I truly understand and sympathize completely. I have lived with this disease for 50 years...yes, you read correctly. I got this (diagnosed as IBD) when I was in my twenties and am now a grandmother in my seventies. I have seen so many doctors since then (including Dr. Crohn) that I have lost count. I won't go into the tests and experiences I've been subjected to as it is not important. What I want to tell you is this. I have lived a full and great life...brought up two sons...have grandchildren that I am in constant touch with....play duplicate bridge as a daily hobby and have traveled extensively. In other words, there generally are remissions that you can gratefully take advantage of. Your life will be different in that you will always be aware of your stomach and you should be open about it. That way you're not embarrassed if you must say no to certain things.....dates, dinners out,etc. As a matter of fact most people don't care as long as it's not them. I find that I must stick to a very bland diet such as boiled chicken, applesauce and a baked potato. There is one very important thing....I cannot drink any water but distilled. That took me years to figure out. That applies to water in any form such as soups, lemonade, orangeade, tea, coffee, etc. I also find that any antobiotic gets me very sick. I can't take any of the uc drugs, including remicade infusions. I was violently ill from the last infusion and Apriso put me in the hospital for a week with a colon that "looked like raw hamburger meat" according to the Dr. It's a miserable disease but we've got it. I'm so, so sorry you feel so awful but hopefully, like most of us, you'll begin to feel better. Right now I'm coming off prednisone. I was hospitalized and started at 80 mg amd am now down to 10. The truth?....I still feel pretty rotten but I don't want to stay in bed so I'm up and out. I've learned that any bathroom will do.
Hang in there and if I can answer any questions for you I'll be happy to.
Thanks for the reply, that is pretty remarkable 50 years and not having operation. I have an aunt who has had it for 30 years but luckily not had any flare ups as such, in the early days first couple of years a lot of flares but now she doesn't even take any meds. So from what I gather it's completely person based on how aggressive the disease is. I don't mind sticking to a diet, infact as I do bodybuilding my diets quite bland anyway but v healthy, lots of chicken and rice and a lot of fish.
Thats strange about
the water though, problem is there is so many variants of what people say to not eat and what to eat and drink etc that im so confused.
Prednisone wrecked my hormones, I have had low test for a year i.e. shut down, endoencrologist has tried several things but no prevail, I need to get a fertility test but let's be realistic whats the chances of being fertile. To add to that my bones are shot im like an old man.