Who here is a parent of a UC patient?

I am so sorry that you are dealing with this...It is so hard to watch your child go through all of it. The tests, the pills, the disease itself. Every day I just wish it were me instead of my son.

My son was diagnosed when he had just turned 13 (3 years ago).  When he was first diagnosed, he couldn't even swallow a pill.  He had to learn very quickly.  My son's UC is proctosigmoiditis, affecting only the distal portion of his colon.  His current regimen is Colazal 750 mg, 5 per day and a Canasa suppository every other day.  He does the ocassional Rowasa enema if he seems to be doing worse at times (as in if he sees blood or if he is going to the bathroom more frequently than his once per day "norm.")  He is also on probiotics "Culturelle" 1 per day and "Florastor" 1 per day, the Florastor being due to a c diff infection a while back. 

We have experimented with many meds and combinations.  The Asacol did not work at all for him. I think because he didn't have the pH in his intestines to break the shell to release the medication.  The pills were mostly coming out whole. 

I requested to be able to have him try the rectal meds, and I am glad we went that route.  Immunosupressants were mentioned early on, but thus far we have been able to avoid that. 

As far as diet goes, we kept a food diary for a long time.  The only things that seem to bother my son are corn, corn based products (ie taco chips). Sometimes it seemed like he got worse with drinks containing high fructose corn syrup, so we avoid those. Try to avoid chocolate.  Now, dairy he does well with.  He drinks lots of milk without difficulty. 

Check out Dragonpack.com   It is a site for parents of IBD children.  Lots of educated parents with lots of experience in this area. 

I can't believe that it has been almost 3 years since his diagnosis.  Really, besides the medication regime and the twice yearly doctor's visits/bloodwork, he lives a very normal life.  That is what I was most worried about at first, and I hope your son does well and is able to do everything that he wants in life.....

Take care and best wishes to you and your son....

Jo

My daughter now age 10 was diagnosed in Oct 09 and it has been very challenging. In the beginning she tried all the ASA's but did not tolerate them at all. They gave her even more diarrhea and we tried 3 different ones. She was not doing well and was on/off Prednisone quite a bit too. The Pred always helped but was wreaking havoc with her body and I wanted her off.

We finally started 6-MP while on her last round of Prednisone and that finally worked! She was able to get off steroids while transitioning onto the 6-MP. She started 6-MP almost 1 year ago and knock on wood has done great!

Her Pedi GI says that we need to keep her on for several years before he would consider weaning her as he has only seen kids go into a flare again if you stop too soon.

She is now leading a normal life and acts and behaves like a normal kid.

I do give her the Probiotic VSL#3 that is proven to help especially kids with UC. I give it every am without fail.

She eats anything but I do try to keep the sugar intake low and I don't give her milk to drink but she does eat cheese.

I really hope you can find treatment success soon with your son. Do a lot of research so that you can arm yourself with information when you see the GI. Is your GI a Pediatric dr? It is important to feel like you have a good connection but trust is important too.

Please ask questions and we will try to answer them for you. I remember feeling so alone in the beginning- it was really awful and depressing...don't be too hard on yourself.

Hang in there