Posted 2/3/2013 3:59 PM (GMT -6)
Hi there! I recently started the process of working towards a j-pouch as well, I had my colectomy 2.5 weeks ago. I posted a thread about a month ago asking for advice about what questions to ask the surgeon and UCWarrior posted this list of the questions he asked. Hope it helps!
• Is it certain that I have UC and not Crohns? Especially, given that I also had a fissure a while back.
• How many surgeries have you done? How many of them would you call successful?
• Are there any patients of yours that I can talk to?
• Would the surgery be done laproscopic or would it be an open surgery?
• How long will the surgery take?
• How long will I be in the hospital post-op?
• How many steps will be there in the surgery? How much time between each step?
• How long is the recovery on average? How much time off from work will I need?
• What medicines will I be on after the surgery? Will I still be taking medicines for UC?
• What kind of diet will I be on post-op?
• What kind of pain will I experience post-op? How will I be able to manage that?
• What are the important issues with a j-pouch or ostomy and how to deal with them (blockage, skin sensitivity, products)?
• What is pouchitis? How is it controlled? What are the symptoms?
• How will the post-op surveillance of the remaining rectal pouch, leakage, etc. work?
• Explain the surgery in very simple terms. Diagram of a j-pouch.
• Will the entire rectum be removed? If yes, do you sew the rectum or do you leave it open?
• What is a stoma? What does it look like?
• What are the possible complications post-op? What is the impact on personal life, having kids, exercising, travel, etc?
• Will I have an end or loop ileostomy and what are the differences between the two?
• Does the fact that I am on predinisone and vedoluzimab have implications for the surgery?
• What will my life be like post-surgery? How many trip to the bathroom, urgency, pain?
• How long before the j-pouch will be able to function to its best?
• How will the post-op ostomy care work?
Anecdotally, my primary care doctor told me that I shouldn't use a surgeon unless he or she had done at least 300 j-pouches (the two I consulted with said they had done "close to 1000" and "hundreds"). I'm not sure which hospital is the best that is closest to you but I think most people here would agree that you shouldn't hesitate to travel in order to be at a hospital and with a surgeon that does a LOT of pouches.
dx'ed UC pancolitis 5/12 w/ moderate-severe inflammation
past meds: asacol hd, VSL#3, apriso, rowasa, xifaxan, 6mp, cortifoam, pentasa, cimzia, canasa, butyrate, flagyl, cipro, prednisone, remicade, methotrexate, cholestyramine, cortenema
current meds: tapering 10 mg/5 mg prednisone
step one: colectomy w/ end ileostomy, 1/16/13
so much happier already!