To clarify my last post - a subset of people, myself included, cannot tolerate any 5ASA drugs, with their colitis worsening as a reaction to the drug. My reaction to , and I am just speculating, the enteric coating sprayed onto the lecithin, is not anything as severe as what I experienced with several 5asa drugs, but nonetheless did result in a big bump up in pain and some cramping. I am going to ask klinipharm if there is any alternative coating but I think I know the answer will be no.... As far as the enema protocol- I need to go check the link to an older thread that is either on this thread or the other Enteric PC thread' about
a week ago. I'm letting that idea keep my hopes up for now even though I have pancolitis- my thought is that since UC starts in the rectum then perhaps it can still help.
Officially I have UC, although I have been told by my CR surgeon consultant that as many as 7 percent of people with 'confirmed' UC pathology turn out to have crohns post colectemy, perhaps years later (one reason I struggle, perhaps foolishly, got keep 'the colon beyond reason maybe) . Other meds currently include humira plus prednisone around 10 mg (I seen to flare at 5, just had to bump back up) and human 'whipworm (no luck with it although I had some limited success with pig 'whipworm eggs earlier but I simply cannot afford TSO , unless ut actually put me' and kept me' in remission, which it didn't.
"In order to save the
organ, we had to
remove it" --