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J Pouch Surgery

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Ulcerative Colitis
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Posted 7/24/2017 9:12 PM (GMT 0)
Hey guys,
I was wondering if anybody has had J Pouch surgery? Is that even what it is called? I am in the early stages of doing research on having my colon removed or rerouted. I'm not exactly sure how it works. All the people that I have read up on that have had it say it has changed their life for the better. I've never heard anything negative about it but my doctor acts like it's the absolute worse case scenario and she is pretty against it for some reason.

My body has rejected Remicade and I was put on Uceris but I hated the side effects and the enemas scare me. I'm starting to flare again and at this point surgery is looking better and better. Everybody that has had the surgery is so positive about it. I just wanted to get some feedback if any of you have had it or know anybody that has.
Posted 7/24/2017 10:18 PM (GMT 0)
choosing major surgeries, with some risk of death, because of fear of enema is very questionable.

But it has helped many people. SOme here. There are also some folks here who did not get a good result, but just a few.
Posted 7/24/2017 11:21 PM (GMT 0)
I guess I should clarify. I'm not choosing surgery because I'm scared of enemas. I'm considering it because options are running out and I can't seem to get into remission so I'm curious to hear about other people's experience with the surgery.
Posted 7/25/2017 12:49 AM (GMT 0)
DB you know the meds for UC can kill u also? Id rather have surgery then go on the meds for UC. I've had UC for 32 years.Disease sucks.Ash if your quality of life isn't getting any better then it might be the right choice.My colon/rectum is slowly getting worse,Colon severely scared.So surgery looks for me to be best option.Im in New York where they have some great surgeons.Im healthy so i should be candidate for surgery and everything going well
Posted 7/25/2017 1:02 AM (GMT 0)
Where do you live?

I have a jpouch. Are you looking for downsides to the surgeries?

It's usually 2 or 3 surgeries. I had 3 surgeries and I had some complications and ended up in the hospital for 54 days. I'd do it all over again, I'm so much better off with a jpouch than having UC.

Now I have the dreaded chronic pouchitis, that scares people from having surgery. It's not nearly as bad as having UC. It is much more treatable and my QOL is so much better. I am very happy with my jpouch, it is far from perfect but it's better than UC. I was dealt a bad hand and this was my best outcome.

I waited too long and took too many steroids to treat UC, it killed my right hip and I needed to have it replace this last December. Tough surgery and long rehab but I'm doing much better now.

If I could give you any advice that I've learned through my UC journey is to treat it very aggressively. If I was in your shoes then I'd try a different mechanism after failing an Anti-tnf (Remicade), I'd try Entyvio, Stelara or xeljanz. If that fails than I'd go for a consultation for surgery with a very experienced surgeons and make a decision from that point.
Posted 7/25/2017 1:30 AM (GMT 0)
Thank you for your reply ks1905! I guess I was trying to see downsides to the surgery as well as the positives and kind of what other people's experiences have been with it. I've been put on and off prednisone for 4 years and could tell everytime how damaging it was to my body. It would always cause joint pain. I hate the thought of being on medication for life, so I know one day I would like to have the surgery
Posted 7/25/2017 2:49 AM (GMT 0)
Hey Ash! Sorry to hear you are having such a rough time with this awful disease! My time with UC was short and VERY rough, and I did choose to get surgery, for may reasons. Thing is....I didn't choose to get a J-Pouch, instead deciding to have a permanent ileostomy. My big surgery was over 4 years ago now, and I could not be happier with the choice I made! Surgery isn't easy, but life is SO much better now than when I was sick and struggling. Feel free to ask me any questions, and come check out the "Ostomies" forum on this site. There are a lot of folks there with UC who now have an ostomy or J Pouch. Good luck!
Posted 7/25/2017 3:31 AM (GMT 0)
Thank you for your reply UCWhat? How many surgeries did your procedure require? I know some require multiple surgeries. And did you have any trouble after the surgery? What was recovery like? Sorry for so many questions! lol I'm so new to the J Pouch/ileostomy stuff! It's never even been a consideration of mine until about a week ago
Posted 7/25/2017 1:29 PM (GMT 0)
I had jpouch surgery 16 years ago due to refractive disease. I had it done in two steps. I have had zero regrets.

Sue
Posted 7/25/2017 2:20 PM (GMT 0)
Ash,

The 12 years that I've been on HW I've only seen 3 people out of all the people who have had j-pouch surgeries who regretted it. Two had construction issues with their pouches (that's why you need an experienced surgeon but that's not a guarantee) and one had emotional issues (woof woof).

The two above people who regretted their j-pouches liked their ostomies to begin with, they wished that they stayed with their ostomies and not had the additional surgeries (they had their pouches removed and went back to ostomies, BIG surgeries). They did not regret their colectomies, just their j-pouches (construction issues).

If your QOL is poor with UC than you may be better off with surgery.
Posted 7/25/2017 2:21 PM (GMT 0)
I had the procedure done 7 years ago. Best thing I ever did! I had it done in 2 steps. It was tough...won't sugar coat it....but entirely worth it!
My advice is if you're seriously contemplating it, interview a few different colorectal surgeons to get all the info and facts. You obviously want someone who has done many of these surgeries. I live in NJ so I interviewed a surgeon in NYC and one in Philadelphia. I went with the Philly surgeon. It's worth it to travel a bit out of your way for an excellent surgeon. Good luck with your decision!
Posted 7/25/2017 3:13 PM (GMT 0)
I had surgery a few years ago. I had 3 steps and everything went by the book really. I wasn't in the hospital extended for complications. Each step I was in and out, off pain meds within a week, back to working from home within a week. I was limited in doing activities or lifting things for a while, but not too long.

I'd love to say everyone has only positive to say about surgery, but there have been a few members here who have ended up unhappy with their decision to have surgery. I guess I understand why doctors say it's a "Last resort" - it's the unknown. When I was going into surgery, I was extremely scared. I would have loved to continue pumping my body with whatever drugs to get things to calm down and avoid surgery. Now I see that I would have done a disservice to myself to do that. Once you have surgery, there is no turning back. It's a long road, it's over the course of months... You have to have a temp ostomy. It's a hassle, but the end result can be well worth it - a life free of UC. The trade-off is going to the bathroom more often. For some people, that is not a situation they will entertain, if you can't handle going 6x a day, surgery is not for you.

Marianne is right, consult with a surgeon and see what they say. Might as well be informed. Using a very experienced surgeon is extremely important with this procedure. Do some research & consult with someone fantastic. You don't have to make any decisions, just ask questions. Fertility can be an issue after surgery so it's something to bring up.
Posted 7/25/2017 5:41 PM (GMT 0)
There are reasons we have a large intestine and it's ideal to keep your colon when your UC can be put into a solid and stable remission through medicinal means. Most try at least 2 biologic medications before going the surgery route. If you've tried everything and failed then surgery is an escape (about 25 percent of UC patients fail response to everything). Surgery provides control and predictablity and a good quailty of life to those whose UC cannot be otherwise be controlled.

Surgery isn't a first line treatment for uc due to inherent risk of an abdominal surgery, and not everyone has a picture perfect outcome with regard to bm frequency with a jpouch. There are sometimes complications like abscesses, pouchitis, decreased fertility risk, etc. Nothing insurmountable but certainly bothersome.

There are also some good blogs out there that really helped get a handle on what the process is like -
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