Hope my third FMT did the trick!

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Damncdif
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Hope my third FMT did the trick!

Postby Damncdif » Tue Jan 08, 2019 1:28 am

I won the battle with CDiff once before, six years ago. It took six months to feel better. The end was quite anti-climatic; I didn’t wake up one day feeling better knowing I was cured. Like so many others, I felt sick for a long time afterward and felt certain at times that it wasn’t gone. But that’s not what my story is about.

CDiff can really mess with a person’s mind. For years afterward I lived in fear of hospital rooms and public bathrooms. I bring bleach with me to hotel rooms and clean the bathroom myself before feeling comfortable using it. Six years later I was feeling more comfortable with the world and CDiff finally seemed like something I could put behind me. Until I got it again.

I gave birth to twin sons five months ago, which led to a series of complications requiring me to take IV and capsule antibiotics. Since my first battle I’d been determined to not take antibiotics out of fear of the the Diff, but these were life-threatening situations. Two of them. A couple weeks later the Diff was back.

But I was undiagnosed for five weeks. I KNEW it was back. But I tested negative, three times. Three times! The ID doctor was baffled by this, especially since a nurse had collected one of the samples herself when I had landed in the ER. For five weeks I was getting worse, going to the bathroom 30+ times a day and so sick I could hardly eat. One day in particular I ate nothing but two crackers. And I was breastfeeding twin infants. I was told repeatedly that I don’t have CDiff because the test is so accurate. My general practitioner prescribed me antidepressants because he thought anxiety must be the cause since I have two babies at home. I was told to take Imodium. The GI doctor suspected IBD and set up a colonoscopy appointment. I had to beg to be tested a fourth time. Boom- positive.

Vanc works like magic and I finally felt the life come back in me. But after the initial taper down to two pills a day, some symptoms were returning. The ID doctor said the choice was mine: I could continue the Vanc and hope to stabilize, or I go right for an FMT. In my mind the FMT sounded like a miracle cure. It wouldn’t just cure the CDiff, she said, but it would make my gut healthy again to protect against ever getting it again. I’m in!

I opted for the capsules. They failed... twice.

The third FMT I had was via colonoscopy, almost 28 days ago now. I felt fantastic for two weeks! It wasn’t just my gut, but my head as well. I just felt... happy. I hadn’t realized how depressed I’d been. Part of it of course is the conscious realization that maybe the disease is gone— but also, the gut effects the brain. This “second brain” of mine had been sick for so long and relaying negative information to my brain. Viola- depression.

I am now 7 weeks post FMT.
I’ve had a couple hiccups. A few times I’ve had diarrhea here and there, but most of these times I was pretty sure I wasn’t relapsing because it didn’t look like Diff diarrhea. But once time after 4 weeks, I was SURE I’d relapsed. I would’ve bet money on it. For about three days I had symptoms that’s were worsening. Now, mind you, these were t severe symptoms. Just some stomach pain, a couple bouts of diarrhea, but it had been worsening. I even did a stool test. But the fourth day I woke up feeling 100% normal. Thank you, God.

Now I’m seven weeks and just yesterday I started feeling off. I had some diarrhea, and today I had quite a bit of pain, some diarrhea, and some “off” stools. I’m praying that, like last time, I’ll awake in the morning and feel 100% normal.

I welcome responses.

beth22
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Re: Hope my third FMT did the trick!

Postby beth22 » Tue Jan 08, 2019 2:42 am

I have had more than one FMT. Your gut is off for a long time, at least mine was. I got food intolerances. It might be something that you ate that set it off. It takes the gut a long time to heal. I used to take Pepto Bismol for these episodes and it helped me. I would not worry too much. There is a product that is RX called EnteraGam that is for IBS-D. It is a medical supplement that is supposed to help the immune system in the gut. Your GI would know about it. It is expensive, but they have their own pharmacy and you can get a box for much less - I think about $70 or $80. It has helped some. It supposedly can carry out c diff toxins too. You may just have a few spores here or there that activate from time to time and cause your symptoms. My GI suspects that is what happened with me. I still test positive on PCR, but negative on EIA. So, I know it is in me and I avoid antibiotics.

Damncdif
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Re: Hope my third FMT did the trick!

Postby Damncdif » Wed Jan 09, 2019 1:25 am

Thank you for your response.

You still test positive, even after having an FMT? More than one at that? My ID doctor made the FMT sound like a miracle cure, saying that heals the gut to protect again CDiff in the future. It’s scary to think that any time in my life that I might need antibiotics it could come back. Although, she did suggest that if ever I need antibiotics, I could take Vancomycin with them to keep CDiff from taking over.

beth22
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Re: Hope my third FMT did the trick!

Postby beth22 » Wed Jan 09, 2019 2:42 am

I started testing positive after I was given antibiotics in the hospital in 2016, but I do not have D. It may be that I became colonized in the hospital. I did do some home FMT enemas after, but I still test positive on PCR, but negative on EIA. As long as I don't have symptoms, it doesn't really matter.

Damncdif
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Re: Hope my third FMT did the trick!

Postby Damncdif » Wed Jan 09, 2019 12:02 pm

You said you had more than one FMT. I’m curious how you relapsed- did your symptoms come all at once or did they slowly come back? I’ve had some diarrhea and pain for four days now. It’s not severe, or even frequent, but the absence of a normal stool makes me a bit concerned.

beth22
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Joined: Tue Apr 07, 2009 2:23 pm

Re: Hope my third FMT did the trick!

Postby beth22 » Thu Jan 10, 2019 2:50 am

The first relapse was after taking Cipro for another infection. This came 7 months after FMT by colonoscopy. Prior I had SIBO after the FMT and had symptoms that were almost as bad as the c diff. I had lots of food intolerances and would get D and have cramping and gas. After a round of Xifaxan this improved.


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