C diff for the 7th time?

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mrt910
Brand New Poster
Posts: 1
Joined: Tue May 07, 2019 1:50 pm

C diff for the 7th time?

Postby mrt910 » Tue May 07, 2019 2:43 pm

Hi everybody!

I am a 26 yr old female, first time poster, long time reader. I was diagnosed with uc at 15, have a severe case a GERD & a chronic case of gastritis. But c diff is my biggest problem. I have been in a steroid free remission for 6 years with uc but the c diff will not leave me alone. I had it 3 times many years ago, all spread apart from each other. Then in 2017 I got it twice and begged my GI for fmt but it is highly regulated and said I would need to have it 3 times very close together in order to qualify. Has anyone else been told this? I had it already once this year and it took vanco & difficid and two months to get rid of it. Now I have been having sharp pains in abdomen and that strong c diff stool smell is back and dominating. I am so nervous I have it again. I want the fmt so bad because I know I am going to continue getting this the rest of my life if I don’t. I also have been getting extremely agitated and anxious the last couple times with c diff and seems to be getting worse. Does anybody have this problem or any suggestions for keeping anxieties low when sick with c diff?

Thanks

NanciT
Long Time Contributor
Posts: 2572
Joined: Thu Sep 18, 2014 12:01 pm

Re: C diff for the 7th time?

Postby NanciT » Tue May 07, 2019 10:18 pm

Hello and Welcome to the site Please read the first thread for all new posters

I am sorry you have been though this for son very long, it is always difficult with people have other GI illnesses and then get CDIFF. I don't understand what your GI means by 3x. Generally people have to be treated 3 rounds of medication before getting an FMT but that has changed over the last few years.
Have you seen an ID??? I would consider this or maybe a 2nd opinion GI. It's not clear if you are going on antibiotics and then it returns? Is there a reason it is coming back?
Typically, people can relapse but if alot of time has passed it sounds like a new infection and I wonder why that is occurring. I relapsed 5 times over a year but only consider it having the illness once.
I had CDIFF in 2014/2015 and at that time GI's stopped doing FMT's here locally, I was on a wait list for 4 months. Meanwhile the only thing that was helping after a 3 month Vanco taper was a Dificid taper. By the time I got that APPT, he had me complete the taper and I never needed the FMT.
Talk with your GI or ID about a Dificid taper.

Take Care

NanciT

georgina
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Joined: Sat Sep 12, 2015 10:07 am

Re: C diff for the 7th time?

Postby georgina » Wed May 08, 2019 12:54 am

At this point i think you should get in to see a doctor who specialized in Cdiff (at Mayo clinic or Dr. Sheppard etc) .If you use the search box you will find more names from Cdiff specialists that are doing FMT. And yes,you have more options for treatment :the long course of Dificid that Nanci told you about , FMT. Even if that GI you are seeing doesn't wanna do it , there are plenty others who will.

beth22
Long Time Contributor
Posts: 9693
Joined: Tue Apr 07, 2009 2:23 pm

Re: C diff for the 7th time?

Postby beth22 » Thu May 09, 2019 1:05 am

The doctors I have seen do not make you wait for 3x. That has changed. That may be your GI's policy or perhaps the hospital has that regulation. I would get a second opinion or see an ID as was suggested.

hledgess
Regular Contributor
Posts: 198
Joined: Mon Jan 04, 2016 5:58 pm

Re: C diff for the 7th time?

Postby hledgess » Thu May 09, 2019 8:03 am

Are you positive again?


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