Hope you can help me

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Bern
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Hope you can help me

Postby Bern » Sun Jan 13, 2019 9:44 am

I haven't been posting lately because I've been trying so hard to remain calm. I've been PMing with a few posters who have generously listened to me and given great advice. Thought I would get a few other opinions. I'm in the last few weeks of my taper/pulse, taking a vanco every 3 days. I was having good and bad days, mostly gas, bloating, and mild pain. NO diarrhea, but some days I would go 4 or 5 times, with formed stools. I think I might have had a stomach bug the last few days, and it scared me big time. Thought the c Diff was coming back. I had slight nausea, loss of appetite, some chills, and slight cramping, but no diarrhea. I was so tired, I slept so much. Also, very anxious. I feel somewhat better today and today was also a vanco day. I ate a light breakfast and had a very large normally formed bm. My belly hurts a little more, but overall I feel better. Could it have been a bug? Or spores coming to life? Wish there was a way to know. Anyone have any thoughts? Just hoping this is all normal recovery.

NanciT
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Re: Hope you can help me

Postby NanciT » Sun Jan 13, 2019 11:24 am

This is typical during treatment, since you are currently on a Vanco taper.

Treating CDIFF is a process and can vary from person to person. Once you have completed all the medication BM's can vary. Its best to slowly get back to your normal diet and allowing the gut to heal.
You don't mention how long you have been on Vanco or dealing with CDIFF but in any case the gut takes time to heal.
Anxiety can kick in as you near the end of your treatment, take a day at a time. Recovery can be a slow process

Hope you feel better soon

NanciT

Bern
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Re: Hope you can help me

Postby Bern » Sun Jan 13, 2019 11:41 am

Thanks Nanci, I relapsed once on flagy in November and have been treating on vanco since around thanksgiving. So I guess there’s no way to tell if this was a bug or spores? And is it true that as long as there’s no watery diarrhea that’s it’s lileky just normal recovery!

NanciT
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Re: Hope you can help me

Postby NanciT » Sun Jan 13, 2019 12:28 pm

Most don't understand that even POST treatment, it can take a very long time to get back to "normal". Things are often "all over the place", I must have thought it returned at least 3 times during my CDIFF nightmare. I DID have watery D for 3 days on several occasions. My gut was really messed up after a year on medications and relapses. My GI did not test, but about the 3rd time I had D for several days they did and it was NEGATIVE.
The reality is healing takes time. We do have poster that go back t normal eating...for me its been a slow journey. The anxiety it brings is difficult and very common. To answer your questions...if there is NO D, be ready for things to be all over.

Try not to let the fear take over, it's one day at a time in recovery

Hang in there

NanciT

Bern
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Re: Hope you can help me

Postby Bern » Sun Jan 13, 2019 1:28 pm

Thank you nanci! You write the kindest replies! One day at a time will be my motto.

Bern
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Re: Hope you can help me

Postby Bern » Mon Jan 14, 2019 11:24 am

This disease is so crazy. I felt great yesterday, even though I had slightly loose stools, but this morning my belly is crampy and I've had loose stools again. I took half a xanax because I felt so incredibly anxious, and it helps everything calm down, even my symptoms. I can proceed with my day. I have a colonoscopy scheduled for next week while I'm still on my taper, and I'm wondering if I should ask my GI if I should up my vanco to once a day until the procedure is over and start the taper again. What does everyone think?

LHutz
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Re: Hope you can help me

Postby LHutz » Mon Jan 14, 2019 7:43 pm

I've been off of Vanco for 4 weeks and my BMs are still all over the place. I go 4-5 days of constipation with bloating and gas. I've had D. My stomach has been grumbly. I've falsely felt the need to make a BM when nothing actually comes it. Point is, C. Diff. really damages your GI tract and it takes a lot of time to heal, sometimes many months.

Bern
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Re: Hope you can help me

Postby Bern » Mon Jan 14, 2019 8:21 pm

Do you get stomach discomfort too? I never know when it’s going to strike and I’m just so tired of it. If I’m up and around it doesn’t bother me much, but when I sit down I feel it the most.

LHutz
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Re: Hope you can help me

Postby LHutz » Tue Jan 15, 2019 1:22 am

Bern wrote:
> Do you get stomach discomfort too? I never know when it’s going to strike
> and I’m just so tired of it. If I’m up and around it doesn’t bother me
> much, but when I sit down I feel it the most.

Yes, I experience the same thing. When I'm sitting and working, my gut seems to bother me much more. When I'm up and active, I don't even notice any issues in my gut.

AllisS
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Re: Hope you can help me

Postby AllisS » Tue Jan 15, 2019 1:35 am

Is the colonoscopy being done because of some specific concern? Or just routinely? If the latter, you may want to reschedule it until you're further into your recovery.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

Bern
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Re: Hope you can help me

Postby Bern » Tue Jan 15, 2019 8:24 am

My GI is checking for Crohn's disease ,as my mother had it and wasn't diagnosed until she was in her fifties, and I'm sixty. I also had Sibo, which is how I got the c diff, from treating that, and she thinks it might really be Crohn's. My doctors have assured me that the prep will not cause a relapse.

roy
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Re: Hope you can help me

Postby roy » Tue Jan 15, 2019 8:36 am

Hate to say this but from my experiance after 11 years on this site is that a colonoscopy DOES carry a significant risk of causing a c.diff relapse.
Several posters have relapsed within a few days of what appeared to be a normal/clear colonoscopy.

Bern
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Re: Hope you can help me

Postby Bern » Tue Jan 15, 2019 10:00 am

Toy, what would you recommend them? How long should one wait?

Bern
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Re: Hope you can help me

Postby Bern » Tue Jan 15, 2019 10:46 am

Meant to say Roy.

roy
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Re: Hope you can help me

Postby roy » Tue Jan 15, 2019 11:15 am

I can only say what I would do, not recommend!
Personally if I was not having symptoms, the medication had done its job. and I was feeling reasonably well I would not take any chances.
I would not have a colonoscopy unless my Dr had valid reasons to think there was something wrong because of ongoing unexplained symptoms that were not responding to my current medication.
Saying that though I had my first colonoscopy last year (not c.diff related) and they found 3 pre cancerous polyps that were removed.


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