I was diagnosed in 1981. I have been living with this for a long time. Tried everything. As many of you know there are times when NOTHING works, and you are all pain and bathroom runs. I have been on long term medrol 90mg a day during flares. I have been to the point that if there was no turn around they would schedule surgery! Each time I responded when coedine was added. Immodioum does not work, nor does lomotil. As far as The statement "As James wrote, it's far better to actually treat the UC and get it under control. It's taken me 10 years to figure out that most drugs don't work for me, so I'm willing to take the risk with the Codeine, but I don't recommend it." Could not agree more, but I have been there tried that, the trouble is that IS EASIER SAID THAN DONE. After 27 years ...believe me I have tried getting it under control more times than I can count. When you fear eating food beacuse you know the results, then by accident find that codeine makes it bearable and makes you better, it is hard to say no thank you. At one point I went from gym rat at 5'10' 185 pounds benching 275, to just under 140 lbs unable to press the bar without any weight on it, in a couple of months. Presently I am ONLY on 3 asacols twice a day, and feeling good. BUT I wish the Dr. had told me how well tylenol 4 works when there is so much pain and so many bathroom runs. It was only after about
15 yrs I found that out, , and was given tylenol 4 for another trouble and my colitis symptoms went away. I brought this up to the Gastro, and he said "oh yeah, because..." WOW! I was furious he never brought it up earlier with all I went thru. So my post was to advise others who might have been in the same boat, and to see if anyone else had the same results.
One thing that works best is the asacol, but at a high price. I am of the "rare" as the drug company calls it, that go neutropenic, that means yeah...it helps my UC, but kills my WBC count specificaly the neutrophils, they fight infection....soooo I am always feeling like I am getting sick. The answer... put me on nuepogenia, that in itself makes me feel like I have the flue, and gives me SEVER bone pain, but at least I don't get sick, just feel sick as in a bad flue....such is life. Ahhh but then they give me tylenol 4 for the severe bone pain, it helps the colitis SO much, I can stop taking asacol. Hey no asacol my wbc goes up, no need for neupogen...yeah no more flue like symptoms, no mor severe bone pain, no more codeine, wooooo wait , no mor codeine, UC symptom start back, , gotta go back on asacol, now wbc getting low...come on everybody sing with me...you know the verse ....where is the neupogen.... one more TIME!!!! alll together now! Oy VE!
Asacol x2 two to three times aday
Probiotics once aday
neupogen twice aweek (causes bone pain and flu like symt's)
Was using tyl4 for bone pain. dr. who started me said stop...so I stopped...but it was also helping the colitis for some unknown reason
Post Edited (johnj) : 12/12/2007 8:25:32 PM (GMT-7)