Couldn't Figure how to switch old profile. Dad of J will any how.
My son was 4 when diagnoses with UC in 1999. In and out of hospital every 6 months for 3 years. Try all meds. Got worse everytime we weeded him off of predisone. We were worry that he made had crohns because my wife had crohns since see was 9.
Because of the UC was bad and the Meds started messing with his growth and other things the Doc discuss with us the J-pouch. We decided it was the best thing for are son. A month before the operation we got cold feet and decided to get a 2nd opion that doc told us to try remicede and if that didn't work than we should go ahead with the operation. It didn't work 2 month later in hospital. Another doc ran a blood test which let you know the percentage if you have crohns or UC. It came up 90 percent that he had UC 10 percent chance Crohns. So Janaury 2003 Had 1st Operation 9hrs on table and 2nd Operation in May2003.
At 12 years 58lbs Now he has trouble gaining weight you name it we try it. Has been going to bath room for the last year about 10-12 times a day somedays more and has troubles during the night.
He had a scope done last Monday top and bottom and did a bio now they suspect crohns. We are now having blood work done. They found inflamation above the pouch and in the pouch. They are now treating with pentasa which we know is for crohns.
My wife has had allmost all of her large intestine removed (pieces at a time) because of crohns. If his Colon or large intestine is gone, what is left for crohns to attack. We have not told our son yet and if positive we may hold off a while he has already dealt with enough already.
We are praying that the blood work comes back negative to Crohns.
Thanks for listening.

It seems you did your absolute best to make the right--perhaps the only possible--decision to be made at the time. I am so sorry you are having this worry now and hope the new test results do not change his diagnosis.

With Crohn's, the disease can manifest anywhere from mouth to anus. Colectomy is often done when the disease is confined to the colon (Crohn's colitis). It improves the general condition greatly, but does not remove the disease. Even though Remicade did not work before when he had a colon, it may work for small bowel disease. Humira is another option. I think they like to stay away from methotrexate in growing kids. If Pentasa works out for him that will be a great thing, since the side effects are few.

Another thing to consider is celiac disease. It appears that it is more common in those with IBD. That can have a definite impact on his ability to absorb nutrients. You may want to try eliminating gluten from his diet (mostly wheat products) and see if his condition and weight improve. There are also tests for this disorder.

Jan

Dad of J-Pouch,

I was diagnosed with UC when I was 3 yrs old and they were absolutely sure it was what I had. I had a proctocolectomy (with formation of j-pouch) at age 13. Since then, I have had pouchitis chronically. I go to the bathroom 10-15 times a day. I am almost chronically dehydrated...I have a home healthcare nurse come to my house and give me hydration therapy once a week.I am now 25 and started having more problems after my hysterectomy in Aug. I had a scope done, and in the past year, I have developed a constricture in my terminal ileum, a fistula in my j-pouch, and ileuitis...these signs are primary seen in crohns. I am awaiting the results from blood work. I also have a hard time gaining weight.
Just thought I would let you know you arent alone!
-Amber