Son becoming recluse due to urgency

Hi. My son who is 15 and has had uc for three years is currently on 125 mg of azathroprine and 4 800 mg of asacol a day. He still has urges and passes a small amount of mushy stool about 10 times a day . He's scared to go out incase of accidents and has become a recluse. What would be next for him. Does this mean his current meds arnt working.

(I added a subject)

Post Edited By Moderator (iPoop) : 7/18/2017 10:04:21 AM (GMT-6)

It could mean a biologic drug is next, or possibly some addition of probiotics and anti-inflammatory foods, and maybe some oat-bran fiber could help.

the urges are often related to rectal inflammation. there are suppositories and such to treat that area.

good luck

That's the worst & I've been there. I agree with the others, work with your GI to get him to where he feels well enough to do the things he wants to be doing. He's got his whole life ahead of him, I have to think of a kid being a recluse because of UC, and missing out on all the things they could be doing. Being a teenager is a great time in ones life, you're old enough to have some freedom, but young enough that you do not yet have to participate in the responsibilities of being an adult... He should be out having fun, being creative, getting acquainted with taking on internships and finding his passion, making friends... iPoop is right, 3200mg could be increased. He could also add rectal meds. You could try a course of Uceris. I know people mention biologics, but you have to take into consideration that boys his age are at the highest risk for cancer from biologics + immune suppressants. It's still relatively low risk, but it is a consideration to take seriously. I had surgery and life has been fantastic since. No more drugs, no more doctors, no more worry about toilets. I have a jpouch. Not something to consider unless you're out of options, but just know that there is hope even in the worst UC cases.

At some point many, if not all of us have gone through the same thing. It is difficult for any age, but I can see how it might effect a teenager a little deeper. Dinner plans and family gatherings were always ‘up in the air’ as one never knows from one day to the next or sometimes hour to hour how you are going to feel. Making plans with friends is even harder at times. That type of thing can be difficult on anyone.

I can only think of two things:

1) Just as the others suggest, I would say point blank to his GI that 10x a day with urgency is certainly not keeping things under control and ask what other medications can be added/changed or tried. For sure he is probably embarrassed to explain in detail all his symptoms to both you and perhaps his GI. Maybe talk with his GI about his symptoms and options without him there for a bit as well. The longer one waits the worse things can get both mentally and health wise.

I did not become comfortable going out on a whim with friends and family again until I was down to about 2x per day and even then it was a slow cautious process. I still have my reservations at times. It's tough to deal with.

2) As family be ‘open’ to last second changes in plans. My family struggled with this, however my step family was awesome in this regard. If I could not go out, they would come over. They would eat whatever I could and cook what I could actually eat at family gatherings - regardless if I even ate anything or not. They actually showed interest in learning what food tolerance issues I had. They were happy to just sit around and watch TV with me when I felt ill. Happy to sit indoors and play cards versus go out for a walk. If I needed to leave when out, they were fine and would help me home and not ask questions. They would often say "if you need to go home or don't feel well just let us know", and that was that... My regular family would get angry and often say things like "how am I supposed to plan anything?", "I can’t cook for you because I don’t know what the heck you can eat", "if you don't tell us when you are able to come over for sure and what time, how can I go grocery shopping? Or when should I start cooking" and on and on. I distanced myself from them for 10 years because of this. - I mention this simply because I always felt more comfortable and relaxed around my step-family who were more than happy to work around my restrictions and limitations. This in turn made me feel better, and less anxious. And this in turn made it possible to do more of the things I enjoyed with them. They helped me through the period of time when I was searching for medications that would help with the same issue your son is having.