I haven't been around for awhile because I've been dealing with my son's new diagnosis. Last February, I noticed some tiny white spots on my son's stoma. His surgeon thought it was perhaps fungus, we tested for that, no. We were advised to wait and see and over the next few weeks these spots subtly grew and spread until his stoma looked hauntingly similar to all of his old colonoscopy images. Very soon after he developed cramps that didn't go away, loud stoma noises, watery/frequent output, no appetite, sunken eyes and wanted to sleep all the time. His GI had a test done where they feed a tube through stoma into the small intestine and pumped in contrast while x-ray machine is running. Anyway the diagnosis changed that day in March from UC to Crohn's. So we had to submit him to Remicade afterall.
So far so good, I think. He's due for his 4th infusion soon. The Remicade turned him around pretty much overnight, from symptoms mentioned above, to no cramping at all, good high energy level, good appetite, pancake batter output 3x daily, he has good normal skin color again, and his stoma is quiet for the most part now. Although it still has nodules on much of it and is still constricted, I can't get my skinny pinky into it, so I wonder about how controlled the Crohn's is right now, but I'm taking one day at a time. He's happy, attending school and playing with his friends just like he should. So thumbs up!!!
This site and the people on it are so wonderful. I know I've said it before, but thank you all so much for being here!