Judy's Case History
Updated on 3-28-99 at bottom of page.
I am a 27 year old, female residing in New Jersey. I was first diagnosed with c-diff in July 1998. However this was not my first time with the disease. In the summer of 1997, I had contracted c-diff after having been on antibiotics for a sinus infection. I was put on metro for 10 days at 250mg x 4. The c-diff cleared up and that was the end of it. I had NO relapses!!
In April 1998, I had contracted another sinus infection. I was on antibiotics, which cleared up the infection. The sinus infection returned again in May and in June/early July and antibiotics cured it both times. However, around July 4th I started to have diarrhea and my doctor, after taking a stool sample, diagnosed me with c-diff. I was put on metronidazole at 250 mg x 4 for 10 days. However, my symptoms were not improving. The doctor, a general practitioner, put me on 500 mg x 4. My condition still did not improve. I was then switched to vancomycin. After two days on vancomycin, I was starting to feel better. However, I had a severe reaction (swelling) to the vancomycin. I was then taken off of the vancomycin. I was then switched back to the metro.
After finishing each course, I would get sick again. Finally, by mid August I had finished the many courses (so many I can't remember the exact number, sorry) of medicine and was feeling better. Three days later, I started having symptoms again. I was sent to a gastroenterologist. A colonoscopy was performed and I was diagnosed with c-diff! I was AGAIN put on metro, for 10 days at 250mg x 4. Amazingly enough, after this course I was symptom free!! I began to live my life again. This was the last week in August. Much to my dismay however, on September 29th the symptoms returned. I saw the same gastroenterologist again, and he put me on another course of metro. After that course, I was well for about two weeks. Then the symptoms returned. The stool sample came back negative for c-diff. However, I was put on metro yet again. At this time, I decided to seek another opinion. This was now November, five months after my original diagnosis.
I was lucky enough to get an appointment with one of the top gastroenterologists in New Jersey. The doctor is also affiliated with a teaching hospital. I thought this would be beneficial, the more input the better. This doctor wanted to rule out any other causes for my symptoms. I was sent for a complete range of tests. This included numerous stool samples, a colonoscopy, an upper G.I. series, and many blood tests. The only test that came back positive was the c-diff test! I was put on another course of metro. I questioned this, but was reassured that the body does not build up a resistance to metro and it might work.
I was better on the medicine, but still felt, as I have in the past, that the metro was only CURBING the symptoms not curing them. I explained this to the doctor when he called to check on me. However, he told me to give it time. This was probably around Thursday. I finished the medicine on Saturday. Sunday I started having symptoms again. I had an appointment to see the doctor on Wednesday. He was shocked to see how sick I was. I believe at this point the doctor believed that I was able to read my own body. I was put on metro and rifampin. I was also sent for more stool samples, blood work, and an endoscopy. Now, it was the middle of December.
It was also at this time that I started seeking alternative treatments. I started to see an acupuncturist and purchased sacc. boulardii. I have been seeing the acupuncturist once or twice a week. I do believe it has helped, if not with the disease, at least with the cramping and general discomfort. I have been taking the sacc. boulardii four 310 mg capsules twice a day.
I was feeling much better. In fact I had no symptoms for about a week or 10 days. I had not felt this good since September. Then, around December 27th (?)the c-diff returned. I was again put on metro. After a two week course of the metro, I was to start taking Colestid (generic for colestipol) one 5g packet twice a day and lactinex ( a lactobacillus tablet) four tablets four times a day. After having been on the metro for a week, my symptoms were not improving at all. The doctor took me off the metro and started the other regimen. About a week into the new meds, the doctor prescribed Dicyclomine, 10 mg four times a day, for the cramping and pain. It has been about two weeks since I started the new regime.
I believe the Colestid is working, letting the toxins form and then binding them. It seems every couple of days or so I have an episode, then it will subside. I have two weeks left of the medicine. I am not sure if the lactinex is working or not. It is impossible to tell. I am still taking the sacc. boulardii (even though the doctor does not want me too), and am still seeing the acupuncturist. I also intend to see a Chinese herbologist.
I was also recommended by my current gastroenterologist to see a doctor at Johns Hopkins in Baltimore, MD. He is an infectious disease specialist, whom I've been told is some sort of 'guru' with c-diff. I will be seeing him in mid February, two weeks after I finish the current medicines.
Throughout this seven month ordeal, I have been watching what I eat. For July and August, I had no alcohol, caffeine, dairy, beans, high fat content or spicy/hot food. In September when I was feeling better, I slowly introduced dairy, caffeine and alcohol. At my next episode (the end of September), I returned to my original diet and have been on it since then. Since November, I have restarted my normal vitamin and herbal routine. (Multi, E, C, Cranberry, Echinacea, and Calcium) I also make sure I have a hearty intake of fruits and vegetables. I have also cut down my meat intake drastically, and practically eliminated refined sugar. I love soup and have been eating it alot. In December, I started taking a "Pro-Green" type mixture. However, after a week I had a rash develop on my jaw line/neck area. I discontinued it and the rash disappeared.
As far as symptoms, I usually have severe cramping, when its very bad I feel as though I cannot even stand up straight. I usually have tenderness and discomfort on my lower left abdomen. Depending on how severe an episode is the diarrhea can vary from three times a day up to 20+. The stool can vary from pure water, formed and loose all in one episode. It can also have a high mucus content and sometimes be bloody (this is only from irritation of the intestines and only occurs with the worst days). On the really bad days, I become very week, get dizzy and see alot of black spots. (not pass out though). The meds occasionally, more like rarely, make me feel as if I am normal. As I stated earlier, since July I have felt my symptoms curbed never cured by the meds. I would say most of the time I still have cramping, an overall sour stomach and discomfort.
Before this whole mess, I was basically healthy. I am an asthmatic but it is not severe. I have not had a bad attack since I was very young. I am susceptible to colds and such because of my asthma. Yet I would consider myself healthy. I have always watched what I eat, and been a normal weight (115 lbs). Granted though, my past hetic and stressful life makes eating at home and at regimented times difficult.
Prior to the c-diff, I was a full time graduate student and worked part-time. The disease caused me withdraw from classes last semester and miss many many days of work. Luckily, my department at school and my boss at work has been very understanding. However, I am now a semester behind in school and out the tuition money. I have enrolled this semester part-time and hope to make it though the entire term. I am very enthusiastic about the doctor in Baltimore and will keep the group updated.
The six week course of colestid seems to have worked for me. After starting it in January, although I was still having cramping, discomfort, and was still weak, I was pretty much symptom free. In February, I finished the course of colestid and remained on the lactinex and s. boulardii. In the end of February, I saw the specialist at Johns Hopkins. He was very informative. The most wonderful news was to hear that one way or the other the c-diff problem would eventually go away. He recommended that I stay on the s. boulardii for two more weeks and the lactinex for four more weeks. He also suggested that I do not have dairy products until four months from the last episode.
I have also decided to continue with my current diet, adding items in the following manner. (my own idea): no caffeine until sometime in April/May, no alcohol until May, no spicy foods until June/July. I also do not intend to mix dairy, caffeine, alcohol and spicy foods at one meal for quite a while after I have reintroduced them to my diet. One step at a time is probably safest. (remember this is just my own thoughts) I am now seeing the acupuncturist once every other week. My energy level is still very limited, although I do believe it is slightly improving. My stomach is still not what it used to be, that I suspect will take a very long time.
I hope that I am now c-diff free. I have hesitated to say that because I did go three weeks without a re-occurrence in the past. However, I am now nearing my sixth episode free, colestid free, week! I hope this is it!
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