New member confused by doctors’ differing advice

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mamahans
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Joined: Tue Apr 12, 2022 2:58 pm

New member confused by doctors’ differing advice

Postby mamahans » Tue May 03, 2022 1:18 pm

I’m a 53 year old female. Just as background I’ve had Type 1 Diabetes for 43 years and Lupus.
I was (not confidently) and ??? diagnosed with cdiff and hospitalized in January 2022. I was given 5 different antibiotics for, they weren’t sure what, I was discharged, then I was confidently diagnosed with cdiff and re-hospitalized in February 2022.
I had an extremely swollen colon and what they called constipation by stool on CT. I had terrible, nonstop smelly diarrhea. I completed a Vancomycin round and was given another 14 days when discharged. I was sent home with widely varied diet advice. I did lower fiber, low fat, no dairy or lactose. At different times I have attempted probiotic pills or foods. I may have overdone kefir and yogurt when I tried as the results were painful. I still do yogurt daily.
My symptoms have never stopped. Diarrhea has continued since, my fever will go up to 101.7 or so unless actively on Vanco or Difficid I have stomach cramping, some has been severe. I am losing weight. My body looks scary thin!
After being retested at one point, my first gastro said my cdiff test was still positive, put me on antibiotics again. Some of the symptoms improve, mainly fever.
I switched gastroenterologists because I still wasn’t getting better. The new gastro tells me other dr was wrong, that my cdiff test wasn’t positive where it counts. He told me I should stop taking antibiotics and start eating whatever I want. At this point, I don’t have any idea what to do.
I’m seeing a new gastro from a different hospital practice on Friday.
I’m so depressed from being sick and the diarrhea that has continued since January and the stomach pains. Some of my closest family members believe I’m dying of whatever I have. Thanks for listening.

GtrGrl
Regular Contributor
Posts: 204
Joined: Tue May 04, 2021 4:43 am

Re: New member confused by doctors’ differing advice

Postby GtrGrl » Tue May 03, 2022 2:13 pm

I would ask what they mean by ‘where it counts’. That’s vague. And you’re clearly suffering with something, they need to investigate further! Hopefully the new doc will be clear and competent. Hang in there! Trust you’ll get an answer in the end.

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: New member confused by doctors’ differing advice

Postby beth22 » Tue May 03, 2022 9:18 pm

Hi mamahans and welcome to the site. I agree with GtrGrl that "where it counts" is very vague. What type of test did you have - a PCR? Also, were you tested for other pathogens with a stool culture and even a test for ova/parasites? It is possible that you might have had a combination infection and the vanco helped the c diff, but not the other. You might ask your doctor about trying Dificid if you are still infected with c difficile.

I can tell you that I had to stop eating yogurt when I got c difficile and all dairy products. Kefir did not agree with me either. You might try and stop the yogurt for a couple of days and see if that helps you. Eating whatever you want is not generally good advice for someone who has had continual D. Many people have trouble with fiber, dairy, some with gluten. I would start with rice, applesauce, bananas (although I did not tolerate them either) and something like baked chicken or turkey. Make sure your vegetables are cooked. I was able to tolerate cooked zucchini and carrots and many do well with cooked green beans.

BetsyS
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Joined: Wed Jan 08, 2020 10:33 pm

Re: New member confused by doctors’ differing advice

Postby BetsyS » Wed May 04, 2022 9:22 am

Hang in there. I too had chronic D after my CDiff treatment, and was losing 2-3 lbs a week and huge patches of hair. My Infectious Disease Dr. determined it was no longer CDiff and most likely related to the damage from it, the treatment, and my cancer surgeries. She told me my colon needed time to heal. I could not even tolerate the BRAT diet, so she put me on a diet of lentils rice and turmeric and referred me back to my GI. He pretty much confirmed the same thing and prescribed Cholestyramine to help bind my stools. He had me gradually add food back to see what my triggers were. The weight loss finally tapered off and I can tolerate most foods.

Everyone's journey to recovery is different. This site has been great as people share what has worked for them. I have been blessed with two physicians that understand CDiff and my contributing factors. I am high risk for recurrence, and went through a period where I had recurring low grade CDiff. They advised not to treat and adjust my diet accordingly and got me through it. In my case chronic D is my new norm, but I've learned to navigate.

Wishing you good luck on your journey and with your new doctor; I hope you find some relief.

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

Re: New member confused by doctors’ differing advice

Postby NanciT » Wed May 04, 2022 11:13 am

Hi and another Welcome to the site

First I would find out what the tests results were. If D continues non stop I would consider seeing an Infectious Disease specialist.

Hope you feel better soon

NanciT


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