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Crohn’s Disease is a life-long, often times painful disease.
It’s an Inflammatory Bowel Disease, which causes inflammation and/or ulcers to form in the GI tract – but is not limited to just the intestines.. Crohn’s may effect from the mouth to the anus as well as joints, skin problems, fever, and more.
This is an ongoing disorder and coping with Crohn’s Disease can be frustrating as well as depressing. Coping with Crohn’s is my space to share the ups and downs I deal with weekly, daily…
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My son is 16 and was diagnosed with Crohn’s a few months ago. For about a year he had SEVERE swelling in his lips (cheilitis granulomatosa) and up into his cheeks & jaw at times. Crohn’s, a possible diagnosis, was ruled out because he had no other real symptoms. He was placed on steroids & remained on them for about a year. He’s 4’10, started at 103 & gained 40 pounds. He also had other classic steroid toxicity symptoms. The lip swelling was reduced but, obviously, he had to be tapered off the steroids. His lips are starting to swell again, just a bit so far. The Crohn’s is rearing its ugly head now and he is in severe pain. My question is: has anyone else had any experience with this lip swelling and, if so, how have you handled it?