Is a Infectious Disease doctor helpful in treating Cdiff?

[jackie24]

Serious question since I have an infectious disease doctors appt on Friday. Are they more helpful than a regular GI except for FMT’s? What I am mainly asking is I have had Cdiff three times and currently on a Vanco taper and I am still suffering with trips to the bathroom (solid stool now), headaches, abdomen pain, and feeling like I can’t do anything for heart palpitations so if I am not a candidate for an FMT then what else can they do for me? I know 100% that once I stop the taper it’s gonna come right back. Any help is appreciated!

Jackie24

[NanciT]

Hi

I found mine far more knowledgeable because they deal with it more. My case has been especially difficult after so many rounds of medication with my original infection 2014/2015.
If you have normal stool it sounds like you are recovering. It can take time.

It's good to have an ID, mine knows a Dificid taper is what works for me and I don't have an issue( had CDIFF again last year) with getting that treatment. I battled the insurance company but the ID is the expert in the field.

Hope your appt goes well and you get some answers

NanciT

[jackie24]

Thanks so much NanciT! This has been so hard! It has literally taken my life away from me. My anxiety is so bad that I can’t get away from the two a day Vancos to go to the one a day for fear of relapse. I run out totally next Tuesday and I know I am going to panic. My GI doctors I have get fed up to easy amd just wash their hands of it and that has left my hanging. My primary care doctor doesn’t k ow anything about it and won’t even discuss it (changing to another one next month). Do they offer any other treatments besides Vancomycin and Dificid like for pain or otherwise?

[Lissaucd]

Hi Jackie!

I had an infectious disease doc, she was very nice. Some ID docs are really good! Give her a chance to see what she can do for you! You have solid stools!!!! That’s wonderful!!!!! Trust me, I know how u feel about the anxiety!!! Read my prior posts- I come here all the time for support Ans reassurance bc it’s scary! I felt the same, it took my life away from me. But Im slowly getting back to normal… it takes a lot of time.
But, what if you are worrying about something that may not happen? You may not relapse. Recovery is rough and can be just as bad as c diff. Not sure if you are in California but I have a GI doc who is amazing. Others have used him as well. Doctor Stollman in Oakland. He does do video appointments. He is absolutely amazing and knows C diff in and out.

[jackie24]

Lissauard,

Thanks so much for the encouragement. Unfortunately, I am here in Virginia where our healthcare is questionable. I just hope this doctor is nice because I have met so many during my journey that were not so nice. I just wish I could find out how I acquired Cdiff in the first place! I know I took a ton of antibiotics a couple months before but the only symptom I had for the first month and a half was stomach pain. Then when I went to the ER and had my Covid shot and had to drink oral contrast for a CT that's when my WD raised its nasty head. This infectious disease doctor is at the place where my old GI is who completely dumped me because I was so anxious and emailed them with questions to much, so I hope this doctor is a lot better than him! I do have what I consider solid stools but I still go 3-4 times a day and have horrible stomach cramps. I guess we will know after the Vancomycin runs out if I am truly recovering or not.

Jackie24

[Lissaucd]

Trust me I know, I have no clue how I got c diff. No antibiotics at all here- years! I got vaccinated for covid and started knowing really weird stools. They were yellow and most of the time mushy. Then I went to Yosemite, came back three days later with watery d! Basic stool tests all normal. (They didn’t check for c diff) wel, couple days later, still had issues so I emailed my GI who tested for C diff- positive via PCR. They treated me with vanco- which I should of asked for a toxin test first. I get when they get annoyed with so many questions. But, when they started to do that to me, I went above them. I pay for health care, I want answers and that’s their job. It’s great you have so many questions- you have to be your own advocate. And if you are not getting anywhere tel them you want to go out of network to a specialist in California!!! You got this! Keep calling and get the help that you need Ans want to make you feel more comfortable about your situation. Also, can the cramps be from nerves? I had them every morning!!!!! Also, I still go 2-3 times a day. I bet mine is nerves Ans trying to eat more!

[NanciT]

Both Vanco and DIficid are for the infection. AFTER these are complete some may have on and off symptoms for awhile, I did for a year the first time. I had been on 1 year of treatment at that point and it is harsh on the system. It took time for my recovery.

You may complete the Vanco and need to give it time. I know it's scary, we all are. But it is the treatment process. If you look through the site you will see it takes time for many. If things are solid now, that is a great sign the Vanco has worked. Talk with the ID. There are medications for Post IBS if that is what you have after treatment.

Hang in there

NanciT

[jackie24]

Thanks so much for everyone’s advice and encouragement!