Having hard time after FMT

[Ali-Mar]

Thanks Georgina for the heads up, yes I have been on bland Low FODMAP since c Diff started.

I haven’t had any BM in last 50 hours.. thanks for the head up Roy, I would have been freaking out if u didn’t mention it Will happen

D1dad I am feeling okay, I have constant abdominal pain about 1 inch to the right of belly button in small intestines, I think this where they spry the donor stool, where the small intestines connects to colon.

I was on Dificid for one week up to 28 hours before the FMT, I always felt somewhat normal after 2-4 full days of Dificid, and even up to 2-5 weeks after completing the antibiotics. That said, unfortunately I am not too optimistic yet, and I’m still very suspicious. I am spending a lot of time in bed and staring at the walls. I took this week off, and I was hoping to spend it finding Naturopathic dr in South California that can help with Poop Pills, enema and rebuilding my gut flora, but unfortunately cannot focus and find the motivation to do it. I think I might feel little safe if I pass the 5 weeks post my last Dificid pills.

My biggest issue is that I didn’t have a GI or ID doctor, that has an strategy and a plan for me. My PCP is a vey nice dr but he doesn’t know much about C Diff, and my GI for last 4 years that I trusted so much is the one that prescribed Flagyl to me, I lost my faith in him. I found two new GIs but I’m just a new patient to them and they know of each other so neither one takes me seriously as they assume the other GI will take care of me. The UCSD GI that did my FMT has no opening until end of Sep she is so busy and don’t have time.. my new Scripps GI don’t do outpatient FMT due to shortage of stool supplies due to COVID. I am hoping for best but planning for 2nd and 3rd FMTs and maybe poop pills etc. I think if I get to 6th week post treatment I will see the light at end of tunnel but not yet :-((

It has been very hard with kids at home and trying to stay strong for them the timing couldn’t be any worst

Someone on Facebook gave me the info on the following company that makes poop pills, has anyone used it or heard of of it? I will search the site for it

https://www.floramedicine.com/fecal-transplant

I had the FMT 3 days ago and today I started coughing, it is scaring me little that I might have picked up COVID at the hospital during the FMT, if it continues one or two more days, I will ask for a COVID test..

Ali

[roy]

Your thinking way too far ahead and planning for more FMTs and or poop pills is likely to cause a LOT more harm than good.
Your treatment so far has been strange, nothing like normal guidlines and that's not good.
Find a Dr you trust and follow their advice instead of chasing as much treatment as possible.
C.diff is caused by an imbalance in your gut and all the extra treatment adds to it!

[Ali-Mar]

Roy I am not asking for more treatment I am just preparing and getting ready at the event of more relapses. I feel I need to be prepared in case if it happens

[D1dad]

I understand all the “what if’s” racing through your head, I was there with ya. Obviously my case was nothing like your from a treatment standpoint. But I was a beyond healthy 46 yr old who went from fine one day to using the bathroom 30-50 times a day. Something ruptured inside and I lost a lot of blood which is why I sought treatment. Trust in the fact that what you had done has over a 90% success rate. Plus your in California, go buy some weed and just chill. In all seriousness though just relax even though it’s hard. I never gave a thought to my health but after cdiff I self diagnosed everything from my gallbladder to anal cancer so I get it. God willing and the creek don’t rise this will all seem like a bad dream in 6 months.

[Ali-Mar]

D1dad, Im more of a beer drinker, but it’s funny u said that, since I cannot drink, and haven’t had any since Feb, several times crossed my mind to go buy some weed, but I am worried about COVID. Last time I was there, was about 2 years ago the store was very small and crowded, I bought a lot at that time, so I still have some left in the garage but I am afraid to smoke it since it is two years old... I wonder if weed expires.

[roy]

o((⊙﹏⊙))o

[D1dad]

It don’t go bad lol. I guarantee in a few minutes you won’t remember you had cdif. Although you may go off of your bland diet lol.

[Ali-Mar]

Roy, I have been going to my current dental hygienist every 4 months for regular dental cleaning for last 3 years, and on most of the visits she injects
Minocycline ( Arestin ) antibiotic under my gum in deeper packets as a precautionary measure. She has done that for over 3 years, I dont think I have any flora left in my gut!!! So I wouldn’t be surprised if I would required multiple FMTs to recover my gut biome. I asked her if this method is safe and she yes it is only local ... but apparently it was not

[roy]

FMT seeds your gut with a very tiny amount of gut flora, it does NOT instantly replace your flora, it has to multiply naturally and do so faster than any remaining c.diff does.
Going through the process of multiple FMTs will wipe out the benifit of the previous one or even compete with it!

[Ali-Mar]

Thanks, Roy, good info to know. I hope my FTM will work and I won't need any more treatment. keeping my fingers crossed.. But after so many failure is hard to be optimistic. I have a crazy thought, I think the spores and CDI is in my small intestine unlike most that is in their colon. I say that because, majority of my abdominal pain is in middle around the belly button, where the small intestine is.. that worries me that I might relapse again and need to get FMT in my small intestine vie Upper Gi tracts, I hope not... but that is what is running through my mind. I realize FMT has around 90% success rate, but based on online dr Dale N. Gerding, MD from HCP life Daficid taper has 95% success rate which didn't work for me that puts me in 5% :

https://www.mdmag.com/peer-exchange/bes ... -infection

Finally I had my the first bm after 74 hours, surprisingly , it was semi-formed, which is my new normal ( after C Diff normal ) when I am on antibiotics and don't have an active CDI.

[DaveMal]

Bear in mind that 95% success rate was for the 20 pill Fidaxomicin tapered regimen for initial episodes, not multiple recurrences. Also I don't know if anyone has tried to duplicate those results yet. FMT's are used primarily for multiple recurrences after several failed rounds of antibiotic therapy. So I wouldn't compare the FMT stats to that 95%. I agree with Roy and others that it wouldn't be prudent to seek upper GI administration of FMT yet. Even if...IF you were to need more treatment, probably the same colonoscopy method would be the preferred option.

Since your experience post FMT seems to correlate to other successful cases, I wouldn't stress about the small intestine. CDI stresses the whole system and can cause a wide range of discomfort. You've been through a lot; just try to relax, follow the doctors' orders, and see what comes.

Wishing you well. Take care.

[Ali-Mar]

Thanks, Dave, what you state is very logical and makes a lot of sense. I will be just waiting and see if I can pass the 6 weeks mark without a relapse.

I am physically feeling a little better after the FMT, no more bloating, and much milder abdominal pain. The pain is normally around the navel, moves back and forth between the right and left of the navel.

[Ali-Mar]

Having so many mild cramps today, it is making me very nervous. Bowels are not but, had two BW that were semi formed which is my new normal. But the cramping is causing a lot of concerns