Hospital refusal to test for C-dif

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sister
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Hospital refusal to test for C-dif

Postby sister » Fri Jul 08, 2016 11:41 am

I am a 72 year old female who has had three separate occurrences of C-dif, during which two occurrences had relapses. I was seriously ill each time, because when I was hospitalized, they refused to test for C-dif, because I did not have watery diarrhea at any time. Each time I was severely dehydrated. The first time they refused to test for C-dif, the hospital refused to test, I was sent home after a week. I was told my blood levels were fine; nothing was wrong. Within hours, an ambulance rushed me back to another hospital where the doctor refused to even run an IV or give pain or nausea med... that is until 3 hours later another doctor came in and immediately had an IV run, pain meds administered and called in an infectious disease doctor.... seems I had been sent home from another hospital with a severe kidney infection, C-dif and colitis. They finally agreed to test for c-dif even though I had no diarrhea.

This summer I again became quite ill and again the hospital refused to test for C-dif.... However, a doctor had the nurses administer 3 water enemas..... causing what rules required... watery diahrrea. They were able to test; however, too much time had lapsed and damage was done. I ended up being hospitalized four times in a month for most of the month.

The infectious disease doctor told me I have lingering c-dif. I do not want to become so critically ill again. I am badly bruised from failed IV insertion attempts. I want to be tested for C-dif when I feel it is coming back

Why are guidelines in place that will not permit testing for C-Dif unless there is watery diarrhea? Why does one who is already experiencing severe abdominal pain have to have water enemas?

What are suggestions to help me if this reoccurs?

Lisa33
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Re: Hospital refusal to test for C-dif

Postby Lisa33 » Fri Jul 08, 2016 1:49 pm

I believe that these procedures are in place so that doctors do not over-treat or unnecessarily treat with these strong antibiotics. The reason why these superbugs exist is because of the abuse of antibiotics. If you treat when not necessary, you can build up a resistance to the antibiotic, and then when you really need it, it will not work. That is my understanding of why these rules are in place. Typical c-diff symptoms are frequent watery D with the urgency to go. However, there are a few like yourself who do not get the watery D. Some posters have said that they have had constipation with c-diff. I guess anything is possible, but watery D is usually signs of c-diff. I believe that posters who have not had D have been tested by request of their doctors.

I'm so sorry for all of your suffering with this. Have you been treated with vanco or dificid?

Lisa

NanciT
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Re: Hospital refusal to test for C-dif

Postby NanciT » Fri Jul 08, 2016 1:57 pm

My suggestion would be to find a GI near you that knows CDIFF. Take a look at our list of GI's under CDI and see if any are in your area or where you can get to one. It can be very difficult if the doctors are not familiar with CDIFF and the treatments. As Lisa has mentioned, you don't want to "over treat".
Take a look at the list and see if you can at least call one.
Hope you feel better soon
NanciT

amyc
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Re: Hospital refusal to test for C-dif

Postby amyc » Fri Jul 08, 2016 3:09 pm

You said on another post that your doctor wants to do a colonoscopy. I would ask for a FMT to be performed with the scope, because they can see what is going on and then give you the transplant, which is probably your best chance to wipe out a low level or lingering infection. This site has had posters who were suffering with inflammatory bowel disease and C diff at the same time cured by the FMT. If your GI doesn't do the FMT, ask to be referred to one who does. If the GI won't give you that referral you can return here, let us know what state you live in, and people can recommend doctors they have used close to you.

beth22
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Re: Hospital refusal to test for C-dif

Postby beth22 » Fri Jul 08, 2016 5:53 pm

Sister - I moved your last post under General Discussion. It would be better to stick to one post. Check that one for other responses that you got.

Hospital labs generally will not test solid stool, but Quest labs has for me. I don't know if it varies by state. If you have a Quest labs near you, I would take a stool sample there and have them test. They can also do a PCR test for you, but the doctor has to write PCR on the Rx or they do the old test.

roy
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Re: Hospital refusal to test for C-dif

Postby roy » Fri Jul 08, 2016 6:17 pm

I posted similar to this before but putting it here as well

But also consider that you can test positive for c.diff and not have it as a disease.
Dr only consider c.diff a disease if it over grows and causes loose watery stools.
Around 1 in 20 would test positive and not need treating because c.diff in your gut is normal for a lot of people.
Maybe your Dr suspects it's not c.diff that's making you sick and wants to confirm it with a colonoscopy
If c.diff meds don't work and symptoms don't say c.diff it's probably best to let the Dr take a look.
Also have they checked your gallbladder?
Gallstones caused all those symptoms for my wife's Mom and there's loads of other things that could cause what you describe.

ramu
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Re: Hospital refusal to test for C-dif

Postby ramu » Fri Jul 08, 2016 8:22 pm

I am sorry to hear that you are having so much trouble. I hope you find comfort soon. I can not answer the questions you asked about testing, but some posters put some excellent answers. However, I have a few questions of my own.

Are warm water enemas useful in dealing with c diff? Did it offer you any comfort? How did it feel afterwards? Sorry to ask,
Jonathan

sister
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Re: Hospital refusal to test for C-dif

Postby sister » Fri Aug 26, 2016 8:48 pm

After they finally tested me for c-dif, I was treated first with flagyl, then vancomycin with taper dosing which took two months. I am now on dificid. The infectious disease and my PCP said no to the colonoscopy ordered by the hospitalist who later called to tell me he made a mistake.

My exhaustion level is great. The pain and nausea are gone. The infectious disease doctor said he will help me whenever this reoccurs.... seems any amount on antibiotics bring c-dif on for me. Also, he will be called in any time I am put on antibiotics. Hospitalists and nurses sometimes have their hands tied. My history of c-dif should have been checked before they refused to test. Am deeply grateful for an aggressive infectious disease doctor.

sister
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Re: Hospital refusal to test for C-dif

Postby sister » Fri Aug 26, 2016 8:50 pm

Forgot to mention, I was seriously ill when testing was refused. I had the same symptoms as when I had c-dif four other times. Multiple tests confirmed c-dif.

NanciT
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Re: Hospital refusal to test for C-dif

Postby NanciT » Fri Aug 26, 2016 9:46 pm

Very happy to hear you found an excellent ID who will support you, that is such a battle with this illness. Hopefully, the Dificid will do the trick and you won't be dealing with this.
Take care
NanciT

Keeway
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Re: Hospital refusal to test for C-dif

Postby Keeway » Sat Sep 03, 2016 4:44 pm

Your hospital experience is similar to mine.........BTW, trying to change my password and haven't been able. Do you have a phone number for a Board Administrator?

Keeway

roy
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Re: Hospital refusal to test for C-dif

Postby roy » Sat Sep 03, 2016 7:07 pm

Keeway.
Once registered you can not change your password.
Why do you want to change it?
There is no administration phone number.


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