8 weeks post FMT - D for 3 days

If you have had or are considering an FMT please share your experiences here.
Emerald
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8 weeks post FMT - D for 3 days

Postby Emerald » Sun Apr 16, 2017 1:59 pm

Hi Everyone and Happy Easter for those who celebrate it,

I had an OpenBiome FMT 8 weeks ago exactly as of tomorrow. I've been dealing with CD since October and failed everything--flagyl x2, vanco, deficid.... I never made it past two weeks and this time I made it to 8. I was hoping today to celebrate Easter and have a feeling of being resurrected myself, hoping that with the start of spring and the end of Lent I could put this dark chapter behind me. But out of no where I started having D on Friday. Was feeling fine and then *bam!* Only once a day and in the morning, and I've observed the 3 day rule and still had D this morning so I think I need to get tested again. I'm worried that since I have chronic CD I'll test positive for the rest of my life so how do you know if your D is from CD or just normal? I've had an incredible amount of stress too, as my job was "sunsetted" two weeks ago (what a nice way of putting it!) so I'm now having to apply for new roles so that can wreak havoc on everything too.

The reverend today was talking about how to have hope in a period of darkness and this forum is the only place I've truly found hope. My GI has never had an FMT fail before, and no one in my PCP's practice has had to have an FMT ever so it makes you feel really alone. Thank you everyone. If it weren't for this group I wouldn't have hope that yes, even if I have to have another FMT that others have had that happen and have eventually found success and I won't have to have this forever. It's just hard to have hope after so long. *sigh*

Blessings to all those who walk this path with me,
Emerald

Tsc1964
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Re: 8 weeks post FMT - D for 3 days

Postby Tsc1964 » Sun Apr 16, 2017 2:50 pm

Happy Easter. Praying for you that this will pass as ibs. This illness is lonely for sure. I listen alot of worship music an one i really like that i listen to is by tenth Avenue "I have this Hope" . Theres been times during this ive struggled with feeling forgotten but my pastor told me to lean on my church familys faith when i feel that way.

amyc
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Re: 8 weeks post FMT - D for 3 days

Postby amyc » Sun Apr 16, 2017 4:06 pm

Hi Emerald. If I were in your shoes I would test again, because some people do need two FMTs to get a full cure. That said, having D once a day could definitely be IBS, either from stress or from post-infectious inflammation.

beth22
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Re: 8 weeks post FMT - D for 3 days

Postby beth22 » Sun Apr 16, 2017 8:18 pm

The hospital lab where I do my c diff tests now do a PCR and if it is positive, they follow up with an EIA to see if toxins are detected. Not every positive PCR test means an active infection. If you do test and it is positive, I would request a follow-up with an EIA. Also, if you test, ask your doctor to test you for everything - do a stool culture to see if you have another pathogen or bacteria and test for ova and parasites. We have had some posters, including myself, who got another bacteria. I had campylobacter. Others had e-coli, salmonella, etc.

roy
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Re: 8 weeks post FMT - D for 3 days

Postby roy » Sun Apr 16, 2017 9:10 pm

I don't think D once a day is much to worry about.
Guidlines say test if it's 3 or more a day.

Davidtm
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Re: 8 weeks post FMT - D for 3 days

Postby Davidtm » Mon Apr 17, 2017 4:06 pm

One of the things I've noticed with every relapse is increase in frequency. Once in the morning does make me think ibs. Definitely discuss with the Drs because I'd be worried to test unnecessarily. Before c diff we've all had off days and hoping that it's not a relapse for you. If you're a carrier having an off few days it could lead to treatment from some doctors. 8 weeks seems like a long time for a relapse. I believe I've read after a certain point it's no longer a relapse but a reinfection or new infection that's usually from continued antibiotics or other things implicated in c diff.
Fingers crossed for you!

georgina
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Re: 8 weeks post FMT - D for 3 days

Postby georgina » Tue Apr 18, 2017 1:02 am

I am positive for toxins since last summer with symptoms similar to your , very mild D , once or twice , sometimes alternating with one or two days of formed BM but that is rare , besides that I'm fine , eating whatever I want . Because I am having so mild symptoms I decided to hold back on treatment unless symptoms go full blown , taking more treatment makes my gut more and more sensitive and gives me more food intolerances , so as long as I'm not feeling sick and I don't have to run to the toilet several times per day , I am fine just the way I am , I have learned to live and deal with it. If I were you I would not bother to test for just one loose stool in the morning!

Emerald
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Re: 8 weeks post FMT - D for 3 days

Postby Emerald » Tue Apr 25, 2017 8:44 pm

Hi Everyone and thanks for the well wishes. Well turns out the day after Easter it was formed again and has been mostly good since. Had one episode of D when traveling for work this past weekend, but then bounced back to normal this morning. I've decided to hold off on testing until it goes further. I guess I took the "three day" rule maybe a little too literally--turns out I needed 4!

I appreciate all the support. I think if I can just try to focus now on moving on with my life, maybe when I have D every now and then it won't freak me out as much.

But what this did teach me was that my coping mechanisms weren't as robust as they needed to be. I was a complete mess. So after a very melancholy easter I reached out to a friend I was getting to know and asked her if she'd walk with me through this. From that call, we've set up weekly sessions where we get together, do a reading, and explore our faith journey further. I have learned that my emotional and spiritual healing wasn't making any progress, as only the slightest thing made me completely derail. I'm taking this as blessing that our friendship is growing and I have learned how to develop better coping skills and try to grow my faith and trust. While I am overwhelmingly grateful to be, fingers cross, around a bend, I was struggling to see the *point* of all of this. Being a person of faith you are taught to trust even when you can't see the plan as it is good for you. I did some reading from Max Lucado and there were a lot of people who went through terrible things, and had this feeling afterwards. But I was struggling, and am still struggling with the "why me" part of this. It's all just unfair. And yes, I *know* life is unfair, but that doesn't mean I was emotionally prepared for it. Honestly, this developing friendship and furthering of my journey is the first really good thing to come out of all this. I'll take that as a start.

Tsc1964
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Re: 8 weeks post FMT - D for 3 days

Postby Tsc1964 » Wed Apr 26, 2017 10:19 am

Emerald ,
Im so glad you have a friend to walk thro this with you. Takes alot courage to ask sometimes. Ive had many of tbose same feelings during this journey. My spiritual life needs attention. There was times i was so sick an my mind was so bad all i could do was ask for prayer. My pastor told me to lean on their faith thats the body of Christ to hold up each other in weakness. That helped me. We have revival tonight an its perfect timing. Having that weekly fellowship is beneficial. We get in survival.mode an its easy stay there. If ever want pm me feel free.
God bless take care.


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