Gav has never had any pain with flares. One day he was well, the next bleeding. We are currently being treated @ the Mayo clinic. However it is a 1000 miles away. We can't be bop on over for every flare. Most of his stuff is treated in Wyo. Gavin is a picky eater. He only eats sliced kraft cheese, bananas, yougurt...adult or childrens, jello, white bread, peanut butter, chiken nuggets, pancakes, fish sticks, baked fries, mashed potatoes, baked hasbrown patties, applesauce, white milk. Any other food and he is vomiting...No food allergies though...
I have tried changing the diet to no avail... No changes whether he is flaring or not... ARGH!!! Gav has bled to the point of needing 2 transfusions. He is only 6 and I don't want a j- pouch for a very active boy when he isn't having a flare up. His last flare up was 9/15/08 until now on 12/25/09. He was blood free for over 15 months. I am more concerned with quality now not long term. I can't replace a colon.. however diabeties, osteoperosis,cateracts and poor joints are fixable. Once you cut out you can't replace. Gav bleeds from the right side of his colon.. and from right above his rectum at the end. Like I said earlier he has no pain period. The Dr.s can't explain it and neither can I . However we both feel like a rowboat in the ocean being so young with this problem. Thank you all with you warm welcomes and advice... We are treading water until next week. Hopefully increased remicade on Mon. will help, if not it is on to Mayo in Minn.
Son was diagnosed Oct. 13 2006. He was 3yrs and 4months.
- sulfasalizine 750 mg 2x daily
- lactobacillicus 2 reg. tabs morn. 1 tab @ night
- azithiopriene(Imuran) 25mg on odd days/ 50 mg even
- pepcid 20 mg 2x daily
- prednizone 2.5 mg 2x daily
- bactrim 180/200 tablet 2x daily mon. wed. fri.
- multivitamin 2x daily
- cortafoam 1x rectum @ night
- Remicade every 6 weeks