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Posted 2/2/2013 4:25 AM (GMT 0)
I live in the Washington DC/Baltimore area and am looking for a surgeon. Any specific recommendations or people/places to avoid?

Questions I should be asking? just starting the surgery process

I have UC and anticipate having a colectomy and j pouch
Posted 2/2/2013 11:12 AM (GMT 0)
Go to jpouch.org in the general discussion forum and ask there. There are thousands of j pouch members there.....probably many more than on this site. Best of luck!
Posted 2/3/2013 5:18 PM (GMT 0)
Aloha Freedom75,
Don't leave placement of your ostomy to the surgeon. Talk with an Ostomy Nurse as to where you want your stoma located. Your surgeon should have 100's of surgery's. You will live with this placement for the rest of your life. If the stoma is too close to the belly button, it will leak.
Joe
Posted 2/3/2013 6:18 PM (GMT 0)
I totally agree about stoma placement. Have a good WOC nurse do the placement and be sure he/she spends a decent amount of time doing it.....not just a few minutes. They should have you lay flat, bend forward, backward, twist side to side, kneel and get on all fours. I do lots of gardening so I did all the positons I use everytime I'm working in the garden. Haven't started the gardening season yet here in the frozen Midwest but everything is going well regarding my stoma placement so far.

FYI....I believe you have to have an order from either your family doctor or your surgeon before you can see a WOC nurse. I know I can't just call them and make an appointment. I do have a standing order from my surgeon that is good for one year so with that I can call without my doc doing it for me.
Posted 2/3/2013 9:59 PM (GMT 0)
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.
Posted 2/3/2013 10:14 PM (GMT 0)
Hi freedom75, I just wanted to let you know that there are different options out there! I had UC, had the surgery for a j-pouch which was HELL since day one, it never worked right, always had cramping, constantly was on the toilet, had aweful butt burn, couldn't work, and was afraid to go anywhere in fear I would poop myself! Finally after dealing with this for 9 long years I finally convinced my dr to give me a ileostomy! That to was aweful, you got this stinky poop bag hanging off your tummy, always afraid it would leak, which it did, quite a bit! Waking up in the middle of the night covered in poop, your skin where the bag was attached was sore most of the time, causing me to be very depressed! I thought there has got to be a better option out there for people like us! I surfed the Internet and found a surgery called a Kock Pouch! I really did my research and found a wonderful dr by the name of Dr. David Deetz at the Cleveland Clinic in Cleveland, Ohio, who did my surgery and am the most confident, happy, grateful and Blessed person ever! Go to www.j-pouch.org/eve/forums and scroll down to K-Pouch Korner to get info on this amazing option , I just wish I would have known about it years sooner! Any questions, just ask!
Posted 2/4/2013 3:44 AM (GMT 0)
My husband had his surgery at the University of Virginia. Not sure if that's too far for you to drive, but he had a great surgeon who was able to deal with some prednisone-related complications. Every ostomy nurse said his stoma was "beautiful" and he has had no functional issues. Surgeon's name was Dr. Charles Friel.
Posted 5/15/2013 12:00 PM (GMT 0)
This thread is a bit old, but if you are still looking I would recommend Dr. Othon Wiltz at Washington Colorectal Surgery in Arlington, VA. His practice does laparoscopic/minimally invasive surgery. Dr. Wiltz actually used to be an instructor of surgery at Harvard Medical School and his medical research is widely published. One of his articles that I found dated back to 1995 (and dealt with best practices for jpouch creation) so he has certainly been doing this for a while.

http://www.ncbi.nlm.nih.gov/pubmed/7817983

I had my initial surgical consultations with him back in 2010 when I was heading toward the surgery route. I thought he had a great bedside manner and was a really nice guy. Fortunately I was able to avoid surgery at that time, but I will definately be going back to him should the need arise again.
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