I was first diagnosed with Crohn's back in 1982. Although I had been having the symptoms for years, none of the doctors back then knew what Crohn's was. I ended up in a hospital emergency room, malnourished, with a high fever, unable to keep even water down, weighing just 83 pounds. Luckily, one of the young doctors on duty that night correctly diagnosed me and was able to save my life. I was in the hospital for two and a half weeks, with TPN and lots and lots of drugs. I took prednisone for almost a year (hated it!) and responded well to sulfa.
After a year, I felt pretty much back to normal, and stayed on sulfa for years, allowing me to stay in remission. I learned what to eat, what not to eat, and knew what symptoms to watch for. I went in for annual colonoscopies, and always took a hand-held tape recorder along to tape my conversation with the doctor afterwards because otherwise I'd have no clear memory of what he said. I also learned that I could make appointments with two doctors at once so they could talk to each other, and I could participate in the discussion.
About five years ago, I developed a bad rash, all over my body, and the doctors finally figured out that I had developed an allergy to sulfa. I stopped it and the rash went away. I tried Pentasa and Asacol, and developed allergies to both of them after a few months. So I stopped everything and was fine for about five years. No drugs, no Crohn's.
A recent annual colonoscopy showed that Crohn's was active again although I was still pretty much symptom-free. My doctor prescribed Azathioprine, and that seems to be working fine, with no nasty side-effects. About six months ago I also developed really severe constipation, which I never knew could be caused by Crohn's because I have always had the opposite symptom. I'm trying to get that under control, so I can return to full remission.
My advice to any of you who are recently diagnosed with Crohn's is to find the best doctor you can, ideally someone you like and trust. I was so lucky to find the doctor I did in the emergency room that night, and I've learned a lot from him about how to advocate for myself as a patient. Whenever I had some new symptom, he would always ask: "What do YOU think it is?" and when he offered solutions, he'd offer three (one was always "do nothing"), and let me choose. Unfortunately, he left the practice about three years ago, and I chose another gastroenterologist recommended by my gp, and I never liked her -- she just didn't listen and she always insisted I had ulcerative colitis instead of Crohn's, so I could have a colestomy if things flared up again. When she prescribed Visicol for a prep for my colonoscopy last January (because they don't use Go-lightly any more and I'm allergic to sulfa, which was a key ingredient of the alternative), it made me so violently ill that I was unable to have the colonoscopy the next day. That was the last straw, so I switched doctors (I called my original gastro doc for a recommendation), and am much happier.
At the time I was diagnosed back in 1982, I had just met Madeleine L'Engle, author of A Wrinkle in Time, and she told me she also had Crohn's and had been in remission for 20 years. She gave me hope at a time when I needed it. I also met another woman around my age with Crohn's that first year, and she introduced me to some great foods I could eat that weren't white or bland -- corn bread! Nepali food! -- and that helped get me through; otherwise I would have been living on a diet of cottage cheese, white chicken, and bananas. I think it's important for Crohnies to hear from people who are in remission and who are symptom-free, or who have active Crohn's but have found ways to cope with day-to-day life, and who are able to maintain a sense of humor. It's hard to stay optimistic when you are first hit with the bombshell, but knowing that it is possible to leas a happy and productive life really helps you make it through the bad times.
After a year, I felt pretty much back to normal, and stayed on sulfa for years, allowing me to stay in remission. I learned what to eat, what not to eat, and knew what symptoms to watch for. I went in for annual colonoscopies, and always took a hand-held tape recorder along to tape my conversation with the doctor afterwards because otherwise I'd have no clear memory of what he said. I also learned that I could make appointments with two doctors at once so they could talk to each other, and I could participate in the discussion.
About five years ago, I developed a bad rash, all over my body, and the doctors finally figured out that I had developed an allergy to sulfa. I stopped it and the rash went away. I tried Pentasa and Asacol, and developed allergies to both of them after a few months. So I stopped everything and was fine for about five years. No drugs, no Crohn's.
A recent annual colonoscopy showed that Crohn's was active again although I was still pretty much symptom-free. My doctor prescribed Azathioprine, and that seems to be working fine, with no nasty side-effects. About six months ago I also developed really severe constipation, which I never knew could be caused by Crohn's because I have always had the opposite symptom. I'm trying to get that under control, so I can return to full remission.
My advice to any of you who are recently diagnosed with Crohn's is to find the best doctor you can, ideally someone you like and trust. I was so lucky to find the doctor I did in the emergency room that night, and I've learned a lot from him about how to advocate for myself as a patient. Whenever I had some new symptom, he would always ask: "What do YOU think it is?" and when he offered solutions, he'd offer three (one was always "do nothing"), and let me choose. Unfortunately, he left the practice about three years ago, and I chose another gastroenterologist recommended by my gp, and I never liked her -- she just didn't listen and she always insisted I had ulcerative colitis instead of Crohn's, so I could have a colestomy if things flared up again. When she prescribed Visicol for a prep for my colonoscopy last January (because they don't use Go-lightly any more and I'm allergic to sulfa, which was a key ingredient of the alternative), it made me so violently ill that I was unable to have the colonoscopy the next day. That was the last straw, so I switched doctors (I called my original gastro doc for a recommendation), and am much happier.
At the time I was diagnosed back in 1982, I had just met Madeleine L'Engle, author of A Wrinkle in Time, and she told me she also had Crohn's and had been in remission for 20 years. She gave me hope at a time when I needed it. I also met another woman around my age with Crohn's that first year, and she introduced me to some great foods I could eat that weren't white or bland -- corn bread! Nepali food! -- and that helped get me through; otherwise I would have been living on a diet of cottage cheese, white chicken, and bananas. I think it's important for Crohnies to hear from people who are in remission and who are symptom-free, or who have active Crohn's but have found ways to cope with day-to-day life, and who are able to maintain a sense of humor. It's hard to stay optimistic when you are first hit with the bombshell, but knowing that it is possible to leas a happy and productive life really helps you make it through the bad times.
