My adult son (40) was diagnosed 5 years ago. He is educated but has not worked since diagnosis! I'm desperate to find answers from people who have dealt with this wicked disease! He won't give an ROI so I can talk with his GI doc and am not sure if I should anyway. I married into a family of doctors but their advice ranges from 'kick him out - he's got to figure it out on his own' to 'never get involved with an adults child care' - neither of which I have done or see myself doing. We found an insurance policy about 3.5 years ago but I worry, especially in the times we live in, that he'll lose that coverage. His dad and I are both on Medicare now but how do we plan financially for his future? He won't go to a counselor - I think he feels guilty about how much we have to spend now to feed/house him and he doesn't think he needs to see a counselor anyway. I go to sleep worried, and wake up worried. He still has a student debt unpaid and I haven't even dared to look at what might happen with that! Add to that, his dad has a rare form of lymphoma and I am utterly overwhelmed! ANY advice or even questions I need to ask would be greatly appreciated!
Hi Mom. I'm very sorry for how much your family is suffering. May I ask what is keeping your son from being able to be active? UC is horrible but there are treatments available to keep flare ups in remission & slow the damage they cause. During a flare it may be hard to keep away from a restroom & staying at home during one is common most of us get reprieve in between & live relatively normal lives. Anxiety about accidents can become overwhelming but it's important to keep as regular of a schedule as you can so that you keep a healthy mind & body. His primary Dr should be able to speak to him about this & provide assistance & possibly medication for severe depression. If his meds aren't working for his UC his gastro specialist should have options for him as well.
My prayers for you & yours. May your son & husband find the help that they need so they may enjoy & participate in all the beauty & joy in the world. May you find some peace & happiness as well
*removed link as per site rules*
My prayers for you & yours. May your son & husband find the help that they need so they may enjoy & participate in all the beauty & joy in the world. May you find some peace & happiness as well
*removed link as per site rules*
Post Edited By Moderator (quincy) : 4/3/2026 12:57:48 PM (GMT-4)
what medications is he on for the UC?
MODERATOR-UC FORUM
female - diagnosed with moderately severe proctitis/colitis/mild diverticulitis
6mp - 50 miligrams
Repatha - 140 miligrams
Calcium with Vitamin D
Zinc
folic acid
"Fly under the radar" - Dad -
MODERATOR-UC FORUM
female - diagnosed with moderately severe proctitis/colitis/mild diverticulitis
6mp - 50 miligrams
Repatha - 140 miligrams
Calcium with Vitamin D
Zinc
folic acid
"Fly under the radar" - Dad -
Surgery??
Therapy??
Therapy??
Managing a chronic disease is as much a mental battle as it is a physical one, and the guilt your son feels is likely a huge barrier. Since he’s hesitant about counseling, maybe starting with small, low-pressure conversations about the future could help ease him into the idea. It’s a lot for any parent to manage alone, and it’s okay to prioritize your own peace of mind too so you don’t burn out while trying to be his advocate.