Hello, I'm new. I will make the story short. I have an immune disorder: psoriasis, arthritis, collagenous colitis. I'm 60 and move around pretty well, but 15 years of gut pain, accidents, and running to the bathroom 12 times a day led me to make the decision to have my colon removed 5 months ago in NY by surgeon Fenza Remzi. All in all, I would say life is better now than it was. No more gut cramps, running to the bathroom, and the stress is better. The 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 is set for April, stage 2. Do I leave good enough alone or go for it? And how about the surgeon? Does anyone have experience with him? The first surgery was tough for me, but I bounced back in 3 months. I would love your suggestions. Thank you.
Hi BC, I would think with colitis being present, a J-pouch wouldn't be advisable. I had UC before surgery, and a J-pouch wasn't recommended, so I had ileostomy 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.
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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 doctors 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 okay 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 whatever you decide. XX
Hello B
I had a J pouch in late 2016, and it was a disaster. Cuffitis and pouchitis made it unbearable. I 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. Three 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. 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 input. Why do I only hear bad things about the J-pouch and the recovery? Research tells me there is a 90% success rate, but I don't hear anything good about it. I don't want to go back to wearing pads in underwear at night, running to the bathroom, crapping in my pants, and not being able to travel. Five months with an ileostomy and only maybe four leaks. What a hard decision to make here. It took me five years to make the decision to have my 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 that goes to the bathroom six times a day? I could handle that.
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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 workday, they will let me go. My job requires nonstop 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 :)
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(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 antibiotics 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. 🤔
I had my J pouch surgery and reversal in 2017, and have had nothing but success with it. Because of my severe ulcerative colitis, I didn't really have a choice. I hated having an ostomy, mostly because I just couldn't get the hang of it. I was depressed and felt so alone. The reversal was challenging, yes, but I got it done a week after getting married (instead of our planned honeymoon to Aruba) since I just wanted the pouch gone!
After the takedown surgery, I stayed home a lot and it was difficult to hold stool for a while, as my pouch had to adjust to holding stool. But honestly, it has changed my life for the better. I can eat what I want (mostly), go places I couldn't go before when I was having accidents and going 20+ times per day, and I feel way more confident than when I had my ostomy. If I had to have an ostomy all the time, I'm sure they would have changed it from a loop ileo to a permanent one which would have made things easier for me. And I'm sure I would have gotten used to it. I just prefer having the plumbing hooked up!
It's your personal choice but honestly, I'm glad I did it. I take a fiber pill, probiotic, and put cream on my bum a lot because of the acidic nature of passing stool so much (and it's usually loose stool). But it's just normal for me. I also have a ton of gas that I can't pass unless I'm sitting on the toilet, but that's not a big deal. Even though I may be loud in a public restroom, I'm over it!
I hope this helps give you more info from the positive side of having a functional J pouch. Good luck with your decision.