Crohn’s Disease is definitely not a textbook disease. While one may experience one set of symptoms and not be able to eat those foods, someone else is quite different. Makes for a very frustrating illness. Even the doctors can’t say for sure.

Would like to know what happened (a year ago) and how you are doing now.

My sister is in a similar situation as you were last year – needing pain med, not necessarily wanting it, but definitely in need of it… without a regular family doctor, it’s hard to get pain medication regularly.

I also made a few appointments in the beginning of my diagnosis just to talk to my family doctor about the use of pain medication and my fear of using it. He was very supportive, explained the difference between dependence and abuse.

I had to make the decision of whether I was going to go through my days relatively pain free, and take the pain medication, or if I would struggle through trying to find other ways to cope and not take the pain medication. I opted for pain medication. I have no regrets and I don’t feel guilty for it. If a time comes when I need to get off of it, my doctor will help me through the process. I don’t abuse it, I don’t take more than I am told is okay.

My sister was diagnosed with colitis at the end of 2009. She doesn’t have insurance and hasn’t had a family doctor for years. None of the doctors will prescribe her pain medicine… It makes me so mad and there is no way I can help her. But she should not have to deal with pain on a daily basis. She’s what I’d consider a health nut (I mean that in a smiley kind of way).. she does yoga, eats well (was vegetarian for a while, then vegan, then went gluten free, etc, etc..). She walks everywhere (she lives in NYC). She’s way healthier than I am and taking pain medication is very low on her list of things to do, but she did reach a point where if they’d have given her some, she’d have happily taken them for relief, if only for a few days.

I get mad at doctors who don’t want to take a chance because of the addiction factor – crohn’s and colitis can both be very painful for some people. To hold out pain medication because of an addiction possibility just isn’t right imo.

I started Remicad in early summer of 2009. I have noticed the past 2 treatments, that my muscles ache so bad that I can’t move my hands, arms, knees or ankles. It doesn’t all happen at once but takes turns. Last week, I couldn’t unbottom my jacket because my hands were so sore. I also work out 2-3 times a week, pilates included and have for years, and I find it incredibly hard to do so now, my muscles shake so bad and I never feel like I am getting stronger in that sense. Not sure what I am going to do about it. We thought Remicade was stopping the fistulas, but I am headed to surgery this Friday for a new one

I would head to your doctor and let them know all the things you are coping with.. if possible, write a list, like a journal, documenting pain and headaches. I’d start with your family doctor if you have one.. if not, get one. With crohn’s disease, it’s for life, you’ll need a good family doctor in your corner to help you cope with crohn’s.