So Sorry, I know your pain
Hi Tammy, welcome to the group. I've only been here for a couple of months and have only written two post, but this seems like a great place for support. Like you, I have had a couple of crappy drs. but finally found one about 45mins from where I live. I've been with him 16yrs or more and he actually sits there and hears me out on any questions I may have or any ideas I have about my treatment. That is one inpearative thing you must do-be involved in your treatment. If the dr. won't let you then there's a clue he a sucky dr. I do personally keep a list on my Word Documents that list my meds by who prescribes them and what they are for, the dose, how many times I take it, and when I started the drug. Then the next sheet is my allergies/ bad reactions to meds; which I list the med and the reaction I had to it, and last is my surgeries pages. For them I list the date, the surgery, little details about the surgery, the surgeon, and the hospital. I know it seems like a lot of work, but once you have it on your computer you can easily change anything, and easily print it out for every dr. you go to, not just your GI dr. so they are all informed about what you take and don't put you on something that will react badly with what you are already taking.
Also Like it was said before prednisone sucks monkey butt, but it does work great for Crohn's flare-ups. It usually makes me depressed, moody to the point I don't wanna be around anyone, and they sure don't wanna be around me, it also makes me swell up and gain weight like there's no tomorrow, and last but not least makes me so hungry constantly even when I am full, I still feel hungry. It sucks, luckly I'm not on that anymore, but only because they had me on it so lone it caused me to have osteopenia. Ask about Entacort (sp?) it's a steriod just usually without most of the side effects of prednisone.
Also if Remicade doesn't help you, I been on Humeria for yrs now, and have had very few flare-ups since. Pentasa alone isn't going to work just by itself. There is also a drug called Asacol, and another I can't live with out is Immuran. I got off of a lot of my Crohn's drugs with the help of Humira, Immuran, an ant-acid drug, and a nausea med. I've been super lucky about that. I believe a true symtom of Crohn's Disease is depression. I've been battling with that for yrs., but one you get on all the right meds (which may take some time due to trial and error) you will have good days again.
I let Crohn's beat me for at least 3yrs, so I do understand what you're going through with that, but once they changed some of my meds around I put my foot down and said no more! I don't live a normal life, I don't understand what a normal life is when you're a Crohn's patient, but there are good days ahead, that I promise you. Just don't let it take hope from you. I am currently diable by law due to my illnesses and it sucks BIG time, I loved working. It wasn't really work to me, but more so a hobby. Anyway I am taking classes, a few at a time at a community college and I just graduated with my associates this past May. Now I am still taking some classes at the community college, but they are pre-requisits for Radiology tech. I have hope of working again. Hope is sometimes the only thing that's getting you by, but at least it's something. I still have bad days, I still have to go to the emergency room for acute pain that just won't go away, I still get strictures, but I've got good drs. getting me through it, and I still have hope. I know it's hard as hell, but please don't give up. Remember the good things you still have in your life. Take each day one at a time, that's all you can do. Also if you're in a lot of pain all the time then talk to your dr. about seeing a pain managment specialist. That helps too, lol.
I will quit my ramblings, but again don't give up, don't let hope slip away, there are better days ahead (though it may not seem like it now, there is). Please take care Tammy.
