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Going for surgery consultation...what questions to ask?

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Posted 10/8/2015 3:09 PM (GMT 0)
Hi all. I am going for a surgical consultation on the 22nd. I have a long list of questions to ask but wanted to reach out here to see if there is something I may not have thought of.

Any specific things I should ask when I meet with the surgeon that you have learned from your experiences?

Thank you!
Posted 10/8/2015 3:42 PM (GMT 0)
Definitely ask how many jpouches surgeries he's done. Ask about complications, fertility, 2step vs 3step, laproscopic, might want to ask about incisions.

I am proud of you for consulting. It doesn't mean you have to do anything, just get the info and see how you feel.
Posted 10/8/2015 4:11 PM (GMT 0)
Thanks notsosickly girl! I had a few of those. When you consulted did you meet with more than one surgeon?

I need to do this. Just so I know. I don't know what will come of my current flare with my next remicade infusion at a double dose but I don't want to be too sick if I need surgery. I need to hold out and see how my hormones settle as I come out of post partum and finally finish breastfeeding (less than a week to go) but I want to be ready.
Posted 10/8/2015 6:34 PM (GMT 0)
I met 2 surgeons. The first hadn't done a lot of pouches, under 100. She wasn't really the best option for me, but she was recommended, and she actually seemed really confident, smart and capable. The 2nd I met is a specialist in surgical treatment of IBD & he's done A LOT. I researched online and he's the guy everyone was recommending. Both my GI and my 2nd opinion recommended him. He's on the forefront of research too. Right when I met him he made me laugh. He makes bad poop jokes and I find it very funny, he set my mind at ease and I felt like everything was going to be okay so scheduled a date and now I am getting close to the end. The 1st problem for me has been, getting around work with these surgeries. The 2nd is that I get over the surgery pretty fast, but the few weeks after are really tough. It's not just getting through those first few days, you're weak for a good 3 or 4 weeks after and you can't lift anything heavy for almost 6 weeks. I really felt like I needed to see someone great for surgery because I had a bad pANCA result and I am extremely worried about pouchitis. I know the surgeon I am working with does research in the area and I need someone great on my side if that is an issue. I really hope it's not.
Posted 10/8/2015 8:35 PM (GMT 0)
The Q and A from this blog post helped me a lot when it came to forming my own list - http://ronnielee-fightingforit.blogspot.com/2012/09/surgical-consult.html

Other questions I asked included how many jpouch surgeries had they performed, whether or not the surgeries would be robot assisted, what are the most common complications for their patients specifically, where would my incisions likely be located, how will my history of meds impact the procedure or outcome (if at all), etc.

Good for you for going in for a consult. I had two consults with two different surgeons about a year and a half before ultimately opting to move forward, so to echo what NSSG said, there is no commitment to getting a consult; it's just a good way to gather more information.

Also, I ended up choosing a surgeon who was not part of my existing GI team. This wasn't my ideal situation - it would've been slightly easier from a logistics perspective if I had gone with the CR surgeon who is tied to my GI and based out of my regular clinic and hospital (a major university hospital located in a big city) but I frankly didn't feel 100% comfortable with him and I felt his experience wasn't terribly impressive. He had completed only 40 jpouches. The jpouch is supposed to last you the rest of your life, so I felt that finding the right CR surgeon - someone you are comfortable with and someone with a lot of jpouch experience - was key. I am happy I kept looking and found someone I was comfortable with.

Good luck!
Posted 10/8/2015 9:18 PM (GMT 0)
You guys are awesome. Thank you so much for that link. This is all so helpful.

When you guys say that the surgeon has preformed A LOT of j pouch procedures are we talking 100s, 1000s?

I definitely need a good re-pore with my doctors.

@NSSG - I too am very concerned about pouchitis as well as inflammation at the rectal cuff - they remove the whole rectum and leave the cuff to connect with the j pouch, correct?
Posted 10/8/2015 9:28 PM (GMT 0)
Totes,
I asked Goldstein how many j pouches he has done but all he would tell me was "a lot". Hopefully you'll get a number out of him. I'm curious!

Ask questions about what complications may arise. I wish I asked more about that. I had some complications post op from step one that threw me way off guard.
Posted 10/8/2015 10:22 PM (GMT 0)
@ByeByeUC - I will def keep you posted if he gives me a number! Did you meet with anyone else beside him?
Posted 10/8/2015 10:37 PM (GMT 0)
I did the same as atwoodt. I went to someone at an entirely different hospital. If i had gone with the surgeon at my GI's facility things would have been much easier for me too, but in this case, i think it's best to do what you feel most comfortable with. They do leave a cuff. I think different doctors leave different amounts. My surgeon does mucosectomy to strip the cuff of cells. This makes you less likely to develop conditions but it also needs to be performed by a very skilled surgeon with a lot of experience. I was really worried about it actually. Suebear had her's stripped too if you search around, she's mentioned it. You should ask about that but you can't really push for it or against it, I think it's either something they specialize in or it's not. I don't even think it's recommended at this time but i know my rectum was in bad shape so I think I needed it. I think a lot is over 500 but some surgeons have over 1000.
Posted 10/8/2015 11:40 PM (GMT 0)
Yes I have 2 recommendations. The one from ByeByeUC and one at a completely different hospital. I also need to discuss with my GI when I see him a few days after my remicade infusion next week. He feels me going for surgery is aggressive. I told him I don't want to jump around from biologic to biologic. From what I understand once you fail one the success rate of others drops.

Thank you so much for the mucosectomy info. It's something I really want to discuss and now have the right terminology.
Posted 10/9/2015 1:27 AM (GMT 0)

TotesMagotes said...
@ByeByeUC - I will def keep you posted if he gives me a number! Did you meet with anyone else beside him?

yes, dr. Bauer out of mt. Sinai in NYC. Decided to go with Goldstein because I liked him instantly (I always go with my gut...no pun intended) and he was my GI dr's recommendation.
Posted 10/9/2015 4:59 AM (GMT 0)
Last ditch option to surgery.............have you tried Entyvio? New hot UC drug. Did not work for me, but seems to be helping other UCers. Facebook has a great closed group called Entyvio Warriors; very knowledgeable folks. I eventually elected a proctocolectomy in June. Didn't qualify for j pouch on account of age (over 50), but with that said, life has improved dramatically. As for surgeons, find the most experienced available to you, hopefully at an university hospital. Good luck!
Posted 10/9/2015 1:31 PM (GMT 0)
Totes - I completely agree with what you're saying re going from biologic to biologic. In hindsight, I regret trying them since I am still battling a pretty nasty side effect from remicade. Despite all the pre-surgery research I did, all the jpouchers I connected with, etc, this NIH article - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3337560/ - is really what encouraged me to move forward with surgery. The biggest takeaway for me is that colectomy rates have remained unchanged despite all the advances in biologic therapies.
Posted 10/9/2015 4:20 PM (GMT 0)

atwoodt said...
The biggest takeaway for me is that colectomy rates have remained unchanged despite all the advances in biologic therapies.

Very true. Unfortuately I believe the biologics are just prolonging the inevitable. There doesn't seem to be a lot of staying power with any of them. It works for a while then it's done. It can be a good thing to try because it allows the patient to get well and strong enough for surgery if they respond to the biologic. We need a real cure. Will we ever see one? I don't know but I worry for my kids because UC is in my family big time. I don't want them to have to go through what I did if they ever have to deal with this stupid disease. I pray every day they never have to deal with it. Drugs can be both a blessing and a curse. My mom has RA and has been on Remicade for 9 years now. She'd be crippled without it. It works very well for her. Luckily she experiences no ill side effects at all from it.
Posted 10/24/2015 2:09 AM (GMT 0)
How did the consult go? What did you think of Dr. Goldstein?
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