Becky's Case History

[Guest]

My battle with c-diff has been a long and trying one. I saw my doctor in june of 2002-showing some symptoms of a UTI...frequent urination, etc. He put me on an antibiotic-but said he was not completely conviced it was a UTI. (Oh if only I could go back to that moment in history knowing what I know now!) One week later I began having stomach cramping and diarrhea with vomiting. I also had a very tender belly. I went to the ER-and the doctor who met me there said she thought it was probably my appendix. But another doctor in the room also made the comment "diarrhea typically is not a symptom of appendicitis..." (again-another "a-ha" moment looking back). The next day they removed my appendix and gave me more routine antibiotic to prevent infection. The pathology on my appendix came back normal. <BR> <BR>I continued to be ill and so my doctor's office prescribed me compazine to relieve the nausea. I continued having cramping and diarrhea for another month and then they decided to do an ultrasound of my stomach/gall bladder. The ultrasound detected some sludge in my gall bladder so they decided to remove it. Again-more routine antibiotic. And surprise-the pathology on my gall bladder was also normal; minus some very slight swelling. Upon my discharge from the hospital, I was told by 2 doctors that if I still had symptoms that I definitely must have some type of Inflammatory Bowel Disease-i.e. Crohn's or Ulcerative Colitis. Well, I continued to be sick as a dog and now was referred to a Gastroenterologist who ordered an endoscopy and colonoscopy. In the meantime, I made another visit to the ER and was this time told that perhaps this was all just anxiety and she gave me a prescription for ativan. My endoscopy detected a hiatal hernia and GERD. With how frequently I was vomiting this was really no surprise to me. After the colonoscopy I was told that it almost positively looked like I had Crohn's disease because of all the ulcers lining the walls of my colon. So-I was put on medications to treat Crohn's, including prednisone-a steroid that prohibits your immune system from functioning properly (so any chance I did have of fighting off what was going on inside of me pretty much died with the predisone). The Gastro doc was astounded when the biopsies came back negative for crohn's disease. He told me to stop the meds and wean off the prednisone. I remember sitting in his office just crying because i continued to be in intense cramping pain and I was 25 years old; I had lost 30 pounds; and I did not have a clue what was wrong with me. He gave me some abdominal muscle relaxers and a stool sample kit. 4 months after being sick as heck and I was finally given a stool sample kit. <BR> <BR>Well-the sample came back positive for c-diff and I was ecstatic. I thought "awesome-I finally have a diagnosis and it is as simple as a bacterial infection!" I thought I was nearing the end of my nightmare. Little did I know, my nightmare was just beginning. <BR> <BR>I went on one course of flagyl....then a second...and the gastro doc really did not want to deal with me anymore-now that I had something as "minor" as a c-diff infection. His time was better spent working with patients who actually have serious illnesses. What a joke. <BR> <BR>I changed to a new primary care doc and demanded a referral to the only infectious disease doc in the area. I went to see her and she helped me find a hospital pharmacy who was willing to give me some vanco "under the table;" (great-until I received my bill for it!) Not one, not two, not three rounds of vanco was doing it. I would make it 10 days off vanco and have a major relapse every time. <BR> <BR>By now I was spending quite a bit of time on this site doing research. I took the concept of pulsing to my infectious disease doc who said she preferred I did not research things on the internet because who really knows what is out there. It turned out to be the internet that saved my life. <BR> <BR>I read and researched on Dr. Borody's infusions and at first was skeptical-but after being so sick at age 25 and actually thinking that this infection was going to kill me-the idea sounded more and more appealing. I e-mailed Sharyn-Dr. B's nurse and spoke with her on the phone and ordered my kit. I took 10 days off work-moved back in with my parents-my father was my donor and my mom is a nurse practitioner so she agreed (following a period of skepticism and doubt) to help me do the infusions. The infusions were EASY! I have now been off vanco for 13 weeks. Yes, there have been some rough times since the infusions-but my 6 week toxin tests both came back NEGATIVE! I do suffer from IBS now-probably partially due to the removal of my gall bladder and my long battle with c-diff. I continue to take culturelle daily and refrain from much dairy product. The best indicator that I was starting to get better was watching myself put on weight. When I finally fit back into some of my clothes again-it was a great day. <BR> <BR>My faith in the medical profession is non-existent. The biggest lesson I have learned is the importance of being your own advocate. And that is a darn hard thing to do when you have no energy and are feeling miserable and struggling to get through each and every day. <BR> <BR>To those of you fighting the battle of c-diff: my thoughts and prayers are with you. If you can look into doing the infusions-DO IT. Get past the taboo of it and take the chance on finally feeling better again. I intend to keep up the fight in my neck of the woods here in Northeast Wisconsin. I will be doing all I can to spread the word and help those fighting c-diff. <BR> <BR>let me tell you-it was a great day to go back to my infectious disease doctor with my infusion information in hand and say-"guess what i found on the internet?!?" <BR> <BR>Lastly-thanks to shelly for your support and encouragement. I hope to do for others what you have done for me.