Success- but still skittish

We spend a lot of time talking about the bad news in this discussion group - here's the spot for the good news. If you've had c-diff and are now well, please tell us about it here.
ashenpirate
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Success- but still skittish

Postby ashenpirate » Sat Mar 17, 2012 2:56 pm

After a long 4 year battle with C. Diff unsuccessfully treated with Flagyl, Vanco, Rifaximin and TEN failed rectal transplants, I am finally cured after receiving a fecal transplant via NG tube. I only had to have ONE transplant by NG tube for it to work, where as ten rectal transplants failed. Go figure!

Without going into too much more detail about my case history: my naso-gastric transplant took place in Toronto, ON in August of 2011. It is now March and I'm still considered cured.

However I've been having what seems to be a stomach flu this past week and having had diarrhea in spite of taking Immodium, I still get panicked sometimes.

Does anyone else who is cured get worried with every little bout of IBS or upset stomach? Does anyone else get down?

And to anyone reading this who is still suffering, don't give up. Keep pushing for a new doctor, new treatment, whatever. This is treatable. I had one doctor in Hamilton, ON give up on me and tell me she didn't know what to do anymore. So I pushed. Got to the right doctor at the right hospital and now I'm better :) It gets better and the vast majority of people don't have to fight as long as I did, so hang in there.

AThurston
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Re: Success- but still skittish

Postby AThurston » Sat Mar 17, 2012 6:19 pm

Congrats on your recovery... I had the n/g transfusion the last wk of Aug into Sept (x7days) 2011. I relapsed 10 wks post transfusion. I had been relapsing for 8 mos prior to the transfusion. I put all my faith in the transfusion and when I relapsed I was devastated and continue to be anxious and depressed. I remain on vanc at this time. I believe anybody that has relapsed is apprehensive with D, or anytime we feel or have something out of the ordinary and anxious of every little thing that cause the return of infection. Don't beat yourself of dear, we all do it. Be strong, try to be as positive as you can. Enjoy life to the fullest!!!!
Alletta

ashenpirate
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Re: Success- but still skittish

Postby ashenpirate » Sat Mar 17, 2012 6:27 pm

I am so sorry you relapsed. I know the feeling of putting all your faith in treatment and having that happen, it happened to me the first two times I did the rectal transplants. Devastating.

Don't be afraid to try again.

Has your doctor ruled out any reasons for it not working? I had a colonoscopy done to make sure I didn't have anything like bleeding or chronic inflammation or polyps etc. And I also had to have a complete physical workup to rule out things like Celiac even though we already knew it wasn't that.

Have you only tried the NG tube route? Different things work for different people. My docs were baffled when the rectals failed. My doctor in Toronto said even the NG might not work the first time but that it always works the second time. As well, there's plasma therapy and all sorts of things they can do. It doesn't have to end here. chin up.

Kathy George
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Re: Success- but still skittish

Postby Kathy George » Sat Mar 17, 2012 6:33 pm

I just love success stories and I am glad that the NG tube treatment worked for you. I’m 3 years post C-Diff and still get paranoid every time I have “D” episodes. I believe it is just a normal reaction as this disease can cause such immense terror on ones state of mind. Your suffering has been so intense and that's the very reason why you get concern when flare-ups occur. Again, your reactions are completely normal!!! Take care!!!!!
I ask not for a lighter burden, but for broader shoulders.

AThurston
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Re: Success- but still skittish

Postby AThurston » Sat Mar 17, 2012 6:56 pm

ashenpirate- My ID that did the n/g said when I relapsed she didn't know what else to do for me and sent me to the Indianapolis University to ID & GI. The Dr's I see there, they are not on the same page, one says one thing then the other says something else. I have done everything but beg the ID for a colonoscopy tranfusion. No go.... I have had neg celiac test and a colonoscopy, which showed diverticuli L side colon. Vanc taper in April is planned. Take care, prayers that you remain on the road to recovery!!!
Alletta

ashenpirate
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Re: Success- but still skittish

Postby ashenpirate » Sat Mar 17, 2012 7:53 pm

You poor thing. I had a transplant via colonoscopy, and it didn't work for me for some reason but I've heard good reviews about it working in the states. Either way don't give up!

AThurston
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Re: Success- but still skittish

Postby AThurston » Sun Mar 18, 2012 3:34 pm

Ashenpirate, You too, thank you... Hang in there... Keep us posted...
Alletta


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