How do you find the right surgeon?

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Stevo68
Regular Member


Date Joined Jun 2011
Total Posts : 59
   Posted 9/19/2017 4:38 PM (GMT -7)   
I'm here in Marietta/Atlanta Georgia and I've had the same gastro for some years. He recently referred me to a colo-rectal surgeon who seems fine and capable. They both failed to diagnose me with a fistual/abcess and I've spent the last 6 months in pain, however. Yesterday, I had my second MRI in 4 months. They found the abcess and they say that I have multiple fistulas surrounding my rectum. "It's very complicated" according to my colo-rectal surgeon. My colo-rectal surgeon also says I need surgery asap and wants to refer me to his partner because he is currently too busy. I'm meeting with her tomorrow and I imagine we will schedule surgery shortly thereafter, like days.

RateMd and sites like that aren't really helpful. My plan is to call as many doctors as I know or who I know through friends and see if anyone knows her. I plan to also ask my gastro-doc. Anyone have any other ideas? I want to be able to remain continent, frankly, and I've been told this may take multiple surgeries and that concern about continence is legitimate. And I've been told by too many concerned family members that the doctor matters. First, should I get a second opinion? I feel pretty certain and comfortable about the diagnosis - I mean, it's an abscess, you can see it, same with the fistulas. At this point, I'm really trying to find the best person for the job.

Any thoughts are greatly appreciated.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3313
   Posted 9/19/2017 7:11 PM (GMT -7)   
Those are good questions. I think that the thing I value most in a doctor is their humility. If a doctor acts all arrogant, like it's not a big deal, and doesn't think anything bad will happen or never listens to your input, then get away fast, no matter how "good" they are. However, humility doesn't mean everything - but I don't know how to say if they're competent. Sorry that wasn't much help. :/ I wonder if CCFA would have anyone listed. Or Facebook groups for fistulas/abscesses might have someone in your area that has personal experience with doctors nearby.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10079
   Posted 9/20/2017 7:38 AM (GMT -7)   
The trouble with members of the public is that any old moron with an axe to grind can get online and post a bad opinion. The bad opinion may be entirely valid, but you have no real way of telling. If you're not entirely happy with how the appointment goes tomorrow, don't be afraid to delay surgery and say you want another opinion: if she gets in a strop at that, that's a mildly bad sign in itself. Good docs are happy for you to see other docs and get other opinions before committing to an irreversible treatment.

I agree with scifigal about humility as well. If a surgeon dismisses your concerns before surgery, then the chances are they will dismiss them after surgery. Brusqueness doesn't matter so much, but you do want somebody who will take you seriously and answer questions directly - evasiveness is another bad sign.

Best of luck.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

DCCrohns
New Member


Date Joined Jul 2011
Total Posts : 14
   Posted 9/20/2017 8:05 AM (GMT -7)   
It's tough. My GI doc and PA have been great resources -- surveying other doctors in their practice and beyond, and I've had consults with several colorectal surgeons (and switched once).

I think you need to trust your gut and find a surgeon who you have a rapport with, but also ask the hard questions -- how many of x procedure have they done, etc. I also would see if they hold any leadership positions, actively publish/research, etc. to make sure they are on top of the latest approaches, and research the hospital they work out of. Also be prepared for them to possibly bring in another surgeon (usually plastic surgeon) to help if you end up with a flap.

Best of luck!
Amber
Diagnosed with Crohn's: 2002
Past Meds: Pentasa, Remicade, Cimzia, Asacol, Cipro, Flagyl, Lialda, VSL#3
Current Meds: Humira (80mg/week)

Surgeries: Fistulotomies & Seton Placements/Adjustments (September 2011, January 2013 & August 2013); Advancement Flap (December 2013); Temporary Loop Ileostomy (July 2016); Fistula Repair with Gracilis Muscle (September 2016); Fistula Repair (December 2016)

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 991
   Posted 9/20/2017 8:07 AM (GMT -7)   
I agree with Everyone. Those are some of the traits that my doctor has that made me say that I made the right choice switching to him. When we had a discussion about the possibility of surgery at one point he made sure to say something like, and I'd be totally fine with you getting a second opinion on this before going forward with it. (Luckily the testing he did ruled out the need for surgery anyway)
And yes the online reviews are really hard to tell sometimes. Like someone might get disgruntled about the wait time and give one star. I have an amazing pulmonary doctor and rheumatologist who both have a very long wait time that get people angry but it's only because they spend an amazingly long time with each patient and are good thorough doctors.
CCFA could help you narrow it down but those doctors pay to be included, it doesn't necessarily guarantee who you get is better than someone else. So I'd say make it a step in your research but not the only step.
Getting another recommendation from your pcp is good. Look for someone that has good hospital affiliations.

Post Edited (Labradorite) : 9/20/2017 9:34:13 AM (GMT-6)


BETTY SUE
Regular Member


Date Joined Nov 2015
Total Posts : 230
   Posted 9/21/2017 5:04 AM (GMT -7)   
I think picking the right surgeon is key to everything but so hard to do. My son (21) was dx with Crohn's August 2015 and his disease advanced quickly with him needing illeocecal surgery within six months (and barely avoiding thoracic surgery from throwing up so much he had a micro tear in his esophagus). We went on line and read reviews (which I agree may not mean much), talked with friends / colleagues associated with this dreadful disease and then I came armed with a list of questions (27) for the surgeon wha patiently answered each one which showed interest and in his case a sense of teamwork. He was very candid and honest and encouraged us to seek out a second opinion. He talked not only about what he had done that went well in this surgery but also times there were unforeseen complications. He answered my son's questions (even though I seemed to be way more concerned than he was!) and the surgeon even directly answered questions my son had after we had left the office (giving him his personal cell number!). I will be forever grateful to this surgeon and my son is a new person after surgery. Best to you on your quest. Time and patience (when you have them) can certainly pay off!

Stevo68
Regular Member


Date Joined Jun 2011
Total Posts : 59
   Posted 9/22/2017 7:56 AM (GMT -7)   
Thanks for the thoughts all. She does a lot of surgeries (every day) and said she handles probably 3-4 fistulas or abscesses a week. She did say that when she saw my MRI, she was kind of surprised at how bad it all looked and said she might see a "bad" case like mine maybe once a month.

So I think I'm going with her. In fact, I know I am, as I'm going in for surgery in a couple hours. She was totally happy to recommend another doc if I wanted and absolutely sat and answered all of my questions. She also expressed that she had already sat down with the MRI person to go through my MRI because she has found that that can help with finding the exact location of the openings and whatnot. Abscess drain and horseshoe seton, here I come.

So... here's to fingers crossed.

DCCrohns
New Member


Date Joined Jul 2011
Total Posts : 14
   Posted 9/22/2017 11:14 AM (GMT -7)   
Best of luck!
Diagnosed with Crohn's: 2002
Past Meds: Pentasa, Remicade, Cimzia, Asacol, Cipro, Flagyl, Lialda
Current Meds: Humira (80mg/week), Azathioprine (100mg/day)

Surgeries: Fistulotomies & Seton Placements/Adjustments (9/2011, 1/2013 & 8/2013); Advancement Flap (12/2013); Temporary Loop Ileostomy (7/2016); Fistula Repair with Gracilis Muscle (9/2016); Fistula Repair (12/2016)

BETTY SUE
Regular Member


Date Joined Nov 2015
Total Posts : 230
   Posted 9/23/2017 5:30 AM (GMT -7)   
Yes, best of luck and let us know how you are doing!!

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 991
   Posted 9/23/2017 11:05 AM (GMT -7)   
Hope it goes well! Sounds like a good doc! Let us know how you are

Stevo68
Regular Member


Date Joined Jun 2011
Total Posts : 59
   Posted 9/23/2017 4:40 PM (GMT -7)   
I had the surgery. Doc said it went well, she was able to drain the abscess and get a seton in my fistula. In a couple of weeks she wants to talk about going on Remicade. Currently, I only take Pentasa. This is my second fistula in 8 years.

Do you think I can heal on my own? I'm a surprisingly good healer, despite the Crohns and I'd love to not go on Remicade if I can avoid it. Any thoughts on diet and exercise and just being healthy as a way to heal?

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 991
   Posted 9/23/2017 5:38 PM (GMT -7)   
Glad the surgery went well! I highly suggest the remicade. I'm on it now. It's along story but I struggled with a fistula for 3 years before starting humira before this. I did not want to be on these meds either and did everything to avoid them but it's the best option. Get it healed, you can always rethink getting off the meds once you are in deep remission.

BETTY SUE
Regular Member


Date Joined Nov 2015
Total Posts : 230
   Posted 9/26/2017 6:38 PM (GMT -7)   
Remicade gave my son his life back. He has had no side effects and is in complete remission (after surgery and many tries with different medications including pentasa!)

Rodriguez Smith
New Member


Date Joined Sep 2017
Total Posts : 3
   Posted 9/27/2017 12:01 AM (GMT -7)   
Yes, very nice set. Really did good.
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