Hello
I am new here but have been an ostomate for more than half my life. I was diagnosed with ulcerative colitis in Sept of 1994 and had an emergency total colectomy three months later. In the summer of 1995, I had the J-pouch surgery but sadly, it lost its blood supply and failed. The J-pouch was removed but they left my rectum intact. I have been living with an ileostomy ever since.
Up until the last few years, all has been fine. Eating almost anything I want to, doing any physical activity that I'm interested in (bicycling, skiing, swimming, hiking...). The only thing I haven't done is have children and I'm pretty sure the scar tissue from so many procedures is to blame for that. Whatever, I'm over it. I'm 40 and hubby and I have other plans now.
In the last few years, I have had periodic (and now constant) discharge from my rectum and pain that varies from a dull ache, to it hurts so bad I can't even sit on one cheek. The discharge isn't constant; I would estimate that it adds up to a tablespoon (or more) on any given day/night. At times when I am unable to get to the loo right away, it travels up my butt crack (is there a medical term for that? lol) and then gets chapped and causes skin irritation. It is unpleasant to say the least.
Docs have prescribed Flagyl (Canada), an antibiotic with horrible side effects - nausea, dizziness, dry mouth, etc. It worked great at first but has become less effective as is the nature of antibiotics when one takes them for extended periods of time. I want to be rid of this nonsense.
CT scans have shown that there is a pocket of fluid just above my rectal stump - it is unclear whether or not that fluid is the source of the discharge or if my rectum is producing it on its own naturally. I have a tentative date for a proctectomy on March 23/16. My surgeon (not the same one from 1994/95) has consulted with a colleague and the radiologist and all are in agreement that a proctectomy is the best solution.
My main concern is that the proctectomy will be a band-aid... what if the discharge is from the pocket of fluid above my rectum? If so, wouldn't closing the rectum prevent the discharge from exiting and therefore be more painful because it has nowhere to drain?
And, if I do go ahead with the proctectomy (at the moment that is my intention), how much time will I need to recover? And when can I go back to work? I can't imagine a worse place for a wound than between one's cheeks.
I look forward to your responses. (and I apologize for my long-windedness.)