Success with Ostomy Irrigation - A Life-Changing Upgrade!

Hi.
I'm a 41-year-old with rectal cancer. I had everything "down there" removed a year ago and an ostomy installed permanently. I know there are different kinds of ostomies, but I don't know what kind I actually have.

So, the surgery was a shock, my new body overwhelming, so at first when I heard of irrigating, it felt beyond me. However, a few months ago, I was browsing YouTube and came across the below video. I checked with my medical supplier, and the prescription on file included irrigation supplies. So I ordered them after watching the video and tried irrigation when I had a few hours alone time. I was successful in my attempt, and I wore the stoma cap, which is a very small bag, for twenty-four hours with only little leakage into the cap for a few months, irrigating every morning. I have also skipped days with little leakage into the cap on the skipped day. It takes about an hour, and interruption is really intimidating at first, so consider it not an option, but now that I'm comfortable, I put a snuggie on with the back open and another one on (holding the sleeve end I'm already wearing tight as I put on the second one so they layer flat for me) the other way so I'm ensconced in privacy visually, but my body and bag are very free and easily accessible and can be removed easily and put on again for walking around intermittently. You can even answer the door for a delivery this way if need be. It looks like a caftan, ladies and monks' robes for you gentlemen.

Currently, I am in irrigation celebration mode. It's such an upgrade of life for me. I only wear a band-aid over my stoma during the day and night while I sleep. Sometimes there is some expressing, but I just change the band-aid; easy. I use the four-by-four ones that seal around the stoma but allow everything to breathe. Even a tablespoon of loose leakage is stopped and held in place until you can change, even if it means "not immediately". Solid leakage of small amounts is just a quick change too when convenient, but you can smell it. Others say they can't, but I can. To address that, I find that folding up a piece of gauze and putting it directly on the stoma and pressing the stoma flat while pressing on the band-aid to adhere helps in noise reduction while lemon oil or even Desitin on the gauze is really a social aide. If you use lemon oil, fold it into the gauze to avoid membrane contact cause there's no nerves there. Desitin can cover the stoma to moisturize, and the scent floats quite a ways. Also, gas is less frequent with irrigating, constipation is also eased.

During irrigation, I've also found spraying a fine mist of oil into the water of the toilet prior to emptying the sleeve into the water and immediately flushing minimizes smell during irrigation in the home. The oil creates a smell barrier, and the bag empties right into the water just below the surface if you choose to arrange it that way. Then you clean the end of the bag and wrap it with some paper towel or toilet paper and tuck it up into the belt, and you can ... as the guy in the video says, "go make some tea".

After irrigating, a shower with lots of good-smelling hair and body product and steam from the shower eliminates any remaining smells. The biggest drawback is cleaning and reusing the irrigation sleeves. They are open-ended bags that are long enough to drop into the toilet as you stand over it. I drape mine into the toilet while I sit on a bench in front of it that is padded, and I read for a while, sometimes just hanging out in the bathroom as I see fit. But the bags are over four dollars each, and my insurance pays for four a month. Ew. I'd like thirty, please. One every day. Oh Lord, hear my prayers and deliver it to me.

I've seen a posting here for a stoma stifler, but apparently, they are not available in the United States. It might be best to post this question separately in that thread, but as an aside here, does anyone know a way to purchase with cash or insurance a stoma stifler in the US? I intend to modify it to wear under a shape wear cami just placed over the band-aid and held in place by that, no other appliances. I have high hopes for this improving my life experience given this new body for which I appreciate being able to stay in longer; I have three kids to raise! It's been an adjustment, and sometimes even still, it's a bit much to process, but it IS better than cancer pain, and I do hope to bounce grandchildren one day and stare into the grown-up faces of my now little kids, and I do have this technology to thank for that since cancer did get a good hold on me. Now, I'm going out that door I came in and feeling good and consider that good feeling to be the greatest thing.

Wonderful post, there are several members on this site who irrigate, myself included. I know in my case it removed a terrible burden from me to be able to work without worries of a leak.
Hopefully others who read this will decide to give irrigation a try.

As to the sleeves, I fill 4 one-liter water bottles with hot water before I start my session....add a few pumps of scented hand soap to one of them. You can keep the sleeve rinsed as needed during use and when my 1-hour time is up, pour in the soapy one in, rub the outside of the sleeve to clean it, and follow with one or two bottles to rinse, hang it in a discreet place to dry and it's as good as new. I can get a year's service out of the two bags that come with the kit, then replace the whole kit yearly (the plastic tubing eventually will break and leak....so have your spare kit ready).

Thank you, Hero, for the encouragement and for the tip. I like it. Thanks a bunch!

I was always told you can irrigate colostomies but not ileostomies.

Vanessavy,
I don't know. You may be right. I don't even actually know what kind of ostomy I have. I know it is permanent and on the left and that it works so I can live and raise my kids instead of dying of cancer now.

I have to surmise there is a reason why all don't do it (irrigating) since it seems such an improvement in lifestyle to me. It may be that it's not such a great thing for everybody and I hope my lack of knowing about this is not bringing up sore topics for another.

As an aside, I did purchase the Stoma Stifler and found it disappointing in that it is big and bulky seeming but disposable if I really need to be in public or around others for several hours in close proximity. I really think the product could be a lot less cumbersome, just a soundproofing slip of curve to lay over the stoma and use a belly band or tape to keep in place or a belt. It comes with a belt but I couldn't figure it out and the whole thing is too big anyway so I cut everything off but the disk to go over the stoma and will wear it that way when I have extensive out-of-the-house experiences to get through with.

I do appreciate the opportunity to small talk this subject just a little bit, feeling normal about it. Thank you for the site.

Living with Your Ostomy | Hollister

To qualify for irrigation, you must have enough colon remaining, and it must be healthy.

In my case, I had cancer. Only about a foot was removed along with my butt. If you are uncertain, ask your doctor or nurse.
Remember, not all doctors or nurses know everything about this condition. Otherwise, I think irrigation would be suggested more often. In my case, I learned about it on a medical forum similar to this one.