Hi DeDe - my husband has Crohn's disease, as did his mother. It is very similar to IBS, but please know that it is NOT the same. Diet has very, very little to do with flare-ups. Most people commonly believe that since it has the same symptoms, then it can be managed by diet. Crohn's is NOT a DIGESTIVE disorder, it is an IMMUNE disorder - 100% different. The only thing that diet really impacts is the nutrients. The most common problem with Crohn's is becoming malnutritioned because your body does not keep any nutrients, so you do need to make sure you eat a balanced diet & take vitamins, just to make sure your body does retain some nutrients. There are hundreds of books about controlling with diet, but really at the end of the day, it won't matter - the diets are about packing in nutrients - which is very important. But if you're in a flare-up, no diet in the world will change that. (But do feel free to give it a shot - don't underestimate the emotional impact of feeling like you can do something about it.)
Your future quality of life may not be affected at all. The way I can best describe Crohn's is it is similar to Multiple Sclerosis in degrees of severity - some people have it and are never bothered by it at all, some people have it and have a rough time, require lots of meds, maybe surgery, and then others have it that require major surgeries and complications.
Not sure how much you've studied up on it yet - but Crohn's is essentially an immune disorder that affects the bowels/colon. Basically, it believes that anythign that enters your system is a foreign object and it does everything in its power to get it out immediately. There is no food composition that changes this - it is every food, every time. Carrots, meat, crackers, soup, cookies, potatoes, whatever. Doesn't matter. It ebbs and flows throughout your life in what's called "flare-ups". When the disease flares up, the "foreign object" thinking kicks in and you will find yourself in the bathroom all day, your bones & joints can hurt, you will be fatigued, you may have vision problems. A flare-up can last a day, a week, a month, a year....and then you can have a "remission", where you experience no symptoms - same time frame - week, month, year. Medication can help during flare-up times, but you need to be prepared. Keep a change of clothes in your car, as an accident may be unavoidable. My husband when he's in a flare-up will limit activities that take him far from bathrooms, and he drinks Ensure to keep nutrients up. One of the most important things to remember is as it is an immune disorder, you now have a very low immune defense system. You will get every cold, bug, and virus that you remotely come into contact with. Double up on your hand washing and disinfecting to lessen this impact, as it's unavoidable.
My husband's mother actually died from Crohn's disease, so when he was diagnosed, we became the most educated people you can imagine about it so we'd know what we're in for. It is NOT common at all to die from Crohn's, please don't think that. His mom just had a severe case for many years and it wore her down. My husband's is not as severe, though we do know we'll face several surgeries in the near future. We read a really good book - it's an introspect - "Learning Sickness" which is one man's journal, essentially, through one year with Crohn's. I highly recommend it. It's a good book to help deal with the emotional aspect of being diagnosed.
I hope I have given you at least some information that makes you feel better. Feel free to PM me & we can talk more. Good luck - S.
