EARLY FMT CONCERNS

If you have had or are considering an FMT please share your experiences here.
MSLOANE
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EARLY FMT CONCERNS

Postby MSLOANE » Fri Nov 08, 2019 5:20 pm

I am hoping this thread will eventually turn into a success story, however, I am extremely concerned, disheartened, and depressed.

It has been 4 days since I got my FMT and 2 days since my last follow up enema. To say my guts have been a jumbled, weeping mess is an understatement. My sleep is "anxiety sleep" and it is not good. Nightmares, sweating, tossing and turning, rapid heart rate and palpitations, all of it. I am a pale white ghost, physically, mentally, and emotionally and I am struggling at how I move forward with my life as a husband and soon to be first time father. I feel totally dismantled and I have let down everyone that cares about me in more ways than one and I feel I am on this path to complete and total destruction, exactly where CDIFF and it's associated brand of anxiety left me 6 years ago. Broken with long lasting PTSD that I suffered from up and until this new CDIFF infection.

I have not had a normal bowel movement since the procedure. The first few I had were basically mush, which I expected, but as I get closer to a week I was expecting them to start taking on more form. Unfortunately, this morning, I woke at 5AM to diarrhea, and then at 8AM with some follow up, which was more formed but also still with diarrhea (both loose mixed with watery d). I had a lot of cramps yesterday too which precipitated this and got my anxiety motor humming. Also, the rumbling from my bowels is absolutely legendary and starts in the right side and moves left. I have never heard anything like it in all my life, and the stench is something foul but does smell like "normal" loose or D and not that funky chemical scent of CDIFF. Sorry for TMI but it is important to any one else that may go through this hell.

I didn't have a reaction like this when I attempted the enemas, which failed. I guess that could be good or bad?

My mom says that this is exactly how i reacted after my last FMT 6.5 years ago, she even showed me some emails I had sent her that are excruciatingly similar to the things i am saying now - but I don't remember it being this bad. Even though this same Dr did a transplant years ago and fixed me it took me months to believe. And i am back tracing through painful history every day this goes on.

I guess I just have fears, that since this is the last stop on treatment train, that this did not do the trick and that means I am screwed. I know I was expecting too much too soon but at the same time I need to start seeing results or I am going to end up in the "test panic test" desperation mode. My anxiety is already through the roof and all I do all day is obsess over this, being negative and waiting for this evil beast to resurface. Funny thing is, I could care less about these symptoms if it could be proven it was just "IBS". I could go on and be normal. But i am caught up in mental anguish obsessed that they are NOT normal and are signs of a relapse.

i also think it would be rare to relapse so fast after FMT... logical brain...

I talked to my Dr who said to hang in there and call him if there was blood.

There is no blood far as I can tell, some mucus for sure, but very little. It doesn't FEEL like CDIFF with the incessant cramps and constant D with mucus and blood, and I actually feel a little more settled than this morning but barely and I do feel more D coming.

As far as diet goes, I have cut out 90% of sweets and tried to add some fiber but that backfired, as well as did the addition of nuts. For now I am just going back to how i was eating before, minus the sweets, and hoping things turn around. I don't want to add anything new to the mix and end up conflating ibs/food sensitivity with IBS.

I want to say I am starting to heal and this will all end up with success but i am filled with FUD (fear, uncertainty, doubt). Even though i know this is the cure, I am having trouble seeing it from my vantage point.

beth22
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Re: EARLY FMT CONCERNS

Postby beth22 » Fri Nov 08, 2019 7:14 pm

It could be that the laxative prep that you took irritated your intestines and is still working to an extent. Some people have D after FMT for a while. It doesn't mean that it didn't work. I would definitely eat bland until things settle down. Nuts and fiber are not really good. Try rice, baked potato, baked chicken, fish - stuff like that. Stay away from sugar and dairy.

MSLOANE
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Re: EARLY FMT CONCERNS

Postby MSLOANE » Fri Nov 08, 2019 8:22 pm

My most concerning symptom are the cramps I think. Is that normal post procedure too?

beth22
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Re: EARLY FMT CONCERNS

Postby beth22 » Sat Nov 09, 2019 12:25 am

I think I had them too, but it's been a while. Remember, you had a laxative prep and then the colonoscopy tube in your intestines. Even on a healthy person, that is irritating. I remember when I had a colonoscopy before I ever had c diff, I had D for a few days afterwards. I'm not sure if it was the laxative or what, but it took 4 or 5 days and in those days, I was C. So, with an irritated colon, this is even worse. Give it time. Eat bland food so as not to irritate your intestines any more. I also found that I could not tolerate some foods after FMT. So add gradually.

MSLOANE
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Re: EARLY FMT CONCERNS

Postby MSLOANE » Sat Nov 09, 2019 1:55 am

Yea, its strange, i had very little discomfort after this scope compared to one I had prior which was awful and took days to feel normal. Ultimately, unless I am relapsing I believe the pain I am feeling is due to my pelvic pain and ibs acting up. Our poor intestines, its crazy. thanks.

MSLOANE
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Re: EARLY FMT CONCERNS

Postby MSLOANE » Sat Nov 09, 2019 2:10 pm

Been having horrible cramps and woke up to WD 2x. There is no blood or mucus, but I’m suffering all the same. I put a call into the dr who says that this can happen post transplant and can take up to 6 weeks. To control diahreea with immodium but I’m afraid that will just trap the toxin given the state of abdominal cramping I have. I don’t remember it ever being this bad before. I got up this morning to do a test at urgent care but he says it was pointless given proximity to the transplant and that it can take time to work. I’m really struggling both physically and emotionally. This feels precisely what cdiff feels like maybe even worse but blood and mucus are absent. Honestly I’m terrified it’s a relapse even though I got reassurance I can’t imagine being in this much pain without an active infection.

MSLOANE
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Re: EARLY FMT CONCERNS

Postby MSLOANE » Sun Nov 10, 2019 3:02 pm

Will be posting daily/weekly to both help myself and help anyone else going through these problems.

Day 6: I started to feel better last night and the cramps diminished a bit but still mostly there. I did not have another stool after the morning diahreea. I slept very well all things considered and I did not have any cramping at night.

Day 7: I woke to have my morning BM. This was the most “solid” one I have had yet and I take that with a grain of salt. It was still loose and floating mush but there was some semblance of form and no blood or mucus. Cramps began after the stool and I anticipate they will be with me all day until the evening. I feel like I have to go again but nothing comes. Overall the cramps are not as bad as yesterday, my mental state is also a bit better not sure if the two are 100% correlated.

Things that have been helping me: heat pad, hot shower, sits bath, smoking marijuana as it is really quite good for ibs, and relaxing breathing/stretching.

Still not confident this is just “pi-ibs” as I feel like I’m still infected but only time will tell.

roy
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Re: EARLY FMT CONCERNS

Postby roy » Sun Nov 10, 2019 3:15 pm

We discourage day by day poop reports but you could start a thread in case histories if you want to keep this type of diary.
NO replies are made in that section of the site.
I am locking this thread now.


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