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the BEST J-pouch surgeons Recommendations needed!
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I have had two bad GI doctors and am feeling quite burned out on the whole medical community. I have been on Remicade since 2008 with mostly positive results and went off of Remicade after I became pregnant. I had the discussion with my GI about the pros and cons of going off of Remicade for the pregnancy - he was basically like, "Whatever you decide- you can go either way." What he failed to realize and I soon found out after getting back on the Remicade after the birth of my baby is that going without the Remicade for awhile causes your body to produce antibodies to the drug and it resulted in a severe allergic reaction on fourth dose back. Needless to say, Remicade was the last option for me. I can't stay on prednisone forever. I am considering surgery and I have learned through research that that J-pouch success depends greatly on the skill of your surgeon. I need recommendations of surgeons from those of you who have had successful J-Pouch experiences- especially if you have had a baby post J-pouch. Please share names and locations of your surgeons. I would appreciate it so much. Trying to stay calm in SC.
 
Posts: 12 | Location: South Carolina | Registered: June 21, 2012Report This Post
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Hi!... We exchanged some posts on healingwell. Also post this in the general disscussion forum to maximize the the number of people who will see it. Sometimes people dont scroll down past that forum. I'm in NJ so i can't help with a recommendation in your area. Good luck!


Marianne

DX UC (pancolitis) 2005 when I was 37-Family history of UC
Tried every drug and diet....all failed
Step 1- 6/25/10 (Laparoscopic restorative proctocolectomy with temporary diverting loop ileostomy)
Step 2- 10/8/10 (take down)
Very pleased with my results.
 
Posts: 2631 | Location: NJ | Registered: September 10, 2010Report This Post
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Thanks, will do. But I will travel for the surgery - I'm almost certain I am not going to stay in South Carolina for the surgery. I've had pretty crappy care so far at my local hospital.
 
Posts: 12 | Location: South Carolina | Registered: June 21, 2012Report This Post
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Many people travel to the Cleveland Clinic. I'm sure you will get some good referrals on here.Smiler


Marianne

DX UC (pancolitis) 2005 when I was 37-Family history of UC
Tried every drug and diet....all failed
Step 1- 6/25/10 (Laparoscopic restorative proctocolectomy with temporary diverting loop ileostomy)
Step 2- 10/8/10 (take down)
Very pleased with my results.
 
Posts: 2631 | Location: NJ | Registered: September 10, 2010Report This Post
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My husband had his JPouch (1 step) done at MUSC in Charleston, SC. His surgeon was Dr. David Adams. We've been nothing but pleased with the care received at MUSC. (2 major abdominal surgeries--colon removed and removal of polyps in duodenum) He has seen other doctors for other problems --always felt the best possible care was given. I would not have stayed locally for this surgery. When DH was first diagnosed, the nurse at my school said "go down to MUSC or up to Duke". You may be near one of those areas if you are in SC. Going to MUSC again Monday to see new Dr. in urology b/c of prostate issues now...
take care


Wife of JPoucher
w/FAP
w/Duodenal Polyps
w/Chronic Pouchitis
 
Posts: 18 | Location: SC | Registered: March 09, 2008Report This Post
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Definetly Dr Vernon at Newton Wellesley Hospital in Newton,Ma. Performed my surgery 25 years ago today. I also lost 18 inches of my small intestine but, have had great results. He also trained under the person who invented the J-pouch.
 
Posts: 14 | Location: Hampton, NH | Registered: March 17, 2007Report This Post
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thank you, sjb! I am in Spartanburg so both MUSC and Duke would certainly be feasible.
 
Posts: 12 | Location: South Carolina | Registered: June 21, 2012Report This Post
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wish i had looked harder; i'm having all kinds of probs now because i stayed home and went to a private hospital. go academic for best results. duke and musc are great options. best of luck!
 
Posts: 3 | Location: Louisiana | Registered: May 22, 2012Report This Post
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Thank you! I appreciate your honesty. My parents seem to be scared to have me go "away" for the surgery in case there are complications but I'm finding (and trying to explain to them) that being close to the hospital is not as important as getting an expert surgeon.
 
Posts: 12 | Location: South Carolina | Registered: June 21, 2012Report This Post
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i live in cal and if i had to do it again i would have gone to cleveland clinic..they are the best all around for jpouch anything!i am someone that had problems after my surgery and i do not think the surgeon caused problem but his bedside manners were nothing short of horrible..i spent two miserable years with this guy...at cleveland they deal with lots of jpouch problems..so i might have been helped better and sooner than i was (2 years down the road)but more importantly it would have been good if my surgeon were easy to talk to or less full of himself..

whatever you doPICK A DOCTOR THAT IS KNOWN FOR GOOD FOLLOW UP AND HAS GOOD BEDSIDE MANNERS..even with good results there are some tough days ahead in healing and you need that support..

sorry your dr. overlooked that important fact about remicade..bummer..it is something many know..but you were in a tough place one way or the other..i can understand your not wanting to cause any harm to your child with meds so you may have gone that route anyway..tough call..now you just have to go forward..keep in mind 85 per cent of jpouchers are happy with their results..but if it works and it most likely will your life will be much better without the problems you have now and the need for the deadly steroids(reason i had to go for jpouch) only thing between me and a terrible flair was steroids..

check out drs in your state mentioned and than maybe cleveland clinic..

rebe


Rebecca
 
Posts: 788 | Location: Santa Barbara | Registered: March 11, 2007Report This Post
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Hi, Dr. John Marks in PA, out of Lankenau Hospital. My wife researched him before we decided and found out many people such as pro athletes come to see him for color rectal surgery.

He is very busy and took us 3 months to get into surgery but he is worth it.

Good luck !

Tim
 
Posts: 4 | Location: PA | Registered: October 29, 2011Report This Post
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Dr. Lavery, Dr. Fazio at Cleveland Clinic. They have an amazing Digestive Disease Center. Dr. Lavery did my surgery. Also before surgery, you could try Dr. Bo Shen. He is an amazing gastroenterologist. There are more options beyond remicaid. Good luck!
 
Posts: 35 | Location: Michigan | Registered: August 01, 2010Report This Post
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Katherine Morgan at MUSC did mine. I had MANY complications and prolonged hospitalizations. She was calm, cool and so very skilled. She built me a fabulous pouch.

Karen

This message has been edited. Last edited by: karensmith,
 
Posts: 114 | Location: South Carolina | Registered: April 27, 2008Report This Post
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Dr. Remzi and Dr. Lavery @ CC. They are world class surgeons and they have great bedside manner. Nurses are outstanding and the hospital is top notch.
 
Posts: 23 | Location: Washington, DC | Registered: August 23, 2010Report This Post
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Thank you!
 
Posts: 12 | Location: South Carolina | Registered: June 21, 2012Report This Post
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