I'm sorry about your diagnosis but glad to know you're doing reasonable well.
I currently have Crohn's Colitis, too, meaning my disease (for now) is only located in my large intestine. I'm aware it will (probably) eventually spread to my small intestine so for now I consider myself lucky. I've learned from being on this board over the years that those who have Crohn's where the small intestine is affected are more likely to have more serious symptoms and problems. So when I'm sick, I ALWAYS focus on those who I know have symptoms MUCH worse than me.
So far I've dealt with 2 huge flares. The past 2 years have been pretty much non-stop exhaustion from the flares. My flare last year lasted 8 months. I wasn't out of that flare for long before another 5-month long flare started this year.
Colonoscopies: that's how my GI determines the progression of my Crohn's. I've had 2 so far: one in 2004 and one in 2007. There was no change between the two which was GOOD news.
Meds: I truly believe every Crohn's patient should ALWAYS be on a maintenance drug - for the rest of their life. That's the Lialda for you. However, there are people on this board who think differently than I do about this issue. I'm sure some will share their stories so you can decide what's best for you on that subject. I just know with ME, I started feeling a lot better after I first started taking my maintenance drug - so I decided I was HEALED and started tapering off the drug. Next thing I know 6 months later, I'm getting sick again.
Of course, you can go into a flare even when you've been very dilligent in taking your meds. Just know that sometimes you will flare for absolutely NO reason. It'll make you CRAZY. You'll wonder what you did wrong.
You'll question yourself (what did I eat?). It's MADDENING. I get through those times by just reminding myself that is the NATURE of this disease. Sometimes there just isn't any reasoning for the flares.
When I flare, I have a bunch of different symptoms:
Diarrhea (loose BM's)
Vomication (vomiting & pooping at the same time)
When I start waking up in the middle of the night with my bowels, I know things are starting to get really bad. My ankles will swell TERRIBLY - to the point I can't walk or drive for about 2 weeks. My Iron levels get low so I become anemic which makes me weak & extremely fatigued. Weight loss is always an issue for me. During my flare last year, I dropped 30lbs in less than 2 months. All of that coupled with malnutrition from malabsorption causes things like hair loss, dry skin, bone loss and overall weakness for me.
Well, now that I've brightened your day...!!!
You'll find this board to be a God-send as a newbie. You'll find yourself coming here for answers and support and just a place to GRIPE! I would have been lost without this board if it hadn't been around when I was first diagnosed. So even though I hate I need to say it, WELCOME to the Crohn's forum.
Diagnosed in October, 2004 at age 32
(misdiagnosed with IBS in 2002)
Current Rx's: Colazal (generic), Omeprazole (PRN), Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Cranberry pills
Secondary conditions: swelling ankles, extreme fatigue, mouth ulcers, joint pain
Previous/occasional Rx's: Prednisone, Flagyl, Levaquin, Xifaxan, Carafate
4/7/09: Gall bladder removal laproscopic surgery (gall stones)