I have a bad bm or pain.. I just tell myself to relax and remain calm until the afternoon. Usually it stops and my confirmation its just PI-IBS.

Gab08
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Re: How did you feel in the first days after FMT?

Postby Gab08 » Tue Jul 11, 2017 10:50 am

Hi everyone
I've learned so much from reading this thread. I am now 5 days post FMT (first one). I was worried in that I had terrible abdominal pain, nausea, could not eat, no appetite, and rectal bleeding. I was constipated, but had a bowel movement today. The smell is really bothering me. It was formed stool but small. Has anyone had "that smell" after FMT? The doctor who performed the procedure won't return any of my messages. I am pretty much on my own.

Thanks!

MKW
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Re: How did you feel in the first days after FMT?

Postby MKW » Thu Jul 13, 2017 11:20 am

Hi Gab08, I am 4 1/2 months post FMT and have done well so far. Hope your doctor has returned your messages! I can tell you... for me everything was different after my FMT. Still is. Odor, bowel activity, sensations. I say I feel like I have someone else's intestines. I was very constipated the first couple weeks. ... but no C Diff recurrence! so that's what matters. People seem to experience a wide variety of weird bowel activity post-FMT but success rate for C Diff is very high.


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