Hi I am the mother of a 14yr old with crohns of the colon. He was diagnosed a year ago after becoming anemic. While his diagnosis was considered "mild" his pain on the lower left hand side of his abdomen has progressively gotten worse. To the point now where he is bed ridden. He says it is localised sharp pain. The Gi doesn't believe his symptoms are consistent with the colonoscopy, blood tests, and stool test. Another colonoscopy yesterday only showed very mild inflammation . Don't know what to do. Would appreciate some feedback!
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14yr old son with chronic pain
- Thread starter Jakesmum
- Start date
Hi Jakesmum, if I were in your position, I would definitely look for another GI. The relationship between you and your GI should be one where the GI listens to his patient and uses that info - if you don't feel he is doing that, and he doesn't seem to be based on that, I would ask another GI. With my husband, I told him, we will go to as many GI's as necessary. I am very sorry your son is going through pain:-( Have you put him on a special diet? Maybe have a food log to see if it triggers more pain? Also, have you considered putting him on Vitamin D supplements? I read a lot that that helps symptoms quite a bit....
Hello my name is Rich and I'm sorry to hear about your son. I was 19 when I had my first flare up and I know how hard they can be. I have a very bad case of crohns and I hope your son isn't as bad as I am so I'm telling you exactly what happened to me. At 19 I was giving prednisone and alzulfadine and it went into remission for 2 years. I then had another flare up at 21 and eventually hospitalized and had to have an ileostomy. The ileostomy took some time to get used to but it gave me pretty much symptom free for 30 years. I worked construction, got married, had kids and led a normal life. Now the down side of my story is that the doctor left a small portion of my colon and left my rectum in case the crohns went away down there. They could then reverse the ileostomy. The crohns in my colon and rectum never went away and I never did have the ileostomy reversed. In the last three years I've had a lot of pain in colon and rectum and I couldnt be screened for colon cancer the doctor advised to have it all removed. December 11, 2015 I had the surgery to remove them both and have been having a problem with the wound healing where my rectum was. I hope both the positive and negative sides of my story help you to make the best outcome for your child. At least try the prednisone and alzulfadine.
Hi and welcome!
I'd encourage you to check out the Parents of Kids with IBD forum. There is a LOT of info there.
A couple questions:
Has your son ever had an MRE or pill cam to check if there is Crohn's in the small bowel?
Is he on any maintenance medications?
Has he ever tried a TENS unit for pain? Heat packs? Would it be possible for him to see a pain management doctor?
Even if the inflammation is mild, it sounds like your son isn't in remission. Does he have other symptoms, besides the pain?
Hang in there!! It is so difficult to watch your child in pain.
I'd encourage you to check out the Parents of Kids with IBD forum. There is a LOT of info there.
A couple questions:
Has your son ever had an MRE or pill cam to check if there is Crohn's in the small bowel?
Is he on any maintenance medications?
Has he ever tried a TENS unit for pain? Heat packs? Would it be possible for him to see a pain management doctor?
Even if the inflammation is mild, it sounds like your son isn't in remission. Does he have other symptoms, besides the pain?
Hang in there!! It is so difficult to watch your child in pain.
Thank you for all your feedback. Jake had an MRI on the small bowel and it came up clear. Colitis only present in the colon and is considered 'mild' so cannot understand why he is in so much pain. Waiting for biopsy results now. Hadn't considered TENS (which I just looked up!) or vitamin D. Will give these a go. Also getting a blood test to test for damage to the pancreas. Have read that endoscopy proceedures sometimes damage the pancreas.
thanks again..will join the teens support group as suggested. :dusty:
thanks again..will join the teens support group as suggested. :dusty: