It’s *very* hard to properly qualify a surgeon. You can ask how many j-pouches they’ve created this year (or perhaps in the past 12 months). You can ask if they have any J-pouch patients who’d be willing to speak with you (this one is a nuisance for them while protecting privacy, so many perfectly good surgeons won’t go along with it). You can ask your gastroenterologist about the surgeon, but if they are geographically distant that might not be helpful.

@liza_s posted:

. I did some basic research shortly after my first surgery to learn more about his background and it seems good but I started looking again recently and realized that there is very little information on his complication rate, patient reviews, etc.

As the surgery approaches, I wonder if I have rushed into this process and neglected to properly research my options.

My question is, how do you research a surgeon? What questions should I ask (I've asked general questions about complications)? How can you tell if you are going with a professional? And lastly, are there any well-respected hospitals or surgeons that I should research?

Hi Liza,

These are very good questions. I was very lucky back in 1992 to have as my surgeon the man who was, at that time, considered to be the best and most experienced J Pouch Surgeon in the United States, Dr. Irwin Gelernt who worked out of Mount Sinai in New York City. That didn't deter me from going to him and asking a number of questions, one of which was, how many J Pouch surgeries have you done? His answer was "thousands", and the truth is that he at that time was probably the most experienced J Pouch surgeon in the USA. He had been mentored by Dr. Nils Koch, the inventor of the Koch pouch and I believe Gelernt did the very first Koch pouch procedure in the USA.

Start with a question on experience and next question would be based on that experience, what are the most worrisome complications and how do you deal with them?

Does he (or she) have recommendations on post op guidelines on diet and ileostomy care? (Gelernt did- he had a militaristic regimen set forth in written guidelines patients were given and expected to adhere to).

Does the surgeon recommend you bank your blood in advance of the procedure?

Impact on sexual function/fertility? (A significant and concerning complication- I was advised to bank sperm. Many women report painful sex on this board post J Pouch and men have reported retrograde ejaculation).

Use of pain meds, post - op and risks of same? I overused and ended up with post surgical ileus as a result.

Recommended stool thickeners post - ileostomy?

Butt burn complication and treatment of same?

Anal sphincter strengthening post-op?

Potassium/Sodium regulation post op and possible complications? (I had severe potassium depletion post op- ask how they plan on treating that if it arises- you may be past this issue if colon is already out.

How many post op exams and what will surgeon do or recommend in regards to possible post op inflammation that develops?

I know the answers on these questions and so does Scott. Our answers are not important. The surgeon's answers are what are important.

I found it difficult to find the right surgeon. I was so uncertain. My surgery was during covid and I wanted a hospital that allowed visitors.

the surgeon I chose operated on my MIL years earlier, and said he would try to do a one step procedure (I ultimately had a 2 step)

but I remember taking to multiple surgeons over several months before choosing.

Choose wisely, ask the questions that Scottf suggested. The surgeon currently in line to do step 2 will not be insulted if you go elsewhere.

good luck!

Hey Liza S

I understand where you’re at. I went through a similar experience 2 years ago. Admitted for a UC flare, colon perforated, emergency removal….assigned my surgeon due to emergency removal. I had to move away from my home city of New Orleans and back in with family through this entire process as well. I just had my takedown and am still recovering with family until I’m well enough to be back on my own feet. It’s been a very long 2 years.

I think it’s important to be upfront with your questions (the ones others have suggested above are a great place to start, especially with the handling of potential complications and post op care/therapy) and then determine if you’re comfortable with how he answers. To me, having a comfortable and HONEST relationship with your surgeon on health/surgery goals, what you expect, what you can do to promote healing, how you want to live your life after surgery, etc is huge. I asked all of these questions (probably multiple times lol) and spoke with a few of his past patients as well. What it came down to for me was his excellent response time and detail within those responses, his caring team (this is big too bc you have to deal with them a lot), his knowledge of my specific situation and his seniority at the hospital (he’s been doing this for 15+ years). I even researched some of the medical journals he authored and felt he was very qualified and a good fit for me.

Though I did end up sticking with my surgeon at Ochsner in nola (my fam lives close enough for me to travel and I plan on moving back), I did do some research of both the Mayo and Cleveland Clinics. I know they are both ranked VERY high (top 10ish) in gi surgeries but I didn’t meet any of the doctors or experience their facilities.

Best of luck, I know how daunting this can be, but you’re not alone. Keep your head up

Go to Crohns and Colitis Foundation of America (CCFA). They should have a patient advocate in your area. I talked with him on the phone and he told me which surgeon he went to and recommended him highly. When I asked the surgeon how many times he had done this surgery, he said 50 which was good for me. Hope this helps!

As I recall (I think it was 1990), my DH's colon doc recommended the surgeon at GW hospital in DC.: Dr. Orkin. My husband felt pretty comfortable with him. 

Asking about how many j-pouches the surgeon has done and how long they have been doing them for is a good place to start.

You could also ask where and with whom they trained on j-pouches.

But the problem with asking these questions is that there is no way to verify the answers. It is unlikely that surgeons would lie, but that’s not entirely comforting when you are about to have major surgery.

You could search the surgeon’s name here and in other support groups, e.g. Facebook, Reddit.

Or just make a new post asking about the surgeon and give their name and location in the title.

All this might be a bit hard to get done in a couple of days though.