Its been a while since I wrote. With homeschooling and Bruce's illness its been a little stressful. We were doing well on the Enbrel shots and the NSAID Piroxacam, but we were having stomach issues. He was hurting every night before he went to bed....Almost like it took one of the drugs 24 hrs to get to the part that was hurting him. At first we thought he was just trying to stay up late, but about an hour later he would be fine. One night it was real bad and our Rheumy Dr. N told us to stop the piroxacam b/c it sounded like that would be the cause. Bruce started to have bowel movements with blood, clots, and coffee grounds and going up to 9 times a day. Bruce had an Endo/Colonoscopy on February 23rd and it was confirmed that he had Ulcerative Colitis from the rectum up to the sigmoid of the left colon. We were sent home with prednisone and Asacol to try to reduce the inflammation. This was not caused by the meds that he was taking. It is another auto immune disease. Juvenile Spondylitis and Ulcerative Colitis can go hand in hand together. Its just a matter of which one is going to show itself first. That following Monday we were admitted to the hospital due to the amount of blood and inflammation his colon had. Bruce didn't eat for 4 days and finally his bowel movements showed no sign of visible blood. Saturday we were on our way home. It was a long stay and I didn't realize how much it sucks the life right out of you. We were happy to be home. That Sunday I took him to an Urgent Care for a dx of Bronchitis and had to cancel his Oriencia IV infusion for that Tuesday. We went on the 15th and so far all has been much better. We are being careful with his immune system due to the amount of prednisone he has been taking which is 60mg and that the Oriencia has weakend his immune system. He also is taking Asacol for his UC and Canasa(asacol suppositiry) to calm the inflammation down. He can not have Fruits and Veggies or seeds of any kind nor any thing high in fiber. I remembered that his eye Dr. had wanted to see him if he ever was on a large amount of prednisone. He only had taken prednisone in the beginning to help his joints but it didn't work. It doesn't work on some kids. Gastro Dr. said it wouldnt help his joints but it will for the Ulcerative Colitis. Thank God it did. I had a bad feeling about seeing the eye doctor. Just did. Sure enough his pressure in both eyes was high and he now has Glaucoma which I am giving him a Beta Blocker eye drop 2xs a day. Prednisone is a nasty drug but a necessity. No damage to the eye but I now have to see eye Dr. every 2-3 weeks. Currently we are on a 10 week taper of the Prednisone. We are at the 40/30mg week which ends Friday. The following week he will be on just 30mg then following to 30/20 and then 20mg and hoping we can get to the end without anything stopping us. If signs of bleeding come back we up his prednisone again for a week then try to taper again. If these meds don't work we have to look at Remicade Infusions. So far the Oriencia is working well for his Juvenile Spondylitis but since both the high dose of prednisone and the Oriencia were started about the same time we don't know what to expect. We just have to hope and take one day at a time.
Bruce is in good spirits despite the change in his appearance. Prednisone justs bloats you out and it is a bit of a change for him to look in the mirror. He holds my hand a lot when we walk every morning. It helps his stomach and face so it wont bloat so much. Actually he doesn't let go. This makes me sad and happy all at the same time. Happy because it doesn't bother him to hold my hand and sad that hes 9 and is afraid of letting go and I tell him I have him for life and he can rely on me to get him through this and he is thankful. I am overwhelmed at my son having to deal with another auto immune disease, Ulcerative Colitis is for life with hopefully long remissions. I often wonder what his adult life will be like for him as I show him how to get through this part of his life now. I can honestly say that I have never met a more stronger individual than my child. Oh how hes grown and what he knows. Too much about medicines and doctors and pain, and just plain being scared but looking at it head on and saying "bring it on".
I got mad one night a few weeks ago. I was so busy helping Bruce and being at the hospital that I forgot to mourn one more illness. We haven't even really had time to adjust to the Juvenile Spondylitis because all drugs were not working and the Ulcerative Colitis popped up then add the Glaucoma and I don't think I ever cried as hard as I did. I was so
Bruce's next infusion is on the 12th of April and we will have tapered the prednisone down to 30mg by then. Hoping that we finally have things under control and lesson the glaucoma he has at this time. Our goal is to have Bruce on all meds that will work for him with no setbacks. These past 2 months have been hard on Bruce and our family but if we can just keep these illnesses in control, Bruce will be in great shape.
