Diagnosed in February

[Louisegal]

I am so happy my daughter found this site for me. I had never even heard of c-diff until I got it. I became sick in February while I was on vacation in Jamaica (not a good place to be sick). The doctor in Jamaica said it was some kind of intestinal infection and put me on cipro. Two weeks prior to my vacation I had a tooth pulled and was told to take anti biotics in case of infection.

Upon returning home I was still going to the bathroom 20-25 times a day and feeling very weak. My GP wasn't available so I saw an assistant. She put me back on the cipro. I was so sick the beginning of March that my daughter took me to the emergency ward - finally someone tested my stool and I was told I had cdiff. I was put on flagyl for two weeks and within 48 hours of being off of it I started my trips to the bathroom. I went to my GP and he prescribed a second round of flagyl. I came off it and was back in the bathroom within 48 hours. I am now seeing a Gastro Doctor and am on my 3rd round of Vanco.

This illness really gets to you because the health providers I was seeing treated it like it was no big deal. But I was truly suffering with it. I started to think I was just being a big baby about everything and tried to get on with my life but I literally could not leave the bathroom!

I don't understand how something this nasty is not better known. Why aren't there better treatments available? And why are most of the health care providers in the dark about how serious this disease is?

Thanks for letting me sound off!!

[Nancy1]

Louisegal,
Welcome to the group that no one wants to join. Check out Dr. Borody's article as well as the one by Dr. McDonald (in the FAQ section under Articles by Experts). Also see the FAQ section for all kinds of useful info.

I got cdiff after Cipro plus levaquin. I was misdiagnosed for a month because my primary care doc said I couldn't have a bacterial infection after taking those antibiotics. Hahaha. During that month of endless D she put me on the BRAT diet and kept telling me that I would get better. I kept telling her that I wasn't, but she made me feel like a bad patient because I wasn't better. I finally asked to see a GI doc, and was diagnosed with p colitis by sigmoidoscopy. I had cdiff for 8 months, my GI doc gave up on me, and I eventually found a helpful ID doc. I was finally cured by pulsing, which I found on this site.

You raise some very good points. Many health care providers think "It's only diarrhea" and just don't understand how miserable it is to be chained to the toilet day and night. Read what Bobbie wrote in the Suggestion/Complaints/Vent section, dated May 3, in response to the "ACK" post. We definitely need more treatments for recurrent cdiff! It is a puzzling disease and varies a lot from person to person. We here have wracked our brains about ways to better publicize cdiff. We've contacted Oprah and written to our newspapers, health departments (including Dr. McDonald at the CDC), and legislators. If you have any ideas, please tell us.

Let us know how you are doing. We care.

[Louisegal]

Nancy 1,

I just saw my GI doctor today. They are going to try tapering with me. Every two weeks I'm to cut out one vanco (I'm currently on 4 a day). He said he went to Dr. Lamount's (?) conference at Beth Israel last week and was told that D for three or four weeks after stopping the vanco should be considered normal and not a relapse. Wouldn't it be nice if we all could go to and be treated by a Doctor who has lived through this! Pooping your brains out for three to four weeks before you can go back on medicine is not my idea of normal!

I noticed and commented on the number of pamphlets that were in the Doctor's office about different diseases and asked why none were on Cdiff. He said they were all from the drug companies and as far as he knew he has never seen a pamphlet on Cdiff. Maybe the makers of antibiotics don't want the word to get out.

If someone out there has a way with words maybe this disease could be publicized by submitting articles to women's magazines such as First, Family Circle, Woman's Day etc.

Again, I'm so glad I founds this site. It's nice to know I'm not alone in this.

[Bobbie]

Louisegal,
Believve you are "right on" for reason for lack of pamphlets on C. diff. in docs' offices as most as "ads" for drugs by written by drug companies.

One woman on the UK site is try to write one, but I think we'd have problem compiling one without a lot of problems, cost, and then probably a lack of acceptance by docs. in the US. Don't think they've had much luck in the UK either. There is a definite need for one. But how to accomplish?

Glad the site has been helpful.