Have Crohn's and tired of being sick.?!
Question: I was diagnosed with Crohns in oct '05. I have yet to be in remission for longer than a week or so at a time and I am at my wits end. I feel as though I am going crazy. I hurt and am have nasuea 24-7. Which means i have a hard time sleeping. I am going to the bathroom so much it hurts. Yes I have been doing this for a long time but I feel as though I just have no fight left. I am soooo tired. Any advice and people to chat with that are going through the same thing would be great. I have been down for weeks and just can not pick myself up. thanks in advance.
btw yes i know about ccfa, crohns sanity, healingwell and most other sites. And I have been on most of the meds and am now on entocort.
Answers: I was diagnosed with Crohns in oct '05. I have yet to be in remission for longer than a week or so at a time and I am at my wits end. I feel as though I am going crazy. I hurt and am have nasuea 24-7. Which means i have a hard time sleeping. I am going to the bathroom so much it hurts. Yes I have been doing this for a long time but I feel as though I just have no fight left. I am soooo tired. Any advice and people to chat with that are going through the same thing would be great. I have been down for weeks and just can not pick myself up. thanks in advance.
btw yes i know about ccfa, crohns sanity, healingwell and most other sites. And I have been on most of the meds and am now on entocort.
It sounds like it may be time to talk to your doctor about surgery. It's not a cure, but it can at least give you a few years of better quality of life. I was diagnosed with Crohn's about 17 years ago. I've had 3 small bowel resections. I know it sounds intrusive and no one likes the scar, but I feel like it's been worth it every time. My first two surgeries were emergency surgeries because I had complete blockage in my intestine. The last one was planned before it got to that point. I am currently on Humira as a controller and that has helped keep me in remission. I do still have to go to the bathroom a lot, but it's not like those times when you panic because you don't think you can make it. Once in a while, yes, but not usually. And I'm 99 percent pain free. I am careful to stay away from foods that I know may bother me, but there aren't many things I cannot eat. I've also been on all the different meds, but at some point you just can't take it any longer. I hope you have a good gastroenterologist. One that you can be honest with. If not, find one because that's your best source of help.
Hang in there...
My mother had Crohn's and it wasn't just the pain, she said it exhausted her completely. It was the unpredictability that bothered her -- she'd be fine for a few days and then it would hit her out of the blue. I know it's tough but be strong. I'll be praying for you.
I really feel bad for you, and I know how you feel. I have Fibromyalgia, and arthritis in my hands, but not like what you have. I was diagnosed with Fibromyalgia a year ago, and some days are better than others. I try and hang in there and wait and wait for them to decide I can get Social Security Disability. I was turned down 3 times and now have a lawyer. They say it takes time, in the meantime you wait. I am on pills for the pain, pills for the arthritis, pills for blood pressure, pills for high cholesterol, pills for osteoporosis, folic acid because I am taking the arthritis pills, vitamins, etc. I feel like a medicine cabinet. Have to exercise to keep my body limber as part of my home therapy. I know that some of the pills we take can make you sick, and until they can find something that agrees with you, you suffer. I'm convinced doctors just practice on the patient, because they don't know either.
I know it's hard to tell you to hang in there, but praying and going to services on Sunday sure help. We go to the Intrepid Center in San Antonio at Fort Sam Houston. It started because of the wounded warriors and has expanded. Believe me it really does help. Has your doctor prescribed anything to help you sleep or to help you with the nausea?
I do know that it does help to talk to someone and to not keep things bottled up inside of you.
You are doing the right thing by even posting your thoughts on here. I wish there was something else I could say or advise you to do. We are here for you.