Has anyone had changes in symptoms since being diagnosed?

[kate.flx]

I was just diagnosed with a moderate/severe case of Crohn's disease a few weeks ago after having excruciating abdominal pain every day for 6 weeks. Abdominal pain is my only symptom though and that confuses me. My Ileum is the problem, and as thankful as I am that I don't get the bowel symptoms, I am really surprised that I don't and I am scared I will develop it in the future...now, if I heard correct (which I may not have, mind you) I thought my GI said the symptoms I get initially will be the symptoms I experience each flare up, but I'd like to get some personal experience. So has anyone had changes in symptoms over the years?
Also, any advice for someone just diagnosed with this? I'm only 17 and I don't really have anyone to talk to about anything regarding this issue besides my GI. I also don't know much about what to expect from this and how I'm going to deal with flares.

 

[lmk1226]

I was diagnosed 10 years ago and pain has always been my main symptom. During the bad flares I have gotten fevers and rashes but never really had bowel problems. For some of the more minor flares pain is my only symptom.

There are some websites for teens and college students with Crohn's that have tips and message boards. I can't remember the names of any I found helpful but there are some good sites out there. If you just search "Crohn's teens" or something similar you should get a few. There may also be support groups in your area. I was diagnosed when I was 12 and I wish I had taken advantage of some of them before I went to college. You may also find the Crohn's and Colitis Foundation (CCFA) helpful.

If you are planning on going to college I would definitely get in touch with the disabilities office there. I found them quite helpful during flares. Also, if there are certain foods you find make things worse scope out a colleges dining hall before deciding on the school to make sure there is a good selection of things you can eat.

I also highly suggest you always stay on your meds and keep in touch with doctors. When I went away to college I had a sense of freedom and wanted to be "normal" and went off my meds and didn't go to the doctor. I surprisingly felt fine for the first 2 years but then went into a horrible flare that I am still in 2 years later. I caused a fair amount of damage to my intestines during that time without meds and also got quite anemic and a few other problems. Also, in my experience if you start to get the symptoms of a flare get to the doctor and don't wait for a few months thinking they might go away.

As far as dealing with the pain I usually just rest and try to keep myself somewhat distracted. Don't try to do to much. A heat pad sometimes works for me but not always. Your doctor might have some suggestions for pain management. Just take each day as it comes! Good luck!

 

[Zalanicht]

I had it in my Ileum as well and I only had pain and nausea without diarrhea.

 

[Dras]

I don't really get D either, just pain, nausea and cramping. Was diagnosed august 2009 and thats my only symptoms since. If you do get a new sympto like D or Vomiting it could mean something is wrong, so maybe just look out for it.

 

[Rebecca85]

Generally if you get a different symptom you need to get checked out. It could mean things are getting worse, or possibly the Crohn's can crop up somewhere else.

 

[kate.flx]

Okay good. I really hope things don't get worse. I'm already trying to avoid those injections, I'll just stick with my medicine and do everything my GI tells me.

lmk1226- I was thinking about the group sessions but I don't know it's really not my thing, and thankfully for my career I will not have to go away for college, just will go to community college. I'll look up some of those sites though.
Thanks everyone