- Joined
- Jan 21, 2010
- Messages
- 15
Hello..my name is Renee and I am here to tell you the story of my son Dominik. He was finally diagnosed in September of 2008 with Crohns after 9 months of tests which included 2 colonoscopies, numerous imaging tests. His liver, spleen and pancreas were enlarged..he had a surgery which included putting a port in his chest for what they were 97% sure was Lymphoma...ya, no it was Crohn's. He was 11 at the time. He has had 3 different Gastroenterologists in the last three years. He has been on Pentasa, Entecort, Apriso and LDN (none of which has ever done anything for his inflammation. He tried Azathioprine for 2 weeks but it made him quite ill. He has never had a problem with D, but he has had growth failure, stomach pains and constipation. He has not been a good eater. His current gastro sent us to the Mayo Clinic in Minnesota last month..he had a colonoscopy and an MRI. Of course his colonoscopy has shown that his disease has progressed, but it was the MRI that was so shocking. 75% of his small intestine is effected by Crohns. It is rare for Crohns to be in the Jejunem (the upper section of small intestine) but he has skip lesions throughout all the way to the ileum, with two places nearly strictured. Nobody had any idea that he had that much inflammation. They told me it was the worst MRI they have seen in a long time. Despite my previous objection to Remicade, I asked for the infusion that day! I have my boy back. He has been on Remicade for 2 1/2 weeks and has gained 8 pounds. He has so much energy. If there is anyone out there who feels like they have unanswered questions..I would highly recommend going to Minnesota!
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