Can anyone out there tell me their experience with the first diagnosis and how long it took for the medicine to "kick in?"
Hi John, i"m so sorry for what you've been going through...but believe me, you've come to the right place. We can all relate! My first diagnosis came with what I thought was the "stomach flu". But after several days of bloody diarrhea, and being bed ridden with body aches, fatigue, and some minor stomach cramps, I began getting THE WORST stomach cramping I've ever had. It was to the point I couldn't even move or take a sip of water without cramping so bad it would bend me over in pain. Finally, my team leader at work saw me when I came into work, and sent me over to our urgent care center immediately. Then it began, the many tests....blood, stool, flex sigs, and a colonoscopy with biopsy. That first day, they ran a sed rate, and while normal is somewhere under 20, mine was like over 70. So, my doc put me on prednisone. My symptoms began to improve within 24 hours. Prednisone has always worked like that for me (at least until my last flare)....it was my best friend, and my worst enemy all in one. I loved it because it worked so well, and so fast (and gave me energy). But hated it because of all the adverse side effects, the night sweats, insomnia, bone pain, moon face, extreme hunger, etc etc. Anyways, my biopsys showed left sided Ulcerative colitis. Then, came the chore of finding a maintenance med for my colitis. I couldn't be on prednisone indefinately, we use it only for acute flares. I tried so many maintenance meds...sulfasalazine, asacol, imuran, and 6-mp. All of them gave me adverse side effects, or didn't help my colitis at all, except for the 6mp...so I was on that for awhile, then when I began flaring again, had to add something, so he added pentasa. I was doing well on it for awhile, until Oct of this year. I began a flare, and my usual prednisone dose did not even touch it (which was a first for me), so we upped the dose higher , and still I cont to worsen. So he changed to a stronger steroid called decadron, and still cont to worsen. Finally ended up hospitalized on IV steroids, was doing ok, but then back slid once again, so then we started remicade. And I began to improve. Turns out, that my disease had progressed which is why the prednisone wasn't working I guess. Anyways, sometimes trying to find your best meds or combination of meds is a total trial and error procedure. What works well for one person, will not always work for the other. All I can say is if you cont to have symptoms, and seem to worsen, don't let it go. Keep bugging your doc!! Daily if you have to. And definately educate yourself on meds, treatments, and ulcerative colitis, read everything you can get your hands on. You can never have too much knowledge. It only empowers you!! Good luck on getting better. My fingers are crossed for ya!!
40 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).
Diagnosed with L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05.
Remicade infusions ~ Nov. 2007, 6-MP 100mg daily, Pentasa 500mg twice a day, prednisone taper 20mg daily, Nexium 40mg twice a day, Lantus insulin 45 units daily, Novolog 10 units with sliding scale at meals, Amaryl 2mg daily, multi-vitamin daily, and Calcium daily.