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undiagnosed

Sat, April 10, 2010 12:00 AM

My son first showed signs of colitis at age 14. He is now 19 and in college. My frustration as a mom is that he still goes undiagnosed. He has had a colonoscopy and upper G.I. First the doctor said that he has colitis, then he said that lab results are inconclusive. He is currently taking Asacol. None of the doctors will give a name to this disease, therefore he is not receiving proper treatment. As a child, I watched my dad suffer from this disease. He had every treatment known to man yet, also remained undiagnosed. The closest the doctors ever came to a diagnosis was " colitis". I watched my dad go from bad to worse with symptoms of cramping, bloating, much time in the bathroom and eventually not going out of the house at all. He suffered from depression, signs of scizophenia and at the age of 80, he had, had enough of the disease and life and decided to end it all. I am so afraid that this is the same dark path that my son will follow. How can I find a doctor that will give this disease a name? I am desperate to get my son the treatment that he needs before things get worse. I would appreciate any help you can give. Thanks!

MOYA ( mom of a young adult)

moya
Joined Apr 10, 2010

Tue, April 27, 2010 12:00 AM

Reply posted for alanschachter.

Dear Alan,

Thank you so much for your help! I had no idea that there were entire books written on this subject and that there would be other diets out there besides what the doctor recommends. I feel more hopeful for my son and I'm ready to head to the bookstore. Thanks again.

Moya

moya
Joined Apr 10, 2010

Sat, April 10, 2010 9:45 PM

Reply posted for moya.

Im sorry your father had to suffer so much. IBD treats everyone differently. Your son is not your Father. Try not to look so far into the future. Take this a day at a time, a step at a time. The medical establishment knows alot more about IBD now than they did a few short years ago. IBD is illusive, you get pieces of the puzzle as you go along. The more information you get the clearer the picture. The doctors try various approaches to keep the IBD at bay. Everyone reacts differently to these methods. Don't be afraid to go to another gastroenterologist. Good communication with the doctor is very important. Educate yourself as much as you can about this disease. There is a lot of imformation on the computer and this forum. All we can do in life is try the best that we can, give it our all, and hope for the best. "Crohns Disease and Ulcerative Colitis, everything you need to know", by Fred Saibil, M.D., ISBN 1-55297-771-4. "The Crohns Disease and Ulcerative Colitis Fact Book" by the Crohn"s and Colitis Foundation of America, Inc., ISBN 0-684-17967-9.

Joe

joe
Joined Oct 24, 2019

Sat, April 10, 2010 12:00 AM

Reply posted for moya.

Moya-

How is he doing on the Asacol? Has he seen a GI dr? I would think at some point he should have another Colonoscopy for proper treatment. On the other hand if the Asacol is working for him and keeping his colitis at bay, then I would have to assume he is in some sort of remission at this time and only needs to seek help from the GI if things would become worse.

mygirlrj
Joined Oct 22, 2009

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