Son, 11, newly diagnosed.
Wed, July 20, 2016 6:41 PM
My boy, Jesse, after a long, stressful bout with bloody, diarrhea and joint pain and other strange symptoms, was diagnosed with UC 9 weeks ago. He finished his first round of steroids, which we were hoping he wouldn't have to do, and now he has to do a second round, plus the Dr wants him to take two other medications on top of the Apriso that he also takes.
We are so stressed and confused about what he can eat or can't eat. How much activity he can handle. If the steroids don't help, then what?
And, my boy is doing his best to be strong and not get upset...but, it's really wearing on him. He want's to be "normal"....I don't know what to do.
I have looked at everything online about food and it's just confusing to me. Plus, there are so many "other" options aside from the steroids but I fear that if we don't go the steroid route that he will get sicker.
I need advice. Support. Encouragement.
Thank you...Lisa
Joined Jul 20, 2016
Thu, July 28, 2016 12:06 PM
Hi Lisa,
Ulcerative colitis can be challenging but it can be managed through maintenance therapy (medication), a healthy and well balanced diet and maintaining a healthy lifestyle.
First it may help to review CCFA’s brochure entitled “Managing Flares and other IBD Symptoms.” The link is provided below:
http://www.ccfa.org/assets/pdfs/flares_brochure_final.pdf
For information on the latest medication options you can read our brochure “Understanding IBD Medications and Side Effects” at:
http://www.ccfa.org/assets/pdfs/understanding-ibd-meds-nov.pdf and new treatment fact sheet at: http://www.ccfa.org/assets/pdfs/recently-approved-treatments.pdf
Understanding the role of diet may help in managing a flare. To learn more about diet check out the diet brochure at: http://www.ccfa.org/assets/pdfs/diet-nutrition-2013-1.pdf .
Finally we have a book just for kids. Please share a copy of IBD & Me Activity book with your son at: http://www.ccfa.org/assets/pdfs/ibd-me-ac.pdf
Joined Oct 12, 2017
Fri, July 22, 2016 12:57 PM
Reply posted for ttjmom.
My daughter was dx w/CD @4 and is now 16 so I've been @ the overwhelmed stage you are in right now.
Many times the first line of treatment to control a flare is steroids. They are hopefully short term, tapered slowly and provides time for the body to rest and other meds to take some affect.
In terms of what to feed him, everybody is different. We had gone to a nutritionist and one of the recommendations was a food diary. This will help you determine what foods agree / disagree w/him. For the time being, keep his diet as whole as possible (no fast food). Limit dairy as many times there may be an undiagnosed lactose intolerance. I also found cutting out gluten to help, but you don't want to make too many changes at once and make your son even more miserable. We did low fiber, low residue (no seeds, nuts, etc). Over cook veggies and have him chew his food until the food is nearly dissipated as his food will be better broken down and easier to complete the digestion process.
One tip I try to give all parents is get involved, participate in the walks, raise funds and send him to Camp Oasis. He may be nervous to attend, but my daughter had the time of her life each year she attended. It is a place where the kids feel they belong as everyone has either UC/CD. She has made a couple of her best friends there and even though camp is only 1 week out of the summer they talk year round.
As for his activity, let him do what he can, just make sure he drinks plenty of WATER.
Joined Sep 9, 2009
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