I am mom to a 13 year old son who was diagnosed last June with Ulcerative Colitis. I thought I would post about our experience because it helped us so much to read about others with this disease and what they did to cope with it.
My son came to me in the Fall of 2007 with a little blood on the toilet tissue and was a little worried. I said it was probably nothing, but that we'd go to the doctor anyway, just to be sure. The doctor said probably just a fissure...
In May of 2008, I saw a tiny bit of blood on his underwear. I asked to see his next BM, and was horrified to find that he had big drops of blood on top. We were sent to a Peds GI doc who put my son on Miralax for a month. He really thought it was a fissure, as well, since the bloodwork showed no anemia, Sed rate normal, no growth delays, and my son feeling pretty well. The only symptoms were a little diarrhea and some blood coated stools.
After a month and no improvement, we went for the Colonoscopy. The result was chronic inflammation continuous from rectum up through sigmoid colon and not sure how far up the left side. I'll never forget the doctor coming out and saying, "This is not good news." The doctor was fairly certain it was UC versus Crohn's due to the contiguous pattern, as well as the fact that he was able to get the scope into the terminal ileum which looked normal (and was biopsied and found to be without any abnormality).
After the pathology report confirmed the diagnosis, my son had an upper GI with small bowel follow through, which came back normal.
He was started on Asacol. After 2 1/2 months and nothing improving, the doctor added Flagyl for a couple of weeks. I was a little concerned that some of the Asacol pills were coming out whole in his BMs. The doc said this was normal and not to worry, but I was sure that since the pills were rock hard and unbroken, that the Asacol was not doing it's job! I asked for Colazal because that is supposed to be dispursed lower in the colon (and didn't require a certain pH for the shell to be broken). I don't think our GI doc worked too much with that medication, but he agreed and wrote the prescription.
We got the generic form of Colazal-750 mg three times a day. He was on this for 2 1/2 months with no change. No worse, no better. I then added VSL#3 1 packet of unflavored powder in a container of yogurt a day. Also started him on a metamucil wafer a day.
After another couple of months of no improvement, I switched him to the brand name Colazal. I think at that point, one of the peds GI docs was ready to start the immunosuppressants. Since my son is feeling fine, I talked with him about risk versus reward, and I asked about rectal meds and pushing up the dose of Colazal. He agreed to up the colazal to 5 a day. We started on Cortifoam every other day. This led to a dramatic improvement. After having had blood with every BM for 8 months straight, he now hasn't had blood for about a month and a half.
Today we had an appointment with the GI doctor. This is the first time since diagnosis that we were able to report "No blood and going once a day." It has been a frustrating process, and I know that things can change, but am thankful to find that he has had some response at last. I was weaning down to every third or fourth day on the Cortifoam, but the GI doc doesn't want to rock the boat for now and go any lower on the Cortifoam. I also asked for a prescription for VSL#3 DS so that it is at least somewhat covered by insurance. I don't think our GI docs are pro-probiotic, but he agreed to write the rx anyway. So, for now, this is what my son is on:
Colazal 750 mg 2 in am, 2 in afternoon, 1 at pm
Cortifoam once every second to third day
VSL#3 1 packet per day
Metamucil wafer, one per day
As far as diet goes, I kept a log for the whole summer and didn't find anything that seemed to hurt or help the situation. He possibly has a bit of a reaction to too much chocolate (more blood in stools afterwards). It seems like the couple times he's had a cold, he's been a little worse.
We've really been pretty lucky with the way he's felt with all of this, and I know part of it is that the UC is confined, at least for now, in the distal portion of his colon. It's the uncertainty of this disease that is hard to live with...You just never know, do you?
Thank you all for all of your postings and for sharing your knowledge---it has helped us so much to sort through all of the treatment options to try to figure out what might work...