New and Looking for Understanding

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KNEL
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Joined: Mon Sep 11, 2017 11:14 am

New and Looking for Understanding

Postby KNEL » Mon Sep 11, 2017 11:24 am

Hi,

I'm new to the group, but not new to Cdiff.
Last year I was diagnosed...after my GP had me go through too many doses of meds for Pneumonia... and went through about 5 months of hell. Horrible sickness, two FMT's one via pills, which I proceeded to vomit back up sending me to the ER and straight into the hospital to make sure I didn't go into toxic shock. Then they did a FMT via colonoscopy. This one seemed to take. And after 5 months of an insane amount of meds, tests, diet changes, and FMT's I finally tested negative for Cdiff.
I recently, last week, went to my GI for a 3 month check up, and tested positive again for Cdiff. I was afraid that I may, given that I know the symptoms and was experiencing them again. I have no clue how or why it relapsed, but it has me really down in the dumps (no pun intended). My emotions are all over the place, and the illness level is over-the-top. My family doesn't really understand. They're scared for me, but they don't know how quickly my energy depletes or how depressed it can make you. I have multiple autoimmune diseases, so it's very easy for me to catch anything, I assume this is how I got cdiff again.
I'm just really tired of it all.
I'm glad there are others out there who truly understand what I'm going through.
I'm happy to be here, even if it is under these conditions.

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

Re: New and Looking for Understanding

Postby NanciT » Mon Sep 11, 2017 12:58 pm

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

Sorry you had to find us. It's difficult to comment with your underlying condition and also not knowing the history of treatment. It sounds like you developed CDIFF symptoms( diarrhea) 5 months Post FMT and have now tested positive. Were you ever treated with medications or have them PRIOR to the FMT?
What is your GI's plan currently? Due to your additional illness maybe you should consider a consult with an ID? That was my first thought.

Once again Welcome

NanciT

KNEL
Brand New Poster
Posts: 2
Joined: Mon Sep 11, 2017 11:14 am

Re: New and Looking for Understanding

Postby KNEL » Mon Sep 11, 2017 3:23 pm

Hi,

I've gone through all the steps of meds leading up to the FMT in the past. That's what took so long before they did the FMT's. They wanted to exhaust all other options before the transplant. But I continued to test positively for CDIFF after each. The second FMT finally got rid of it.
But now it's back. I have an ID doctor. I've got an appointment with him in a week. My GI is waiting to see what he thinks we should do before making any decisions. Since this is a relapse, and my compromised immune system.

roy
Administrator
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Joined: Sat Aug 02, 2014 1:05 am

Re: New and Looking for Understanding

Postby roy » Mon Sep 11, 2017 4:33 pm

Did diarrhea return for at least 3 x a day for at least 3 consecutive days between each relapse or did they treat just because of a positive test result?

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

Re: New and Looking for Understanding

Postby georgina » Tue Sep 12, 2017 12:36 am

Testing positive without symptoms doesn't require treatment as you could have become a asymptomatic carrier. If your positive test is accompanied by symptoms like : D , abdominal pain , fever , you definitely need to be treated. Have you tried Dificid? If your ID doc decides that you need to be treated again , you should discuss with him about a long course of Dificid , it may be your magic bullet.
Also have you been checked for Ig deficiency?

Bobbie
Administrator
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Joined: Sat Aug 06, 2005 8:00 pm

Re: New and Looking for Understanding

Postby Bobbie » Wed Sep 13, 2017 4:00 pm

KNEL,
No one will understand how you feel except someone who has/had c diff. Including spouse, family, friends, co-workers. As the others said, don't take meds unless you have symptoms - as well as a positive test.

Welcome.

Ril
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Posts: 1837
Joined: Sat Oct 27, 2012 2:45 pm

Re: New and Looking for Understanding

Postby Ril » Sun Sep 17, 2017 3:46 pm

Because you said you know the symptoms I will assume you were again experiencing severe d and did not get treated just on the basis of a positive c diff test...?

We do understand the anxiety and depression that accompanies this disease. The ill feeling and fear preys on your mind even during recovery. If you are not already doing so please think about whether counseling might help you or at the least whether you might benefit from antidepressant or anti anxiety medication. Many of us have used these aids. This is a conversation you should have with your dr. Whatever help you need you should accept.

Rita

Bunny
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Posts: 1
Joined: Mon Nov 20, 2017 10:24 pm

Re: New and Looking for Understanding

Postby Bunny » Fri Nov 24, 2017 2:48 pm

I had c diff with the usual symptoms back in October 2017. Did the vanco for 10 days. Bowels returned to normal for another 10 days or so during and after vanco. (Colonoscopy during diarrhea but before c diff diagnosis showed no c diff, just infectious colitis. After colonoscopy, D continued and I was hospitalized, and diagnosed.)
Now constipation, no cramps, just tenderness on lower right side of belly. IF dr refused to test again, but then I had very loose bowel movement for 1 day after drinking some prune juice. PCP got me the lab order for stool test which came back positive for c diff, but I don't know what strain. Still have constipation and very little other discomfort. Passing some small loose stool about every other or two days for two weeks now. Got the ID to get me Dificid two days ago. Afraid to start taking it without the "normal" symptoms. Both the Gastroenterologist as well as ID tell me I can't have c diff if I am constipated. Am I just a carrier? None of my 3 dr's. Are talking to each other and I feel abandoned and don't know what to do for help. Pretty depressing....

Mindy
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Joined: Sun May 03, 2015 1:58 pm

Re: New and Looking for Understanding

Postby Mindy » Sat Nov 25, 2017 4:58 am

I was constipated with c diff, didn't go once for five days! I held the infection inside, however, when I did go, it had mucus and some blood. I had terrible flu symotims, weakness and fever. That's so false, and doctors need to quit saying that. Everyone is different. I was hospitalized 4 different times I was so I'll. When I did relapse, I got the classic symptoms.

roy
Administrator
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Joined: Sat Aug 02, 2014 1:05 am

Re: New and Looking for Understanding

Postby roy » Sat Nov 25, 2017 8:49 am

Infectious colitis is a broad term and can be used to describe c.diff, when my mother was transfered between hospitals that's the exact term they used if they had to describe her condition out loud in front of non medical people, I think they did that so other patients and visitors did not panic at the name!
C.diff can be a normal gut flora and will show up during tests, most Drs would agree that a positive test does not mean you need treatment if you dont have D.
Very often treating asymptomatic c.diff with antibiotics can make it go full blown and cause it to overgrows.
Mindys is a classic case of not having typical c.diff symptoms and the treatment causing c.diff to become a full blown disease.
Treatment after a course of medication should depend on symptoms, not on test results.

Bobbie
Administrator
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Joined: Sat Aug 06, 2005 8:00 pm

Re: New and Looking for Understanding

Postby Bobbie » Sun Nov 26, 2017 2:41 am

KNEL!
I so,understand what U are going thru - 3 bouts of c diff (first lasting 4'years), osteoporosis - 6 broken bones, osteomyelitis, 8' bouts of pneumonia.

There are days when I wonder how I will get through it. And other days when I feel good. I have had two long periods of "good."

Wish they would return.


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