I am a mom to 3 special needs kids. My oldest, 17, was recently diagnosed with ulceritive colitis. He has been in constant pain for months and was recently hospitalized for 4 days due to dehydration and bleeding. He has missed much of his junior year of high school. While in school, he had been unable to use bathrooms when needed due to them being locked. I had to go to the board of health and file a report against the school system because even with several medical documents from his doctors, they were still refusing to allow my son to use the bathrooms. We now have an emergency 504 in place and my son finally has a key to a private bathroom. He's been placed on steroids so many times and it seems like that is the only med that seems to ease the pain...he was on pentasa...but as he put it...he'd rather drink a glass full of nails. He's lost over 40 lbs since September of last year and hardly has an appetite. To make things worse, he is also bipolar. So the stress from the UC only depresses him more. Its very, very difficult to watch.
My questions for you are...what do we (mostly my son) have to look forward to with such an awful disease? How long do these "flare ups" generally last? Is there a special diet that my son should be following to avoid flare ups? are there any particularly important questions I should be asking his specialist? What about books? Support groups?
I just want to learn everything about this disease so I can HELP my son.
Missy
Reply posted for missyinct.
Forgot to add...every flare is different - for us, every flare turns into a major flare no matter what treatments we do. Some people are fortunate in the fact they can stop a flare with some extra meds or enemas. You will find all sorts of "diets" out there for UC and Crohn's...for my daughter, she avoids raw veggies and things like popcorn, but everything else she eats. Go to Amazon.com and search for books. You also might have a support group in your area. Good luck!
Reply posted for missyinct.
Wow...you certainly have your hands full! That makes me so angry about the school locking the bathrooms! NO ONE should have to worry about going to the bathroom when they need to!! I'm glad you got the 504 plan - those are very helpful.
Sorry, but there is nothing to look forward to about UC Does your son's Dr know about him being bipolar? Sometimes the steroids can make depression and anxiety worse, so I would definately be on the lookout for that. Steroids can be so great in the fact they can take away the inflammation but the side effects are so harsh! What is it about the Pentasa that he doesn't like? Have any other meds been discussed..Asacol or Lialda?
I totally understand about missing school - that is a huge issue for us and now my daughter does a form of homeschooling that is run by her school. She only has to go to 'class' one day a week for an hour to get her assignments. It has taken 90% of our stress away!
I hope I've answered some of your questions!
My son has Crohn's and is currently in jail. T....
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