I am a father of a son who is 16. He was diagnosed when he was 6. Also has type 1 diabetes which makes it a little bit of a juggling act for diet.
First I would like to thank EVERYONE that has posted on this site. For the last week I may have read every article on here whether I felt it was pertinent or not to my own son’s issues. The honest reviews, your own trials and tribulations have led me to believe that somehow I can find the right answer!!!
A little background of my son’s own case. He was diagnosed 10 years ago when he was 6. The normal, diarrhea, bleeding and MANY bm’s. He was treated first with Prednisone, unfortunately that had to stop when he was diagnosed shortly after as a Type 1 diabetic….
He was put on Asacol that really kept his condition under control for quite some time (5 years). He then went into a mini flare that we believed was caused because he secretly stopped taking his pills. We got that under control by upping the Asacol (and making sure he took it!!).
Another flare about a year ago (again we feel from not taking medication) and got that under control quickly. Our Gastro Dr. felt he was getting at the age to move away from him (he is a pediatric gastro) and get an “adult” Dr. We found one we liked who felt the Asacol was not doing all it should and then put him on Lialda.
He was symptom free for about a year and then went into a flare. Changed medication to Uceris which caused some major issues (increased heart rate etc..) He became very lethargic and such so we knew something wasn’t right. Dr. said lets put him into hospital for some IV as he felt he may be dehydrated.
Well his hemoglobin count was down under 4!!!!! 8 days in the hospital, transfusions, IV steroids and we were able to go home. Symptoms were better but still in the flare.
He has been on Prednisone for last 2 months and Dr wants him to go on Remicade. I refuse to put him on any of these “horrible” medications because as a parent I couldn’t live with the fact of the side effects he could get.
Dr says it is either medication or surgery….Right now he has about 4 bm’s per day, 50-50 on formed bm’s, some bleeding but very little. His last scope (6 months ago) listed him as mild UC. Based on all of the information I have gathered I see no reason why surgery is even entertained!!!
Tomorrow we go to a different Dr who I hope can shed some light on other alternatives. Right now I believe (unless the new Dr comes up with something) we are going to try the probiotic route. All the reviews in that section of this site seem very positive. It sure is a better first option then what I have recently been told.
As we have gone through his Diabetes illness for about the same amount of time as UC we see constant “new” information and options for Diabetics. I believe the same will keep happening with UC. I want to delay, delay and delay going either the bad chemical route or surgery.
Thank you Adam for all you do on this site. By having access to all of these people and information it has led me to at least feel I can gain control of my son’s illness.
written by Frank