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Ulcerative Colitis
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Posted 6/28/2016 6:32 PM (GMT 0)

blksteeda said...
Where is it you live? One thing to consider, you'll have numerous follow up appointments with your surgeon. I'll be under my surgeon's care for one year, I had my takedown in Feb of this year. I've already seen him numerous times and also due to complications after my initial surgery, hospitalized 3 more times. If you're incredibly far from those locations you'll have to consider follow up appts and if any issues arise. I had a bowel resection in 2013 at Cleveland Clinic in Florida and had a pinhole in the surgical join that made me horribly sick and rushed me into emergency surgery. It was a great hospital and I had a highly experienced surgeon but things can happen.

Interesting point. I am in Atlanta so its about 11 hours there. I presume this probably isn't the type of surgery that I could have and do follow ups closer to home eh? (or at least would be very difficult).

Obviously you don't want a surgeon who's never done a j-pouch surgery before, but as long as you get someone who's done a fair number, not sure it makes any difference whether you have it done locally or travel hundreds of miles. Nobody would be performing j-pouch surgery in the first place if they weren't already a highly skilled and trained surgeon.

Somebody said...


Well thats why I'm wondering if that is why he directed me to this hospital. I mean my original surgeon had told me he does 4 or 5 a year but I initially thought his referral to a specialist further a way was truly for increased likelihood of better results. Do you happen to remember the username or thread which mentions the Cleveland Clinic experience?

Posted 6/28/2016 6:37 PM (GMT 0)
I'd take an experienced surgeon over the facility. I'd want the surgeon who performed my procedure and who knows my "insides" in case anything does come up

how many consultations with different surgeons have you had?

Post Edited (blksteeda) : 6/28/2016 12:40:05 PM (GMT-6)

Posted 6/28/2016 6:51 PM (GMT 0)

blksteeda said...
I'd take an experienced surgeon over the facility. I'd want the surgeon who performed my procedure and who knows my "insides" in case anything does come up

how many consultations with different surgeons have you had?

I have only had one consultation so far. I was getting ready to move forward with this surgeon(the original referral from my GI) when he brought up this whole Cleveland/Mayo thing. He had basically said that any surgeon (whether through private or a university program, in my case Emory University) would be about the same but supposedly the surgeons at Cleveland/Mayo are regarded as being top of the field.

Since I was planning a road trip to Canada anyway I was thinking of maybe making a pitstop and getting a consultation to at least hear out what this other surgeon thinks.
Posted 6/28/2016 6:53 PM (GMT 0)
I agree that it's good to see a surgeon with a lot of experience for this. My GI said that the surgeon is the #1 predictor of a good outcome. Of course, even with the best, there are people who's bodies probably don't adapt as well. There are no guarantees and it's scary, but for me, the option was to stay within 5 feet of the toilet for the rest of my life, or take the risk with surgery. I am so thankful I had surgery... CC is supposed to bet he best. I would imagine any major metro area would have at least an option or two for surgeons. I know there are a handful here. I chose the one who was recommended over and over by every GI and medical professional I spoke to. I am on the west coast, too far for you. I considered going to CC. My insurance would have covered 100% but I didn't see how i could travel and have no one to help me. Plus, the flight and hotel would have been expensive. I doubt I would have ended up any better off if I had traveled - so far as results or finances. I am thrilled with the way things worked out.
Posted 6/28/2016 6:59 PM (GMT 0)

MarsRover said...
Well thats why I'm wondering if that is why he directed me to this hospital. I mean my original surgeon had told me he does 4 or 5 a year but I initially thought his referral to a specialist further a way was truly for increased likelihood of better results. Do you happen to remember the username or thread which mentions the Cleveland Clinic experience?

The name of the user is SolomonSeal. If you do a site search some of his posts should come up.

Did you ask your surgeon what his results were? 4-5 a year doesn't sound that many, but on the other hand if he's been doing it for 10 years that's 40-50 j-pouches in total. I must admit, I don't know what an 'ideal' number of j-pouches is, but I agree with blksteeda's point about wanting an experienced surgeon and somebody who already knows my insides.

I've had the same surgeon twice now and she did a perfectly good job both times. My crap outcome was because the Crohn's came back, not because of any surgical error. I even had a pelvic MRI to check for anastomotic leaks and there weren't any. I dunno. Obviously you want a surgeon who is skilled/experienced enough to create a mechanically sound j-pouch, but apart from that I don't see how it matters that much what surgeon you have - the best surgeon in the world can't do anything about pouchitis, Crohn's, etc.
Posted 6/28/2016 7:07 PM (GMT 0)
There are MANY experienced surgeons who do the procedure. The CC is a highly experienced facilty but they are certainly not the only ones capable. You just have to spend some time to research.
Posted 6/29/2016 5:27 PM (GMT 0)
Experience is paramount but most states have very good surgeons in the metropolitan areas. I opted for surgery 2 hours from home from a surgeon who had done over 2000 jpouches. I had no issues with recovery and saw him 2X post surgery. The drive was well worth it.

Sue
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