Feeling defeated, second relapse

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MrsM25
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Joined: Fri Nov 17, 2017 4:41 pm

Feeling defeated, second relapse

Postby MrsM25 » Thu Nov 30, 2017 12:37 pm

Well, I officially just started my third course of vanco for another relapse after only 3 days this time. This time the course is for 250mg 4x a day for 28 days. Last two courses were each for vanco 125mg 4x a day for 10 days. My first relapse was after 6 days being off vanco so this relapse was even faster this time. My GI has me scheduled for FMT in the new year. I am just so frustrated and sad. I’m a 29 yo female with 2 small children. I feel like I’m never going to feel well again. I need something to give me some hope.

MKW
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Joined: Mon Sep 26, 2016 9:49 am

Re: Feeling defeated, second relapse

Postby MKW » Thu Nov 30, 2017 12:52 pm

Hi, try to find my posts under FMT discussion. I relapsed three times, and had a successful FMT in March 2017. And... I failed at holding it in and it worked anyways :-) there was a video of experts on c Diff I watched once, and one of the doctors said “the cure is the cause”. The fact is too much of your good flora are wiped out to keep the c Diff in check. And some strains I believe are worse than others. Your treatment is also keeping the good bacteria you need from re-growing, and people like us just get stuck in a cycle. Be hopeful about the FMT. And if you are on a potent full round of meds to have killed it off beforehand chances of success are 85%. Btw, ask about taking immodium following the procedure.
I have struggled with pi-ibs since. The results of FMT may not be perfect. But it stops the c Diff relapsing cycle. Be hopeful! -melanie

NanciT
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Joined: Thu Sep 18, 2014 12:01 pm

Re: Feeling defeated, second relapse

Postby NanciT » Thu Nov 30, 2017 12:57 pm

Sorry you are going through this, it's sounds like you have the FMT scheduled and hopefully the Vanco will keep symptoms under control until then.

If you continue with issues can you move the FMT up? I know how depressing this all is and we have many Mom's with little one's which makes it so difficult. It's hard to keep up. Did your GI consider putting you on Dificid instead since you have had 2 rounds of Vanco? I know often cost is a factor but there is a Dificid site with a discount.
Just a few things to consider. You WILL get through this, some of us go through several relapses but often either Dificid(in my case) or FMT will be the magic bullet to get rid of this

I hope you are feeling better soon

NanciT

MrsM25
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Posts: 149
Joined: Fri Nov 17, 2017 4:41 pm

Re: Feeling defeated, second relapse

Postby MrsM25 » Thu Nov 30, 2017 1:12 pm

Thank you, this site definitely helps with so much. Although it stinks that we all are or have gone through this, it’s amazing to have all the advice and support from everyone. You all do certainly give me hope even in my worst moments.
The FMT via colonoscopy is scheduled for 2/2/17. That was scheduled before I started this 28 day course of vanco. The vanco was called in by the on call GI doctor last night so I haven’t had a chance to talk to my own GI yet since then. I’m not sure if he will be considering moving the FMT up since I relapsed so quickly this time. I called the GI office this morning and left a message on the nursing line inquiring about dificid since I’ve heard so many success stories with it. I actually called my insurance already and printed the coupon from the manufacturer website so I know it would be somewhat covered. For now I guess it’s just taking the Vanco and then see what the GI decides to do now.

georgina
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Re: Feeling defeated, second relapse

Postby georgina » Fri Dec 01, 2017 9:41 am

Make sure that before you get the FMT you have compleated a full antibiotic course . FMT should not be done without antibiotic prep and the discontinuing of the antibiotic should be done only 48h before the FMT. I had a FMT done without the antibiotics prep and it was not sucessfull.

Napper
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Joined: Wed Nov 15, 2017 6:41 pm

Re: Feeling defeated, second relapse

Postby Napper » Fri Dec 01, 2017 11:46 am

I'm with you on feeling defeated. It's like we have to come here to learn and then tell the doctors. Doesn't make any sense.
I wish you luck and hopefully you can get the FMT moved.

MrsM25
Regular Contributor
Posts: 149
Joined: Fri Nov 17, 2017 4:41 pm

Re: Feeling defeated, second relapse

Postby MrsM25 » Fri Dec 01, 2017 8:30 pm

Thanks Georgina, I will double check with my GI what the protocol is. I called yesterday to ask some questions about the FMT and also dificid and they told me they would call me back today but they never did.
Napper, I totally agree. It’s so frustrating that I am having to figure out my own treatment plan in a way. I just want to be cured. I’m sure that everyone feels that way. I’m sure I drive the girls at my GI office crazy but no one understands how distressing cdiff is unless they experience it first hand.

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: Feeling defeated, second relapse

Postby NanciT » Fri Dec 01, 2017 10:43 pm

I completely agree and I have said it over and over, unless you have been through this it is impossible to know how devastating it can be especially without specific Protocol's. What the MD's have out there is old and most still start with Flagyl. During my time and with all the ER visits, I would talk with each and every nurse about the nightmare I was going through. One knew me personally and was very worried seeing how ill I was.

Sadly it's seen as diarrhea, it is so much more

NanciT

MrsM25
Regular Contributor
Posts: 149
Joined: Fri Nov 17, 2017 4:41 pm

Re: Feeling defeated, second relapse

Postby MrsM25 » Fri Dec 01, 2017 11:21 pm

Ugh, if I had a dollar for every time I’ve heard from a family member or friend that it’s just some diarrhea. They don’t quite understand why I can’t eat certain things or why I have to plan everything around Cdiff or why I start to cry a little bit on the inside when I’m getting close to the end of my antibiotic course again because I have to start to prepare for relapse which means, fever, body aches, horrible diarrhea and brain fog all over again after I finally am starting to feel better.


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