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Long story...short, My son was dx with ulcerative colitis at about 18 months old after months of being in and out of the hospital due to all the other stuff (bloody diarhea, weight loss, dehydration, etc) that comes with the dx. He was started on a compound version of Azulfadine. This worked great and the Dr. wanted us to keep him on it as a way to prevent future flare ups, but the pharmacist became concerned with him being on such a medication for an extended period of time...leading me to take him off. He didn't have problems for a while and began flaring again. I started seeing a new Dr. The new Dr. started him on azulfadine and he would have periodic breakthrough bleeding. They did the prometheus test on him at about age 4 and changed the dx to Chron's. His paternal grandmother had been dx with Chron's, the prometheus test came back stating Chron's and we were told that with that close of a relation that it is extremely rare for him to have colitis and her to have chron's. It was off and on with flare ups and meds...

 Reply posted for ccjmacca.

I have a 14 year old who has colitis.  He was doing the same thing, but not telling me that he was having diarrhea and even worst bloody stool.  Finially he admitted to my mother that he had been sick for a while, but didn't want to go back into the hospital.  I am getting frustrated because he has been on steriods for almost 2 years straight.  He has only been completely off for about a month and a half.  His weight is an issue now.  He is 14 years old, weighing 90 pounds.  My husband is 6'2" and he is only 5'2". 

 Reply posted for ccjmacca.

Oh and I meant to say that the whole Crohn's/Colitis thing confused me for ahwile.  My daughters dx was Crohn's but we had a friend with UC.  It is really all in the inflammatory bowel disease category, it's just where the inflammation is located.  You all have so much else going on, I would try not to worry too much about that part (easy for me to say, right????)

 Reply posted for ccjmacca.

You all have been through a lot.  I will tell you that with my daughter's steroid wean, 10 mg at a time was too much.  She would always start to flare a little.  So, after talking to her doctor, we did it in 5mg implements.  I can't say that will work for everyone but it did work for us.  We were successful in FINALLY getting to 0.  But the slower wean worked better for us.  Maybe something to talk to your doctor about?

 Reply posted for ccjmacca.

Sorry...the last 2 messages are reversed. It's the original...next...then the end.

 Reply posted for ccjmacca.

The ending...

He stopped bleeding within the first week and seemed to be responding well...she dropped him to 20mg of prednisone for 2 weeks...then to 10mg (remaining on the original dose of Omeprazole and Asacol). He has started bleeding again and it seems worse...even though he's still on 10mg of prednisone and the other meds. I am so worried...I am confused. Has anyone had a similar experience...what do you think of the colitis/chron's/colitis dx? What are alternative methods you have used to the steroids? How do you, as a parent/caregiver cope when you are so scared? I am willing to hear anything at this point...please share your experience with me.

 Reply posted for ccjmacca.

the rest...

He had done really good for almost 2 years when he went into a flare that caused him to lose a serious amount of weight. He is very tall for his age and has always been thin, but at 8 he weighed 55 pounds and was dropping dramatically and this started another round of test (colonscopy, endoscopy, blood, etc.). The nurse called and told me, following that round of oscopies that it showed colitis! Even though the last 4 years we were told it was Chron's. This caused a lot of further confusion. She started him on another med called Asacol (I think is similar to Azulfadine). I was always relieved due to the progression of meds/treatment the first ped GI told us. I was hoping to keep it under the steroid level...as I am sure everyone thought it would stay that simple, if you could call it simple. So, he seemed to respond well to that and has been doing really well until about a month ago. I could tell he hadn't been feeling good and sat down with him and asked. He told me that he had been bleeding for some time, but didn't want to say anything for fear of having to go through the usual round of testing. He couldn't tell me how long he had been bleeding. Up until then he had always been really good about telling me everything. He has just turned 9. So, this flare has been different. He is complaining of a lot of joint pain (mainly in his legs), headaches and more severe stomach pain. Took him to the GI and she started him on 30mg of Prednisone, 40mg Omeprazole and 2 Asacol 3x a day.