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Hi everyone! I am so happy to have stumbled upon this forum!

My 9yo daughter was diagnosed with Colitis on June 10, 2009. While it's relieving to have an answer, it's almost more stressful knowing with all the information out there, especially the fact that the disease is so different for everyone.

Unfortunately, her pediatric gi doctor is across the state and the only time I have met her was a brief chat before and after her endoscopy and colonoscopy. (Her oncologist is the one who set up the appt. for us since we can't get in here until mid-December.) I was given the results via telephone, to save me a trip. I was told she has several "non-specific" areas along her colon as well as several areas of flattening. She also told me that she has chronic gastroenteritis with increased bile. We have a follow-up appt. in early August and I have a list of questions. I am not really sure what I should be asking. kwim?

The "non-specific" haunts me and I cannot put that out of my mind, even though she assured me it's common.

She began taking 800mg Asacol bid on June 15, so it's been a little over a month. I have noticed some improvement, but she still doesn't want to eat and continues to have severe stomach pain. Her weight is tracked by her pediatrician bi-weekly and I am hopeful that things are picking up because for the first time in months she has gained 1/4 pound during the last 2 weeks. She suppliments with at least 2- 350 calorie Ensure drinks each day, which I have to force. She takes an antacid before each meal as well to help with the nausea, which doesn't seem to work. 

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 Reply posted for Raechelle.

Posted: Sep 24, 2009 11:00 AM EST

Anyone with these similar symptoms for Ulcerative Colitis?Two good books. "The Crohns Disease and Ulcerative Colitis Fact Book" ISBN 0-684-17967-9, put out by the Crohns & Colitis Foundation of America, Inc. "Crohns Disease and Ulcerative Colitis-Everything You Need To Know", ISBN 1-55297-771-4.                                             Joe

 Reply posted for Raechelle.

My nine year old daugther was diagnosed with Crohns just before her 8th birthday.  I know the diseases are similar but not the exactly the same.  Your daughter's diet restrictions are interesting.  Did you notice problems with these foods, or is the doctor tellling you she cannot eat them.  Do you know why they suggested you eliminate high fructose corn syrup?

When my daughter was first diagnosed her doctor put her on a low fiber, low residue diet.  We stayed away from raw fruits and vegetables, high fiber and also fried greasy foods and red meats.  I also kept a food journal and noted what gave her problems.  I also think she did better with small meals and snacks.  I try to focus on quality and not quantity with her. 

This site is a wonderful resource, I read everything I could at first and talked to other parents.  Maybe your doctor's office can connect you with another family.  CCFA also has local chapters, you cand find one close to you.  Good luck, the most important thing that I have learned is that I am my daughter's most important advocate.

 Reply posted for Raechelle.

She is on a very strict diet; she can only drink water, milk or Crystal Light. She cannot have gum, candy, chocolate, anything with caffiene. She cannot have high fructose corn syrup. Nothing breaded, no deli meats. No apples, pears, mangos, raisins, fruit snacks/rollups. I have always had her on a high fiber and high protien diet, however I am finding that backing off the fiber seems to help a bit. Fortunately she likes to eat whole grain foods and has always been a huge fan of veggies. I have been slowly cutting some of the greens out though and am finding that she seems to be doing better without them. She's not thrilled, but I would rather her feel well than be happy with me all the time.

The only time she feels well is first thing in the morning before she has eaten. She is always cold, even when the temps are in the 90's she wears sweats and her winter coat or her blanket sleeper pajamas. She is constantly irritable (I am sure it's due to her just not feeling well) and is constantly pasty and pale and wiped out. She doesn't always feel the urge to move her bowels, so she has accidents almost daily. School is a big concern to me. She will begin the 4th grade soon. She missed much of the latter half of the school year due to her illness. I am going to get her on a 504 plan, and the school has been nothing but accomadating and understanding, which is a blessing.

Okay... I think I am just rambling, but it's so nice to have this communication with others who understand. I would appreciate any advice, especially questions I should be asking of her doctor.

Thanks so much!