Hi A., I got diagnosed with Crohn's disease about 8 years ago. I grew up in Santa Monica, but am now living in Berlin Germany. So I can't tell you about any great doctors here or anything, but I can help you with the rest. It's a hard blow to hear you have it. But don't worry, you can live with it, you just have to learn how. Think of it like asthma or exsema. It's basically the same except in your bowels instead of your lungs or your skin. People with asthma have to stay away from fields of blooming grass or dusty cellars, people with Crohn's have to stay away from other things. The tricky part about Crohn's is that it differs from patient to patient, what causes an outbreak. For some people it is dairy or coffee or some food, for others it is stress or anger. For me it is a combination of both, I have had it for different reasons at different times. Most diets didn't really seem to help, but eventually I did notice that I shouldn't drink beer, or eat things that give you gas like broccoli, and beans. You should never take oral antibiotics, no matter what they say, get it intravenous if you have to. (It actually says on the warning part of most antibiotcs, not to give it to people who have IBD or Crohn's, and most GPs will try to insist in order to fight off the infection.) But anyway, I am getting sidetracked with details. The key is prevention, because as I'm sure you know now, once you get an outbreak, the medication used to treat it is mostly steroids, which nobody should really take too much. I ended up so depressed from the side effects of cortisone (hair all over my face and chest, muscles, puffy face, indigestion, you name it, I reacted badly) my doctor switched me to this new stuff called remicade after a couple years of no success with any of the steroids. But remicade isn't really the miracle cure either. Finally after all this time, I had to have some of my colon removed, and though it was a hard year, I am doing much much better now. So I've been through just about everything there is, and I have another girlfriend with it too. I want to give you my e-mail address so we can communicate outside of this public place. ____@____.com Please let me know if there is anything I can do to help,or if you just want to tell your story, or ask about a treatment, or anything at all. I'm sure you feel devastated right now, but it will get better and you'll be fine. And once you're back in remission, all your girlfriends will be jealous that you lose weight so easliy! (Just kidding, but you have to look on the bright side...) I even got pregnant and now have a brilliant healthy 4 year old girl. You really can still do everything, you just have to take good care of yourself. Oh, also, check on google for Crohn's support groups in your neighborhood. I know there's an American Crohn's foundation but I forget what it's called. They are a great resource too for advice on everything from toilet paper to vacations to recipes. The German Crohn's foundation even got me a skeleton key to all the public restrooms in Europe. You might be eligable for lots of different things like disablity and handicapped ID and stuff, but I don't want to overwhelm you. You should take advantage of whatever you can.
Well, sorry for rambling on. I hope I helped you a little and I really hope you feel better soon. It is a real challenge and deserves to be addressed as a new lifestyle. I also went to therapy to help deal with it. I got depressed. But you're not alone, you just have to start looking for other people to help you out. And get a book or two about how the disease works to help you live with it. It is less scary if you understand it. And don't forget how hard this will be for your partner, you will both need a lot of support. Take care. Love, S.
