Need Advice 6 YEARS post FMT

[georgina]

Well , my first time with Cdiff has been all day D , with excrucianting abdominal pain,just couldn't stop going , no blood , but did have mucus . After two days of this , finally the doctor agreed to take a stool sample and do complete blood work . All the blood work was normal , stool sample came back positive for toxins.

[MSLOANE]

Update:

After 6 more days on vanco and feeling like absolute crap, which I attribute to the generic manufactured pills by Lupin, the doctor pulled me off of it and did an FMT. I actually questioned if that medication was even effective. I felt horrible on it, and while on the liquid i felt great. Normal. While on that Lupin stuff i felt very similar to how I felt on Flagyl, just not to the same degree.

I stopped the vanco on the night of 11/1 and began the prep on 11/3. Frankly, I was feeling pretty good these two days to my surprise. The prep was easy - and on 11/4 I underwent colonoscopic FMT.

Overall the process was pretty easy and I felt much, much less discomfort after this colonoscopy than I have in the past, probably because I had my hemorrhoids reduced and there was no bleeding either in the prep or during the scope. I held the transfer from probably 1:15 to about 4:00 - it was placed near the cecum. The doctor noted congested rectal mucosa in the sigmoid which i think is from c-diff no one could really give me a good answer there. When I did finally go to the restroom I did not poop out much and I think a lot of the liquid was already being absorbed and finding a new home and since placed near the cecum, given a chance to colonize the entire intestine rather than just the sigmoid.

He wants me to follow up with 2 home enemas, which his office prepared from the original sample. I did one this morning before work, and the moment I squeezed it, about 20% went in and another 50% went all over my ass-cheeks and drenched my brand new remodeled bathroom tile, missing the towel and absorbent pad they gave me... how nice... Ive been sponge scrubbing my new bathroom while the dog is barking at the construction crew in the other bathroom. The other 30% i transferred into another enema bottle i had and got it all in. I retained all of this first dose.

I will use the second one he gave me today to ensure I am not "missing" any follow up doses, and then create a third enema from another sample of my original donor, which I will do tomorrow to "complete" the treatment.

Overall I have very little discomfort and I have not gone to the bathroom for real just yet but I feel it coming.

It is my hope that I can finally put this misery to rest and move on with my life. He said his success rate is at or near 100% if I follow his instructions. He stated his failures have been from a donor that had toxin/colonization, and when someone used a separate donor from fmt for the enemas. Given that my donor passed all the health screens, I think everything will be ok on that end, so if it fails it is just treatment failure or somehow the stool was contaminated during collection. This worked the last time, as it was with same Dr but a much less controlled process. So we shall see. nurses were saying people come from all over the country to have this done at his facility. It was overall very easy and comfortable, all things considered, and his facility is only five minutes from my house. This should be frontline treatments.

[MSLOANE]

I am on my second day post FMT. The first day I didn't really do much of anything, but got back to eating, there were no stools outside of what I lost due to the FMT.

Fast-forward to the first day post, there was definitely some loose that was related to donor material, but no substantial BM.

Today is the third day, and I woke up with urgency and loose stool, but not mucus or blood to be seen. Also, I did have collard greens last night so I was extremely bloated. That was about 8AM - Then i got to work at 930 and started to feel the after birth coming - which was diarrhea and unfortunately i was so busy I ended up having to hold it in my rectum almost all day. When i got home that is when I realized it was D.

Obviously now i am worried that the transplant was not succesful. I do remember having a lot of issues post transplant last time and I do have PTSD from it. Honestly, I am looking for some feedback here. Can someone please let me know if diarrhea post transplant is normal? i read in the FMT section a lot about post transplant woes but most people just mention loose or mush, not particularly a pile of D. My mind is already off to the anxiety races.

I just did my second follow up enema and was able to retain it. At this point I dont remember or know what to expect, all i really remember is all the mental anguish and psychological pain and anxiety i endured but the physical stuff, i just dont recall only that eventually i beleived i was recovered and finally moved on with my life.

[georgina]

You need to have a little patience , the first two weeks after FMT are very hard weeks, as the new bacteria settles in .I remember the first month after my FMT , it was really hard , i had to take imodium just to be able to stay at work .
As we keep saying "FMT is not a magic cure" , do not expect results overnight .

[roy]

What you describe has no resemblance to c.diff D.

"i was so busy I ended up having to hold it in my rectum almost all day. When i got home that is when I realized it was D"
That's NOT D!

[MSLOANE]

Agree. This morning was loose still and I still have some cramps and really bad bloating. I do remember the bloating last time and there was a lot of discomfort to the point that fir three months I thought I was relapsing. I only vaguely remember. I’ll give it time. Forgot what a psychological menace this thing is.

[Bobbie]

MSLOANE,

C diff is difficult physically, mentally, and financially. Hang in there. Best wishes.

[MSLOANE]

Still having the loose stuff along with cramps, generally pooping 2x a day but cramps coming and going. There is no blood or gross mucus in the stool but the cramping is a concern for me. Is this normal? Dr called me today just told me to hang in there didn’t really get much advice other than Ibs can happen.

[roy]

Good advice from your Dr.
Little indication of c.diff and no need to treat or test.

I am locking this thread now as its reached the maximum pages.
If c.diff symptoms return you can start another thread.