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At a loss

My son who is 13 was diagnosed with Crohn's a year ago. In the beginning, he was on many different kinds of medicines and now receives Remicade. Recently we were at the Doctor's and he is doing wonderful! All his tests came back normal. However, He use to be full of energy, wanting to play sports, ride bike, play with friends, laugh, etc. This past summer he started to isolate himself and become angry over the littlest things. He's now seeing a counselor. The anger has subsided, but the not wanting to do anything is still very much there. He doesn't want to go to school, he doesn't talk with his friends, he dropped in his grades, constantly fighting with his brother, not caring about his hygiene, (which he always had to dress nice, wear cologne/deodorant) etc..About a week ago he started complaining of severe stomach cramping. He hasn't been to school since because of the severity of his pain. I had taken him to the Doctor, but all looks normal. His Doctor has set up an appointment for a scope to be done. I'm at a loss and don't know what to do/think/say anymore. If everything appears to be normal, then why the pains? I hate to think at times he is "overreacting" because he wants to be cyber schooled. I do think he feels embarrassed at school if he has to use the bathrooms there or when his stomach does make loud uncontrollable noises, the kids turn and say, "Eww, did you just fart?!" I don't know what to do.....
 

Jennifer

Adminstrator
Hi kelly78 and welcome to the forum! :D

I'm sorry he's not doing well. If he has some cramping and loud noises then there should be a cause from what I'm thinking is excess gas. If they can't find a cause then you could try probiotics, reduce sugar from his diet and maybe even try a low residue diet (no soda either) and reduce milk products in case he's lactose intolerant.

As for school, kids can be very mean and it is hard going back to school after your diagnosis. It took me a few years to get back to my normal self and honestly I think switching schools (we moved to another town so I had to) helped me cope a bit better even though my first year was tough because I was so far behind. I hope the counseling continues because depression can take a long time to treat. I'm glad that it seems to be helping so far. :) I had to do counseling for a few years as well.

We do have some other teens on the forum so your son is welcome to join if he wants to. They will all understand what he's going through.

I'm glad that you found the Parent's section already. Lot's of great help in there. :)

Keep us posted on how he's doing and how you're doing as well. :hug:
 
Thank you. I started a food journal to try and understand what may be triggering his pain. I've given him gasx thinking that may be the possibility, but no relief. I never thought of the drinks. Normally, he doesn't drink soda, but lately he has. I spoke with him tonight and we have a game plan on changing again our eating habits. I am going to check different sites on recipes he may like. It's trial and error. It's frustrating, overwhelming, and depressing. Why is it one time he can eat something and have no pain and another time he can eat the same food and he'll have severe abdominal pain?:ybatty:
I'm trying to get him on here to talk with others his age and to read their stories to see how much support others offer. :eek:rder:
It really is heart warming to know people care. Maybe one day he will.
 

Jennifer

Adminstrator
My only guess is that we're dealing with inflammation that comes and goes. So sometimes tests will be normal but other times there's probably small amounts of inflammation present between tests. Inflammation can creep up quickly (for me less than 2 months (SBFT one month looked good, CT scan almost 2 months later showed a full blockage) but it can happen a lot faster than that) so in between tests there may be some active inflammation going on making it ok to eat something one day when there's little to no inflammation to the next day there may be a little more inflammation causing symptoms. Now I honestly have nothing to back that up with other than my own experience with the disease. What's triggering the small amounts of inflammation? I honestly don't know but I do know that Crohn's isn't predictable.

I've had the same problem where I can eat some things just fine for a while then suddenly I can't anymore. Other times when I'm feeling a lot better I can eat things off of my trigger food list (like salads or any raw veggies). Less inflammation produces fewer symptoms which means fewer reactions to foods. During remission though I don't have these problems at all. Now that I'm in a flare again, it seems like remission and flare are fighting back and forth so I often feel well but then I get thrown another curve ball. Its possible that your son is experiencing something similar. Its more Clinical remission rather than actual remission because there's still some symptoms.
 
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