The end of my first day post FMT

If you have had or are considering an FMT please share your experiences here.
MrsM25
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The end of my first day post FMT

Postby MrsM25 » Sat Jan 06, 2018 11:36 pm

Posting just to release some of my anxiety. It’s hard when no one in your actual life quite understands the stress that cdiff can cause. I’ve always had anxiety but since I got cdiff, it’s been through the roof. So, I really just want to say how thankful and appreciative I am for all of you on this site. You all really are a God send for me.

I’m currently finishing up my first day post FMT. I had my FMT done yesterday at 11am. All seemed to go well. My colonoscopy came back completely normal with no inflammation at all. I was able to hold the FMT for just under 2 hours and then I had to let some out. I was able to hold some more for about 5 hours and then most came out. Today was pretty uneventful. I woke up energetic and decided to take down all of my Christmas decorations and clean the house. I have had a few twinges here and there and some gas pain. I haven’t had a formed bowel movement at all. All have been loose/mushy. I have had a few today even though I had 4 Imodium all together yesterday for my procedure (2 before and 2 after). A few hours ago I had some stomach cramping and had 2 mushy bowel movements but it has seemed to subside for now. My GI doctor told me to expect colitis symptoms this weekend following the FMT and not to freak out. He said the body often doesn’t like this after it is done and you can have symptoms similar to relapse. Emotionally I have had my ups and downs today already. I woke up extremely happy and relieved but then I get those thoughts of failure. It’s so hard to shake that when you have relapsed so many times. I’m trying to stay positive though. I have the 8 week mark set in my calendar on my phone as a milestone setting, praying I make it there!

beth22
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Re: The end of my first day post FMT

Postby beth22 » Sun Jan 07, 2018 1:00 am

Try not to stress. Bms can be all over the place. I had a lot of food intolerances too. Even someone who just has a routine colonoscopy can have mushy stools for days.

roy
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Re: The end of my first day post FMT

Postby roy » Sun Jan 07, 2018 7:57 am

It can take many weeks or months to get back to normal and anything other than frequent watery D is normal and expected!
There will be days when you think it's back but don't panic into treating or testing.
The FMT has to multiply and return your gut flora to a balanced condition that overcomes the bad bugs and that takes a long time.

MrsM25
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Re: The end of my first day post FMT

Postby MrsM25 » Sun Jan 07, 2018 10:18 am

The waiting is the hardest part. Just trying to take it a day at a time right now. Today is a tiny victory, the last time I relapsed, I was only 3 days off of vanco. Today is day 4 so, small victories! I will take any. The longest I’ve ever gone off vanco since cdiff began was 6 days. That will be my next stepping stone.

Ril
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Re: The end of my first day post FMT

Postby Ril » Sun Jan 07, 2018 11:37 am

Think positive...it’s a new year!

MKW
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Re: The end of my first day post FMT

Postby MKW » Sun Jan 07, 2018 12:57 pm

Hi, the best advice I have ever gotten on this board was so simple, but so helpful. Live your life one day at a time. ... c Diff causes so much anxiety and worry it will recur no matter how far out you get. Be prepared and have a next plan of care with your doctor. Otherwise, to the best of your ability wake up each day and live the most you can. Try to focus on the now, and get the most you can out of each day. People have a wide range of symptoms after FMT, anything from bad constipation to ongoing D. But yet it works!

MrsM25
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Re: The end of my first day post FMT

Postby MrsM25 » Sun Jan 07, 2018 6:40 pm

Is it normal to have a “cdiff” smell after FMT? I still am having some mushy stools with some abdominal cramping and some mucus. No fevers or flu like feeling like I would get with relapse. I know my doctor said to expect some colitis symptoms over the weekend following the FMT but is that smell normal and can you have it even if you are cdiff negative? It’s kind of freaking me out!

MKW
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Re: The end of my first day post FMT

Postby MKW » Sun Jan 07, 2018 7:33 pm

Over time reading on here, the “smell” issue seems very subjective. Some people have none, and everyone seems to describe their c Diff smell differently. In my experience since my FMT Ten months ago I have had multiple times of loose BM’s that I thought were my C Diff smell. And it was not a recurrence. You just got trillions of bacteria possibly like a thousand different types put in your body that are not natural to your physiology. These bacteria may produce gases or biproducts that are different to you. So, from my experience I would not let smell alone cause you fears. The biggest indicator of c Diff for most people is “watery D”.

MrsM25
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Re: The end of my first day post FMT

Postby MrsM25 » Sun Jan 07, 2018 7:58 pm

Is low grade temp normal after FMT? Mine is 99.2 F

roy
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Re: The end of my first day post FMT

Postby roy » Sun Jan 07, 2018 8:51 pm

The average normal body temperature is generally accepted as 98.6°F (37°C). Some studies have shown that the "normal" body temperature can have a wide range, from 97°F (36.1°C) to 99°F (37.2°C). A temperature over 100.4°F (38°C) most often means you have a fever caused by an infection or illness

MrsM25
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Re: The end of my first day post FMT

Postby MrsM25 » Sun Jan 07, 2018 9:00 pm

I called my on call who is actually my GI’s father. He’s the head of the practice and was the first one to do FMT in my area. He said that these things have been reported along the way and to just monitor it. He said not to take anything to bring it down at all and to just leave it alone. He said the success is between 95-98% for them and this is something he hopes just subsides in a little bit of time. So, just trying to relax a bit. He told me to call the office in the morning if it is getting worse.

Julian80
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Re: The end of my first day post FMT

Postby Julian80 » Sun Jan 07, 2018 9:30 pm

Hello MrsM25
I think your GI is correct in letting your body get over the fever,I have read some articles online that state some patients experience fever due to the new bacteria and your immune system getting used to it.Hang in there and stay strong and try not to worry as the anxiety does not help.Keeping you in my prayers and I'm sure you'll be fine..

beth22
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Re: The end of my first day post FMT

Postby beth22 » Mon Jan 08, 2018 2:39 am

I had a low grade fever after my first colonoscopy FMT two days later. I thought it was from the FMT, but I also had a little bit of a sore throat. The fever only lasted a day and then did not return.

MrsM25
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Re: The end of my first day post FMT

Postby MrsM25 » Mon Jan 08, 2018 2:36 pm

I ended up going to the ER at 2:30am because my temp was 101.1 F. They did blood work and it was normal. WBC count was normal. They gave me fluids because I was a bit dehydrated. I went almost 24 hours without having a bowel movement. I finally just went. definitely has that cdiff quality but it’s not liquid diarrhea so I’m still just riding it out. Temp is down a bit now again to 99.2 F. GI still thinks there is hope with the FMT so they sent me home. They didn’t do a stool test but I probably wouldn’t have been able to anyway because I didn’t go until just a few minutes ago. I’m suppose to go in on the 15th for a follow up appt with my GI and call before then if I have more problems.


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