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Nervous mom of 15 year old boy


Thu, June 08, 2017 5:27 PM

My son has had bloody diarrhea between once a day to twice a day since February.   He has no other symptoms.  He feels fine.  We were referred to a pedi GI because my husband has ulcerative colitis.  My son had a colonoscopy in March, and the doctor did a biopsy.  He was diagnosed with proctitis.   We thought it was clearing up after taking Lialda for a month, but it returned.  More stool tests, and the doctor said he did think it was UC because of the calprotectin level.  So, we were prescribed Uceris to take along with the Lialda.   It made no difference after ten days.  The doctor then prescribed Prednisone 30mg twice a day for five days.   We are on day 2 with no change.  I'm so worried for him.  I just don't want it to get worse.  He has no urgency.  He goes twice a day at most, but I'm just so anxious and on the verge of tears all the time.  The dr says right now we are just trying to find the right treatment for him.  I feel helpless.

FPO momofcandb
Joined Jun 2, 2017

Sat, July 08, 2017 3:12 PM

Reply posted for Blinks.

I feel terrible for both of you! Been there. I have UC, and my daughter, 28, was diagnosed at age 8. I've avoided eating when I have a flare up in order to avoid running to the bathroom. My daughter has had flare ups in several countries around the world on her own while studying abroad and traveling. At 12, she went to a VERY rustic sleep away camp many states away during a flare up. That was one of the hardest things this mom ever had to do. I credit her pediatric gastro doc, who gently and firmly got me to put her on that plane. He always said this child is not going to think there's anything she can't do because of this disease. I was terrified, in tears watching that plane take off. He was in contact with the camp nurse every other day. Believe me, this was not a cushy place where you'd want to spend ANY time in the bathroom even if you were healthy! I'm telling you all this because as awful and scary as this is, it's critical that you have a heart to heart with your kids' doctors and work as a team to help these boys navigate this disease. The doc must also support you as the primary caregiver. Together you will work to be sure your child's spirit is not broken by the disease. Team work is critical. Also, is it possible to find other families in your area dealing with IBD in teens? Maybe it could help to talk to those parents. My daughter never would have anything to do with talking to other kids about it. She is fiercely independent and private. I get it, I really do. If possible, help your teens internalize the concept that they are them and have this disease, and the disease is not them. Does that make sense? You do your best, and that's all you can do. It is really hard to have a kid with a chronic illness. You walk around sleeping with one eye open, always waiting for the other shoe to drop. It takes years for kids to develop the skills they need to cope. Be patient. One step at a time. It's good and helpful for them to see you coping and to learn from how you interact with helthcare professionals that take care of them. Model for them. Talk to each other or me about the worry. I worry all the time--when's her next flare up, will she someday need to have her colon removed, what about having kids when she's ready, will her high risk of cancer materialize. We take it a day at a time, use humor as much as possible, and I hold my breath for every colonoscopy and flare up. Three years ago she ended up in the ER in the city where she lives and works. That led to a week long hospitalization. I went immediately. She had to switch from Asacol to Humira. She is handling it well, but every time I see the constant TV ads for Humira I want to cry. It's a lifestyle. As hard as it seems and is, you and your teens will adjust. I wish I had more concrete help and more comforting words. 

FPO ColitisMom
Joined Jul 8, 2017

Sun, June 18, 2017 9:03 PM

Reply posted for momofcandb.

Hi,
My son  was diagnosed with UC this past Sept. he was 17 at the time. He has been on Lialda since. First it worked and the past 6 months it really hasn't... So he had taken steroids which helped a bit but he can't stay on them forever.... He has just started Humira (has taken his 2nd round) and we are praying it will help him, they say it takes 6-8 weeks to kick in. He starts college this coming September and will be away from us. He is VERY independent and private. He doesn't like to talk about what goes on.. I am SO STRESSED OUT about him leaving and still not feeling well. He has had a flare up the past week and has had 3 uncontrollable accidents (this is what is "killing" me I feel so bad for him!). I cry for him daily (he doesn't know).. I wish I could help him more. He doesn't even want to leave the house as he is scared that it may happen again! And he barely is eating as I think he is afraid he will have to run to the bathroom.. He runs to the bathroom anyway without eating sad He graduates HS this coming Saturday... I PRAY that he is OK for it... 
I hope your son is feeling better!!!

FPO Blinks
Joined Jun 18, 2017

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