Not typical symptoms

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Nikkikik
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Not typical symptoms

Postby Nikkikik » Tue Jul 12, 2016 8:24 am

I have tested positive three times since February (although looking back I believe I have had c diff since the fall of 2015) - my symptoms include (sorry if TMI) three to four days of constipation (not going at all, but feel the urge to go - then straining,etc), followed by three to four days of multiple bowel movements (not liquid, but more paste like with mucous). I ping pong back and forth like this. Since my first diagnosis in February I have had two sigmoidoscopies - the first showed ulcers an inflammation, the second (two month later) showed nothing.

I have been treated with flagyl, then vancomycin, and now vancomycin again. During my first round of vanco I ended up hospitalized (day 6 into meds), for dehydration, severe cramping, bloating, etc. Even though the meds didn't seem to be working my treaters insisted I do a second round. I have no had any relief on the second round (four times a day for two weeks, two times a day for two weeks and now once a day for two weeks). I am requesting a fecal transplant, but am being told that because my symptoms are not the norm that it will be hard to get covered.

Now my four year old son has tested positive - I got him tested after complaints of his tummy hurting and noticing a decrease in appetite. They are telling me there's nothing to say he truly has it because he has not presented with diahrea, but then again, I haven't really either and it's been quite difficult to treat. I'm fearful that he will go down the same path as I am. I'm also being told he could just be a carrier and that it has nothing to do with me, but I feel like that probably isn't the case.

Anyone have any similar experiences? Similar presentation of symptoms? Anyone dealing with having passed it to their child? I'm desperate for relief and answers. With each doctor visit I become hopeful and then am dissapointed - being told all kinds of contradictory information.

- frustrated

roy
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Re: Not typical symptoms

Postby roy » Tue Jul 12, 2016 8:35 am

All you describe in yourself and your son is the type of infection that the experts say do not treat.
C.diff is a normal gut bacteria along side many others that would freak you out if you knew they were there.
Testing positive does not mean automaticaly treating.
Treat the patient not the test.
A lot of symptoms you describe can be from overuse of meds.

amyc
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Re: Not typical symptoms

Postby amyc » Tue Jul 12, 2016 9:04 am

I would ask for a referral to an infectious diseases doctor who has treated C diff patients to get these questions answered. You guys could just be carriers and that doesn't warrant treatment, bit an ID could perhaps help to explain that to you to put your mind at ease. If you can afford to travel you might want to go to one of the big medical centers like Mayo or Johns Hopkins where they will have specialists who can see you and your son at the same campus.

Lisa33
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Re: Not typical symptoms

Postby Lisa33 » Tue Jul 12, 2016 9:43 am

I agree with Roy. It does not sound like you nor your son have had active c-diff infections. I also agree with Roy that all of the meds could be causing your symptoms now, and not c-diff. But as Amy said, you should see a good GI or ID doctor that can put you on the correct path, as we are not doctors and cannot give medical advice.

There are a few posters who have had constipation with c-diff. From what you described, the symptoms are not characteristic of c-diff, but anything is possible, so you should definitely follow up with a good doctor. I wish there was a more concrete answer for you, but c-diff is not a cut and dry illness. There are so many variables, and a lot of times, our questions aren't answered. What your doctor said about your son possibly being a carrier is definitely a good possibility. It's not easy to catch c-diff, especially if you aren't having the frequent watery D that's typical. It's only transmitted by the fecal oral route. If you are practicing good hand washing hygiene, it is difficult to pass it on. Your son would have had to come into contact with a contaminated surface and then ingested it orally.

amyc
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Joined: Thu Nov 10, 2011 8:15 am

Re: Not typical symptoms

Postby amyc » Tue Jul 12, 2016 9:57 am

You could do a phone consult with Dr Shepard at RDS Indusions in Tampa. Insurance won't cover it, but he a true expert, and could likely discuss your case with sufficient authority to either put your mind at ease or offer a true solution to your case. The out of pocket expense would probably be worth it for peace of mind. Or Dr Thomas Louie in Canada. I used to get bad tummy aches from stress when I was little, so that could be what's going on with your son too. Good luck!


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