Hi all,

I need advice on who is the best surgeon for jpouch issues?  I have a small leak in mine & my surgeon is referring me to the Cleveland Clinic. I’ve heard they are a great facility for pouch issues but my husband has read some horror stories that have me questioning them. Plus the two well know surgeons, Remzi & Ashborn have left Cleveland Clinic. I live in Springfield MO.  I will travel to wherever, I just want the best & want my pouch saved. I’m thankful that my ileostomy saved my life but hated every minute of it & don’t want to have to go back to it especially not permanently. Any advice would be greatly appreciated!  I need this fixed pretty quick as I do have abscesses. 

Thanks!

 

Kiana

Original Post

Thanks Jeffsmom. I hope your son’s surgery went well yesterday. Do you guys live in New York?  I’m just trying to figure out if I should give Cleveland Clinic a chance or try to come to New York. I know Dr. Remzi practiced at the Cleveland Clinic for years so I would assume the surgeons there learned from him. I’m just really nervous & not sure where to go.  I want this all fixed & not have to go through several more complications. My doctor here has called me Murphy’s law. I’d like to retired that nickname 😊

Thanks again,

Kiana

Two other top places to consider going would be Johns Hopkins in Baltimore (Dr. Safar is amazing) or to Cleveland Clinic in Florida.  I've lived near NYC and found that getting care there, if you are from out of town, especially, can add a layer of complexity and expense. I was also much happier with my experience in Baltimore than I was when I went for consultations with surgeons in NYC. Dr. Safar has saved pouches for people in the past and trained at the Cleveland Clinic in Florida.

I'd be happy to tell you more about my experience at Hopkins if there's a way for you to private message me.

Thank you sunflower70. My physician here called around, even asking his mentor from where he trained who was the best surgeon & got the name of Tracy Hull from Cleveland Clinic in Ohio. She’s supposed to have a really good reputation with pouch issues.  So I’m going to give her a chance. I appreciate your honesty about NY. Me & my husband talked about it more & just the expenses in NY alone could be an issue. Thank you again. & if I have more questions on the places you mentioned , I’ll try to find a way to private message you on here!

 

Kiana

Kiana, I live in NJ about an hour from NYC.  I think your plan to go to Cleveland is a good one.  Then, give NY a try.  If you decide to come to NY let me know if I can help.  Most of the big hospitals have a hotel theynwork with.  If not I know a fabulous hotel right by Grand Central Station.  We stayed there when my son was in the hospital for over 2 weeks.

he is doing better, thank you for asking.  But the problem is still not completely resolved.  It might be a long summer!

 

dianne

As I mentioned elsewhere Dr. Steven Gorfine of Manhattan Surgical is probably the most experienced J Pouch surgeon in NYC and was mentored by the late great Dr. Irwin Gelernt, who was widely viewed as the best colorectal surgeon in the nation in the late 1980s/1990s until his death in 1996 (he did the very first K Pouch surgery in the USA). Dr. Gorfine, assisting Gelernt or on his own, did all 4 of my J Pouch surgeries. He has been doing J Pouch surgeries since the late 1980s and I would guess he has done in the many thousands of J Pouch surgeries:

http://www.manhattansurgicalas...orfine-md/index.html

He once told me that J Pouches are like the Jaguar (the British car, not the animal)- “they give a great ride but have to spend a lot of time in the shop getting tuned up and maintained”. Funny guy. He actually did two J Pouch revisions on me because a septum developed in my pouch causing a mechanical issue with evacuation which he fixed both times. He is a problem fixer. He has seen them all.

 

Kikers32 posted:

Thank you sunflower70. My physician here called around, even asking his mentor from where he trained who was the best surgeon & got the name of Tracy Hull from Cleveland Clinic in Ohio. She’s supposed to have a really good reputation with pouch issues.  So I’m going to give her a chance. I appreciate your honesty about NY. Me & my husband talked about it more & just the expenses in NY alone could be an issue. Thank you again. & if I have more questions on the places you mentioned , I’ll try to find a way to private message you on here!

 

Kiana

Hi Kiana, just wanted you to know that Dr. Hull was my surgeon last year for both steps 2 and 3. I live in Virginia and drove 7 1/2 hours for the surgeries. I picked CC because I figured I had one shot at this since I'm over 60. I selected Dr. Hull after reviewing all the CC surgeons--their education, experience, specialties and interests, as well as their PubMed articles. Dr. Hull has been with CC since 1993 and has trained with the best of them. I think you're in good hands.

Thank you so much for the feedback on Dr. Hull.  This helps me a lot. I wish I would have went to CC in the first place to get my pouch done but hindsight is always 20/20. Now I just have to make the most educated decision I can & focus on fixing this & getting better.  Thank you again for letting me know that I’m in good hands, helps me worry less & relieves some anxiety 😊

 

Kiana

Dr Remzi is an amazing surgoen and is now in NYC but he did my surgery at the Cleveland Clinic.  This was the 3rd attempt for me and I believe will be the final.  I just had a check up with Dr Shen and he stated numerous times what an amazing job Dr Remzi did with the new pouch.  He said it was perfect.  I feel fantastic and if something were to happen down the road I would definitely be looking Dr Remzi up!!!!

I would say Dr Remzi.  If you can go to NY, go.  We have beeen using the docs at Weill Cornell.  In addition to UC, my son also has PSC.  We started there because of the PSC and continued but my docs there have been co silting with Dr Remzi on my son’s case.  He has a leak that won’t quit along with an abscess.  Then leak is at the astasmosis, I can’t spell.  The stitching line for lack of a better explanation.  The surgeons, doctors, nurses, everyone, as been wonderful.  Jeff has spent thenbetter part of the last four years in an out of the hospital with no end in site.   Our surgeon is Dr. Shulka.  Then we have a bunch of others involved in his case.  Have you tried Interventional Radiology?  They have been a huge help. But as of today, we are in a wait and see mode.  Another MRI in four weeks.  We’ll see.  Good luck to you!

 

dianne

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