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I'm a newbie

Warning: This will be long!! I have joined this forum to try and help my son. His name is Austin. Austin is 14 and been sick since he was about 5-6. He started out being diagnosed with severe UC he has been treated with everything from Azithiropine,Cipro, Flagyl, Colazol, Entocort, Methotrexate, Remicade and Cortifoam and this is not all I just can't remember all of them. Everything Failed! In March of 2011 his entire colon was removed and a J-Pouch created In June 2011 they completed his take down surgery. By the following April of 2012 he was sick again. And rediagnosed with moderate to severe Crohn's. We started Cimzia and Methotrexate , In Oct. 2012 he was still just as sick> It never worked. He had lost to 89 lbs. Started Predisone at 40 mg. again and feels miserable.

The stomach pain and headaches are the worse. Doesn't sleep well, fatigued, dizzy, and no energy whatsoever, he is under the hospital homebound program from school, so he doesn't get regular interaction with his friends so he has a small amount of depression. No amount of education to the teachers makes them understand how sick he is. They see his moon face and can't understand how bad he feels. They do not understand that bathroom trips cannot be controlled. He is not eligible to try the Tysibri, and his doctor is pushing for the Stelara but all kinds of problems Insurance says not approved, we submitted for the patient assistance with Johnson and Johnson and were denied ( they said our insurance covers it) went back to insurance company and were told all we need to do now is order the drug. So we will see. As of now however he is miserable.

His weight has ballooned to 140 lbs and one minute he is happy, the next mean and ill tempered, then sad and crying. The predisone is horrible. He takes Lomotil and Immodium to help control the severe "D" he has and a very old drug called Carafate rectally to try to line and coat the walls of his J-pouch to try and help the ulcers and irritation. Is there anyone else here that has a child his age or any helpful and educational information for a child to begin Stelara? All these drugs scare me beyond anything I can imagine but the sickness and the quality of life he lives every day scares me just as much. I keep thinking everything we have done will make him go into a remission. We would love to see this happen but he has never been in a state of remission. It doesn't help either that the other side of his immune system doesn't work at all. He does not produce any antibodies that help fight infections. He sees and Immunologist/Allergest and receives IVIG infusions once a month for this problem. On an upside since he started this medication he doesn't get sinus infections, ear infections or colds anymore. It worries me that he takes a medication that boosts his immune system and all the medications used to treat Crohn's lower your immune system.

I have asked all of his doctors about this and never gotten any straight answers. They all tell me that one will not affect the other. Or that it shouldn't. Anybody else here have any of these same issues? Any help or information to offer? I feel like sometimes we are alone in this battle.
 

David

Co-Founder
Staff member
Location
Naples, Florida
Hi there and welcome to the community.

I'm so sorry to hear about your son, that's terrible :( My heart goes out to all of you. I have three suggestions:

1. Connect with the other parents in our, "Parents of Kids with IBD" section. The parents there are amazing and understand what you're going through.

2. Research enteral nutrition if they haven't put your son on it.

3. Read up on Low Dose Naltrexone as a treatment option.

Two and three can be combined and might be the answer you've been looking for.

We're here for you.
 
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