My Son Has Ulcerative Colitis.
My son was diagnosed at 10 years old in the 4th grade. At his worse, he was taking 26 pills a day, plus a probiotic shake and would end his nights with an enema. He was on 40 mg of Prednisone for a year before surgery. In May of 2011 he had a total colectomy and J-pouch created. In July of 2011 he was “reconnected”. He’s going to be 13 in November and is now beginning 7th grade.
The Past and Current Story:
I have a personal blog that I post on pretty regularly, most of which is about my son. I wanted to share what I wrote recently. On my blog I refer to my son as “demon” lol.. so here it is:
“August 25, 2010
Update on the 1st day.
“Today….was….AWESOME!!!” the Demon shouted as he climbed into the Jeep today.
He said he had a great day. Didn’t go to the bathroom once. All of his friends are back again. He’s sitting in the front row, he doesn’t like that.. BUT Momma does. Hopefully, that will keep him in check.
He said “This year, I am going to be better – more organized!” I sure hope so. Last year was rough.
Even though he didn’t go at all during the day, he did manage to go to the bathroom 4 times this evening. That brings the total to 12. Not going in the right direction!!! I call the doctor Friday to check in and give him the update on how the demon is doing.
I’m optimistic that, after the first week of school jitters go away, he will improve.
He has to.
August 25, 2011
This time last year.
Above is the blog entry I made exactly 1 year ago. Today, I was going to post something very similar as yesterday was the 1st day of school! So i thought.. let’s take a look back in time… just like last year, he had a great day. He didn’t go to the bathroom at all during school which is surprising since at home he seems to go almost immediately following eating a meal. He’s been practicing “holding it” which is great! (tmi?)
From the above blog post there is one glaring difference from what i was going to post today. While last year he was in the beginning stages of an UC flare.. this year he’s UC FREE! I can’t begin to tell you how great it feels to see him so happy. He’s not rushing to the bathroom cramping. He’s not weak from the lack of sleep or any other reason associated with an UC flare. I don’t know the exact words to describe the feeling I have because I don’t think “relief” accurately describes what I’m feeling. I was so worried before surgery – not knowing if I was making the right decision. I mean, he IS only 12! Especially after the first surgery and all the complications, I was regretting the decision. When I saw him in such pain in the hospital..when he was saying that he regretted the decision it was hard to not feel responsible for all of his pain. I don’t know many things in life that can possibly be harder than seeing y our child sick and suffering and you have no way to help.
But today, August 25, 2011 we have finally reached the other side of Ulcerative Colitis. No more pain, no more wound, no more meds. He is happy and healthy.
And, I am thankful.”
I wanted to share my story with any other mom out there of a child suffering through UC. I wanted to share my son’s story with any person out there fearful of surgical treatment. There is hope! If you’ve exhausted all efforts and surgery is what you’re (or your child is) facing know that there is a light at the end of the tunnel. :)
My son currently takes:
Imodium AD 2am/3pm
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