Erik -sorry I hit a sore spot. I DO take this disease very seriously and as I prefaced in my post it may be because "I" have a milder case of the disease that I have this view point. However, many people that have surgery, that are on remicaide, etc, still work or go to school or have families. This disease can absolutely be life altering and I did not mean to trivialize it. I guess what I meant is you can still live a good fulfilling life albeit with accomodations. My view might be skewed if my disease wasn't managable with medications. However, I still have days it gets the better of me. Recently my boss told me I might have to go on a day trip with him 3 hours north. He knows all about
my crohns yet I still worry I will be sick and embarassed on the ride. So I guess you are right, that is not "normal." I guess my definition of normal was being able to work, raise a family, etc. - even if it is more difficult. I am very sorry that you lost someone to this disease. I was under the maybe mistaken impression that it is rarely a terminal illness. I know about
20 people personally with this disease. I am worse off than about
10 of them and better off than about
9 of them. So in my experience there are lots of people that can live totally normal lives. We just don't see them on the board because their disease is so mild that they don't need support. So while some people have their lives wrecked by this disease, others are blessed and continue on.
And one more thing... please read the rest of my posts and you will see that I do recognize how severe this disease is. Currently I have raised over $1000 just this year to put towards a cure. I think you and I just had different definitions of what is "normal." Part of that may be my denial and my insistence that I still live a normal life (even if to others my life is far from normal.)
Edited to add:
On a final note- I think I am also in a different situation because I was very sick and undiagnosed for about 5 years. I was so relieved to finally hear that it wasn't in my head that I welcomed and embraced my crohns diagnosis. I could final start treating it. I think if I had been always healthy and woke up one day sick and boom was told I had crohns and would be like that for life I would be a lot more cynacal. However, for me, being diagnosed with crohns was so much better than being told I was crazy and that there was nothing wrong with me. At that point I could NOT live a normal life. Now that I am diagnosed and treated I can live a modified semi-normal life.
26 Year old married female law student. Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I alos take a birth control pill to allow some fun in my life.
Post Edited (FitzyK23) : 5/14/2008 11:13:51 AM (GMT-6)