Breakdown in support of the patient - losing hope

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Hinkey
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Posts: 1
Joined: Sun Feb 17, 2019 2:45 pm

Breakdown in support of the patient - losing hope

Postby Hinkey » Sun Feb 17, 2019 3:33 pm

I won't tell you the months of horrible treatment I have received within the health care system, and how they totally failed me, because I am sure others can attest to the overall nature of the medical profession and the supporting (or lack thereof)within the systems....but I have been suffering with CDIFF for over a year and finally after three different fecal tests found out. I had a FMT scheduled twice and cancelled by the hospital both times as apparently there are politics now between the physician and the labs supplying the product, and was told by the scheduler that there are debates now on some hospitals even considering doing them any more due to costs (assumed they don't make enough money or the insurance companies won't be able to code them to make enough money on them outside of a colonoscopy).

I had HOPE....the HOPE that was ripped away from me TWICE, and I am very very very depressed and having a very hard time right now.

On the paperwork at the local gastro office the last question on the sheet is are you suicidal. I filled in "HAHA"....and said to them....who would not contemplate suicide if you had to live like you have food poisoning the rest of your life....I mean I have no quality of life, you cannot function as a normal person in society..... etc. The gastro physicians don't want to hear this because they are scared "s#@!less" of the psychological aspects of this nightmare pathogen and DO NOTHING to help their patients deal with the mental side of it.

I said to two gastro doctors.....the only thing in life we have any control over is what we put in our mouths....and when we take that away (basically I am at the point post three rounds of CDIFF antibiotic treatments), that I just want to stop eating all together because life is so horrible.

They look at me like a deer in headlights, and are not prepared to "treat" the patient for anything other than gastro symptoms.

What has happened to their oath "harm none"....what has happened to them being compassionate to the "total patient" and their needs. I have enough of how I was mishandled on this situation I could probably take multiple doctors to court, but don't have the time and energy to go there. iI just want to get well, but have no confidence in what lays ahead.

But I also can't mentally deal with the possibility that this is forever....what kind of life is this?

How is everyone else dealing with this? I mean I am not living a quality life. I can't even take a 30 minute walk unless I have purposely fasted for 2 days prior to know that I am not going to have to run to a restroom. I feel like someone is running a knife and burning my insides with a blow torch. The bouts are extremely exhaustive and hard to function post a "blow out" for the following 24 hours. I have driven myself to the ER and they just gave me anti nausea medication and Benadryl. I live alone and have no family or friends within hundreds of miles.

I am quite sure I am not alone, but I also don't see myself living the rest of my life like this.....

AllisS
Long Time Contributor
Posts: 1875
Joined: Fri Sep 07, 2012 10:52 pm

Re: Breakdown in support of the patient - losing hope

Postby AllisS » Sun Feb 17, 2019 4:07 pm

Hi Hinkey, welcome to the site. Please take a look at our guidelines for all new posters; you can find them on the Intro page.

It looks like you would like some responses to questions that you've posed. If that's correct, I suggest that you move your post to the C. diff General Discussion category. This "vent" section -- the purpose of which, I agree, is confusing -- is unlikely to yield much in the way of response.
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

MKW
Regular Contributor
Posts: 392
Joined: Mon Sep 26, 2016 9:49 am

Re: Breakdown in support of the patient - losing hope

Postby MKW » Sun Feb 17, 2019 5:11 pm

Hi, as suggested you may also want to post in another section.
Sometimes I wonder how bad it could of gotten for me if I had not found this support site when I did.
All of my initial doctors were ignorant.
My first didn’t even tell me it was contagious. And I have two daughters.
This site saved me.
Ultimately I had to seek out an FMT at a teaching hospital out of town -on my own, by making phone calls and doing research online. My doctor did not do this for me.
I found a c diff expert myself and traveled for my care. The FMT via colonoscopy cured me in March 2017.
I still suffer with pi-ibs and still come on this board to support others and continue to learn. Because no, we can’t count on all doctors.
You’ve got to self-educate and try to find a competent practitioner.
There is so much info on this site, you should review everything from testing to treatment options on here.
The moderators are extremely knowledgeable. You have come to the right place for accurate info and support:-)

NanciT
Long Time Contributor
Posts: 2764
Joined: Thu Sep 18, 2014 12:01 pm

Re: Breakdown in support of the patient - losing hope

Postby NanciT » Sun Feb 17, 2019 5:32 pm

I am sorry you are going through this,especially for a year. I understand the lack of hope but will tell you that you can get through this. Yes, I agree MANY physicians and nurses see CDIFF as "diarrhea" that can be treated but it is MUCH more and very debilitating. I changed GI's 3 times through my year with CDIFF, I also could not get well.
I was in a similar position in 2014 when the FDA started to call FMT's experimental and my GI refused to do one, I had been sick for many months at that point and found only ONE GI who would consider it. There was a 4 month wait to see him. I live very close to 2 very well known teaching hospitals and no one would consider one at the time. I failed Dificid for 10 days and had no where to go at the time. I went on a DIficid taper which my GI finally agreed to do....and by the time I got to that appt, the GI decided the DIficid taper should continue and if I failed he would do one.
Thankfully, it worked but I recall telling the GI I think I might now survive this. It was a long road.
Have faith you will get through this, unfortunately it can take time. If it's possible see and new GI or ID

NanciT


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