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Crohn's Disease
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Posted 2/18/2014 9:31 AM (GMT 0)
I was diagnosed with Crohn's disease about a year ago and have had a terrible time adjusting. I'm 20 yrs old btw.

I have been in constant pain that is often debilitating since Jan 2013. I am absolutely miserable. In September 2013 I started taking humira and after a colonoscopy my doctor says my crohns is inactive. I don't quite understand because I am still in a ton of pain, have no desire to do anything (or even get out of bed each day), and have all of the common bathroom related symptoms.

Will I ever get my life back? I am working part time 3 days a week and it's too much. I can't eat a meal without needing to lay down after. I believe my condition has made me extremely depressed also. Literally all of my friends are off living their lives in college and I have nobody to talk to or help me with what I'm going through. Is there anybody that has experienced anything similar that can help?

Post Edited (JRN5150) : 2/18/2014 2:36:01 AM (GMT-7)

Posted 2/18/2014 9:38 AM (GMT 0)
I should note that since the colonoscopy in September my pain has dramatically increased. Especially since the Holidays and the unhealthy eating. Recently I have also been experiencing headaches that last around 5-8 hours a day, every day. They are very irritating and quite painful.

Post Edited (JRN5150) : 2/18/2014 2:44:43 AM (GMT-7)

Posted 2/18/2014 1:28 PM (GMT 0)
Welcome to the forum, JRN. I'm sorry you are having such a tough time.

It's too bad that you are feeling so poorly on Humira. Do you know the history of your Crohn's? Where is/was your inflammation?

If you have inflammation in the small bowel prior to using Humira, it may be that you still have inflammation there. Aside from your last scope, has your GI done any other testing to establish why you might be feeling ill still?
Posted 2/18/2014 3:35 PM (GMT 0)
I only have time for a quick reply. I was diagnosed about 12 years ago when I was 19, my disease was very severe at the time and with aggressive treatment it took about 2 years for me to feel like my old self again. I hope that is not the case for you, just wanted to give my experience. I also was on anti-depressants in the beginning because I was having trouble dealing with the diagnosis and being so ill. There is nothing wrong with needing help with depression, it is a huge adjustment to make from being healthy to being sick and coming to terms with a diagnosis of a chronic condition.

You should definitely keep on your GI about your current symptoms and ask if there are any tests that can be done.

You might also look for a local CCFA chapter (if you're in the states) to go to a meeting to talk with others who are dealing with Crohns.
Posted 2/18/2014 3:52 PM (GMT 0)
i was diagnosed at 16. I'm 26 now. my experience all through high school and college were... not quite as painful as you describe, but i definitely missed out on a lot. i still do. on one level it's frustrating, but on another, i'm okay with it. i mean, i've always known my path through life was going to be different from everyone else's. i'm just not that kind of guy. For support I had my parents (on whom i still rely a lot, emotionally) and my friends online. I was big into online gaming (still kinda am, but not as much) and made a lot of friends through that. In fact, my most consistently close friend is someone who lives on another continent, and neither of us has the money/health to travel.

I got on disability. If you're unable to work, that's the appropriate response, even if your mobility isn't restricted. It's helped a lot for my peace of mind, if nothing else. That could be an option for you. "But Bane, I'm working! I'm not disabled!" No? You said it's too much. Is it or isn't it? If it is too much, then you're disabled. We grow up with the idea that disabilities are either mental or affect our mobility, but the human body is not so limited as all that. It can find a multitude of ways to **** with you! So I'd talk to a disability lawyer. See what they say.

Everyone here has experienced being left out because of our health. It's not something that goes away with time, unfortunately. So you're definitely not alone in that.
Posted 2/19/2014 12:58 AM (GMT 0)
I was diagnosed at 18 and was miserable. I remember wanting to die. It was a rough road for a while. I tried every drug including Remicade which eventually brought be into remission. I completely went off meds about 6 years ago and have been fine ever since. I am 33 now, married with a wonderful little boy. I do eat all organic and have a reverse osmosis water system. I have been symptom free for about 8 years. I strongly believe there are environmental causes to our disease. Good luck, things will get better! You have to fight, tell your body to get better, focus, be determined.
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