Suffering with no ideas: please offer any suggestions!

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joedoe34
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Suffering with no ideas: please offer any suggestions!

Postby joedoe34 » Wed Apr 11, 2018 2:38 pm

I will try to be brief; I am very desperate, so any possible thoughts (even a shot in the dark) would be very appreciated!

: I had a c-diff infection that went misdiagnosed as IBS-D for about 2 years; flagyl/vanco continually failed; FMT done in December 2017. Since then, it has been constant ups and downs for 5 months. I have an okay week with a few semi-formed stools, then the next week I'm back with only painful D, several times a day. I just did a c-diff test and was surprised it was negative, as this past week has been especially terrible.

I am very, very confident it is not my diet, as I have tried every possible elimination diet, and the okay weeks/terrible weeks come on and off when I don't alter my diet whatsoever (I am very strict with it). In addition to the continuous D - I still have near-constant upper abdominal cramps; this was a hallmark symptom of my active c-diff (and ultimately what pushed me to continue searching for answers before I got correctly diagnosed). Levsin and Bentyl, diet, etc. seems to have no effect on these cramps.

I am very concerned something else is at play - I don't know if it's SIBO, another potential c-diff complication, or something else. I've read thousands of posts on this forum over the last 9 months since my diagnosis, but i've yet to find anyone that directly relates to my situation (negative test, but continuous symptoms of D and upper abdomen cramping with no improvement, 5 months after FMT).

Any possible advice would be greatly appreciated

roy
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Re: Suffering with no ideas: please offer any suggestions!

Postby roy » Wed Apr 11, 2018 4:21 pm

It's possible that the 2 years of IBS symptoms predisposed you to a c.diff infection by weakening your immune system and good gut flora.
It's possible that c.diff was the result of your earlier gut problems and not the cause of it.
It's also possible that although you were colonised with c.diff (not unusual for someone with other gut problems) it might not be causing illness.
It's possible that the treatment aimed at the c.diff has eliminated it but you are still left with the true cause of your initial long term illness so don't just accept c.diff as a final diagnosis.
All possible but only your Dr can give you advice

joedoe34
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Re: Suffering with no ideas: please offer any suggestions!

Postby joedoe34 » Wed Apr 11, 2018 7:47 pm

Quick addition to the story in case it's relevant: I was diagnosed with IBS-D as a kid. I believe I contracted c-diff in the aftermath of a hospitalization in December 2015 for a severe double ear infection after taking tons of antibiotics for a month. After a few months of worsening diarrhea, I suspected it might not just be my IBS, but my GI doc didn't suspect or test me for c-diff for a year after that until I kept going back and seeking answers (he only initially tested for h.pylori and then chalked it up to my ibs/anxiety worsening ibs.

NanciT
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Re: Suffering with no ideas: please offer any suggestions!

Postby NanciT » Wed Apr 11, 2018 10:43 pm

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

It sounds like a long difficult journey, if symptoms continue 5 months after FMT, I would get another opinion. Sometimes having another look with someone new helps especially if you are having pain with medication not helping. I changed GI's a few times throughout my CDIFF issues and Post CDIFF as I continued to have problems.

Sorry you had to find us

NanciT

roy
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Re: Suffering with no ideas: please offer any suggestions!

Postby roy » Thu Apr 12, 2018 8:00 am

Someone with long term IBS (Dr talk for they don't know what's wrong!) might be more prone to picking up c.diff than a "normal" person.
It may or may not cause a disease.
But classic c.diff symptoms would probably worsen considerably if left untreated for a lengthy period of time.
C.diff is not actually a disease, it's a persons own immune response and the classic relentless watery D that leads to the diagnosis of colitis that is being caused by a high level of toxins being produced by an overgrowth of the common gut bacteria called clostridium difficile!
Obviously nobody can diagnose except a Dr but they should look at your long term history and not on a test result.
You had a lifelong "IBS" problem that worsened and a test eventualy discovered c.diff, ALL the treatment aimed at c.diff failed to relieve your symptoms but now your c.diff test is negative so the treatment did eliminate that particular possible source of your illness.
I am no expert but to me that indicates that yes you had c.diff in your colon but now it's gone and the symptoms are still there so something else is causing them!

joedoe34
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Joined: Mon Feb 26, 2018 11:59 pm

Re: Suffering with no ideas: please offer any suggestions!

Postby joedoe34 » Thu Apr 12, 2018 8:15 pm

One more thing to add - the c-diff meds (mainly vanco) and the FMT actually DID drastically help my symptoms in the short term. It's just soon after, every time, the symptoms have come roaring back. So I definitely had severe c-diff that was causing almost all my problems (my IBS was very controlled before it and mostly only bothered by a bad dietary choice).


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