New :) And What is "NORMAL"?

Hey! I was diagnosed a few months ago- ended up in the hospital for 9 days with the worst of the symptoms.

I of course went through the steroid hell, and I am supposed to be on mesalamine twice a day, but I am a horrible medicine taker. I have ADHD and my brain is a scattered mess and I forget to take it.

Here is my question, I really don't know what normal is. I have obviously had this for as long as I can remember- I always thought my um..habits...were normal or I just had a sensitive stomach. I am still getting intense urgency when I need to go- but it's pretty routine now, so I don't know if that urgency is normal.

So, if I am awful at taking my pills, and this is what "normal" is, then I'm not hurting myself by NOT taking them right? I know this is a doctor question maybe, but I want personal experience opinions. The doctors tell me the standard stuff, nothing that feels particular to ME and MY case.

Also, I take adderall for adhd. I was off it for the last year and when I went off of it is when my stomach issues started flaring back up again. I only feel "normal" when I am on it. Ive read a few people having the same thing happening, and I dont know why that happens, increased water intake, or some sort of body reaction to the amphetamine salts. Curious if anyone else ever had that happen.

Anyway, how religious are you all about taking your meds, and how do I know if I am normal, or getting a flare up?

Thank you for responding :)

Yeah, no blood and bm's are soft but not loose for the most part. Its just the urgency, every single day, around 10am, spot on. So I probably will just have to discipline myself like mad and get my routine back with the mesalamine. I do NOT want to go through the hospital again..

That was HELL. They did not believe me about the pain I was in until I basically unhooked myself from their stuff and ran to the restroom and passed nothing but straight blood. I walked back out and told the nurse to go look and said now do you #$%^&* believe that I need more pain meds??? They gave me dilaudid for the pain, but it wasnt TOUCHING it, and I asked for something more and they not only refused, but couldnt get in touch with my "attending" doc who was at home watching the darn superbowl.

I was screaming in pain, watching doctors walking around everywhere and no one would get me out of pain because they were not my attending doc and he was being a total prick over the phone about giving me more pain meds. On top of that, there was ONE bathroom in the emergency room and I had to run to it every 10 minutes. No one bothered to set up a bedside thing for me, and at one point someone else was in the bathroom and it hit me and I stood in the er screaming and crying trying not to go all over the floor with my backless gown giving the world a wonderful view Im sure. It was humiliating, and I never want to go through any of that again.

I use my cell phone to remind me to take my medications. I set it to go off at 7:30 AM, 3:30 pm, and 10:30 pm. My pills are organized into one of those daily pill things that I reload and put in my purse every night after I take my evening dose. Using this system, I have never missed a dose.

Until I started seeing my new dr and changed my meds, "normal" for me was a couple of soft but formed bowel movements a day, no true urgency (though waiting a long time wasn't really possible), no bleeding. Now, "normal" seems to be actually... normal- 1 formed and firm BM every day, often all in one piece, and I could probably wait over an hour from the time the urge starts before finding a bathroom. Total remission is possible and it should be your goal. Healing takes time so don't expect an overnight miracle but if you aren't making progress, call your dr and see what they suggest.

Ritalin and Adderall increase the concentration of dopamine in your synapses. Dopamine is an important neurotransmitter in your brain as well as in the enteric nervous system. It decreases gut motility which would reduce diarrhea. Wellbutrin, an anti-depressant/smoking cessation/ADHD/obesity medication, also increases dopamine levels and can have similar effects. Wellbutrin may also decrease TNF-alpha levels (inflammatory mediator often elevated in UC that is targeted by UC meds like Remicade) which can positively affect UC. The only negative is that these meds can mask the severity of your disease so be sure that your GI knows you are taking them.