7 weeks post FMT and extremely nervous

[linnyg]

Hi, everyone. Things had been going very well up until last week, other than some constipation issues. I have been careful with my diet, eating lots of fiber rich foods and trying to avoid as much sugar/carbs as possible. Drinking Kefir water because I cannot do dairy.
Last week< I had one day of some pretty bad D. Not watery, but bad cramping and copious amounts of D. No c-diff smell.

This week, I had the same thing happen on Tuesday. But now, that burning/pinching/feels like a rodent is clawing my insides (mostly near ribs like before) is back. Today, my lower back hurt so bad, I had a heating pad on it, when it wasn't on my stomach. I'd say my pain is at a 6, pretty close to where I was 2 days before my FMT. (colonoscopy)

This morning, I had urgency, but no BM, just clear mucus. Tonight, I had the dreaded "fluffy" golden orange BM with extremely loud rumbling in my stomach, and bad cramping.

How long should I wait to see if this is just "something I ate"? Should I wait the 3-day rule or just make the jump and call my gi? Have any of you had symptoms like this post FMT, and was it c-diff again, or just IBS? Im hoping it is just IBS, but this pain and the look of it is all too familiar.

[amyc]

Call your GI ASAP. They know you and your case better than we do.

[linnyg]

Thanks. I will call them first thing in the morning.

[linnyg]

I am positive for c-diff again. My gi put me back on Dificid and I will have another FMT within 3 weeks. They will be using Openbiome this time. I feel so very defeated, and I cannot believe this. I had almost 8 weeks under my belt, Ive been fighting this since last August.

[amyc]

I'm so sorry to hear that. Lots of posters have had good luck with open biome donations. Hopefully this FMT will be the end of C diff for you.

[beth22]

I had to have more than one FMT as well. Others have too. Hopefully, this next one will do it for you.

[MKW]

Hi LinnyG, I am sorry to hear you are going through this. I had my first FMT done about 3 1/2 weeks ago, and have been fighting C Diff since August also, after taking Clindamycin from my dentist. The last two times my C Diff recurred was a month after treatment. So I have a history of recurrence after long windows of time of being well. And no clue why. I do everything right. This illness is so hard psychologically because of the potential for recurrence. I have told myself since my FMT that I know many people require more than one, and that I am on a path to recovery but it may not be perfect. Of course, I will be horrifically disappointed if that happens and I am very scared. But, with your first FMT you have reestablished healthy bacteria. With Dificid you at least won't kill off all your beneficial bacteria. And then with another FMT you should make even more progress. You will eventually beat this. And it sounds like you are receiving decent medical care. Especially, since you will be able to have the next FMT done within such a quick timeframe. BTW, my donation came from OpenBiome.

[georgina]

Sorry you relapsed , I can relate to the tremendous frustration and disappointment as I also had a FMT that failed after 7 months , I remember how discouraged I was when I saw the positive test results. Unfortunately , for some of us it takes more then 1 FMT to get better , hopefully the next one will do the trick.

[Davidtm]

I'm sorry to hear you relapsed and especially so long after treatment. Makes me wonder the mechanism for why relapses can happen so far out. My first release was 32 days post meds. I also wonder about how asymptomatic carriage plays into it. Before c diff we've all had off days. Maybe even a few off days. A carrier with an off day or two will be treated for "active infection" if they test positive. Example a carrier with stomach flu who tests would be perceived to have active c diff infection. Unless I'm wrong in that. I know the 3 day rule is good because most things improve by then but sometimes it's so bad you have to be seen asap when symptoms present.
Hopefully your next fmt does the trick! Best of luck and good vibes from me to you.

[linnyg]

My doctor says the fact that I had my gallbladder removed 17 years ago is playing a part in this, and is looking into some additional supplements such as Ox bile. It's been since last August...and Im just tired. At least they are not wasting time. Im feeling pretty good for now. No D, right now, just a lot of pain and fatigue. I rarely had D throughout this journey. The first week after I was diagnosed, and for 3 weeks before my FMT. Just waiting for scheduling to call.

[georgina]

Bile and glycine is what the spore needs to keep germinating , according to a study I have read on the internet.

[linnyg]

I have read that, too. Doc said they have found a correlation between no gallbladder and recurrent c-diff, I guess there is some sort of imbalance that occurs? I don't know. I try to read a lot of the studies out there, but many go waaaayyyy over my head, lol.

[beth22]

I have my gall bladder, but I kept recurring too and even after FMT. They did blood tests to check my immune system and that was ok. So, who knows what the mechanism is? I don't think anyone really knows. Just think positively and if you need another FMT, then just do it. I found that it still helped me way more than taking vanco.

[linnyg]

Thankfully scheduled for 2nd FMT in 10 days!!

[georgina]

Good luck , hopefully the second FMT will take care of CDiff once and for all!