Chrissy's Story - 3 years later and still on Vanco

[Chrissy]

My name is Chrissy. I am now 27 years old and this is my story.

In 2000, I went to my PCP for chest pain and was told I had an ear infection and was given Ceftin. No concerns from the doctor about my heart because I was so young. Three months later I started with diarrhea. This lasted about a month with calls to the doctor daily and countless negative stool tests. Finally, I was admitted to the hospital where I had my first Colonoscopy and was told I had C-diff. After four rounds of Flagyl and constantly being sick from it, they put me on Vanco. Two rounds of Vanco seemed to do the trick.

A year later I had a sinus infection and was given a Z-pack. A few months later I became symptomatic again. I was given Vanco and things got better. A few months later I became symptomatic again and was given another round of Vanco. This seemed to help.

I had my wisdom teeth removed on May 30, 2003 and had to take Amoxicillin. On August 8, 2003 I was admitted to the hospital for 6 days. I was assigned a GI doctor in the hospital and had a colonoscopy. They told me I had Ischemic Colitis and gave me Bentyl. I was told I would get better, and that they would be sending me to a hematologist. I was discharged, returned to work and continued to get worse. I called the GI doctors almost everyday. They kept telling me to take more Bentyl. Finally, my two weeks were up for my follow-up visit. I couldn't even stand up straight anymore. My doctor had the nerve to tell me that, "Hmm. You don't look so good"! He scheduled a Sigmoidoscopy for the next day. There were 8 people in the room with me during my Sigmoid - just what I wanted...to feel like I was dying and then have 8 people looking at my butt! I was told that I had the worst case of Ulcerative Colitis they had ever seen. They gave me Colazol, Prednisone and Imodium and scheduled me for another visit in two weeks. I continued to get worse. I couldn't sleep because of the Prednisone; I was bleeding a lot, running to the toilet between 30 and 40 times a day. I couldn't eat anymore, was vomiting, couldn't stand and could hardly talk anymore. I went from 135lbs to 110 in a matter of one month. I called my family doctor crying and begging for them to get me in with another doctor for a second opinion. It was terrible. I went for a second opinion, did more stool samples, more blood work and was told to hang in there until the results came back. That night, I fell of the toilet. I couldn't even sit up anymore. I laid on the bathroom floor praying to die until my husband (now ex-husband because he couldn't handle the illness) found me. We went to the ER and waited three hours before they took me back. I had a fever of 102, a UTI, extreme dehydration and obviously something wrong with my colon. I tested negative for c-diff again. They gave me pain meds, an IV, took some X-rays and admitted me. They did a CT scan the next day which showed that my entire colon was inflamed from my rectum to my cecum. You couldn't even touch me without me screaming in pain. They told me that if the inflammation didn't go down in 24 hours that they would be removing my colon. They gave me liquid Vanco as a last ditch effort to keep my colon. 24 hours later, apparently I was getting better even though I didn't feel like it. They told me that my white blood cell count was where they see leukemia patients’ levels. It was three days before I even really knew where I was. I was in the hospital that time for 6 more days. When I was discharged, I didn't even have enough muscle strength left to get up the two steps to get in the house. I had been taking Vanco 4x's per day every day since 2003 until April 2006.

During those three years, we tried unsuccessfully many times to taper me off the Vanco. Within days I would start bleeding and the diarrhea would start again. I tried Vanco and Questrin powder, a Vanco and Rifampin combo, more Vanco by itself, Vanco and Florastor, Vanco and just yogurt and most recently (from March to September) a 6 month taper of Vanco by my new Infectious Disease doctor. I have had 2 GI doctors, 2 Infectious Disease doctors and 1 Immunologist.

I have been off the Vanco since September 29th. Just yesterday, Sunday, October 22, 2006, I started with the pain, mucus and diarrhea. I am very upset that I cannot beat this. I figured I would get back on-line and see what other people have been through and see if I can find some other "cure" to try. Here's to more tests, another Colonoscopy and who knows what else...