Mother of son with UC

My heart breaks for anyone who gets this disease at a young age. Being 14 is hard enough without this on top of it.

If he was my child, I would encourage him to play soccer. Everyone is different with this disease but I have found any form of exercise to be beneficial. Yes, he might have an accident but it is more likely that he will not. There was a thread recently on how many people find that they won't have a bowel movement when they are out in social situations and not focusing on their UC. I would just make sure he is careful about not eating a lot before a practice or game. There are also certain anti-diarrheal medicines that some GIs will prescribe depending on the severity of the disease.

Have you considered anti-anxiety meds? I have heard a lot of people have had success controlling symptoms with them. The colon is like a second brain. In many people, it reacts to everything the head does. It is why this disease is often triggered by stress.

Regarding food before bed - if he is complaining of "rumbling" it is probably stomach acid. I find this gets worse with nothing in my stomach. But if you eat before bed then you are more likely to have a bowel movement. I would try to time that one better. You could also ask his GI about an acid reducer. Did the Aloe Gel help? I find that reduces the acid a bit. You could also try giving him his VSL before bed. I have no idea why but probiotics seem to calm my rumbling.

What a bummer it is when people have such a hard time treating this illness. I had a very resistant case. it's weird because you would think there would be more commonalities with this illness but there aren't - it's very unpredictable. Some people have it and it is almost like having a cold, they get a flare and get better, and it really doesn't impact their lives. In my case, I would never get a break from the flare up. 4-6x a day isn't bad but 30 minutes on the toilet could mean it's more like 10x+, if he's sitting waiting to have multiple BMs.

I can tell you that I no longer believe in any of this natural/supplement hoopla. I was the biggest believer when I was diagnosed, took tons of probiotics, supplements, spent loads of money, did SCD diet, nothing helped.

Have you had stool tests? Sometimes people have a GI bug along with UC and treating the UC won't treat the bug...

I went on for years trying to treat this. Finally I saw a top IBD specialist who was 100% confident she could get my UC into remission. After almost 2 years of fighting and trying everything available, she said my UC was not responding to anything available and that there was no chance something would be available before my colon would get to the point it would require emergency surgery. That's when we decided surgery was the only option. I haven't finished the surgeries yet but I can tell you, after step 1, I could play soccer, I could stay out all day without worrying about the toilet, I can even sleep through the night without getting up. I hadn't slept through the night in a long time. It's definitely not ideal and it changes your internal functioning forever but what you need to remember is that in some cases, like mine, my internal functioning was never going back to normal. You feel like you're losing something, in my case, I was losing something that was broken, so I have to accept that I will never be 100% how I was before UC but I will be much better than I was while I was suffering with UC.

Being a father of a 9 year old diagnosed a year and a half ago, I strongly believe that we should support and encourage our kids in everything they want to do. This disease is stupid (for the lack of a better word) and anything that makes them happy should be allowed (with-in reason )
.

I tried everything else but I could have kept fighting. My GI was offering me other options, she prefaced it by saying none were really safe for me. I had septic shock from all the immune suppression and I came very close to death. When I woke up and needed physical therapy to get back to normal, that was probably the breaking point.

I have to say, the most virulent cases I see on here tend to be young people who get very sick in a very short time and respond to nothing. It's frustrating that there aren't more options but that's how it is with IBD. Either you respond well to one of the few things or you don't... we had a person ehre recently, kamayka, who had some luck with fecal transplant for her daughter. The problem is that it's not FDA approved for IBD, only for c diff, so you probably can't get a doctor to administer it. People have done it at home with enemas. My GI's take on this is that if you can't retain an enema, you're not going to be able to retain that. I know I wouldn't be able to retain anything when I was flaring. Another thing I can tell you is that I have seen a lot of people with children end up having surgery, and guess what? None of them post here anymore because their child is healthy and out living life... Not saying this is what's right for your family but just letting you know, it is an option if it comes to that. I really hope it doesn't. Though a life of 10k infusions monthly is stressful too, I am happy to be done with all that. I am still fighting my 15k entyvio bills and have been for the past 6 months. I can't wait until I can go to the doctor RARELY, like normal, healthy people. I was going literally every 2 weeks for a while. It was significantly impacting my life. The month long hospital stay wasn't helping either. All that lost time at work. uhhhhh. terrible illness.

Thank you so much for all of the helpful and informative information. I will look into all of the items and methods that you mentioned. I was skeptical about the SCD diet. It is difficult to start and follow, but I am trying. I will look into home fecal transplant as well. I really appreciate you taking the time. Some of the information you shared are new to me and I have hope that something will help.

Much thanks

Also hang on because there is a new treatment in the works!!

Being on steroids was the worst for me. It's bad enough to be ill and feel terrible, constantly be in pain and running to the toilet... but to look horrible from taking steroids, gain weight, acne, not look like yourself, it makes things that much worse. Since i had surgery, I feel so much better about the way I look. I didn't think I'd ever get my confidence back, and with UC, I don't know if I would have. Stinks that I spent all that time looking like hell on steroids. Have you ever asked him how he would feel about surgery? I got to the point where I felt like anything was better than steroids. The problem with new treatments is that they will not be approved for use in children right away. Yes, there are always new things on the horizon but that could be 3 years away. I don't think anything is going to be available too soon. Entyvio is the new thing we got and unfortunately it didn't work for me. So even if there is something new and it's approved for children, i would imagine it will still have odds of about 50% chance of working, much lower in the nonresponsive group. It just stinks to give up your teen years to this illness. Reach out to "mustlovedogs" and "colliecat" if you want to find parents of teens who had unresponsive UC.

www.healingwell.com/community/profile.aspx?f=33&m=3442422&p=82278
www.healingwell.com/community/profile.aspx?f=38&m=1437527&p=75159

I heard about Ozanimod but i am no expert! Post a new thread ask about new drugs.

Is your kid on other meds while steroids? You have to stay on something.

Good luck