Hello I'm new.will make story short.have immune disorder psoriasis, arthritis, collagous colitis. I'm 60 and move around pretty good but 15 years of the gut pain, accidents,and running to the bathroom 12 times a day .I made decision to have colon removed 5 months ago in NY by surgeon fenza remzi. All in all I would say life is better now then it was.no more gut cramps running to bathroom and and the stress is better. Bag is not a perfect world. 50% of the time I don't know it's there 50% it can be a pain in the a--.the big question. Surgery for j pouch construction set for April stage 2.do I leave good enough alone or go for it and how about the surgeon anyone have experience with him.first Surgery was tuff for me but bounced back in 3 months. Would love to your suggestions. Thank you.
Hi BC i would think with colitis being present a j pouch would,nt be advisable, i had UC before surgery and a j pouch was,nt recommended so i had ilieostomy surgery. good luck
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First welcome to the site. There are so many here that can give you success stories of their j pouch surgery, however, an equal number had unsuccessful results. You alone can make the decision . Do your research and make an informed decision. Good luck to you.
Hi,
So I took some time to read about your surgeon. He was trained in colorectal surgery at Cleveland Clinic and was the head of that surgical department for several years....CC is the #1 hospital for colorectal surgeries and it sounds like they are trying to set up something similar in NY since numerous Drs there have seen the dire need for better IBD care for patients. Have you asked your surgeon specific questions such as how well he thinks you will do given your medical history? The type of colitis you have is not as common but based on him being at CC before where he is now, I'm thinking he's seen it all. I don't have the J-pouch...I have an IRA (ileorectal anastomosis) and have done really well with my reversal, but it's different than a J-pouch. I went into the reversal surgery fully aware and accepting if this reversal doesn't work for whatever reason I am ok with going through another surgery and getting an end ileostomy. I'm also only a little over a year in, so time will tell, but I am not miserable. I actually feel a bit bad sometimes talking about my reversal because 1) a lot of people don't have the option at all 2) a lot of people have a lot of trouble with their reversals. There are a lot of former J-pouchers on here, there are people in the middle of their J-pouch surgeries on here, so you've definitely come to the right place. Your surgeon has a really good track record and extensive expertise with colorectal surgeries. At the end of the day, it's your body. You get to decide what you feel is right for you. You're in a place a lot would envy because you have a choice right now.
Hi
First welcome to the site. I agree with everything that Jodie has said regarding answers. At the end of the day we on here can give you advice and so can your consultant BUT the decision is down to you and only you. Good luck with what ever you decide. XX
Hello B
I had a J pouch in late 2016 and it was a disaster, cuffitis and pouchitis made it unbearable. Went back to ileo in 2018 I think from memory. All I got out of it was I won't die wondering if the pouch would have worked for me or not. If discussing the successful pouches with the doctors, try to thoroughly question how many of the documented successes really have a good quality of life with the pouch, the line can get quite blurred there.
G-Day Blackcloud, I totally agree with Axl. I had a J-Pouch for 18 years and also got cuffitis and pouchitis plus having to wear pads at night because of accidents. 3 years ago I told them to get rid of the J-Pouch and I now have a permanent Ileostomy and got my butt sewn up and life now is perfect. Regards IGGIE
Ahh Blackcloud, tough decision. I've heard of Dr Remzi, he has a good reputation. I used Dr Khaitov with Mt. Sinai who was incredible for all four of my surgeries. He managed to do everything laparoscopically, unbelievable. Having said all that, I would ask as many questions as possible of your doc before having the j-pouch surgery. Will your immune disorder and colitis continue to attack what colon is left, which is the rectal stump? What is the success rate for someone with the health issues that necessitated your ostomy? Does that number sit well with you? I'm envious of those on here whose surgeons are honest with them and offer them all kinds of options, including keeping their bags. It helps with making the decision to reverse or not. I hope the responses you get on here help you make yours. 😊
Thanks for your imput.why do I only hear bad things about j pouch. And the recovery. Research tells me 90% success rate.but I don't hear anything good about it.i don't want to back to wearing pads in underwear at night. Running to bathroom. Crapping in pants.and not be able to travel. 5 months with ilostomy only maybe 4 leaks.what hard decision to make here.it took me 5 years to make the decision to have colon removed. Saw remzi in 2016 in Cleveland and just did it. Running out of time.are there people out there with a functional j pouch the goes to the bathroom 6 times a day .I could handle that.
I'm afraid that if I go forward with it and I need the bathroom 10 times a day at work on my 12 hour work day .they will let me go .my job requires not stop repetitive motion.
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Maybe one of our former/current J-pouchers could start a post on J-pouch stories...the good, bad, the ugly and it would be an easy reference for people considering it :)
(and yes I checked, although I didn't try the AI thing, I forget it's there, but there was no simple J-pouch title that comes up)
My surgeon told me it's 50/50 and I very much doubt the quality of life for a lot of them. Some people try to live on a permanent rotating schedule of anti biotics to survive for pouchitis and cuffitis but it does seem the pouch sort of works for some.
Blackcloud, can your doctor put you in touch with a successful case so you can speak with that person directly? That may really help you feel more settled and confident in the reversal process for you.
www.jpouch.org but the posts are mostly from folks who are having issues with their j-pouches.🤔