It is a tough row to hoe but I always remind myself that it could be worse. I write here about my daughter. She is twenty now and she was diagnosed when she was eighteen. As someone else already said, some cases are severe and some cases are not so severe. I keep hoping that Rock will experience a remission. She did pretty well on Remicade for a few months -- like a miracle. Then, it stopped working. She has been on just about every medication there is for Crohn's and she still has a very active, severe disease. She is currently on Humira and Imuran but the Humira no longer is having a good effect so she will probably be taken off of that soon -- probably increase the Imuran. Just started a new drug that is primarily for UC -- called Lilalda or something like that. Who knows? It might help.
She has had multiple fissures -- three surgeries for those so far. She will have more surgery next month but something more extensive -- an attempt to drain the fistulas further up. Her surgeon said that he had a group meeting with some other doctors to try to figure out what to do about the fistulas. I said, "How does it feel to have a famous butt?"
I do wish that she had a mild case of Crohn's. But there are many people with worse cases. I am a nurse and I see people all the time with intestinal ailments. I recently saw a young woman who has had her enitire colon removed but has never been diagnosed with anything particular. Another young woman who has had large sections of her bowel removed due to blockages -- not diagnosed with anything particular. I kind of don't get that but, then, I think -- "Well, does it matter if it does not have a name?"
There is just a lot of intestinal misery out there -- named or nameless.
My daughter works every day that she is capable and that is most days. She has a boyfriend. She wants to go to college if she can get the crud under some control. Her outlook is pretty positive. I have been talking to her lately about trying an alternative route. The mainstream medications have not worked for her. I know a doctor very well and whom I trust who could guide her in that. I mean, it is obvious that she is going to lose some bowel pretty soon if something does not give.
Sorry for rambling. Crohn's is a tough disease and I am sorry to hear you got stuck with it at such a young age -- like my daughter. But, as you can tell, many people live with it for a long, long time. Many people do go through years of remission and that is a blessing. I hope that it goes that way for you. Rock is still hoping for that and we believe that it will come.