UOAA Discussion Board

I’m new to the board and would like some advice. I will soon have surgery for UC and am debating between the J-pouch and stoma. I have a fairly active lifestyle – work outside, play golf, go to the lake, ride a 4-wheeler, travel. Would wearing the bag get in the way of these activities? Can you get it wet? From what I understand, I would be needing to use the bathroom fairly often with the J-pouch and I wouldn’t always be near one. The bag seems like it would be less complicated. I appreciate any advice you can give me.

Tony, welcome to this forum. I had a J pouch for 30 years and did have to use the bathroom more frequently than the average J poucher. I was able to adapt my lifestyle to accommodate this since I strongly did not want an ileostomy with its associated issues. I was able to fully enjoy alpine skiing in the Rockies, equestrian competitions, international travel, perform heavy labor, work a full-time job and fully enjoy intimacy. Most people with J pouches have satisfactory results with them. If you were to have an ileostomy first, you would probably have your anal sphincter removed and not be able to get a J pouch at a later date.

If you decide not to get a J pouch, there are two alternatives to a conventional ileostomy that do not require having an external bag: the Koch pouch (K pouch) and the similar BCIR. There is a lot of information on the internet about both of these procedures, which have a high degree of success and patient satisfaction. I opted to get a BCIR when a malignant polyp and recurrent high grade dysplasia made removal of my J pouch necessary. I empty my internal pouch 4-5 times a day at my convenience with a small plastic catheter and cover the button hole size stoma with a small absorbent pad. There is no need to carry extra supplies and a change of clothes with you in case of an “accident”, as you would with an ileostomy. I am able to eat almost anything I want, participate in all the activities I enjoy, not be concerned about the location of the nearest restroom, and experience intimacy without limitations. As with any major surgery, there is a chance of complications that you should be aware of before making your decision. Be sure to post any questions you have, and best of luck with whatever you decide to do.
Bill

Hi Tony,

I've always given this advice: If you can keep as much of your original plumbing and still be healthy, then do so. Having the choice between internal plumbing and having an appliance, I would always choose the internal plumbing...as long as I could also still have quality of life. That said, you can still do all of the things you listed with and without an appliance. I have a permanent colostomy, and I am still able to drive, go to work, hunt, fish, camp, swim, scuba dive, have sex, go bowling, play laser tag, be a husband, be a father, etc. Obviously there will be a period of adjustment with either choice... don't let the change in plumbing limit who you want to be. There will be struggles for sure, and questions to ask. When you hit the struggles or need answers, this board is here. Hope that helps.

David

Tony:
I have had an end ileostomy for 6 years and will say that living with my stoma and pouching system is simply no big deal.

Yes . . . There is a definite learning curve and a process of emotional adjustment that accompanies an ileostomy. But my stoma has become as natural a part of me as my fingers and toes. Caring for my stoma is on par with wearing my bifocals to see better.

Finding a best pouching system for each person is key. The pouching options available by the major manufacturers are of high quality and innovative in design and use of materials. I use the Coloplast Mio and CyMed Microskin products. I barely give notice to my wafer/pouch during the course of a day.

There is a good quality of life to be found with an ileostomy.
Karen

I like the way you phrased that (below) It's exactly like I feel. And never in my wildest dreams before having one would I EVER think I would be ok with it. Never. But I'm good with it.
Richard


"Yes . . . There is a definite learning curve and a process of emotional adjustment that accompanies an ileostomy. But my stoma has become as natural a part of me as my fingers and toes. Caring for my stoma is on par with wearing my bifocals to see better."

What is the average times per day you go with a J Pouch? Is there a diet plan somewhere that a person could print off as a guideline? If you have roids how are they effected. I guess I'm trying to see if the side effects are worth getting the J Pouch. Thanks, Tony

Hi Tony,

I had a j-pouch that failed (likely because I had Crohn's Disease and not Ulcerative colitis as originally diagnosed). I'm kind of biased because of my experience in favor of the ileostomy, but that is just me.

The "average" number of daily bathroom trips with J-pouch is about 6-10. Emptying the pouch requires you to "push out" the contents, so, yes, hemorrhoids can be a problem. This probably isn't much different from how often you have to empty the ileostomy bag.

As far as a diet plan, its pretty much the same for j-pouch and ileostomy. You will likely be told to eat a low fiber diet while you heal, after that you can introduce foods slowly. Different things work for different people so you kind of have to go slow and introduce small amounts.

As far as activities go, I travel, scuba dive, do yoga, weight lift, backpack, run, cycle, and swim with my ileostomy.

I am 53 and had my bladder removed two years ago due to aggressive cancer. I have a stoma and am able to do all the things I did before. I ride 4-wheelers too, work outside and run a business. I was terrified to do the surgery but have found that the bags has it's perks. I don't have to get up at night to use the restroom, I can pee like a guy, and have learned what close to wear so that it is not visible when it fills up. My husband has been great and it does not bother him at all. So far, so good.

I've had both a J-pouch (25 years) and now, an ileostomy (6 years).
I liked the pouch, since I could, as a younger man, use the bathroom 'normally'. But scar tissue resulted in accidents, surgeries, etc. thru the 25 years. When it came time to need an ileostomy (with anus removal) due to pre-cancerous polyps, I was terrified. Simply terrified.
Now, I wish I had the ileostomy decades aearlier! Once you accept it, it is pretty esy to take care of. Diet is the same, times at the bathroom are about the same, 6-7 times a day for either, in my experience.
If you have any medical concerns that may require a future ileostomy, seriously consider doing that now, instead of a J-pouch. Both are pretty big surgeries; why eventually go through both?
Just one guy's opinion.
Good luck to you either way!