Community Answers

  1. GabesMom says:

    My son Gabe age 12 was diagnosed a year ago. He had stress Monday afternoon. He was down with stomach pain Monday night till this morning, 1.5 days later. He missed school yesterday. He didn’t have other symptoms, such as that would indicate an obstruction etc. I am trying to understand the cause of his pain since he is in remission thanks to Remicade. Last scopes and all labs look clean. No detected strictures, fistulae, ulcers, etc. He is on 30 mg of amiltryptaline for IBS. Since he experiences untraceable pain his doctor diagnosed IBS explaining that it may be ghost pain, his nerves are used to pain and feel it easily even when there is no physical source. Gabe goes to therapy weekly for stress and coping. I am very attentive to his emotional needs however I finally encouraged him to tell his mind and body to believe they are OK now. Can someone please help me understand the pain where there is no evident physical cause?

  2. Colitis Ninja moderator says:

    _This is a very difficult _question to answer. The short answer is, if someone isn’t going to understand your disease, you can’t make them. But there are ways to help you explain it. There are many, many, many blogs out there who can be your voice. I would encourage you to share those blog posts with your family and friends. Talk openly about your disease and how it affects you. Be raw, honest and real with them. Point them to the CCFA. CCFA has a plethora of resources not only for patients, but for caregivers also. Have some of your friends with Crohn’s or UC over to help validate your problems. If you aren’t comfortable talking with your family, write them an email or a letter. Tell them exactly how you feel and what your body does to you. The best way to help explain IBD to someone is to do your research, understand your disease and then explain it to them. As I said in the beginning, if someone isn’t going to understand your disease, you can’t make them. The best thing you can do is try to educate them. You may never make them understand, but you can always find support!

  3. Give them food posioning or gastro and say, here you go. This is me 24/7 ;P

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