I was diagnosed with Primary Sclerosing Cholangitis 10 years ago (when I was 17), though I think I probably have had it for 12 years, maybe longer. So I want to go back to when I was born and later mention some interesting family history I recently found out. My parents tell me that I came into this world as a big, strong, healthy 10 pound baby. But just 2 days later I was back in the hospital with a pretty high jaundice level. I had to lie under some UV lights for a couple of days and then was sent home. I continued to be a happy guy, growing quickly, but was known by my family that first year as the “puke-up kid” because I spat up something from every feeding. I continued to grow quickly, though about 2-3 times during the year, my mother noticed I would get a 2-3 week bout of diarrhea that would go away about the time she was getting serious about taking me to my pediatrician.
Two weeks after my 1st Hepatitis B vaccination at age 11, I told my mom I was having bloody diarrhea. She asked how long it had been going on, and I told her a few days. She took me to the pediatrician who drew blood and took a stool culture. They tested me for parasites, and a number of other things, which came up mostly negative, except for having high liver enzyme levels and anemia. They sent me to a Pediatric Gastroenterologist who did an ultrasound and then a colonoscopy and endoscopy. After this round of tests, I was diagnosed with Ulcerative Colitis (UC). Back then my mom asked what was the worst case scenario for the course of this disease. (He said some people when they are in their 50’s or 60’s discover they also have Primary Sclerosing Cholangitis which they would live with for a long time, taking some liver pills, but may eventually have to have a liver transplant.) He said at that time, a transplant was the only cure for the disease. In the meantime, I was put on Sulfasalazine and iron for the UC. Though I’d experienced some weight loss, I began to feel a little better. But my liver enzyme levels continued to rise, and the Dr. wanted me to get a liver biopsy.
My parents wanted to get a second opinion and ended up seeking the advice of a naturopath/biochemist who came with high recommendations. He did some extensive blood, hair, and other tests and found out I had all kinds of allergies to foods and several other things. He was sure he could help me. I did not test positive for Celiac Disease but showed allergies to gluten, dairy, eggs, & citrus, to name a few. All were Ig allergies that would go away if taken out of the diet, until reactions ceased. My parents asked him if they went with his expensive vitamin and strict diet plan what kind of results we would see. He told us that in a month my blood liver labs would be highly improved. So my parents asked the Pediatric Gastroenterologist if we could delay the liver biopsy while we pursued this course for a month and he said the labs and symptoms would prove if things were working. So we completely changed my diet, which was very hard, but in a month, I was feeling better and my liver enzyme levels had drastically improved. The Pediatric Gastroenterologist agreed that we should continue with what we were doing because it was working, though he did not understand how our program would affect my labs so much. We followed this plan for 5 years, eventually taking out all prescriptions while I grew lean and tall.
But, when I was 17, my liver enzyme levels began to rise, even though my mother made sure I followed the diet and supplement program strictly. My naturopath now was the one who said I needed to go back to my Pediatric Gastroenterologist for further testing. The GI performed a colonoscopy, endoscopy and liver biopsy. My liver biopsy indicated that I needed to have an ERCP to see if I had Primary Sclerosing Cholangitis (PSC). He referred me to an adult board certified gastroenterologist who gave me a positive diagnosis of PSC. My parents were sad to find out I had developed the “worst case scenario” at such a young age. My Dr. prescribed Ursodiol but my parents couldn’t afford it. We continued to communicate with our Naturopath, and also with the Medical School to have some baseline contacts and appointments with a gastroenterologist there in case I were to progress quickly towards a liver transplant.
By the age of 20, I had been attending college for 2 1/2 years and cooking my diet on my own, when my Ulcerative Colitis flared for a long time and I became very weak and thin. My parents took me to a doctor while we were on vacation, who immediately put me in the hospital with severe anemia; I was in need of blood transfusions. A few days later when I was released, I was put on Prednisone and some strong iron pills. We knew of the long-term effects of this drug and had been so glad that I had never had to be on it before. The new gastroenterologist said I would be weaned off it soon. Instead, after one year, my body seemed to be dependent on Prednisone, and I was put on 6MP, a drug that was supposed to help me get off Prednisone. But it seemed to make me sicker and more tired. By age 22, I was back in the hospital with lots of pain for the first time, elevated liver enzyme levels, much weight loss, and anemia (even though I was taking iron). I was 6’6” with big bones but not quite 200 lbs. My UC was re-diagnosed as a pretty severe case of Crohn’s Disease and the Dr. said my drug program was not working. He recommended that I be put on 3 “big gun” drugs (Remicade-TNF) that had numerous side affects, but the scariest was that they would be harmful to my already struggling liver. They would also be more expensive than any drugs that had yet been mentioned.
[Side note: Six months before this time, however, my mother had heard about an almost “too good to be true” trial drug program for children with Primary Sclerosing Cholangitis. A mother, whose daughter’s liver problems had completely subsided once she joined the trial, strongly encouraged Mom to speak with Dr. Yinka Davies. She spoke with Dr. Davies who said it would fix Caleb’s liver problems, even his UC, without any bad side effects. Mom had asked our Gastroenterologist if he would look into the trial. He did not think I would benefit from it at all.]
When I was so sick with Crohn’s Disease and we were asked to make a decision about whether or not to start on these tough drugs, my mother asked the Dr again if he would at least allow us to try the drug trial program with Dr. Davies for a short while to see if there was anything to what Dr. Davies and her patient had been telling us. Some might say it was because he felt for us at this difficult crossroads point, but I would say things were brought to this crossroads point at exactly this time because of lots of prayers on my behalf.
The Gastroenterologist had a complete change of heart and worked with Dr. Davies to allow me to become part of this drug program, even though he felt certain it wouldn’t work. This meant that he authorized monthly CBC, Liver enzyme and other blood labs, prescriptions for Vancocin as well as a serum draw that I would be responsible to send to Dr Davies for research once a month for a year. Prior to Vancocin, I was on at least 20 mgs of Prednisone, 3/50mg mercap, 2/500mgUrso, and 8/400mg Asacol per day not to mention about 50-supplement pills/day. This was all very costly and I was exhausted, bleeding, in pain, having diarrhea hourly during the day and a few times at night, losing weight and sleeping 18 out of 24 hours/day, but waking up feeling just as exhausted as when I went to sleep. Needless to say, I had to drop out of college and could barely hold down my 2 hour a weekday job. You might think that since I was a college student, I was probably a partier and wasn’t taking care of myself. My roommates and everyone would tell you I lived a very clean and healthy life and still was having all these problems. We asked our local Gastroenterologist what would prove to him that Vancocin was working. He said it would not actually be an improvement of the blood labs as much as an improvement in the quality of my life that would convince him.
This was June. (I had applied for a great job position at my college that March and would know by the end of July if I got the job. But I knew in my heart, I would have to turn down the 8 hour a day job because I could not manage that many hours of work a day.) At the beginning of July, I started on Vancocin and immediately went off all prescriptions except Prednisone. (This was very scary for me and my family as they had seen how little changes in my pills had set me back before.) But we took Dr. Davies advice and did just what she had asked us to do, and just as she said, my health improved every day, incredibly.
By July 24, I was offered the job and by faith, I accepted it and was able to make it through an 8 hour a day shift. In about a month and a half, I had been weaned off the Prednisone that I had been so dependent on, which seemed to be the greatest factor towards improving my sleeping problems. In my first year on Vancocin I gained a solid 70 lbs (yet not overweight).
I can now enjoy a great social life that I had missed out on for years, eating a healthy diet with only one restriction. My favorite past time is weight lifting, and I use the bathroom a normal number of times a day and also sleep normally now. My quality of life is excellent! I am only restricting myself from gluten, because I can tell that when I eat it, the skin under my eyes gets puffy. My liver labs are much improved, and I only take a couple daily vitamins. My Crohn’s Disease is in remission, and I am looking forward to seeing how my Colonoscopy, Endoscopy and ERCP will be next time.