Dorothy's case history

[Guest]

I am a 36 year old R.N. who had taken care of cdiff patients for years. I learned in nursing school that cdiff was a complication of the use of multiple antibiotics that people with compromised immune systems were prone to. Usually when someone gets it in the hospital, the doctors throw some Flagyl in with the other antibiotics and assume the patient will get over it. A repeat culture is usually done while the patient is still on Flagyl, and when it is neg. the patient is considered cured. The is a very typical scenario. If the diarrhea comes back, it is usually assumed that it is something else. It is a real mess! <BR>Anyway, I believed this and assumed that it was true. In 1997 when my mother got cdiff, I was shocked. I had never heard of someone getting it from a simple course of oral antibiotics, and when Flagyl didn't cure her and her colonoscopy showed pseudomembranous colitis, the doctor told us it was the worst case he had seen. Luckily for her 14 days of vanco ended it, and so far she's been OK. At this time I did a little research, but I wasn't on the net yet so I found out little. There just wasn't that much out there. <BR>In 2003, I was pregnant with my 3rd child. The OB did a routine culture for group B strep and told me that it was positive and that it was very common and would just require 1 dose of IV antibiotics during delivery. I didn't think that much about it. <BR>During the baby's birth in Feb '03 they gave me the Clindamycin and that was it. I went home with a beautiful healthy baby. Two weeks later, I started to have some crampy low abdominal pain, and a few loose stools. I didn't think that much about it figuring my system was recovering from the birth. Then one night, I was up all night with urgent cramps, running to the bathroom, sometimes having foul smelling diarrhea and sometimes just mucus and blood. I felt weak and feverish. I decided to go to the ER the next day when this continued all day. <BR>I presented with: history of Clindamycin use;fever 102; WBC count 19,000; abdominal pain and cramps; frequent watery diarrhea with foul smell, copious amounts of mucus, tissue and blood; and exhaution and weakness from having diarrhea all day. I mean it was like I had cdiff stamped on my forehead with all of those classic symptoms!!!! The resident told me I had the flu and to go home and take Tylenol and Immodium. I asked if he could send a cdiff culture because I suspected that was what I had, and he told me,"CLINDAMYCIN WOULD NOT GIVE YOU CDIFF." He took my stool sample and sent it for all different things, but NO CDIFF TEST! I didn't find this out until 2 days later when I went to my primary and he called for the results. The ER doc sent me home with a computer printout on Immodium that actually said,"Do not take this medication if you experience fever and or blood with the diarrhea." <BR>The next day I felt a little better from the Immodium they gave me, but decided that I'd better not take it anymore, because I knew that if it was cdiff it would make things worse. I wanted to believe him that it was the flu, but I doubted it. I made an appt. for the next day with my primary. <BR>When I went to see my primary the next day, I was so sick. Doubled over in pain and running to the bathroom every 15 minutes. I cried in the office while I waited for him and when he came in I told him I felt like I was dying and begged him to help me. It was also my 35th birthday, and I was so hormonal being 2 weeks postpartum. He listened to my story, examined me and told me that there was no doubt in his mind I had cdiff. He called the hospital for the stool cultures and found out they didn't send them. All of the other tests were negative. He was angry at how I was treated in the ER, so at least I felt like someone was on my side. He stared me on flagyl that day without a stool culture because he didn't want me to get worse waiting for tests to come back. He was concerned about the blood, and said I should take the flagyl for 10 days and get better, and then see a GI. <BR>The flagyl helped with the diarrhea and the fever and I did feel better, although I was weak and nauseous the whole 10 days. I couldn't eat and I had that awful metallic taste in my mouth. Around this time I went on the Internet and found cdiff support.com. I was horrified by the stories, and was shocked that cdiff could be so bad. I leaned more that day than in all the years of nursing. I was determined to be in the 80% who get over it with 1 round of meds. 3 days later I relapsed, and was sicker than the first time. I called the doctor, and got someone else on call. She said she would renew the flagyl, but I wanted vanco. I had learned enough form the support site to be assertive and ask for what I wanted. She said fine and called in the RX. The pharmacy didn't have any, so I had to call all over the state between trips to the bathroom, to find some. We finally found a small pharmacy that had enough in stock to get me started. I took the vanco (250x4) and they helped me move up my appt with the GI. When I got in to see him he listened to my story and told me that he had seen some cases of recurrent cdiff and that I should stay on the vanco for 21 days and that should do it. I was finished for 1 week when the cramps started early one morning. The same thing all over again by noon, the cramps, fever, mucousy diarrhea, the back pain and the blood. I was so upset and depressed. I thought I had beat it and was now back at square one. I reached the GI that afternoon, and he started me on vanco again and scheduled a colonoscopy. <BR> On the day before the scope, I did the prep, which I had been dreading, and it actually went pretty well. I felt cleaned out, and it was a pretty good feeling. All the time I had been dealing with the cdiff, I always felt like no matter how much I went, my bowel was never quite empty, so in a way the prep helped. The scope went fine and the report showed cdiff infection with pseudomembranous colitis. The GI agreed to read a recipe for pulse dosing and said that he would prescribe the necessary vanco. I thought that would be the next step. <BR> One night after that I was on the Internet and I came across some of Dr. Borody’s articles about human fecal transplants. At first I thought they had to be kidding, but when I read about them, and read the case histories of those who had done them and the high success rates, I started to think that maybe it was worth a shot. I told my husband and I think he though I had gone over the deep end, but when I explained it to him, he said he would support me in whatever I needed. He just wanted me to get well. He was so great through the whole thing. Anyway, I sent a note to Dr. Borody at an email that I found on the board and outlined my situation. I didn't even know if he would get it, and I didn't really expect an answer, but within 12 hours, he sent me a note saying that he felt bad for what I was going through, and that he thought he could help. He told me to email my phone # to his nurse Sharyn and she would call me. I was so shocked. I couldn't believe that he had gotten back to me so fast, sometimes it was hard to get my own doctors here in the states to call me back. I was even more surprised the next night when Sharyn called me on the phone from Australia to discuss my case. She treated me like she had no other patients to worry about. We talked and she was so patient and answered all of my questions. She told me that she thought (based on all of the research that they do and all of their successes) that I should skip the pulse dosing and just do the infusions. She told me I would have a great shot at getting well right away, she could tell what a toll the whole thing was taking on me. I went back to my GI with articles and data to show him on the fecal infusions, and he said that he was sure it did work, but he didn’t want to get involved. He basically said if I did it he didn’t want to know about it. I wasn’t happy with this, so I found a new GI. Dr. Robert Schuman was wonderfully open minded and took the time to listen to what I wanted. He told me that he had seen patients do very well on long tapers, but if this was what I wanted to do he’d read up on it and help me. When I spoke to Sharyn again, we arranged for Dr. Schuman and Dr. Borody to speak on the phone and conference on my case. By this point, my husband’s screening had come back negative and we were ready to start. I had been on full strength vanco for 11 weeks. Sharyn did not want me to taper down at all but to stop cold turkey the night before the bowel prep. That was kind of scary to just stop, but I did and I did another bowel prep just like the one I had done for the colonoscopy, and started the next morning. I did 10 infusions over 14 days and never doubted for a second that it would work. I did them at home with the help of a nurse friend, and Dr. Schuman checked in with me by phone to be sure that all was going well. Each infusion took about an hour including set up and clean up and I was able to have normal days while this was going on. Right away I felt better than I had in months, and I was finally hungry again. I had lived on cream of rice, chicken, yogurt and bananas for 5 months and suddenly I was starving. I finished the infusions and I felt fine. A few weeks before I started the treatments I started taking Primal defense which I felt had also helped. I had tried a few other Probiotics without any real results. I still continue to take Primal and may take it for life. I also continue to be a yogurt eater.

[Guest]

It has now been 20 months since my infusions and I am doing well. I don’t have any bowel problems or residual symptoms and I survived a course of antibiotics last year for strep throat. <BR> Cdiff has taught me a lot and has opened my eyes to a lot of things that I guess I was not aware of before. I learned what it is like to be sick with a really scary disease, and to fear that you will never get well. I have stopped believing that the doctors have all the answers, or that they are always right. I like to think that I have more compassion for the patients that I care for, and for all who are sick. <BR> The one thing that I can’t get rid of Post cdiff, is the fear of bacteria and getting sick. I think way too much about illness and fear of taking an antibiotic now. I don’t know if that ever leaves you as long as the possibility of getting cdiff again is out there.

[Dorothy]

Well it's been a while so I thought I'd post an update to my story. I have been c-diff free for almost 4 years now. I don't take probiotics daily anymore, but I continue to eat yogurt pretty much every day and I do a "course" of probiotics every few months to keep feeding the good strains. I haven't had an antibiotic since the Spring of 04 and hope to keep it that way. As a nurse in a busy ICU I continue to fight for c-diff patients and to help educate them and their families. In the 4 years since I had c-diff, I have seen a huge change in how c-diff is treated and viewed in the hospital, and have seen a huge jump in the number of cases. Things are getting worse, but at least the doctors are starting to realize that c-diff is a serious matter. Recognizing the problem is always the first step in curing it.
For those of you who are suffering with this awful disease, don't give up! There is hope, I got better and you will too. Knowledge is power and you can use this site to empower yourself to get well. People do recover and get back to normal. I am living proof.