New C Diff patient w/ not alot of help from doctors, looking for anyone who may understand....

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Intercom
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Joined: Wed Oct 03, 2018 11:15 am

New C Diff patient w/ not alot of help from doctors, looking for anyone who may understand....

Postby Intercom » Wed Oct 03, 2018 12:08 pm

Good Morning :)

My name is Sarah, and I am dealing with this new found C-diff, new for me anyhow. In June of this year, after many months of waking up in the middle of the night covered in sweat, and a poisoned feeling in my gut, then proceeding to sit on the toilet for anywhere between 30 minutes to an hour, waiting for the most intense explosion of my life, all the while dripping sweat sitting naked on a toilet scared to death I am dying...the nausea is so intense and this just keeps happening, with me letting the doctors know, and them telling me you have an infection, but we don't know what it is, so here is a strong antibiotic. Also in the previous months when I had a bad bladder infection, more antibiotics. So I am not sure how long I have actually had this as I have had diarrhea for as long as I can remember. Never in my life have I had "normal poop". Back to July, the doctor does a stool sample and tests for Cdiff. I have a bad case and they immediately put me on 125 mg of vanco for 2 weeks. At this point I have bled once in my stool followed by mucus looking stuff as well. I take the scrip as prescribed and two weeks after done, I test again and am positive. They again tell me to start the vanco again except this time for many months (I will be on this round until middle of December) now I bleed more often which NEVER happened before. I do what I am told, I finally had a colonoscopy last week, and was treated like I had the plague....all the doctors and nurses treated me like I was the DISEASE, that they CREATED! Fast forward to this week. I have been on Bentyl for a "burning band" around my lower waist into my back. It helps slightly, however, the last couple weeks I have noticed a lumpy tight feeling in my left lower side pelvis next to the "V". It is uncomfortable to sit straight up, and my pants are feeling far to tight. I have messaged my doctor and have had no replies. They took a biopsy and I still have had no replies to what those showed. The mean asshole doctor said I didn't show signs of colitis, or crohns, or an ulcer, and no actual active c diff!!!!! OKAY, so what am I feeling and why am i having such a hard time making it through my day without feeling like I am losing my mind. I have bled out my bum since my colonoscopy, and no help what so ever! I have completely changed my diet and doing all I can with supplements to try to heal myself. This has been one of the hardest struggles I have dealt with physically. My hubby found this forum lastnight and reading some of your similar stories, had me in tears, because I understand much of what is said here, so now I know I am not alone! Anything will help, suggestions, you need to vent, I am here too!

NanciT
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Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: New C Diff patient w/ not alot of help from doctors, looking for anyone who may understand....

Postby NanciT » Wed Oct 03, 2018 10:00 pm

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

With the ongoing bleeding, you need to contact your GI and also get the results of any biopsy that was done. It's not clear if the GI was stating he did not see anything during the colonoscopy. If you have been on Vanco it's possible any CDIFF test may be negative.

Did they put you on a taper dose of Vanco? How is the D? Has it improved ?

Sorry you are going through this, it can take time to get through and recover. I hope things start to improve

NanciT


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