Mary's case history

Guest · Postby **Guest** » Tue Oct 16, 2001 3:09 am

I am a nurse and have often run tests on hospitalized patients for c. diff. I did not know what this was until this year! Below is how I am still learning about this disease. On Aug 13, 2001 I had a sudden attack of diarrhea. At the time I was working in Honduras, and it is not too uncommon to have diarrhea when in developing nations, so I was not immediately upset. After 2 days as it gradually got worse, I decided to ask a doctor with whom I was working what he had that might help. He gave me Doxycycline, which I took for 2 days with no change. Visiting a different doctor, I subsequently took Levoquin, then Flagyl and finally Vermox. I returned to the US with continued diarrhea, in fact it was getting worse. By the time I returned home, I was having 10-15 loose stools each day and having enough urgency that I needed to wear disposable underwear. During this entire time I did not lose energy, I found no blood in my stools and I almost never had any other digestive problems. The only problem I did have was one time when I became electrolyte depleted, but Gatorade quickly took care of that problem. I was always very careful to drink lots of bottled water, and after the electrolyte problem I paid attention t also drinking Gatorade daily. On Sept 11, 2001 I visited my regular family doctor who did the first lab tests to determine the cause of the diarrhea. The only test which came back positive was c. diff. His (and my) assumption is that I developed a parasite or infection in Honduras which was killed off by the antibiotics there (probably the Doxy), but the diarrhea continued when the c. diff developed from taking the antibiotics. Since I had taken Flagyl in Honduras without relief, my doctor here decided to skip that step and started me on Vanco. I took 125 mg 4 times a day for 10 days. Once I received the diagnosis, I began trying to learn more about this disease. In doing an internet search, I discovered this site and have received more info and reassurance here than from anyone or from any other site. During the treatment, I was frequently frustrated, I found my emotions on a roller coaster, and I often got depressed, as I needed to limit activities based on my constant need to be near a bathroom. I returned to work and found that relieved the depression, but it was even a problem when I found myself spending lots more time in the bathroom than usual. None of my co-workers gave me problems about this, but my guilt often got in my way. I received encouragement from others here at this site that not everyone has serious problems, and I tried to remind myself that there was no need to get concerned until I gave the treatment a try. At the end of the 10 days of Vanco, when my symptoms were unchanged, my family doctor gave me an order for enough Vanco to finish off two full weeks, and also referred me to a gastroenterologist. I also contacted a naturopathic doctor I knew. I had appointments with both of them on Oct 3, ( my 54th birthday) and neither of them were there – the GI doctor was not able to be in his office and I was there before he called in that he would not be there. The naturopathic doctor phoned me an hr before my appointment to tell me he couldn’t make it. Both rescheduled for the next day. The naturopathic dr is also my massage therapist, and I had a great massage, but he had almost no information for me regarding natural treatments of c. diff. The GI dr again was not in his office. My new appointment was made for Oct 9. After being stood up by two doctors, one of them twice, I decided it was time for me to become even more pro-active in this situation. I did several things – first I phoned my family doctor and asked if he would order a new set of lab tests, and second I e-mailed several friends asking for prayer for this problem. The e-mail was sent out on Oct 4 (Thurs). Suddenly on Fri night at work (I work an overnight shift) I did not have even one visit to the bathroom! I got home and still had diarrhea, but the frequency all that day was greatly reduced! My own prayers changed from asking for help, to thanking God for this change. On Sun afternoon, I felt bad – it was difficult to exactly define how I felt, I just didn’t feel good. I slept later into Sun evening than usual and got up just in time to go to work. The rest of the night I felt very good. On Mon morning I read my e-mail and found one from a friend telling me her entire church had prayed for me on Sun afternoon! On Tue, Oct 9 I visited the GI doctor who got my lab results and told me they were negative for c. diff! I still do have diarrhea, but the frequency is less than half what it was at it’s worse, the urgency is gone and the amount each time is also greatly reduced. I am now taking Questran to try to normalize my stools. I am pleased to announce that today I am free of the c. diff! I refuse to speculate on tomorrow or beyond. I will continue posting updates to encourage those who may be new at this as well as those who are still struggling.

Guest · Postby **Guest** » Wed Oct 24, 2001 4:25 pm

Many things have happened since my initial posting here. I started taking the Questran once a day on Oct 9 and was told to adjust it as I needed (with the goal of causing formed stools) to twice a day or to every other day. I was also to phone the office on Oct 15 with an update on my progress. So, here's what's happened since then: On Oct 9 thru 11 I took Questran once a day (boy is that nasty stuff - I gag every time I drink it, but so far have taken every dose without any vomiting.) There was no significant change in my stools, so on Oct 12 I increased it to twice a day. When I phoned the office on the 15, I was told to increase it to three times a day and phone in a report on Oct 19. By that time, the diarrhea was more liquid than even semi-formed and had increased to approx 10 times a day and that odor had returned. When I phoned the office with that info, they scheduled me for a sigmoidoscopy on Oct 23. During the sigmoidoscopy the doctor pointed out to me the white spots of pseudomembraneous colitis, which he told me is a definitive diagnosis for c. diff., verifying that it had returned. He is not at all comfortable with the number of stools I am having and the amount of Questran I am taking, and also did not see very many of the pseudomembranes. He believes now that the more serious problem might be a parasite (he mentioned the possibility of Giardia) which I probably picked up while in Honduras and am still carrying. Since the best treatment for Giardia is Flagyl (and I was on that in Honduras), and since that is also a well recognized treatment for c. diff., he has now started me on more Flagyl, with a new dosage. My initial dose in Honduras was 250 mg 3 times a day for 7 days. This time I am taking 500 mg 3 times a day, and he talked about keeping me on it much longer. He also wants me to remain on the Questran. I am taking acidophilus capsules, my own over-the-counter vitamins and I am eating a good organic yogurt with live cultures (I've been doing this since the original diagnosis), and today I will be ordering the s. boulardii (I'm beginning to believe I should have been taking this for a long time, but I will start now). I have also been in touch with Gloria (The Country Herbalist) and the two tests she has posted for us. Today I have eaten the beets and am still awaiting their return. Once this is over, I will do the celery test. I am charting my stools using her charts she has so graciously provided for us. This info will all be useful to me, and it may be that the doctor can find some new evidence if I share this with him. Look for an update after the beets and the celery, and after tomorrows visit with the doctor, when I should have test results back from yesterday. Oh yes, one more thing, of all the antibiotics I took in Honduras, my doctor believes that the Doxy was probably the culprit. I've read here many times that Levoquin has a low risk of causing c. diff., and it is not believed that the Flagyl would cause it.

Guest · Postby **Guest** » Thu Oct 25, 2001 3:50 pm

Today's doctor visit was not exactly what I wanted to hear. I had not had much change in my stools since starting the Flagyl - at the time of my appointment I had taken 5 doses. He said he wanted to see me with only one or two stools per day by the end of 48 hrs on Flagyl (I was having 10-15 per day when I started on the Flagyl!) My lab tests came back negative for everything he tested (c. diff and ova and parasites). He told me today that the small amount of pseudomembrane he found on the sigmoidoscopy could be a hold-over from when I was positive for the c. diff., and he's not convinced that it is even active now. He is still thinking giardia is the problem. He said the more accurate test would be a biopsy which he would collect through an EGD. I am to phone him tomorrow afternoon, and if I am not down to one or two stools in 24 hrs I will have the EGD/biopsy on Sat. If you are following the two tests Gloria suggested to us (one using beets, the other using celery), or if you are interested in results, I ate beets on Wed at 10AM and have not yet seen a red stool from them. I haven't yet tried the celery (probably after Sat).

Guest · Postby **Guest** » Wed Oct 31, 2001 5:38 pm

Now it looks as if I have a new diagnosis to share! I did have the EGD on Sat, Oct 27, 2001 and my doctor collected both lab and biopsy specimens. It took until today (Wed) to get the results. As of today, my tests show I am free of c. diff, giardia and any other parasites he tested for in the colon. On the EGD he said he found small ulcers int he stomach, and the stomach tests came back positive for h. pilori. So, the diagnosis for the continuing diarrhea is "idiopathic chronic diarrhea of travelers" (how's that for a 'handle'?) Anyway, his explanation to me is that sometimes there are 'bugs' that cause diarrhea that can't be isolated and diagnosed. This type of diarrhea (so he tells me) will resolve itself, but it could take up to 15 months!!! He said I do NOT have a malabsorption problem, which explains why I am not losing weight in spite of all the time I spend in the bathroom. I will run out of Flagyl on Fri and Questran on Sat, and he said not to renew either, but to phone him on Mon. In the meantime, the h. pilori in the stomach he tells me is treated with another antibiotic, and he said we would address that at another time. I responded that he'd just give me back the c. diff to get rid of the h. pilori. He told me that was why he isn't doing anything about it now, but will watch and address it later. Even though this does not directly relate to c. diff, I will continue to post updates and let you know what's happening in my gut, as well as how I do whenever he decides to give me a new antibiotic.

Guest · Postby **Guest** » Thu Nov 15, 2001 10:23 am

My latest update since my new diagnosis! A week ago my doctor started me on Nexium which is one of three antibiotics they give for h. pylori. He started me on this one because I was having severe heartburn. He also told me since I was testing negative for all the intestinal 'bugs' to start taking Immodium AD after each diarrhea stool (for those of you testing positive for c. diff, please be aware this is NOT recommended if you have c. diff! That bacteria will not get out of your system if you stop the diarrhea!) Anyway, I was a bit nervous about starting any antibiotic and a t the same time trying to stop the diarrhea, but I watched myself VERY carefully. As many of you know, there are symptoms (odor as well as those feelings in the stomach) other than diarrhea when we have c. diff. To date, I have had less diarrhea (down to 3-5 times per day from 8-10 times just before starting the Immodium), but the consistency is still very liquid and the amount each time has not changed. The heartburn has also gone away. We have also done extensive lab work (much of it was what Gloria - ND who writes at this site - recommends and will use to offer me her assistance), all of which has returned within normal limits.

Guest · Postby **Guest** » Thu Feb 07, 2002 9:48 pm

It's been a long time since I updated this area, and a lot has happened in my life and with my health. I want to begin by saying that I continue to test negative for c. diff and I do not find symptoms of c. diff in my life right now. But, I also continue to have diarrhea! My doctor had given me a diagnosis of "Idiopathic Chronic Diarrhea of Travelers" and said it would resolve itself in approx. 15 months. Well, I wasn't happy with that - I tried to live with it for a while, but just didn't "feel" quite right about it. In January I got dizzy while at work and had to leave because it was so bad I didn't feel "safe". In the course of trying to diagnose the dizziness, I made a trip to my family doctor who had originally diagnosed the c. diff. He also wasn't happy with the diagnosis I had, nor with the fact that I continued to have problems, so he phoned my GI and told him he thought I needed a colonoscopy (more about that later). It turned out that the dizziness was a side effect to a new med he had me on - Pamine. Once I went off the Pamine, the dizziness gradually started going away. I lost 2 weeks of work because of it, but other good things did happen. The doctor didn't see anything unusual in the colonoscopy, but took specimens for the pathologist to examine. A week ago he phoned me that the pathologist diagnosed "Microscopic Colitis". I've been doing internet searches on that new diagnosis, and have discovered this is an umbrella term for two diagnoses - Lymphocytic Colitis is what I have, and simply means there are too many lymphocyte cells (indicating inflammation). This diagnosis is apparently as difficult to treat as c. diff, and routinely goes on for many years (different from c. diff in that we know that 80% of c. diff sufferers are cured in one treatment). There is a doctor in Dallas at Baylor who is an expert on Microscopic Colitis. He has studied the use of Pepto Bismol in this disease, and according to his studies this simple and inexpensive over-the-counter medicine seems to be able to CURE this disease! However, in finding a support group for this new diagnosis, I read that many people have not had success with this treatment. I'm sure it is similar to this support group in that those who do not have success are the ones logging on here to find support and help. However, I am now on Pepto Bismol and thinking positive that I WILL be cured with this treatment. My GI also suggested drinking aloe vera juice - he explained that the colon is epithelial tissue the same as the skin, and inflammation can be reduced on the skin using aloe vera and can also be reduced in the colon with it. So, I'm trying that, also. The other thing that has changed in my life, and that I am trying to use to improve my life outlook, is that I have become a first time Grandma (Nov 21 my new grandson weighed in at 8 lb 5 oz!) I am one of the unusual nurses who has a regular schedule (I always work the same days), so I volunteered to be his baby-sitter one day a week. His mom just returned to work 2 weeks ago. I find that no matter how bad things are in my life, my Wed's when I am baby sitting, I feel the best! I'm reminded of the healing effects of fun and laughter! I will continue to check this site on occasion, but will be spending more time at the site I have now found for my new diagnosis. I think this group is wonderful, and I want to thank everyone here who have given me such support as I struggle with this diarrhea.

Mary's case history

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