Managing High Volume Ileostomy with Innovative Techniques

I'm now almost three months out of medical facilities with my new, super volume ileostomy. I've tried various products and have basically settled on the Hollister lock and roll pouch and convex wafer. At times I was changing my pouch a few times a day - harsh on my seal and expensive! I cannot handle looking at waste (and yes, I've tried non-transparent but they are smaller). Last week I thought, "Huh, why can't I pour clean water through the lock and roll opening and clear out the pouch?" This has changed my life for the better. I even pack a small empty water bottle with my supplies when I go out because it's so easy to do. Do many do this? I feel a little silly that I didn't think about this sooner and just kept getting more depressed by the day. The belt my ostomy nurse gave me I now wear 24 hours a day. No more heavy pulling on my wafer when my pouch gets full.
Any little tips and tricks greatly appreciated!

Hi hangster,

First thing I'd do is deal with the 'super volume' aspect of your problem. Why do you have 'super volume'? Can you reduce that by better understanding how your digestive system works and what you eat and when? There's a lot of info to digest with all that, but I'd start by first understanding how your digestive tract was changed... i.e., what parts were removed... and what the implications of that are to your output volume. Once you understand what and why your bowels are doing what they do... or no longer do... you can focus on what you eat to control that volume... and when.

As for the water rinse... sure, lots of folks do it. You have to be careful though because water will break down your barrier and ring hydrocolloid material pretty quickly. To see if yours are affected simply snip off a small piece of one of your new barrier rings and toss it in a cup of warm water. Then check it every hour or so and watch it turn to mush. Mush doesn't adhere to skin very well... so you know where this is going.

The belt is a great idea which I recommend highly to everyone. Takes a bit to get used to wearing the darn thing all the time, but it does provide a great peace of mind, and will save your butt from total embarrassment if your barrier decides to stop sticking to you while out in public. Also helps your barrier stay attached when you sleep if you cinch it up tight when laying down.

So lots to learn for sure, but worth it to make this ostomy nightmare manageable. Just keep 'hanging in there' if you pardon the pun!

;O)

Hi there,

I have used water to wash out my bag since I was 2 weeks in. That was almost 3 years ago. I have read about a couple of others doing it, and there probably are a lot more. I started because I run thick with an ileo.

Hi,

I had my ileostomy in May; it's high output.

I find that eating smaller amounts throughout the day and less toward the evening helps. Marshmallows, according to a study, are supposed to slow output. They will thicken it too.

When I was using the stick-on bags, I didn't use water much to wash them out because I think it caused leaks. Also, I had leaks under the ring.

I switched and now use clip-on and paste; the clip-on has a bigger wafer which I think helps secure it to me. I wash out the bag a lot more but don't let it get up near the stoma where the seal is, so it won't break down. I've never gotten a belt, but will likely try to get one.

I haven't tried many different foods and introduced something new to see how things pass through.

Everyone does what works for them and has differences. I find by trying out different things, I'm getting used to what works.

Desiree

Yes, I rinse after each empty. It does decrease my wear time. Before I learned about rinsing on this site, I would just use toilet paper and swipe out what I could - I could wear my appliance for 4-5 days but still used a fresh bag every 2 days. With rinsing, I typically change everything every 2 days and rarely 3 days. Typically on day 3, I start to detect a faint odor, which means a leak is starting.

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G-Day Bob, I was thinking about your experiment with a seal and putting it in water. I have always rinsed my bag out with water and never had a problem with the seals, and that's because when you rinse the bag out, the water is only in there for a few seconds. But you said to leave the seal in the water permanently, which is too much, Bob. Also, we ileostomates have a watery outlet most of the time, and it holds up to that exposure. Hope you're keeping well. Regards, IGGIE

Thanks for all the valuable info - I'm trying!

About ten years ago, I had a temporary colostomy and used a pouch for about two months. This ileostomy is 100% different and much more to manage. I pour water in through the pouch bottom, and everything flows back out with it. I've never had an issue with any seal issues.

Hi Ig,

The purpose of my experiment is to see what happens when the hydrocolloid material is exposed to water. The effect water has on it is cumulative, so while the experiment is an exaggeration, it shows what the effects of water exposure are to that material in an accelerated manner. You could, of course, do the experiment where you rinse the ring piece in water for a few seconds each time you empty or rinse and watch it degrade that way, which as you point out would be more in line with how people do things. But if you sleep on your back and your output puddles around your stoma (especially if your barrier is convex)......dropping that barrier piece in water is a more realistic representation of what's happening while you sleep.

I did the rinse thing early on and had lots of leaks on a very flat abdomen, while when I didn't rinse I had no such leaks. My point is water (and output) will degrade the hydrocolloid. Obviously, exposure time matters, and as I said earlier, it is cumulative (additive). Once the hydrocolloid begins to degrade, the process only moves in one direction......it doesn't fix itself. My experiment was suggested just so people can see for themselves what effect a water rinse......or output......has on the sealing material. What each does with that info is entirely up to them. I'm not trying to suggest a piece of hydrocolloid in water simulates everyone's situation, just showing the one extreme so they can see the end result without having to do a more complicated experiment. Knowing what's going on with your barrier material might make it easier to figure out why someone is having problems with leaks. I proposed the experiment simply to help people who want to know if water degrades their barrier/ring understand what's going on, as it's not intuitive. I think it answers that question quickly and accurately, but is merely a suggestion to quickly answer a question, not a realistic simulation of everyone's experiences.

The lesson here is as you said......rinse quickly and don't push the rinse water so high up the bag it comes in contact with the seal around your stoma. I guarantee you if you just told 10 people to rinse out their bags with water they all do it to varying degrees, some being very careful and not pushing the water up too high in the bag, and some would slosh it around all over the place. Knowing what the ring does when exposed to water just gives folks a little insight into the cause and effect of what they do. I think my experiment answers the mail on that one, while being very simple and quick. But I'm not suggesting it's realistically simulating what everyone is doing while rinsing. Sorry if it came across that way!

;O)

Very detailed explanation, Bob. I think it all comes down to not trying to get too long out of changing your bag; 3 to 4 days keeps everything fresh and working at maximum capacity. Regards, IGGIE

Agreed. I change my barrier on Day 4 despite being able to go longer. I'll change it on Day 3 if I feel any itchiness or something just not right, so I can catch what's going on before it makes a mess.

:O)