J pouch. Help

Mount Sinai Medical Center in New York City is ranked #5 in the USA as a facility specializing in gastroenterological care. Manhattan Surgical Associates, Drs. Joel Bauer and Steven Gorfine, are excellent surgeons. Gorfine did 2 of my 4 bowel surgeries and was second chair to the famed Dr, Irwin Gelernt on the other 2. No reason to go to CC or Mayo with these guys in your backyard. They have done hundreds of pouches.

May I ask when was your last colonoscopy and have you been biopsied for dysplasia?

You should be aware that there are serious complications that can arise from staying on Prednisone. Getting cancer is another possible complication of NOT having surgery and these should be weighed against the complications of having surgery.

I agree, mt Sinai in NYC is an excellent place to start to interview surgeons. I met with Dr. Joel Bauer to discuss the surgery but I ended up having my j pouch surgery in Philadelphia at Jefferson University Hospital done by Dr. Scott Goldstein who I also would highly recommend.

I had the surgery 2 years ago when I was 42. I had it done in two steps laparoscopically. I was in sad, sad shape before surgery. Uc totally controlled my life. This surgery has given me my life back.

Dr. Milsom at New York Hospital.

I had UC and failed on meds and became steroid dependant. I had surgery and although I have had some bumps in the road- often connected with unrealistic expectations- this is still way better then a steroid UC life. Itis not a reversal to pre- UC days buit better than ill health. Good luck

i just had the second step of 2 done and both steps were done by dr. procaccino. he is the chief colorectal surgeon at north shore university hospital in manhassett, ny.

he is considered to be the top surgeon for j-pouch surgeries on long island. he trained at the CC and he has performed about 180 j pouch surgeries. i highly recommend him and his staff.

good luck with your decision. the good thing is that you have excellent choices in your own backyard.

peace,
mark

You've come to the right place for info and support. UC ruled my life until I had this surgery. That was over ten years ago and I haven't regretted the jpouch decision at all! Don't listen to "horror stories". Most of us who have had wonderful results do not post here. We are too busy living life! Best wishes!

Tina-same story here..I'm 42, mom of 3. I HAD UC, failed all the drugs, was getting sicker, getting depressed as I couldn't grasp the idea of this surgery. I started talking to colo rectal surgeons and other GI Dr's for opinions-all recomended the surgery. I was horrified by the possibility of complications (and I had them on both surgeries) not to scare you but if you are sick going in and on prednisone as I was it's more common to have a complication. My surgeon told me there's no complication they can't handle. With all this being said, today I am doing great. I have my life back. I eat EVERYTHING!! I exercise. I work part time. I socialize, shop, dine out, etc. I'm 3 months post takedown go about 6 during day and 1 in middle of night. Yes the surgeries were soooo tough both physically and mentally and I feel I lost 6 months of my life but now I can be a better mom and wife. Just be sure to be in the hands of an extremely reputable colorectal surgeon with lots of j pouch experience. Did you notice I wrote HAD UC? I love writing/saying that also add drug free to that too. PM me if you want more specifics on my experience or details of anything. Stay strong

Tina - Keep positive, surgery could save your life! I was diagnosed with UC at 14 yrs old. Had j-pouch surgery at 22. I'm now 35, living in NYC, working as a professional dancer/choreographer and pilates instructor. I have more energy and motivation than ever before! The surgeries have improved since I had mine, so that is a plus!

My advice is to go into the surgery as healthy as possible. I was in remission at the time of my surgery and I think that helped a lot. I had a complication with scar tissue, and it was rough, and it took a good 6 months to feel good again, but it was SO worth it.

Although this surgery has helped many of us, I think it's important to remember that our body was reacting to something, so it's our responsibility to eat clean, exercise, and get enough rest after the surgery "cures" UC. Our body deserves the best treatment after going thru hell. This disease and many other inflammatory diseases are wake up calls to the state of our health. I have learned to listen to my body and leveraged other resources (pilates/yoga, craniosacral therapy, herbs, acupuncture) - preventative healthcare!! - to keep my body strong. Best wishes!!

It is best to interview to a few surgeons about the j-pouch. You will get to know the surgeons and find out who fits your needs best while understanding more of what the j-pouch has to offer. Like many others have said, there are lots of great surgeons in the NYC area.

As far as the horror stories. You will find them everywhere for every ailment. Most j-pouchers are happy with their quality of life after surgery. Me included.

Tina - I am also in NY and considering j-pouch surgery. I have been doing some research to find the best possible surgeon and have come up with this list based on the suggestion of my GI, another GI who trained in NY and thanks to the kind people on this forum and healing well.
1. Dr Joel Bauer
2. Dr. Adrian Greenstein
3. Dr. Jeff Milsom
4. Dr. Randolp Steinhagen
5. Dr. David Chessin

With the exception of Dr. Milsom, all the other doctors are affiliated with Sinai. I am told that Sinai is a great place to get j-pouch surgery and with Sinai being in the city there is no reason to travel to Mayo or Cleveland clinic. Good luck with your decision, but I feel for people like us who have drug refractory UC, surgery is the only option!

Marianne - Do you mind sharing why you decided to get the surgery done in Phili after meeting with Dr Bauer? What about your meeting with him made you decide not to go ahead with him? Sorry for being so nosy, but I am really curious as I have a consult with him coming up and would love to know the reason.

Thanks a ton in advance!!!

UC Warrior - I am also on vedolizumab 4 months in and not seeing much improvement - although I am now able to sleep through the night which is a plus but otherwise still going to bathroom 7 times a day. How are you doing on vedolizumab? Is it working for you? How many months you been on it?

Hi PKitty...I have also been on Vedo for about 4 months. I have my fifth infusion on 31sr Dec. I did see some improvement initially. The bleeding stopped, starts having formed BMs but was still going to the bathroom 4-5 times a day. However, things have gotten worse over the past few weeks. The bleeding started again, the stool is loose now and I am going to the bathroom more often with urgency. I am waking multiple times at night which is why I am posting this at 5:30 in the morning!!! So, it is definitely not putting me in remission and my GI thinks there is no point in continuing on like this.