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new to the forum but son diagnosed with UC @12

Sun, May 28, 2017 11:03 AM

HI. I have never been on this forum. My son now 15 was diagnosed with UC with PSC and overlap of AIH at 12. He missed so much school this past year (still able to keep all A's) that in the fall of this year he will be homeschooled. He has been on several different meds pred & remicade included. They help for a while, but then he'll relapse in less than a year. Right now he's in a flare and goes 15-20 times a day. It's hard to leave the house. His doctors have said not to leave removing his colon within the next few years off the table and him to have a bag. I know a good bit of people who have UC also have PSC. So far, thank God it hasn't yet affected him greatly. I just am looking for other caregivers to be able to talk about all that is going on with my son. You try to explain what all this stuff they have is to people and you just get a blank stare. And of course the invisible disease. I wish people would gasp at these horrific diseases when we tell them like they do when people tell them about cancer. I hope that I can find other caregivers to get help and help to give, especially mom's with kids that have IBD.
Thank you,
Delise

nixd02
Joined May 28, 2017

Wed, June 14, 2017 2:06 PM

Reply posted for nixd02.

Hi! I am so sorry you are going through this with your son. Is the ostomy the only way to go for him, or is it possible for him to have a jpouch surgery? As a UC patient that might be an option for him?

My husband had the sugery, maybe his story will be encouraging? He has indeterminate UC/Crohns, he was diagnosed at 18 and suffered for many years with many complications (cdiff, systemic fungal infections, clotting disorder, extremely rare skin condition that causes skin to ulcerate, mouth ulcers, fistulas etc.). Finally in 2016 a colonoscopy revealed pre-cancerous changes and his whole colon had to come out. He was apprehensive, but it was the BEST thing that ever happened to him, not just because it almost certainly saved his life. The morning he woke up from the colectomy surgery, the pain he had suffered from more or less constantly for 15 years was gone. The second surgery went really well and he is in the best shape he's ever been in, no pain, no ostomy, and has much more control over his bowels than he ever did before. He used to look years older than his age and always haunted by suffering, now he looks like himself again, he looks great. If we have any regrets, it's not getting the surgery done sooner.

I hope your son is a candidate for the surgery and has the same outcome my husband had. It's amazing to see how transformed he is, how happy, I wish that relief for all UC sufferers.

Wishing you the best of luck,

Ruby

RubyEllen
Joined Jun 14, 2017

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