First of all, I don't have Crohn's. My ten year old son, E.J. has it. He had what we thought was just childhood stomach sensitivity for some time. Late last Oct., he started having bloody diarrhea that persisted. At first, his ped. thought he was constipated so he recommended a laxative. Obviously, that was not the problem.
The blood persisted through Nov. so the ped. sent us to Vanderbilt which fortunately is only about 60 miles from home. The GI did the scopes from both ends. At first glance, he thought it was UC. We were relieved because we were led to believe that was the least problematic. Two weeks later, he called and said the blood work showed the markers of Crohn's but there was something else. His liver enzymes were elevated and they scheduled an ultra-sound which led to an MRI which led to a biopsy.
They diagnosed primary sclerosing cholangitis. They say he currently has no blockage of the bile ducts and that they wouldn't have even found the psc if not for the screening for Crohn's. I would really love to hear from other parents/patients w/ similar stories. Reading about psc is very disheartening so I don't much. I have read the post David in Seattle had on and it's fairly similar to what we read on Mayo's site. Next month, we meet w/ our liver spec. and members of a future transfer team. They say it's just standard procedure after this dx but it scares the xxxx out of me.
EJ did pred. therapy and the Crohn's is currently mostly under control. He's been on mercaptopurine for a couple of months. We are waiting to hear from his last week appt. if the 6mp is in his system sufficiently to come off Asacol.
Sorry to go so long, I've been waiting a couple weeks to post which reminds me I really need to thank two special people on here Joan (Astra), and Nancy Lee Ould for their openess and understanding. Especially, Nancy my new FB friend. Thanks ladies.
The blood persisted through Nov. so the ped. sent us to Vanderbilt which fortunately is only about 60 miles from home. The GI did the scopes from both ends. At first glance, he thought it was UC. We were relieved because we were led to believe that was the least problematic. Two weeks later, he called and said the blood work showed the markers of Crohn's but there was something else. His liver enzymes were elevated and they scheduled an ultra-sound which led to an MRI which led to a biopsy.
They diagnosed primary sclerosing cholangitis. They say he currently has no blockage of the bile ducts and that they wouldn't have even found the psc if not for the screening for Crohn's. I would really love to hear from other parents/patients w/ similar stories. Reading about psc is very disheartening so I don't much. I have read the post David in Seattle had on and it's fairly similar to what we read on Mayo's site. Next month, we meet w/ our liver spec. and members of a future transfer team. They say it's just standard procedure after this dx but it scares the xxxx out of me.
EJ did pred. therapy and the Crohn's is currently mostly under control. He's been on mercaptopurine for a couple of months. We are waiting to hear from his last week appt. if the 6mp is in his system sufficiently to come off Asacol.
Sorry to go so long, I've been waiting a couple weeks to post which reminds me I really need to thank two special people on here Joan (Astra), and Nancy Lee Ould for their openess and understanding. Especially, Nancy my new FB friend. Thanks ladies.
