Shelly's Case History

[Guest]

I am fairly new to this site but thrilled to have found it and want to share my story. <BR>Last July (7-11-01) I had a simple leg surgery to remove a benign tumor. I contracted a staph infection and had a surgery three weeks after the first to clean out the abcess at which time they placed a PICC line in my arm for I.V. antibiotics every eight hours for the next ten weeks. They also had me taking oral anitbiotics as well. Four weeks after the second surgery, I had to have a third one because the infection was not clearing up. Let me add that I am a Registered Nurse whose specialty is Labor and Delivery so I had never heard of C-Diff. The next to last anitibiotic I was put on (by Infectious Disease Docor)was Clindomycin. He said to let him know if I had mucous, blood, or diarrhea. At my next appointment, I told him that I was having 7-8 bowel movements/day and there was blood. He said he did not think I had C-Diff, pulled the PICC line, and switched me to oral Septra for the next 30 days. I continued to have same problems but assumed it would go away when I went off of the antibiotics. I went to Disneyland a few weeks later over Thanksgiving (off antibiotics)with my family and while riding It's A Small World (slowest ride in the park), it hit full force. I had a huge hot flash, broke out in a sweat, and was sure I would embarrass myself on the ride. Immediately ran for the nearest bathroom and had terrible diarrhea. This continued for the remainder of our trip. I assumed it was something I had eaten. While driving 18 hours home, I could eat and drink very little or we would have to stop at every bathroom. I waited another week before going to the doctor. He immediately thought of C-Diff because of my history and sent a stool culture. Unfortunately, they lost it and I had to repeat it. It took almost two weeks to get the results back that were positive. They put me on Flagyl for 14 days in December and it made me even more sick and did nothing for the diarrhea and other symptoms. I was too scared that they would repeat the Flagyl so I did not tell anyone for almost a month. By this time, I was so dehydrated that the diarrhea turned to constipation. I couldn't eat or drink, and I felt terrible. Fever and chills happened and the intestinal cramps were awful. I finally went to a G.I. Dr. who said that I couldn't still have c-Diff because I was already treated for it and I didn't have diarrhea. They tried several meds such as Prilosec that just made it worse. Finally, they did an EGD that showed inflamation in the stomach. The Dr. that did the EGD said it sounded like C-Diff to him and they repeated the culture and it came back positive. This was in Feb. 2002. They put me on Vanco for ten days and I felt much better while on it. Within three days of going off, I knew it was back (or still there). I called their office and it was obvious they did not believe me. They repeated the culture but it was too soon after the vanco and it came back neg. At that point, I believed that it was gone but did not know why I was so sick. I had to have a fourth surgery in March '02 on my leg because it was not healing right. One week after the surgery, my stomach was in such spasm, and it hurt so bad, that I went to the E.R. The Dr. there was terrible to me. He made me feel stupid for coming in. They gave me a G.I. cocktail and sent me home. I spent the next three weeks going to my PCP every week saying that something is wrong. Again, because of the constiptation, they could not believe it was C-Diff. Finally, they did a repeat culture after I had a good amount of blood in my stool. It came back positive for C-Diff. I called back to the G.I. office and asked for the longer treatment they had talked about earlier. I was on Vanco with a tapered dosing for ten weeks. They also had me take acidophylis, brewer's yeast, and citricel. I was sure this would work. As I came down from the Vanco, I started to feel nauseas and food was not sitting well. I couldn't eat much at a time. I thought maybe it was because we were on vacation (back at Disnyeland). I finished my Vanco 6-25-02 and by the end of the week, I was so sick I couldn't do anything. I was taking Zofran for the nausea and knew the C-Diff was back. The first culture came back negative (too early). I had wait it out for proof. Fever and chills came back, as well as all the stomach and intestinal stuff. I am 5'7" tall and last year I weighed 128 pounds. Prior to the ten weeks of Vanco, I was down to 116 pounds, went up to 122 while on the Vanco. Over the next three weeks, I dropped to 112 pounds. I looked horrible. No energy, and felt worse than I ever remember feeling in my life. I waited four weeks after going off the Vanco to try another culture which came back positive. I then told my insurance company that they would send me to Infectious Disease at the teaching hospital in the bigger city. They agreed. My first visit sounded positive, like she might have an idea. She named several procedures including Iga infusion and fecal infusion. She put me back on Vanco so I could eat and drink while trying to decide what to do. She did a cat scan that came back fine. She then decided not to do the colonoscopy and decided to see how the Vanco worked. She wanted me to go off the med after ten days. I refused. I told her I could not be that sick again and would stay on Vanco the rest of my life if I had to. My next appointment was four weeks after the first one. She had no ideas. I told her I wanted to do the fecal infusion...could she help me? She kept saying that it was experimental. My reply was that so is all this dosing with Vanco. What adverse reactions could there be? She said she would call around and see if anyone was willing to do it or had done it. I am suppose to hear from her in a few days. She also gave me more Vanco. Because of the four surgeries and chronic infection, I was just diagnosed with a Pulmonary Embolism (blood clot in my lung) and I have no doubts that C-Diff is partially responsible. I am now on Coumadin and the shortness of breath and chest pain are improving. <BR>As a health care professional, I am completely floored at how little doctors know about this. I don't think they can even come close to understanding how desperate C-Diff sufferers are. I have e-mailed Dr.Borody to see if he will let me do the infusion at home since I am a nurse. If it is possible, I would love to help other people in the states perform this procedure. Until I found this site, I thought I was the only one who could not get rid of this bug. I have lost almost a year of my life to this and I resent it. I want to be active again, especially for my four children. If I find out any news from the I.D. Dr., I will post it immediatley. I would also love to know if there is anyone else who suffers C-Diff with constipation instead of diarrhea. Shelly <BR><BR>[Guest Posted by: 'shelly']

[Guest]

update on my situation....I have been on this course of Vanco for six weeks now. Only taking 250mg 2/day and can still feel the shakes, have occasional stomach and intestinal cramping, and can't find anyone here who can help me. I emailed Dr. Borody and asked for help. His nurse Sharyn responded and I am going to do the infusion. I feel like the longer I struggle with this, the more health problem will arise. She said I should receive the packet of info next week and I am very excited. People really freak out if I tell them what it is. I have been trying to leave that part out. Two days ago, I increased my Vanco to 250mg 3xday and hopefully that will help real soon. I have gained six pounds over the last six weeks (all on Vanco) so I am up to 118lbs. If anyone out there has done the infusion and has info to share with me, please feel free to email me. <!-- BBcode auto-mailto start --><a href="mailto:finkc6@cs.com">finkc6@cs.com</a><!-- BBCode auto-mailto end --> . Will update soon. We all have to beat this. I am tired of it ruling my life.<BR><BR>[Guest Posted by: 'shelly']

[Guest]

I forgot to add on my last post that I was tired of the constipation. I decided to treat it myself and started taking Colacex2/day for four weeks. I stopped taking them about three weeks ago and stools are still good (?). I go 3-5 times per day. They are soft but formed. My husband had his labs ordered today for being my donor. I will have mine ordered on Monday. Hopefully, we will start infusions two weeks from that day. I am really hopeful that this will work. I went to see a Hematologist today about the blood clot in my lung and she asked me who was taking care of the c-diff. She was very surprised when I answered "me". <BR><BR>[Guest Posted by: 'shelly']

[Guest]

I wanted to let people know how things are going with the infusion. My husband had all his labs done early this week and we are waiting for results. I met my new PCP today and she was great. She admitted that she is new to C-Diff but has heard of the procedure. She wrote the RX's for normal saline and Nulytley. She was supportive of this procedure and told me she has another patient that is going to do it! As long as my husband's labs come back good, all is a go. I have started the low fiber diet and he has started his high fiber diet. I am very excited and fell very certain that this is the answer for me!! <BR><BR>[Guest Posted by: 'shelly']

[Guest]

My husband's labs came back fine. Did the Nulytely yesterday (sunday). Not good stuff but I got through three liters of it 5 ounces at a time, every thirty minutes. It definitely clears you out. Started the procedure today and found that we have some fine tuning to do with consistancy of 'mix'. I am hoping that it just gets easier from here. Have had great support from people online. Thanx <BR><BR>[Guest Posted by: 'shelly']

[Guest]

Day seven of treatment. It has been a little stressfull. Had problems with the bags and tips but Liz2 helped me out and all is better now. It is easier for me if the 'mix' is thinner than what Sharyn says. I also found that after all tummy rubs in each position, I do knee/chest for about 5 minutes and I don't feel the urge to go right away. I am eating very well. Stomach feels a little yucky in the a.m. but by lunch I am doing well. I am afraid to be too optimistic because of my history. I am going to probably do twelve days of infusions just to be safe. Stools are good. I have had a lot of good support online and with phone calls. It has really helped. <BR><BR>[Guest Posted by: 'shelly']

[Guest]

six weeks from end of infusions and I feel terrific!!! I am going to get a culture this week. I can't believe I waited so long. It was so easy. It has no side effects. No meds. I eat whatever I want. Anyone who has had two or more failed attempts with meds should try this. There is nothing to lose and everything to gain. Meds have side effects. This is the least harmful method to your body. Dr. borody is great talking you through it. I wish everyone on the website felt this great. This procedure makes the most sense of any of the things offered to me or I read about. Will post when culture comes back. <BR><BR>[Guest Posted by: 'shelly']

[Guest]

Great News!!!!!!!!!!!!! My first cdiff culture came back negative!!!!!!!!!!!!! I am going to do a total of three, but one a week. I owe Dr. Borody and Sharyn my life......literally. I would love to help anyone do this procedure so they could feel this good, also. <BR><BR>[Guest Posted by: 'shelly']