Posted 2/18/2015 2:52 PM (GMT -6)
For what it's worth....
I pop in and out months at a time, and this April will be my FORTY YEAR anniversary of this wonderful disease. And yes, I still have my colon, never had or needed surgery. And yes, I have been hospitalized for flares. I have had short remissions, and 10 year remissions.
There is life beyond this all, and It takes years to NOT be obsessed with it. This is natural, and even as I got older I would go from being obsessed with it all to not caring. Yes, it does depend on flares. The only things I can say...and yes, I know, easier said than done, is:
1. GET A HOBBY.
2. Find a support person...not just this, but friends you can be with face to face...get out of the house.
3. Learn what you can, digest it all, and realize there is NO cure for this. When I started this in 1975 there were two drugs for this or have surgery..that was your only choice. DON'T believe in miracle cures/oils or diets. Some things may help, but never cure. We are living in a fantastic time for this, believe it or not.
4. If you aren't happy with your care, FIND ANOTHER DOCTOR. I have a fantastic doctor, and there is NO excuse for some of the treatment I read on here. Be proactive (but reasonable) about your treatment. Some doctors are just jerks. never be afraid to change.
5. This is not the end of your life. This is a disease that takes time to heal. Nothing happens overnight with this. Most likely healing sneaks up on you, and one day you will realize you feel better. Don't be upset with setbacks, they happen. Overall your good days will outnumber the bad ones. It's a fact of the disease we have. The sooner you realize it the better.
You have to accept all of these, and I know agree better than anyone, it is HARD to do. But when you agree to live along side it, you have a better understanding of it, your life will go on and you can no longer obsess about it.
I've been on Simponi now for 11 months (and it has put me in remission by the way)....it was a miracle drug for me. No more enemas or suppositories for me, only Lialda and that's that! I eat anything, no restrictions...so there is a life out there. This place does get to you at times as well. I found I couldn't hang out here daily because it was too much for me, but that's just my feeling is all....I had to separate.
You will NOT always be sick, and as you improve and medicines improve you will get better.
Either way....there is nothing wrong with obsessing over something that runs your life...but you have to realize this is something that will always, to some degree be there. You have to develop a skill that allows you to live along side it as well.