Upcoming J-pouch surgery. Need advise.

If you do three steps (as described in my signature), you can have the first step (get the colon out and get an ileostomy) and try the ileostomy before deciding if you want to make it permanent or go forward with a j-pouch.

How many steps did your surgeon discus with you that it would be done in? I had a two step procedure so my first step included the j pouch creation. If you have it done in three steps you'll have time to decide if you want to scrap the j pouch idea and just keep the ileostomy.

I'm really happy with my j pouch. But I just knew in my heart without a doubt that's what I wanted. I knew I didn't want a permanent ostomy. My sister and uncle both have long time j pouches and they have done great with their too. Good luck with your decision.

I'm really happy with my j-pouch, which I've had for about a year and a half. I had pretty bad ulcerative colitis but my two surgeries were both very successful. Even though my ileostomy was better for me than having colitis was, having the j pouch is awesome. I have no urgency when I need to go, and there is no inconvenience with changing bags/pads. I go to the bathroom six times a day but it still beats being chronically ill.

Hi! While I've had some issues with the J-Pouch and am back to a permanent ileo for the third J-Pouch revision in the fall, I think it might be a good idea to go with the numbers, factor in our age/health, etc.

Chances seem to be in your favor that a J-Pouch will be a good investment for you and a permanent ileo is always an option.

That's my opinion! Best wishes.

Thank you everyone for the responces. Can anyone offer insight as to urgencies. I hate my life revolving around bathrooms. I can't walk into a building without spotting the bathroom first or planning a trip and trying to plot bathrooms along the way. With a j-pouch, how much time is it offering for you to get to a bathroom in time. Also leakage. Does anyone suffer from the pouch leaking unexpectedly and is passing gas an issue. I appreciate all the insight. :-)

Most important!!! have a private nurse for the first 36 hours after the major surgeries. insurance covers and there job is to make sure that the pain meds are given when needed and not just when the floor nurse is available. I have had the pouch for 28 years at age 21 and wish it had been done sooner. Assuming no major complications these are the downsides. I ALWAYS run the faucet on high when I am in the bathroom. You will be noisy and you will be the person going upstairs at a friends house to use the bath. For me, overnight camping, full day fishing trips on boats with no baths, more than eight hours away from a bathroom is a risk, unless that sort of thing does not bother you. When we visit a friend or relative for a trip we insist on our own bath. I find that sleeping on my back creates the greatest chance for leakage. Some minor leakage may occur at night that tissue will prevent from moving beyond the acceptable area. You will sometimes find wet spots on the underwear. Just change them. Not including any further potential physical problems, it has affected my life minimally. I use lomotil. Make sure that they remove the entire colon, including peeling the lining off of the anus. You want to preserve as much muscle as possible but eliminating ANY chance of colon cancer makes it worthwhile. There is one more thing. I did lose sensitivity in the sexual arena but actual performance has never been aborted. The issue for me is that I can go ten minutes to four hours or more without Viagra but it is once only for at least ten hours. Not the usual problem unless your partner only has a couple hours. I did a three stage because I was so ill. Six months with an end ostomy, followed by two months with a loop. By the time I was connected there was no pain. Just accept that you will poop the hospital bed the first nigh you have food. Maybe you can request extra sheets before the fact. I had to find the sheets and change myself. Keep in mind. The post surgery hurts far less than the disease.

Have had the j pouch for 23 years, but had I known then what I know now, I would have went for an ileostomy. I am more concerned about long term health, than image, which is why I wished I had gotten the ileostomy.

I just celebrated my 2 yr anniversary of my j-pouch. It was a tough year and a half for sure. I am still aware of where the bathrooms are think it is just living with all those years of having UC. My j-pouch is pretty consistant these days. I do plan my meals around my travels away from the bathroom. I know what times of day are good for me to do all my running around and errands and when my j-pouch is the most active. I thought for sure I should have kept my ostomy at first but I am so glad I did not. I hope you come to the right decision. If for any reason though I had to go back to it I would be ok with it.

Thank you all for your responses! Has any one ever had the j-pouch surgery complete and end up reverting back to a permanent iliostomy? I guess I would want to know that if I had the j-pouch done but end up experiencing constant issues if I can revert back to a permanent iliostomy.

My doc did tell me that healing time could take up to 3 years, and to have patience. I am glad I listened to him because after the 1st year I wanted my ostomy back. But life has gotten so much better now. It does take time for some, everyone heals differently.

I had a J pouch for 30 years and can relate to what the other posters have said about their experiences. I developed techniques for dealing with problem issues such as frequency and skin irritation. One of the best things I did was install a bidet, which allowed me to keep the area clean and control itching and burning. Although I went all the way and installed the “real” unit, there are units that install in place of the toilet seat. Unfortunately, I developed high grade dysplasia in the anal area and the pouch had to go. Having the bag was not, in my mind, the quality of life I wanted and I was fortunate to have a surgeon do a BCIR (similar to a K pouch) for me about a year ago. Although the first 3 months after surgery presented challenges, everything worked out well in the end (no pun intended). You will want to give your new J pouch plenty of time before even considering alternate procedures. Be sure to visit this board often since there is lots of first hand experience out there.
Bill

Did he say though that if you wanted to go back to a permanent ostomy that you could? Also I see a lot of people saying they time their feedings. How long does it take from when you eat to the time you have an urge to go? Or is that a question that can't really be answered because everyone is different?

Yes, you can revert to a permanent ostomy if the j-pouch fails. But, it is a BIG surgery and not a simple thing. So, I don't want you to think it is like opening a zipper and flipping a thing-a-ma-gig around, easy peasy. The ostomy is easy, but pouch removal is a long, difficult procedure.

This is why it is a difficult choice. However, it is important to understand that you cannot go the other way; by choosing a permanent ileostomy and deciding to have a j-pouch later. Once the rectum is removed, a j-pouch is not possible.

Having a j-pouch does not restore you to where you were before you had UC. There is NO surgical option that can do that. The j-pouch is about as close as it comes though. Once I got past the adaptation phase, I was able to go on long car rides, go hiking and snorkeling, fly to Europe and walk the cities all day. I went camping too. I enjoy all my favorite foods, including fruits and vegetables (so much that I have to really watch my portions!). Plus, I need no special equipment with me all the time. I have never been incontinent, except for some leakage when I was sick.

The trade off is that I cannot fart clean. I have to release gas on the toilet. I need to take bowel slowers. I also need to have periodic scopes of my pouch. To me it was a reasonable trade.

Jan

Thank you everyone for your responses. I have a confirmed surgery date of March 25th to do stage 1. Can't wait to start feeling better and continue living my life! I appreciate everyone for their responses and its good to see people having luck with the j pouch.

Thank you for posting this question! I just joined the board today to ask the exact same thing - sort of. I got an emergency ileostomy on January 5, 2014, and I like my exterior bag just fine, now that I'm used to it. However, I am going to be back at work soon, and so far I am not comfortable going swimming or dressing in anything but baggy clothes.

My ileostomy surgeon made sure to make it possible for a j-pouch in future, and now she has taken the liberty of booking me a consultation with a j-pouch surgeon to discuss it.

I am really torn between the convenience of the (expensive) ileostomy, mainly because I am so very thankful for it and the relief it gave me. I am very worried about the risks with getting the j-pouch, and after reading some of the posts here, it seems the end result COULD be as uncomfortable as the UC, what with leakage, urgency, frequency, possible infection etc. But at the same time, it would be nice to not have the expense and obviousness of a bag... Sorry. Typical Libra I am - can't make a decision without weighing all the options endlessly back and forth.

Anyway - I have no specific questions right now, since there is so much information here already. So much reading to do!

If your ileostomy is working good for you, I would stick with it rather than risking j pouch surgery, possible complications, pouchitis, etc, etc, and then more surgery to remove the pouch if it doesnt work out. JMHO

I had a J pouch for 30 years and my main complications were frequency, skin irritation and some incontinence. However, I adapted to these problems. Keep in mind that many of the posts on this board involve “problems” people have experienced with their pouches and solutions that are offered. A high percentage of people with J pouches (possibly 85+%) are satisfied with them (at least enough to not opt for an alternative) and most do not visit this board. There are no guarantees of good results with any of these surgical options, including the end ileostomy. For me, it was a quality of life issue, and I vehemently wanted to avoid the bag. If you decide to have your bottom closed up, a J pouch will no longer be an option. You would still be able to have a BCIR or K pouch which would avoid having an exterior appliance.

Bill