Living with crohn's

I was misdiagnosed in 1987 with Ulceritive Colitis and treated with drugs for Ulceritive Colitis. I didn't have good results with the drugs and had flare-up after flare-up and had to take large doses of prednisone for long periods of time, which causes cataracts. I had cataract surgery last December at the age of 61. I have been on numerous medications, while under the care of a gastrointerologist and ended up in the hospital every year. After a colonoscopy that showed granuloma I was told I definately had Crohn's and was given more meds., even a chemotherapy drug Imuran. it made me so naseated I could barely eat. I have almost died twice and in 1996 I had to have emergency surgery for a perianal abcess. I kept getting laid off from work for no other reason than being sick so much. It became so stressful for me that I went on SS Disability in 2006. Not having the stress of never being sure if I would have a job or not has helped. I don't go to gastrointerologists any more as they were always wanting me to try everything new that came out and it always made me sicker, and the new procedures they wanted to try were for the most part experimental. I have a very good doctor who understands my situation and will listen to me instead of insisting I do exactly as they tell me or find another doctor. I still take meds., but not as many and keep the old stand by(prednisone) ready in case of a bad flare-up. It has changed my life style and sometimes I make plans that I can't keep. Knowing that what I eat could cause me pain, I am careful to only put good things in my body, so I can get the most nutrients out of my choices. I have learned what I can't eat and don't even try. Exercise helps, especially walking and helps you keep a more positive outlook. I have developed crohn's related arthritis, which is another reason to exercise and walk. All in all I guess I am doing pretty good. I do get depressed from time to time and suffer from anxiety attacks due to never knowing when I will have a flare-up. You have to learn to listen to your body. I can tell right away now if I am getting a flare-up and being able to catch it early has been a BIG help. it used to cause me great distress to not be able to do a lot of things I used to do, but I have excepted now that this IS an incurable desease and I have learned to live with it. Excepting it has caused me not to be so frustrated by it. Having the people around you understand it and what you are going through will help a lot. When I was first diagnosed it wasn't heard of much, or at least people didn't talk about it. Being able to talk about it has been a big help too.

I too have Crohn's arthritis. I never knew how much my body could hurt. Some days when I get out of bed I'm stooped with the pain until I move around and loosen up a little. I'm 56 and have thought of SSI, but heard it was really hard to get. I just got out of hospital with sepsis which had nothing to do w/Crohn's and everything to do with the Humira I'm on.

Hi Cathy and welcome I'm so glad you've found your way here. I agree wholeheartedly that just having someone to talk to about this kind of stuff can make a huge difference.

I wish you all the best and look forward to seeing you around the community. We're here for you anytime

Welcome Cathy to the forum, You will find lots of people here to talk to and that understand what you are going through.