Hi there! Veteran UC'er here....10 years ago this year!
1st: go easy on yourself. I blamed myself for this - was it all the bad food, was it b/c I smoked, what about
all the anitbiotics I was taking for recurring UTI's, blah, blah, blah. It took many years to realized "it is what it is" and I needed to learn to cope with it b/c the more I had internal battles with myself, the worse I made my condition.
2nd: research, research, research. When I was diagnosed, the info on the net was awful. Gay man's disease, etc. I FREAKED myself out and was hysterical! Now, there are some great resources on the net, such as this forum, which didn't exist back then. I talked to my doctor, read books on UC, etc. I researched and talked to professionals that dealt with homeopathic remedies, sought out 2nd, 3rd and 4th opinions from different GI docs. I empowered myself which enabled me to question and ask about
alternative treatments when I would see my GI doc.
3rd: It's okay to question authority (your doctor), but if your doctor doesn't listen to you, find a new one. Mine is great. I sought out several doctors and ultimately stayed with the one that diagnosed me. He's was the most
open minded GI and truly listened and didn't discredit some of the odd balls things that I've discovered over the course of my disease, such as protein seems to make me flare when I eat too much of it over a course of several weeks, my back goes out right before a flare or that with chiroproatic care my flare ups are much more manageable when I get one.
4th: Realize that what may work for you, may not work for someone else and vice versa. And if it works for you and someone says, "hog wash.", listen to yourself, learn from your experiences and know in your heart that you are doing what's best for you. Experiment with different things....if you don't try it, you'll never know if it will work for you (i.e. probiotics, honey, chiropractic care, supplements, etc). When you find a regimine that works, stick with it and if you don't, keep a journal of what does so you have something to fall back on when you begin to flare again.
5th: DO NOT stop your meds no matter how GREAT you feel WITHOUT speaking to your doctor first.
6th: Think positive, exercise, and learn to READ your body. Keep a journal - how you are feeling, write down aches and pains, when you flare up, what you eat, etc. Getting this down will come in time. For me, I can tell about
1 to 2 weeks before a flare hits. My back goes out, my BM's change ever so slightly, I get a skin rash in the crease of my elbows and my hips hurt. NEVER NEVER fails for me. When I listen (and trust me, sometimes I don't even 10 years later), I start my rowasa immediately and make sure I don't miss any Asacol. I go easy on my food and usually can knock out a flare up in a couple weeks. When I don't listen (which was this past November), it takes a lot longer to get under control - going on a 2 month flare up, and it's manifesting to other parts of my body (eyes).
7th: Coping comes in time also, and learning to "deal" with UC comes with each passing flare up. Knowledge is power and is a key element in coping with this disease. The more you know about
your body, the disease and the meds, the better equiped you are to deal wiht the ups and downs.
Hope that helps someone. Take care all!
dx Pancolitis, mild, w/more activity on left side & IBS
12 Asacol a day; 1 Rowasa at night during flare/1 a week during remission; Nexium; Probiotic; Multi-Vitamin; Flax Seed Oil
UC manifesting to other organs: joints, eyes (Iritis) & skin (Erythema Nodusom)
Controlling w/MEDS & DIET (eliminating animal protein, white flour, sugar, dairy, eggs, & nightshade veggies)
Current Status: 12/22/07 Ending 2 month flare & heading into remission - no blood, D or other symptoms since 12/22/07 Keeping fingers crossed!