New poster, c-diff for 1.5 years, what next.

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Jh47
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New poster, c-diff for 1.5 years, what next.

Postby Jh47 » Fri Sep 29, 2017 2:28 pm

Hello,
I am a 34 year old female with recurrent c-diff. I've always had stomach issues, which multiple GIs haven't been able to diagnose. I've had about every test imaginable. About two years ago I started having daily diarrhea with excruciating pain, including blood and mucus. At that point my GI ordered a stool sample which came back positive for c. Diff.

Started on flagyl (that was awful), which didn't work. Then did two weeks of Vanco, and then a 6 week Vanco taper. I was hospitalized several times during this period for extreme abdominal pain. My GI doctors have long said there are multiple issues other than the c. Diff, but still trying to determine what they are. Tested positive again, and FMT was scheduled for July of this year, with Vanco prescribed to taken until that point. Fmt happened and seemed hopeful at first until I started getting really sick again a few weeks later. Diarrhea has long been accompanied with painful bloating and gas, and any touch to my stomach when bloated is very painful.

Dr thought reoccurrence after FMT was unlikely but wanted to test again given my symptoms. Positive. Back on Vanco to try and keep symptoms at bay, with 2nd FMT scheduled in November.

Although I have no complaints about my Drs., I am seeking a 2nd opinion because of the other undiagnosed GI issues with C. diff. My current docs agree with this decision.

I'm just so tired of feeling terrible all the time. Hoping someone has great stories of FMT not working the first time, but subsequent procedures working. My big fear is if they can't get this treated is the obvious worst case scenario. I know it's not likely, but after everything, that fear sits in the back of my mind.

Anyway, that's my c diff story, nice to meet all of you and know there are others out there dealing with the same.

beth22
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Re: New poster, c-diff for 1.5 years, what next.

Postby beth22 » Fri Sep 29, 2017 3:21 pm

Hi Jh47 - Sorry that you have to deal with this even after FMT. I am one of the people that has had more than one FMT and so have others. I am currently testing positive on PCR, but negative EIA, so supposedly this is not an active infection. This happened because I was on antibiotics last year while in the hospital. I can share your frustration.

Have you tried taking Dificid? Perhaps doing a Dificid taper might be more successful for your or even taking that as the prep antibiotic for your next FMT. There have been many who have been cured with Dificid alone. I would talk to your doctor about it.

Have you had your immune system checked with blood tests? I know my doctors ran all the Igg, Ige, etc. tests. If you haven't, it might be a good idea to do so.

roy
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Re: New poster, c-diff for 1.5 years, what next.

Postby roy » Fri Sep 29, 2017 4:11 pm

Have you tested for celiac?
Sometimes Drs mention celiac and the patient cuts out gluten before the test is done, not realising that they should not change their diet before the test.

Ril
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Re: New poster, c-diff for 1.5 years, what next.

Postby Ril » Fri Sep 29, 2017 4:50 pm

There are a whole list of things it can be that I would hope you have been tested for, such as various kinds of colitis. They all have d and blood and mucous in stool as symptoms and can occur with or after c diff, but a good GI would have tested for those.
You got good suggestions from the others. And yes, many posters required more than 1 FMT and then did well. But if you would feel better, you should feel free to get a second opinion or change GI dr's. It is your right as a patient.

Rita

NanciT
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Re: New poster, c-diff for 1.5 years, what next.

Postby NanciT » Fri Sep 29, 2017 8:39 pm

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

Sorry you had to find us and have been through all this. The one thing I noted in your post is you have not been on Dificid. I would imagine after this amount of time your current GI's would have run the additional tests to rule anything additional out.

I would get a second opinion and take all of your records with you including all test results. I would talk with the new GI about Dificid.

I hope you feel better soon

NanciT

Davidtm
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Re: New poster, c-diff for 1.5 years, what next.

Postby Davidtm » Fri Sep 29, 2017 11:31 pm

Hi JH47,
Sorry to hear you are still having issues after so long. I was diagnosed in may of last year and required 2 fmts before I was able to see good results. The 2nd fmt was in February. It can sometimes take more than one and I hope that yours does the trick. Eventually there is a winning combination found. Feel better.
All the best,
David

georgina
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Re: New poster, c-diff for 1.5 years, what next.

Postby georgina » Sat Sep 30, 2017 7:04 am

Jh
Sorry you hard such a hard time fighting this infection . FMT has a very high cure rate but unfortunately for some of us it takes more then 1 FMT to get well, hopefully the second FMT will be succesful. Nanci gave you a very good advice , about discussing with your doctor for Dificid. Taking a full course of Dificid followed by the FMT will significantly increase the chances of success.

Jh47
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Joined: Fri Sep 29, 2017 1:22 pm

Re: New poster, c-diff for 1.5 years, what next.

Postby Jh47 » Sat Sep 30, 2017 11:38 pm

Hi everyone,

Thanks for your encouragement and suggestions. I currently have two GIs that I work with, but they are at the same practice. I know they mentioned trying another antibiotic, not sure if it was Dificid or not. I do have an appt coming up with Mayo clinic, and my current GIs are in agreement with getting a 2nd opinion and said I can do my next FMT either there or at their practice.

I have been checked for celiac's, and it came back negative. Regarding the rest of the GI issues, I've had extensive tests: colonoscopy, endoscopy, pill cam, flexible sigmoidoscopy (showed colitis), HIDA Scan, stomach emptying study, MRIs, ultrasounds, blood work, and exploratory laparoscopy. I'm sure there are things I've missed as well.

Thanks,
Jh47
Last edited by Jh47 on Sun Oct 01, 2017 4:13 pm, edited 1 time in total.

georgina
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Re: New poster, c-diff for 1.5 years, what next.

Postby georgina » Sun Oct 01, 2017 1:38 am

I would definitely do my next FMT at MAyo clinic , that clinic has really good references and their FMT's cured many cases of stubborn Cdiff.

roy
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Re: New poster, c-diff for 1.5 years, what next.

Postby roy » Sun Oct 01, 2017 5:48 am

Wow! That's a lot of tests for someone your age!
Having c.diff along with long term gut problems must be frustrating.
A new Dr might have new ideas so hopefully Mayo will help you.
Good luck.


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