I have Crohn's Colitis and have not responded to meds. I have one study drug left to try and then after that we're going to talk surgery. At this point I am not opposed to an ostomy--I'm having diarrhea probably 10-20 times a day and feel like S#!T all day, can't leave my house, etc. A j-pouch at this point sounds like an invitation for more diarrhea and for the disease to return and I don't like that. I know it's not that easy and this is a MAJOR surgery but at this point I am desperate for relief.
My questions are:
What is one thing you gave up when you got your ostomy?
What is one important thing you gained?
I am guessing most of you would say the ostomy was worth it, but I would just like more information on quality of life, etc. from people so I can make an informed decision. I'm so desperate to be able to live again that I feel like I can't even make little decisions, let alone big ones!
Thanks in advance, everyone!
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Rowasa Enemas, Colocort Enemas.
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
Currently on: 30mg Prednisone (Tapering SLOWLY from 60), 125mg Imuran, Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Vesicare (for urinary retention).