My son had his 2nd Remicade infusion last Thursday, 6/30/11. Last night he started bleeding again with diarrhea. Today, eleven trips to the bathroom so far. I cringe when I hear the bathroom door shut.
He was ecstatic after the first infusion because he felt like new person. Within a day he went from going to the bathroom 25 times a day with blood to once or twice. Stools were never quite solid but much firmer and no diarrhea. Three days after the second infusion and he is not feeling well again.
What his 14 yr mind didn't digest was, that at the same time of his first infusion, the Dr. also pumped up the Prednisone to 45 mg a day to control the bleeding. Now that we are trying to wean him off the Pred, and we are down to 30 mg per day, he is starting to bleed again. He told me last night that he feels that he is going to be in the 30% that don't respond to Remicade. (his Dr. told him only 67% reponsd) He his so down.
I tried to explain that it could take multiple infusions before we see any response. All he sees is that he is gaining weight, bloated, breaking out everywhere and afraid to eat because he is afraid he will get cramps. When he flares, he spends his entire day in bed. He says that when he lies down he doesn't get cramps, when he gets up and moves around, he runs to the bathroom. This is no way for a 14 yr to live. I hate this disease.
His Dr wants to start him on Rowasa enemas or Canassa suppositories tomorrow. He said that we really need to get him off the Prednisone and feels that this may be a short term answer until he starts responding to the Remicade. He has been on Pred. since February and that's too long.
Sorry to vent, but I feel that I have friends here, people that have experienced what we are just now going through. If anyone can let me know if they have tried Rowasa or Canassa, I would appreciate it. My next big challenge will be to get a 14 yr old male teen, who is already extremely embarassed by this disease, to try these new meds.
Thanks for listening.
14 yr old male, Diagnosed February 2011. Recent Flare currently under control
Started Remicade 6/15/11- next infusion 6/30/11
Asacol 800HD- 2 tabs 3x day - while the samples last
Prednisone wearing - down to 35 mg
Poly-Iron 2 xday
Pepcid 20 mg, 2 x day