Frustrated 5 days after FMT

If you have had or are considering an FMT please share your experiences here.
MrsM25
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Frustrated 5 days after FMT

Postby MrsM25 » Tue Jan 09, 2018 9:30 am

I just don’t know what to think these days, I’m so frustrated! I’ve been running temps for the last 3 days after my FMT on Friday. They fluctuate anywhere between 99.2-101.1 F. I still have yet to have any formed bowel movements and my bowel movements have the familiar “smell” with some mucus as well. They aren’t straight watery diarrhea but I didn’t always have straight watery diarrhea when I was cdiff positive. I also get the stomach cramping with the bowel movements. I’ve got that general flu like feeling (body and muscle aches, feverish feeling). It feels exactly like when I relapse. I went to the ER yesterday at 2:30am because I had a fever of 101.1 F but the GI doesn’t seem concerned yet. They swabbed me for flu and RSV and it was negative. They gave me fluids and sent me home. So, here I am again this morning, temp is 99.5 F. This just doesn’t seem normal to me. I called my GI’s office this morning and the nurse told me that they usually won’t test for cdiff for a couple of weeks after FMT so I have to suffer it out I guess? She said she would message my GI because he’s in surgery today and get back to me. Here’s the thing, I’m really not looking for a magic cure, I understand that this is a long process and FMT doesn’t give you some magic cure overnight but I didn’t expect to feel like I’m relapsing every day with fevers and everything. Please tell me, is this normal? What am I suppose to do? I’m 29 and I’m a stay at home mom, I have a 4 year old and an 18 month old that need me and my husband can’t keep staying home from work because I’m going to the ER or something.

Machaon
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Re: Frustrated 5 days after FMT

Postby Machaon » Tue Jan 09, 2018 8:28 pm

You had huge amounts of different beneficial bacteria inserted into your gut, many of which your body has never grown a defense for, or an immunity against, or adapted to. How your complex system reacts to this enormous helpful invasion is anyone's guess. In most cases the body adjusts over time and c-diff becomes just a horrible memory!
Male, age 73. South Florida. Retired senior computer systems analyst and programmer.

30+ yrs of CHF, perm afib, extremely sensitive asthma, autoimmune. Ex C-diff?

Diet: 7 low cal meals, 1500 cals, 4 eggs per day, 3 large salads, cereal, yogurt, cheese

beth22
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Re: Frustrated 5 days after FMT

Postby beth22 » Wed Jan 10, 2018 2:29 am

We had a poster from Florida who actually caught a different pathogen from the stool used in her transfer. It is very rare, but it can happen. She did not use OpenBiome, but also some donor bank. Do you know who your donor is or did you use a bank?

MrsM25
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Re: Frustrated 5 days after FMT

Postby MrsM25 » Wed Jan 10, 2018 8:23 am

It was from openbiome

MKW
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Re: Frustrated 5 days after FMT

Postby MKW » Wed Jan 10, 2018 11:43 pm

Hi, my stool donation came from OpenBiome too. Their donors are extensively screened. Please keep us posted on how you are doing! I'm so sorry to hear you are going through this amount of stress and uncertainty.

beth22
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Re: Frustrated 5 days after FMT

Postby beth22 » Thu Jan 11, 2018 12:40 am

I have not heard of any contamination issues with OpenBiome. Maybe you have a virus.

MrsM25
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Re: Frustrated 5 days after FMT

Postby MrsM25 » Thu Jan 11, 2018 1:38 am

Thanks, I ended up going back to the ER today. This was the 4th day of consecutive fevers and my heart rate has been really high. My resting heart rate at the hospital was almost 120 and temp was 99.7 F so they were very concerned about that. I had tons of tests done. They did an EKG, blood work, a CT scan of my abdomen and a chest X-ray but everything came back normal thankfully. They gave me 3 Tylenol and 2 bags of fluids and my heart rate came down to around 92 resting. Still not my normal but in normal range. They basically told me that because everything looks fine on my tests, I’m not having diarrhea and my blood work was all normal, they can only assume that the temps and the heart rate are all side effects of the FMT. Just my body’s reaction to it, I don’t know. I was there for about 5 hours. They told me they weren’t going to let me go home but since they got my heart rate lowered and my tests were all normal, they felt comfortable discharging me. Hoping that the temps subside soon and that even with all of these side effects, it seems like so far the FMT is working. Glad to be home in my own bed for the night, hoping there is a light at the end of the tunnel soon.

roy
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Re: Frustrated 5 days after FMT

Postby roy » Thu Jan 11, 2018 7:56 am

Anxiety might be a big part of your ongoing problem.

MrsM25
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Re: Frustrated 5 days after FMT

Postby MrsM25 » Thu Jan 11, 2018 9:51 am

It’s possible because I do suffer from anxiety but that doesn’t explain the fevers. Atleast when they gave me the fluids and the 3 Tylenol, it brought my heart rate down enough to be in a normal range. I’m not exaggerating the flu like symptoms though, that’s for sure. I’m sure that things will subside in time since they have found no solid reason for it. They still think it’s my body’s reaction to the FMT.

Machaon
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Re: Frustrated 5 days after FMT

Postby Machaon » Thu Jan 11, 2018 11:49 am

The body's normal reaction to a bacterial, viral or parasitic invasion is higher temperature, higher heart rate and higher blood pressure. You had a massive invasion of helpful bacteria that was probably foreign to your system.

There is also the possibility that a very hard to detect virus or parasite was able to get thru the FMT screening undetected, and which would also be difficult to detect in the ER.

Regardless, let's hope that your days fighting c-diff are over!

Regards, Bob
Last edited by Machaon on Thu Jan 11, 2018 12:05 pm, edited 2 times in total.
Male, age 73. South Florida. Retired senior computer systems analyst and programmer.

30+ yrs of CHF, perm afib, extremely sensitive asthma, autoimmune. Ex C-diff?

Diet: 7 low cal meals, 1500 cals, 4 eggs per day, 3 large salads, cereal, yogurt, cheese

roy
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Re: Frustrated 5 days after FMT

Postby roy » Thu Jan 11, 2018 12:03 pm

Please don't let the posts about introducing a bad bacteria from the FMT worry you.
It's very unlikely and very rare.
You had a lot of treatment in a very short time period and your body has to recover.

amg
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Re: Frustrated 5 days after FMT

Postby amg » Thu Jan 11, 2018 1:49 pm

FMT can cause transient fevers, from a couple of papers I read. There are various opinions on why that happens.

There are also lots of viruses going around now that aren't flu, and many people going through c diff or early recovery from it will say that their immune systems aren't that great. I know my daughter caught a lot of colds and such during that time.

You're right to keep a close eye on this, though.

Good luck. I hope you feel better quickly and beat this!

MrsM25
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Re: Frustrated 5 days after FMT

Postby MrsM25 » Thu Jan 11, 2018 4:25 pm

Thanks everyone! It’s been a stressful week but I’m hoping that things are looking up a little. My heart rate is down in the 70’s today resting. I have been able to keep the fevers under control with Tylenol. Hoping that this is a good sign.

beth22
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Re: Frustrated 5 days after FMT

Postby beth22 » Fri Jan 12, 2018 3:15 am

We have had a flu epidemic here in CA. My husband's 84 year old cousin has been hospitalized for a few days with it. She has been running fevers too and her heart rate was 140 (resting). Her BP also was way up. She is being treated and the fever finally subsided and the BP and heart rate normalized as well. A virus can do this too. I would think that if the FMT gave you a bacteria, you would be having lots of D. A parasite would cause D too. I got a low grade temperature after having a double FMT procedure, but it only lasted a day and I also had a sore throat. I went to ER and they thought it was a virus because of the sore throat and slight runny nose. It went away.

It sounds as if you are doing better. I would try to rest and relax. In December I went to the ER with BP that spiked all of a sudden and some other symptoms. I think my anxiety definitely contributed to the problem. I had not had high BP in years. If you are still having problems next week, perhaps you should go and see an Infectious Disease specialist. Whatever you have may or may not be related to FMT. Hopefully, it will just subside and you won't have to do anything further.

MrsM25
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Re: Frustrated 5 days after FMT

Postby MrsM25 » Sat Jan 13, 2018 10:32 am

Today is Day 8 since having my FMT done. Fevers I believe have thankfully subsided! I’ve still been having some slight body aches off and on but not like I was. Heart rate has gone back down to my normal which is a relief! Bowel movements are still a little bit all over the place. Seems like the last 2 mornings, I’ll have a loose/mushy movement and then I feel sort of constipated the rest of the day. I feel like I have to go multiple times throughout the day but I feel like I struggle to get it out and when I do, it’s just a little bit at a time. Good news is though is that it’s mostly trying to be formed so, I’ll take it! This is the longest period of time since I started with this awful C diff at the beginning of October that I haven’t been on vanco or relapsing so I feel hopeful right now. Still scared of relapse of course. What is the point in which you all have stopped being very worried that you could relapse after FMT? I’m sure it’s always a thought but what is the so called danger period? 4 weeks? 8 weeks? 12 weeks? Thanks!


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