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surgeon referral - total proctocolectomy

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Ulcerative Colitis
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Posted 5/17/2019 4:22 PM (GMT 0)
After a finding of high grade dysplasia in a colonoscopy, I'm looking at a total proctocolectomy - with an eventual j-pouch. I live in northern Virginia outside of DC. We've met with the surgeon at Johns Hopkins (Dr. Safar - who was great) and he said the most important criteria for a surgeon is someone who does 20-50 of these a year.

Anyone have a lead on any surgeons who have that type of experience in northern VA? I'll go to Johns Hopkins if needed, but seeing if possible to be a bit closer to home.

Thanks in advance.
Posted 5/17/2019 7:45 PM (GMT 0)
I am on the other coast so, unfortunately, I have no referrals but I wish you the best. It sounds like Dr Safar would be a great option, but yes, I understand wanting to find someone more convenient. With a life-altering surgery like this one, I would probably go to the best and forget about convenience to some extent - unless there is someone equally qualified closer. His advice was good, more procedures performed, higher chance of a good result. I can tell you, while surgery is not what any of us wish for, with your high-grade dysplasia, it is necessary and life after surgery has some advantages. I never think about UC anymore and I don't take any drugs. It's great. I spend zero on healthcare.
Posted 5/17/2019 8:03 PM (GMT 0)
Thank you for the encouraging words! Indeed, it is a bit overwhelming. The crazy thing is that I am in remission and feeling good. But, I'm one of those annoying glass-half-full people. I will now be cured of UC! And off of Imuran. I had a horrible flare a few years ago and still have PTSD from it, so I remind myself that I will never have that happen again. Indeed, unless I can find someone equally qualified, I will definitely go with Dr. Safar. Best to you.
Posted 5/17/2019 8:19 PM (GMT 0)
I traveled 2 hours for my surgeon. It’s well worth it. It’s not just the surgeon but also the hospital and other staff that will be caring for you — you need them all to be experienced.

The hospital that I went to had a whole floor dedicated to colorectal and gastro surgeries. Experience matters, this isn’t an appendectomy.
Posted 5/17/2019 8:37 PM (GMT 0)
Did you look at Georgetown hospital? I hear good things about them. They have an IBD Center, so I would think there would be some experienced surgeons there.
Posted 5/17/2019 11:08 PM (GMT 0)
Even without your colon you are technically not cured. You can still have secondary manifestation, cuffitis and pouchitis. These are rare things to happen but surgery is not curative, just symptoms relief.
Posted 5/18/2019 2:06 AM (GMT 0)

ks1905 said...
Even without your colon you are technically not cured. You can still have secondary manifestation, cuffitis and pouchitis. These are rare things to happen but surgery is not curative, just symptoms relief.


Will one still need prednisone for the secondary manifestations?
Posted 5/18/2019 2:12 AM (GMT 0)

Andrina said...

Will one still need prednisone for the secondary manifestations?

I would assume it would depend which secondary UC manifestation it was.

I don’t have any other manifestations.
Posted 5/18/2019 4:06 AM (GMT 0)
I don't take anything. The bottom line is just that there are no guarantees. You have to sort of expect the worst and hope for the best. I haven't taken a drug orally since my surgery. I did, however, use some rx cream on my butt there and there, but that seems insignificant compared to the heavy duty drugs I was taking with UC. I also have to use the bathroom more often now. It can be annoying, but generally, it's not a huge deal. Just go when it's convenient - I can wait to go now.
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