Continent Ileostomy WOC Nurse Questions/Feedback

I still remember the first time I emptied my pouch. It would have been helpful to know to use a syringe to flush the catheter. Also, it would have been helpful to know that I should rinse the catheter using a cup of water, while still sitting on the toilet. I don’t think I got much training from the nurses. I now use baby oil as a lubricant, instead of surgilube—I use a smaller squeeze bottle and it’s much easier to use.

I still remember the first time I emptied my pouch. It would have been helpful to know to use a syringe to flush the catheter. Also, it would have been helpful to know that I should rinse the catheter using a cup of water, while still sitting on the toilet. I don’t think I got much training from the nurses. I now use baby oil as a lubricant, instead of surgilube—I use a smaller squeeze bottle and it’s much easier to use.

First, I think its awesome that y'all are reaching out to the community to better help us and new k-pouchers!

I, too, don't remember much talk about how helpful irrigation can be.  Especially when output is sludgy.  Warm water is the most effective, and those big 60cc bulb syringes are fantastic.

I wish I had known more tricks.  For instance, some of us carry collapsible cups like for camping while we are out and about, easy to stow and use.  Ziplock bags are pretty much the ideal storage container for your catheter.  They come in different sizes so you can pick how much your like your catheter curved, they are cheap and easy to replace.  If you feel uncomfortable rinsing your cath in public bathroom, no sweat, just put cath in ziplock bag and clean once you are home.  You don't have to use expensive stoma caps to cover your stoma.  I've used nursing pads, menstrual pads cut into good sizes, gauze and tape, and 3x4 bandaids.  Some people just use toilet paper held in place by underwear   You don't actually have to use lube to get your catheter in, so don't panic if you don't have some on you, there's usually enough moisture and stoma mucus to slide it in.  I have even spit on the end of my catheter when I was hiking once for a little extra help.

Many k-pouchers are coming from failed j-pouches or ileostomies and in both of those cases slowing and thickening output is important.  But with a k-pouch the thinner the output, the easier and faster it is to empty.  So, that being said, a greater emphasis could be placed on adequate hydration, especially electrolytes.  I have found that just drinking a lot of plain water is not enough, I have to drink something with electrolytes almost every day.

Also, I wasn't told to avoid large pills like multivitamins,  I found out a few years later.  They aren't usually digested well and won't fit through the holes in the catheter so they can actually build up in your pouch.  Dr Shen called it "k-pouch pharmacy".  I have had large pieces of Tylenol, antibiotics and vit C tablets come out my pouch, so now I use only gel caplets, chewables, gummies or liquids.

Finally, put them in touch with the k-pouch community here and on Facebook.  Having someone else to talk with about issues has gotten all of us through the hard and scary stuff!

Thanks for all you do!

I am so thankful your help!

After the surgery my doctor gave me written instructions on how/when to empty my pouch. This included flushing the pouch with a syringe. He gave me a syringe. But he was not able to advise on living with it daily which is when I found this forum. After awhile using the syringe became a problem due to the rubber stopper on the plunger getting old and getting more difficult to push. Finding and buying a proper syringe was a medical supply. On this forum I found another way to flush the pouch using a disposable enema bottle. Then I found other different  bottles on the internet. The enema bottles and the other type bottles I can get anywhere. I don't need to order from a medical supply place. And since the enema bottles are smaller than a flush syringe it makes it easier to carry around in my medical supply case. I have found this forum to be very helpful. I hope you are able to find the discussions on using alternative supplies for irrigation of your pouch.