Dearest new fellow Crohnie warrior,
I am going to give you a quick ten minute crash course on everything I wish a fellow Crohnie had told me when I was brand spankin' new to the CD game. In point form. Because who doesn't love point form when reading something quick?
• Don't underestimate what you were just told. Crohn's Disease can become very serious, very fast.
• Listen to your doctors. If you are very sick an this is why you have been lead to this diagnosis then they are just trying to keep you alive at this point.
• For goodness sake, take your meds.
• And take them when and how prescribed.
• Prednisone, while making you feel like Spider-Man AND The Hulk simultaneously and giving you emotions and cravings like a pregnant woman, will work wonders on your gastrointestinal symptoms.
• Coming down off of prednisone is horrible. The high fades; the symptoms return. You will most likely be put on a longer term drug by then. I promise it will suck in comparison.
• At this point you will hate your doctor.
• If/when this med doesn't work you may be put onto a biological drug like Remicade. Do it! It will change your life.
• Remicade will be a love/hate relationship.
• Go to the ER if you feel something is wrong. I went three times in a week and a half even after them insisting that I was fine. WRONG! I had an infection that would have been fatal if I didn't keep up on it.
• If it's not an emergency don't be afraid to "bug" or "annoy" your doctor. It's their job.
• Crohn's can happen anywhere from your gums to your bum. Other symptoms are likely. Tell your doc, it's probably related and fixable.
• Buy an iPod. Doctors offices are boring. And you're about to be visiting a lot of them. Or take up an easily portable hobby.
• You can choose to let CD define you, or you can say Hey! I have it. I have to deal with it everyday but it's just one aspect of me.
• Read "The Spoon Theory" ( http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ )
• Laugh. I promise this will do you good. I double pinky promise! :)
This will get you started. But I'll keep you updated as I experience them as well. Stay tuned!
:D
P.S. Oh ya! When your mouth swells up and your gums are inflamed eat freezies!
