Ostomies

My Patrick had an ostomy for 10 months and I'm happy to share some tips. Keeping the bags on an infant especially is a feat!

I guess I should start by telling you that the day we got home, a manufacturer's representative called to check in on us. When I told him that we were getting about 24 hours wear time, he said that for an infant, that is very good. I stopped trying to see how long I could keep a bag on and letting myself be surprised by leaks. Instead, I started to watch for that white ring under the wafer that showed that there was moisture under it. I'd try to be proactive and change before it became a full leak. This kept the skin healthier so it'd stick longer.

Fitting a baby's body is tricky because it's got more curves than an adult. Warming the wafer before applying it helps it to conform to the body. Then, I put the wafer in my bra when starting a dressing change to help warm it up. (Armpits work for men, but the bra was most convenient for me). I also kept small heating pads nearby.

If you use an adhesive remover to take off the wafer, it helps it come off more comfortably, but note that any left on the skin will keep a new wafer from sticking. Make sure you wash and dry the skin thoroughly. I preferred to do this with warm water on a washcloth. Makeup remover pads work for diaper bags and changes on the go. Walgreens sells some nice big ones.

With an ileostomy, the stool's pretty liquid and a lot more frequent. If the stool gets on the skin after you clean, the wafer won't stick. I found that using my washcloth, or better yet a cotton ball, to gently cover the ostomy helped me keep stool from dripping down the skin while I worked. Be gentle so that you don't make the ostomy bleed.

If the skin is looking a little red and raw from all the dressing changes, stoma powder can help the skin and also help the wafer stick. Dust it on, but then use a bulb syringe, you know a nasal aspirator, to blow the excess powder off. Too much will inhibit the stick.

I found that using a thin ring of stoma paste around the hole cut in the wafer helped get a nice tight fit without me having to cut the ring too close. You want the hole you cut in the wafer to fit over the stoma without choking it, but also without leaving a lot of space around it. Any space gives a place for stool to collect and then seep under the wafer. The stoma paste protected the skin and helped keep stool above the wafer. To make it easier to apply a baby size amount, you can get a 10 cc luer lock syringe.. Take the plunger out and squeeze the paste into the syringe. Then, just keep it capped with a tight fitting cap inbetween uses. I found it easier to draw a little circle on the hole on the wafer and then to put it on, rather than trying to apply the paste directly to the skin.

My son's gastroschisis closure scar was under his wafer, so I also used the paste for a while to fill this scar. Again, I just knew the shape and drew it on the wafer.

For me, though, the paste didn't work for long. I needed something better to ring the stoma and fill the scar. So I switched to Eakin Cohesive Seals. They're made by convatec. Yes, on this brand matters. With these, I just tore off small pieces and rolled them into snakes. One I put around the stoma, the other in the scar. Took trial and error to find the right fit. The nice thing about these is that they actually absorb moisture, making a tighter fit when stool hits them. Note, these are not compatible with paste.

Finally, after all this was done, I'd put on the wafer and then the bag. And I'd warm them. We kept hot packs in the house. Hospital heel warmers are the perfect temperature. But that's expensive. You can buy hand warmers to use. You know, the disposable kind sold at outdoor retailers. Some are even made so you can boil them and reuse them. http://www.amazon.com/Reusable-Star-Hot-Gel-Pack/dp/B001AHP33Q We used these one. (Copy and paste the address). Once the bag is in place, hold these on for about 10 seconds and it'll complete the seal.

Finally, emptying the bag often helps a lot. I found that we were losing most bags during the night when my son slept on his stomach. So, we used the Hollister pediatric bags as long as they held enough http://www.hollister.com/us/products/product_series.asp?id=1&family=8&ref= because they could be drained with a leur lock syringe, making them easy to measure and empty, even away from home. Also, there's a drainage tube made for these that could go to a bedside drainage bottle, reducing leaks at night.

Depending on how liquid the stool is, this might be an idea. As you get older, urostomy bags sometimes are easier to drain.

Really, though, it's a matter of finding what fits your child best.

One more thing to know... Hollister and Convatec, the two big manufactuers of ostomy bags, employ enterostomal nurses, nurses who specialize in ostomy care. More than once, I called and talked through my problems with them and they recommended products and solutions to help. They'll send samples you can try before you buy anything.

Many hospitals also have enterostomal teams. Setting up a consult with them can sometimes help. Ask your GI.

Hope this long post offers some help. I'd also be more than happy to talk to your daughter and/or husband. Just let me know and I'll send a private message to arrange communication.