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Shocked-another diagnosis!

Hi Everyone,

My name is Lisa and I am the mother of a 17-year-old son named Huner who is just in the process of being diagnosed with Crohn's. He also has Common Variable Immune Deficiency and received IVIG every month. Hunter started with abdominal issues I think last summer. He complained of nausea, "stinging" in his abdomen, feeling like he was going to pass out when he stood up. In December, he started with more intense abdominal pain and it got really bad he ended up in the hospital with what they thought was a Campylobacter infection. He had a CT scan at that time that showed thickening of the cecum. He didn't get better until mid February until April 4, then the pain started again and has not let up. He was hospitalized again at the end of April and this time tested positive for C-Diff. After a colonoscopy, upper endoscopy, another CT scan, and an MRI, they still didn't think it was Crohn's although the cecum/terminal ileum is all inflammed and showed "acute inflammation. He was started on Budesonide 2 weeks ago and also started a gluten free diet. He still is having continuous abdominal pain and is has been out of school since. He has lost so much weight-124 lbs, 5'11". Not sure if it's because he is gluten free. The Flagyl was difficult for him to take-severe nausea.
I can't believe this is happening and I pray every day this will go away. They now want to start him on Remicade and are checking with my insurance to see if they would cover it. I have been reading this forum looking for answers to anything that will help. It looks like everyone's situation is different and there is no perfect solution to help this problem. He is trying the gluten free, but I also think that dairy is an issue. His ileum is narrowed and I'm concerned that by eating he is going to constrict. Should he be on an all liquid diet? I have been giving him Boost every day to supplement.
Thanks for any support/suggestions you can give us.

Lisa
 

Trysha

Moderator
Staff member
Hello Itemme
Welcome to the forum.
How very hard for you both to be coping with such a difficult diagnosis.
I cannot help with your questions but there will be some on the forum who will be along to offer their suggestions.
Best wishes
Hugs Trysha
 
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