Surgery consult- what should I ask?

A re section is likely a no go if you have UC. Are you thinking a permanent ileostomy or J pouch? So questions to ask would depend on what you're open to.

I had the j pouch procedure and at my consult I asked my surgeon the following:

How many j pouches have you done?
Will the procedure be in 2 or 3 steps?
open or laparoscopic?
What is my expected recovery time from each step?
Will I meet with a stoma nurse?
Tell me about pain management post surgery.

I'm sure there was more but it's been 6 yrs and things are starting to fade from my memory.

Where in NJ are you? Jersey gal here :)
Good luck!

I had a resection at one point in 2013 to remove the only inflamed area of my colon. It was riddled with giant pseudopolyps and was the cause of my constant iron issues. When the resection was done, things were ok for a bit but my UC attacked what was left, areas it never attacked before. I am now in the healing process from J Pouch surgery I had in October of 2015. I had my takedown surgery to connect my J Pouch in Feb.

A permanent ileosotmy means you will live with a colostomy bag for the rest of your life. A J Pouch is where they create an internal "pouch" from your small intestine and connect it to what will remain of your anus. You will have a temporary loop ileostomy between procedures while your bowels heal. It can be done in two or three steps. Mine was done in two. I had my colon removed and the creation of the J Pouch in the first surgery and the temp loop ileostomy created. The second surgery was to remove the ileostomy and connect my bowels back together so the J Pouch could start to function.

I remember being concerned about pouchitis and surgical complications. My surgeon actually really set my mind at ease. He does loads of jpouches. In fact, there were multiple people undergoing the same procedure within the same time frame. One woman was having her takedown on the same day as me... It all feels very overwhelming when it becomes a reality. You will be surprised how well they are able to usher you through the steps. I pretty much scheduled the day I met the surgeon. The women at his office helped me with all the details. From setting up my meeting with the ostomy nurse, to getting me scripts for my colon prep, to giving me paperwork detailing what time to arrive. It was a pretty beefy packet of papers. They gave me a coupon to reduce the cost of the prep solution and a soap to wash with before surgery. Told me how to use it and everything. I spoke with the billing woman at the office to make sure all my ducks were in a row so far as what to expect for the "grand total". She assured me of what to expect and she came in right where she said she would.

I think the big question everyone wonders is, will it be open or laprascopic? The other is how many steps? I did a three step. I would have loved to be it in 2, for many reasons, it's faster, easier, less surgeries, less time off... It wasn't an option for me unfortunately. How long between steps? How long is the typical hospital stay after each step? How many jpouches have you created? How often do you see complications? Impact on fertility? (not sure if that's an issue - it wasn't for me). You might want to ask about dietary restrictions. I didn' thave any - but my appetite was about zero. Private or shared room? I was always alone :) Do you have a home care nurse after surgery? How many visits? What type of pre-op blood work?

Then for you, it's not a bad idea to start looking at products. It's very hard to order samples before the surgery because you have no idea what type of stoma you will have. Mine was short and a little under an inch in diameter. I picked up a kit from the ostomy nurse right before the surgery. It had some samples you can look at and it had "testing" materials. It takes time to learn, but it's the kind of thing where once you do it once, you're comfortable on your own. I am thankful I went through all 3 surgeries, but it's a big undertaking. You're sort of in limbo waiting for the whole time you have the ostomy, then when you finally reconnect, there is a long period where things aren't quite as predictable as you would like. It's not unpredictable like UC, but i was going quite often for a while. Now things are "normal". I empty when I pee often, not every time...

Have you had an upper scope, MRE or pill cam? It's important to rule out Crohn's. That's the one thing that would disqualify you from getting a jpouch - if you're looking to do that.

ks1905 said...
I'd recommend that you bring someone with you, these meetings can become overwhelming and it's nice to have some support and another set of ears.

Yes, this! definitely bring someone with you!

My Dr[on Long Island]gave me name of surgeon in city who does several surgeries per week.IM doing ok now but want consultation now while its not an emergency

I'd recommend that you ask the ostomy forum for some suggestions, everyone there has had surgeries already.

I'd also make the point that you are going to choose a surgeon based upon their skill and for the time that you are on the operating table. My surgeon did not have a very good bedside manner but he is an excellent surgeon, he even has a resection surgical technique named after him.

I went to the same hospital that you are going to.

Laurie,

He is the Chief surgeon at the NYP. Dr. Michelassi. I had to switch insurance companies to use him, he only takes a limited number of insurance plans.

My mistake; it is not a resection technique but a strictureplasty technique named after him.

He's a good guy but the thing is that he is really busy and is not a hand holder so you need to be prepared for that. During my initial consultation he stood up, looked at his watch and told me that he could do my surgeries and then said that he had to leave. You'll have to spend a lot of time educating yourself about this stuff if you decide to use him because he doesn't have a lot of time to spend with you but he does have a great team to help out.

He's done some really nice things for me, one time he canceled a trip so he could operate on me on a Friday.

Was a jewish Dr-will try to find his name.My Dr said Drs in city do many more surgeries then Long Island Drs so ill prob get few opinions and figure out whats best-good luck

LoLoinNJ said...
Thanks, 3timechamp! I've heard there are also great surgeons at Mt. Sinai also so I'm wondering if anyone's gone there?

I had a consult at Mt Sinai.....Dr. Joel Bauer who is very well known. I liked him....he certainly knew his stuff. But in the end I ended up at Jefferson university hospital in Philly and had a great surgeon there who I loved. (dr. Scott Goldstein). That hospital was great....I was very impressed with everything there.

I had a seven day stay at mt Sinai for a Cyclosprine treatment and I did not care for the hospital at all. Maybe I was there on an off week but the nurses were awful.

Laurie,

How was your appointment today? Did you go to 14th floor where the CR patient hospital rooms are? It's really nice there.

Best of luck Laurie! Please don't hesitate to reach out and ask questions. I wish I had resources like this when I had my surgery but didn't discover this site unil after. That's the main reason I still check in here....to lend a hand if I can.

If you're on Facebook you can do a search for The J-Pouch Group. It's a private group so you would need to click the request to be added button and someone from admin will add you. (And since its private, nothing you post will show up in your regular feed). Lots of members there so questions get answered quickly. It's a very valuable resource. :)