Cdiff and difficult PCP

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Finzzzup
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Cdiff and difficult PCP

Postby Finzzzup » Wed Jan 10, 2018 6:48 pm

Hi... I was admitted into the hospital on Christmas Day and tested positive for cdiff. I was released after 4 days and was told to follow up with my PCP in 2 weeks. They had me go in last Friday which also happened to be my last day of Vanco. I told the Nurse Practioner I saw that I had yet to have a normal stool and conveyed what the GI had said at the hospital about it would be best if I took a second round to ensure it was out of my system. She did not agree with him and said I was doing fine. Yesterday morning (Tuesday) I woke with the same diarrhea that put me in the hospital and camped out in the bathroom for hours. .Called my PCP right away and was told they would get a msg to my dr...no response by 3 so I called back to be told he was gone for the day and they would make sure he got the message today. I finally received the call at noon saying To come in tomorrow at 9am. .that he didnt think it was the cdiff this time. I can pretty much guarantee it is..once you have it, you know what it looks and smells like... and they want to do a stool sample.. Im thinking good luck with that. .I emptied my entire system yesterday and have been on a liquid diet since...plus I was told a test within 14 days of stopping vanco could throw a false pisitive ot negative...Has anyone else had issues like this? And if so, what did you do? I really don't want to go back to the hospital as they put me on blood thinners and then wont let me out of bed without calling a nurse.. it is hell if you have cdiff!!!! :)

roy
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Re: Cdiff and difficult PCP

Postby roy » Wed Jan 10, 2018 7:13 pm

The hospital will be aware that they must treat you according to your symptoms and not wait for a test.
I am confused as to why you were given blood thinners!
The risk of internal bleeding is high with c.diff and blood thinners could increase the risk.
If I were you I would go to ER now and not jump through the hurdles your PCP wants.

Finzzzup
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Re: Cdiff and difficult PCP

Postby Finzzzup » Wed Jan 10, 2018 7:47 pm

Thank you for your response. I am very frustrated with the people at my PCP!!!!
I have the appt at the PCP at 9am... think I may go just to see what they say since it is already 7pm and I have loaded up on yogurt and my probotic today. ... If they try to tell me is not the cdiff, I will go straight from there to the hospital, and once I get the positive result , they will wish they had looked into my symptoms a lttle further! Just making me wait 2 days has my blood boiling!

On the blood thinners...
They said they were giving me the blood thinners to prevent blood clots? My poor stomach is still black from the injections.

Ril
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Re: Cdiff and difficult PCP

Postby Ril » Wed Jan 10, 2018 9:25 pm

You should definitely not be getting blood thinners to treat c diff. I don’t know if something else was going on but I would question that for sure. It is NOT a c diff protocol. And I am not sure why the hospital GI dr would say right from the beginning that you should take a second round of vanco. That too is not protocol. Many people only need one round.( If he thought that perhaps he should have prescribed Difficid but many insurances will not pay for it especially without authorization)

You also should not have another c diff test. You should be treated or not based on symptoms. You are correct that the test result will not be accurate and even if it is negative it proves nothing. If they want to do a stool test for other pathogens that would be another issue.

If I were you I would also immediately make an appointment with a good GI dr for follow up. Your PCP does not seem well equipped to handle this issue. If you are unhappy with your PCP remember that you are the consumer. You can find another dr.

Let us know how you do.
Rita

Finzzzup
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Re: Cdiff and difficult PCP

Postby Finzzzup » Wed Jan 10, 2018 10:10 pm

I honestly don't know why they had me on the blood thinners.. I know my white blood cell count was 18 when I arrived at the ER and mu stool test was positive for cdiff.. that is all that's on my record online.

I just found a local GI this evening who takes my insurance and will be calling in the am to see about getting an appt. And yes.. if my PCP does not do right by me, I will be finding a new one.

I will update and let you know the outcome.

amg
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Re: Cdiff and difficult PCP

Postby amg » Wed Jan 10, 2018 10:35 pm

If a hospitalized patient is too sick to get out of bed and walk A LOT each day, then the standard of care, as long as there aren't contraindications, is to give a low dose of blood thinner (often lovenox subcutaneously) to prevent blood clots in the deep veins of your legs. These are DVTs and can migrate from your legs to your lungs and be quite dangerous or deadly if they do.

I'm so sorry to hear you might be relapsing. Usually doctors treat a relapse by symptoms, especially if it's too soon for a repeat stool test to be accurate.

If you are getting very sick, don't hesitate to go to the ER rather than wait for your clinic appointment. C diff can make people really sick really quickly. Try to stay hydrated. Good luck!

georgina
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Re: Cdiff and difficult PCP

Postby georgina » Thu Jan 11, 2018 1:24 am

In Romania the blood thinners are used on a hospitalized patient that doesn't get out of bed only when he is old aged or the coagulation blood test shows that the patient is at risk for clots , or preventative in surgery but never to a young and otherwise healthy patient that has a infectious disease.

Bobbie
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Re: Cdiff and difficult

Postby Bobbie » Thu Jan 11, 2018 8:09 pm

Agree with the others. Dump the doc.

Have had problems with' high BP or strokes in the past?

There is a Spring at the bottom of the hospital bed that alerts the nurses when u are out of bed. 3 or 4 nurses crowded in my bathroom with me to Chat so I learned to release the spring, Then I would carefully make my way into the bathroom and pull tHe c.ord when I was done. Do be careful. I had a shattered elbow so was careful.

Let us know what happens.

beth22
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Re: Cdiff and difficult PCP

Postby beth22 » Fri Jan 12, 2018 3:05 am

I was hospitalized for 3 days in 2016 for complications of the flu and they wanted to put me on blood thinners as well because of being in bed. I refused and told them I would get up and walk about the room, which I did. It seems to be the protocol in some hospitals, but you have the right to refuse. I did fine and got up at least once an hour. I was not allowed out of the room because I was in reverse isolation for a very low blood count, but I just walked in the room.

Finzzzup
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Re: Cdiff and difficult PCP

Postby Finzzzup » Sat Jan 13, 2018 7:20 am

I had my appt with the PCP and fortunately Iwas lucky enough to get a sympathetic nurse and nurse practioner this time around who seemed to know a little more about c-diff. She was even willing to listen to things I shared that I had learned about it. She told me to start adding fiber rich foods into my diet to absorb the fluids in my intestines. I will so so, but only in small increments as I dont want to go in the other direction which is the norm for me as I take opiods daily for pain. I just have to find a balance.

The only issue I had with her was that she said since I had not had any diarrea, or anything else for that matter, for 24 hours, she believed I was on my way to recovery...I laughed and told her not to bet on it.. it wasonly because I had completely emptied everything out of my entire system the say before and it takes a few days before it gets thru my system and starts up again.. I had just went thru it. My stomach had camped like hell the whole time, and I just wanted to crawl into a ball and cry. She just told me tofollowI have the appt at the PCP at 9am... think I may go just to see what they say since it is already 7pm and I have loaded up on yogurt and my probotic today ... If they try to tell me is not the cdiff, I will go straight from there to the hospital and once I get the positive result , they will wish they had looked into my symptoms a lttle further! up next week and make an appt with a gastroenterologist (have anappt 2/14).

I make my follow up appointment and was given my appt notes and a handfull of papers with foods I can eat, which ones to avoid, etc. When I got to my car, I was readng my appt notes, as I always do, when I read, take Vancomycin every 6 hours as directed. I was like WTH.. I did not get a prescription..so I went back inside, showed the front receptionist the paper and she sent a msg back to the dr abt it and said they would call me.This is at 9am Thurs. 9am Fri I call back and was informed they had faxed the script to my pharmacist at 11 am Thursday! Thanks for telling me! I call my pharmacist and he says he didnt have it in stock but it was coming on yesterdays truck.. I finally got it at 6pm!! At least the did something right.. They gave me a 30 day supply!!

I hope everything calms down a little now and I can heal.Yesterday evening I was nauseous and throwing up. It was wierd because it like my food was not digesting from the day before. It lasted a few hours.

I am looking forward to my gastroenterologist apppt. At least I know I wont have to worry abt him being clueless like the others!!! Thanks again for the wonderful input/advice. I will continue posting throughout my cdiff journey in the other topics.

God Bless,
Theresa

roy
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Re: Cdiff and difficult PCP

Postby roy » Sat Jan 13, 2018 7:43 am

If someone has c.diff they still pass watery D many times a day even if they have not eaten for several days.
Eating has little connection with c.diff D frequency.
if I was not having BM for 24 hours I would be VERY cautious about starting a 30 day course of vanco.

Finzzzup
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Re: Cdiff and difficult PCP

Postby Finzzzup » Sat Jan 13, 2018 10:53 am

I did exactly the same thing after being admitted in the hospital and testing positive for the cdiff. I spoke with the gastroenterologist who took care of me at the hospital about it and he said it was normal what I was experiencing. I think he said it has something to do with my going on a strict all liquid diet. It wasnt until we added grits and rice and fruit which added fiber that I started having results.

Finzzzup
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Re: Cdiff and difficult PCP

Postby Finzzzup » Sat Jan 13, 2018 10:55 am

I forgot to add that once I start adding the solid foods and start going, I make up for lost time quickly!! Lol

NanciT
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Re: Cdiff and difficult PCP

Postby NanciT » Sat Jan 13, 2018 2:17 pm

Vanco can cause nausea, I used "Sea Bands" throughout the 3 months I was on Vanco, they really helped, most pharmacies carry them.
I would definitely keep the appt with the GI. Be careful with your diet, fiber can be irritating while being treated and after, it takes time. I kept a very bland diet especially if the Vanco causes nausea

Hope you feel better soon!
NanciT

Roxanne
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Re: Cdiff and difficult PCP

Postby Roxanne » Tue Feb 27, 2018 2:16 am

Glad you changed Dr's.

I had the blood thinner at one stay, made no sense as I was running to the restroom constantly.

FYI, when I get a lot of pain/distention I have baby food, already made, no added sugars and I handle it pretty good.


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