Well the good news is I have relearnt how to start a new thread! haha. Bad news, I had my appointment with the new crohn's specialist today about starting on new drug trials. Basically there are lots of new drugs in the pipeline but none of them will be suitable for me because I keep getting these damned intestinal abscesses and it is too dangerous to suppress my immune system more with the biologics as its only a matter of time before they are unable to control the sepsis. So I have to stay in hospital (3rd visit this year,,13 weeks so far) until they can get this latest abscess gone then hopefully I can stay well enough to come down to lower levels of hydrocortisone so that they can do another bowel resection and put in another temporary stoma which I will need for a year or two. I had REALLY been hoping a new drug would bring the crohn's under control and prevent the abscesses but its just not possible for me now. On the bright side, once we get the stoma in place it will allow my bowel to heal so I won't keep getting abscesses and won't have to live part time at he hospital! Then hopefully I will be able to be started on one of the new drugs to keep the crohn's under control so I don't get to this point again. My last stoma was a nightmare, 3 litres liquid a day output so I am expecting the same and the problems that go with that. Liquid acid seeping under the plate, bags falling off in public places, getting up 2-3 times at night to empty the bag. #$%^ is all I can say.
However I must admit that I'm glad a decision has been made and there is some end to this even though its not the one I want. At least we are working towards a solution rather than just treating each flare up. And It will be very nice to have ankles and legs again rather than tree trunks from all the hydrocortisone! Sorry so long but had to let it out.:sign0085::mad2::thumbdown::eek2::stinks:
However I must admit that I'm glad a decision has been made and there is some end to this even though its not the one I want. At least we are working towards a solution rather than just treating each flare up. And It will be very nice to have ankles and legs again rather than tree trunks from all the hydrocortisone! Sorry so long but had to let it out.:sign0085::mad2::thumbdown::eek2::stinks: