As you know from my sig, I've had UC a long time.
From about 6th grade on, my son missed a lot of school with vague "stomachache" complaints.
He had had kidney stones from age 4 - calcium ones, not UC-related. The calyxes, sp? - the collection system to one of his kidneys was overly large and deposited more fluid into the kidney than could be processed, so stones would form. He'd had a lithotripsy in second grade and has, with meds, been fine since then - but has been oversensitive to abdominal pain because of all that. So with his complaints, I wondered some about new stones. I wondered about "school avoidance" and researched that. I made an appt with a psychologist I know - and my kid wouldn't get out of the car to go in, told me I was the one with the problem!
As we got to about his 8th grade year, he started in with other odd complaints: blurry vision, a hurting ankle, sore throat.... in retrospect I think some of it might have been extra-intestinal UC stuff - but some of it might have been that he just knew he needed to be seen by a doctor. We saw a lot of the pediatric docs those years!
He complained so much of stomach complaints that one of the docs sent us for "stomach" xrays which seemed to show constipation.
What was going on in the bathroom? I don't know; he was a boy at the age where he didn't volunteer info and I didn't push.
In spring of his 8th grade year he went to a "Y" camp for the weekend with a friend - something he had SO enjoyed in the past - and he came home listless, said he had not enjoyed himself because he had to go to the bathroom all the time. The alarm started to sound in my head.
That was a vacation week (April vacation week) from school, so we spent time together and went on an outing which involved lunch. After we ate he needed to RUN to the bathroom and it was at that moment I KNEW.
I asked about blood and he said, well, yeah.
Our pediatrician got him in with a pedi. GI within a week or so. He was sick enough he was home from school all the time... she scoped him the first week of May - pancolitis. Put him on Pred and Asacol.
And wrote whatever letters she needed to write to have him removed from school officially, and we requested a 504 Plan..... and he finished the year with tutors. He left school April 13 for vacation that year and never went back.
He responded well to the pred, though he gained weight and became hyper. But by mid-to-late summer he was off it.
The doc also recommended probiotics but I hadn't looked into then. They gave us samples of Digestive Advtange and it seemed to make my tum hurt so we discontinued it. (Now I'm the Probiotic Poster Girl - lol)
He has done well on Asacol ever since! He takes 8 a day. This past year he finally (at age 15) had something of a growth spurt and his voice changed.
The silver lining with him is that I've lived with it so long and I tend to research things, so I've been a pretty good coach. I've worried that he's had to rely on me in all those complicated ways right at the age he might have been starting to separate... but I think we're doing fine in that regard now.(LOL)
His doc sees him 3 times a year and has bloodwork done then. She says when he's been in remission for 2 years she may put him on Lialda. On the one hand, that would be great, and on the other, "if it ain't broke...."
His freshman year of high school I had a 504 Plan put in place just in case. He was given a laminated lav pass and his Guidance Counselor spoke personally to each of his teachers.
Every teacher but one was understanding. She said to him, "If you can, I'd like you to HOLD IT until class is done!" First class of the day, too. He missed so much - afraid to go in - that he failed. I should have intervened early on, but I didn't want to baby him, wanted him to learn to cope.
Since that year I haven't done the 504 - it's a small school and I figure it we needed to instate it we could do so quickly.
I hope his isn't too long - that's the story. How old were your kids when they were diagnosed? And how do you deal?
Diagnosed UP 1983, Azulphidine
Diagnosed UC 1986 Prednisone almost 2 years
Asacol - 16 pills/day
Metamucil - 2 doses/day
Cortenemas until recently, Rowasa as of 9/8
VSL#3, Ultimate Flora Critical Care
Vitamins, Calcium and D,Flax Seed Oil
Bee propolis as of 9/2, melatonin as of 9/14