My teenage son was diagnosed with UC when he was 10 years old. We live in the United States in the state of Michigan. He enjoys video games, golf and tennis, and has played on his high school’s varsity tennis since his freshman year.
The Symptoms my son faces:
My son experiences symptoms such as diarrhea, abdominal pain, disrupted sleep, fatigue, slowed growth, osteopenia and sometimes anemia as part of his “normal” life. Acne is another problem he’s been having over the last year. Antibiotics made his UC worse. Accutane is out. Oracea and some topicals seem to be helping (although very expensive!).
How ulcerative colitis changed our/his life:
Our family’s diet is much healthier since UC. How can I get him to understand that good nutrition is important? He loves it that he can “cheat” and get away with an occasional pizza or fast food. I fear that when he is in total control of his diet, his UC will flare. My son never complains about doctor’s visits or blood tests. He converses calmly with the doctor and nurses about subjects that I know would normally make a person cringe. I appreciate that they have ‘grown’ with him and are treating him like the young man he is and not a child. Sometime before he is 21 I know he will have to find another doctor for his adult journey with UC. He will love it and hate it at the same time. Sadly I see his self-esteem has taken a huge hit. Family has been supportive – though he strongly prefers not to talk about his UC. I now find myself thinking about how he will manage his life in college. . .I know he is tough, but at the same time in some ways he has been ‘babied’ because of his UC. What have others found that parents can do to help their teenagers make this transition? What advice do you have for UC’ers going to college, explaining to teachers, getting a job and talking to employers? His concerns: He’s asked me at least a couple times, “Is UC going to kill me?” He’s also said that he just assumed that at some point he’d get cancer because of UC, and that he would die before he was 40. I’ve tried to assure him that it probably won’t be that way, and that he very likely will have a mostly normal life.
Where I’d like to be in 1 year:
I’d love to see my son’s confidence in himself and the future restored. I’d love to see him excited about making plans for his future. As his parents we believe God has a good plan in all this, and we hope that our son can use it all positively in his life’s testimony.
Medications my son has been involved with:
In his initial rough period, he started with prednisone and Pentasa. His doctor was not satisfied with his progress and recommended 6-MP. While he was on 6-MP, his liver (I believe, anyway something) started showing signs of distress so his doctor pulled him off of it. Doctor wanted to try Remicade next, but we opted with trying what his doctor called an “elimination diet”. I think the diet along with vitamins is where we had our best results. He continued with doctor check-up visits and blood tests to help us track how he is doing. For five years he took no prescription medications. About a year ago his symptoms started slowly increasing, and a few months ago he started taking Colazol. His symptoms have not changed much, but his blood test results look better. As I write this, he is taking part in a clinical study (clinicalstudy.gov) through his pediatric gastroenterologist’s practice called “Gut Microbial Transplantation” also sometimes called “Fecal Bacteriotherapy” and “Human Probiotic Infusions”.
written by CJ
submitted in the Colitis Venting Area