Feeling so alone in this

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Jessie31
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Posts: 5
Joined: Tue Jul 26, 2016 3:33 pm

Feeling so alone in this

Postby Jessie31 » Wed Jul 27, 2016 4:27 am

I've had CDIFF on and off for the past two years. And I'm only 31. Sad I know. I've had so many drugs and treatments that I don't feel like this is my own body anyone. It's scared and drove me crazy. I felt as if I was dying or that I just couldn't fight it anymore. There are so many different symptoms that I've experienced that I thought it couldn't all be related. But unfortunately I was very wrong. I hope that someone on here who's experienced the same things or similar situations can speak with me and share there wisdom. My symptoms=> Diarrhea (obviously), nausea, vomiting, stomach pain, cramping, unbelievable bloating, fevers, sweating, dizziness, very scary and weird heart beats. And the worst toxic feeling all over my body. Before CDIFF I was 95 lbs and now I'm 76lbs as of today. Unfortunately it doesn't end there.

I had a FMT done a month ago and I heard so many good things about it that I believed that this was the cure. That this would finally be over. That my fight was done! Well, not to say it might not still work but it definitely didn't go down the way it should have. The doctor I found to do the FMT was bad. And when I mean bad, I mean BAD! Not a joke. He used a sick donor and put me in the hospital for two weeks. I was in Tampa when this happened. If you can get anything out of reading this I hope it's this. Ask your doctors to double up or there testing for donors. Ask to see the test results before. Two days before I was released from the hospital we found out that he put another older women in that very same hospital!!!! Sounds to scary and crazy to be true but it's the gods honest truth.
Now my doctors have referred me to a research hospital called Shands in Jacksonville Florida in hopes that whatever that doctor did can be fixed and I can start living again. Thank you for taking the time and listening. God bless.

Jessie

getwellsoon
Long Time Contributor
Posts: 3301
Joined: Mon Jul 18, 2011 8:33 am

Re: Feeling so alone in this

Postby getwellsoon » Wed Jul 27, 2016 6:48 am

Jessie, I am so sorry you have experienced this horrible disease and on top of it such low level care. I had all the symptoms you did and more. They are horrible and no one understands them unless you have gone through it yourself. I certainly hope a better health care team can help you get well again., maybe another FMT with tested healthy donor this time. We are here for you and hope thing turn around for you soon. You have been through enough.
CAROL

Jessie31
New User
Posts: 5
Joined: Tue Jul 26, 2016 3:33 pm

Re: Feeling so alone in this

Postby Jessie31 » Wed Jul 27, 2016 10:43 am

Oh carol, how did you get through them? The weird heart beats freak me out so bad. How'd you deal with them? I don't feel like this is my body anymore.

getwellsoon
Long Time Contributor
Posts: 3301
Joined: Mon Jul 18, 2011 8:33 am

Re: Feeling so alone in this

Postby getwellsoon » Thu Jul 28, 2016 7:25 am

Jessie, Usually once you start on meds those symptoms go away. If you are on meds and not doing any better you need to let the Dr. know this. I would get another opinion from another Dr. and go from there. You might need to be treated again. They put me on anti anxiety meds in the hospital but they are only a short term solution. If your body starts to beat this infection the s/x's should go away and you won't have a need for them. Most of my worst ones like the flushing and heart issues went with my first course of Vanco in the hospital but I kept relapsing. I was lucky my relapses were never as bad as my initial infection although we all know any Cdiff is awful feeling. I hope you can find some good care and also another FMT might do it for you with the right donor. Dificid finally cured me but it was many months until I really felt better and regained some weight and strength. You will get well, don't ever doubt it and we are here for you. Hoping you can get some good medical advice soon and begin to feel better. Let us know how you do.
CAROL


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