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New wafer tips

New wafer tips

I attended the UOAA National Conference last week and got some great new information. I’ll be sharing it for weeks.  If you get the chance to go to the next one in 2019 in Philadelphia (they only occur every two years) I recommend you start planning now.

One of the recurring sessions is the Barrier Cooking Show hosted by Hollister. It’s a hands-on lab where you actually get to make a wafer! The chemist that taught the class had a couple of really good wafer tips that I hadn’t thought of:

–Before putting your wafer on, gently heat it first.  He recommended simply placing the wafer under your armpit while prepping your skin. The ingredients in the wafers become much more sticky when warm, and you’ll find adhesion is much improved if you warm it first. He said you could briefly warm it with a hair dryer (not too long!), but don’t ever put it in the microwave.  It will quickly explode!

–The other tip was caution if your bathroom tends to steam up a lot when you take a shower. If you have your supplies ready and waiting, the steam can seriously effect your wafer adhesion. He recommended actually keeping your wafer in another room, or an area where steam won’t compromise it.

I’m now paying attention to both of these and can say I see a definite improvement in immediate adhesion after heating my wafer under my armpit before putting it on. My next post will talk about the amazing Stoma Clinic hosted by the conference.  Experienced WOCNs evaluating your stoma with advice and suggestions for a multiple of appliances.  So much to learn!

 

My Setup for Changing My Wafer

My Setup for Changing My Wafer

I’ve settled into a nice routine where I change my wafer just twice a week – Wednesday morning, and either Saturday or Sunday morning – so I’m wearing my wafer three or fours days (the longest I’ve ever gone is five days when on vacation). I always change first thing in the morning when I have almost no output and can take my time. I suppose the detail I take in setting up my supplies is more than some people would take, but I like having it all organized so I don’t get flustered. Starting from the left in this photo:

Hollister New Image convex wafer and pouch
Scissors
Hollister Cera-Plus thin ring (which I cut in half and flatten against the edge of the wafer before applying)
Zabsorb AF anti-fungal powder (I use this on the outer adhesive area of my wafer in the summer due to a wicked heat rash I developed last year)
Hollister Skin Barrier Wipe
Huggies Natural wipes
Smith and Nelson Remover Wipes
Karaya 5 powder (which is another version of Stomahesive powder)
Sensi-Care Removal Spray
Mirror
Paper towels, torn into squares
Standard kitchen garbage bag lining the sink
Attiva Seal-N-Toss ostomy disposal bag, in the garbage bag in the sink

Whew! Now that I type that out I realize it’s a lot! And I didn’t have room to show my hair dryer on the left that I use to blow off the Karaya 5 powder and dry the barrier wipe when I’m crusting. This whole process, from pulling out of my supply cabinet, to new appliance application, to cleaning up, takes about 15-20 minutes. To be honest, this routine hasn’t changed much since right after I got home from surgery. I switch out wafers sometimes (I love to experiment with new products) and I now use half a ring since I developed a dip at 9:00 a few months ago. I still crust my stoma with one layer, even tho I think it’s often not so necessary, but it gives me a little piece of mind. For me, I’ve learned that rushing doesn’t help, and knowing all my supplies are in order makes sure I don’t forget anything. A small price to pay if it helps avoid leaks!

TSA and Travel

TSA and Travel

This past month I’ve been on an extended trip overseas, and I wanted to share my experiences and some travel tips.

I knew from fellow ostomy travelers to take plenty of supplies. I took twice what I thought I would need. I didn’t really need that much, but was glad to have them, because I did have one unexpected wafer change and I was glad not to worry about using any needed supplies. I always carry a stand-up mirror with me, and I was glad to have it on this trip. We had a variety of hotel rooms and not all had mirrors that allowed me to view my stoma while changing. Plus, the mirror gives me a more close-up view, so I don’t miss and cover half my stoma! (I’ve done that before). I have a separate carry-on bag that has all my supplies, plus a two-change Starter Kit bag in my backpack, and one emergency change in my purse. I try to cover all the bases.

TSA – I didn’t really know what to expect. One member of our support group had been taken aside for almost a half hour recently while they checked out his urostomy appliance. I know the rules in the USA are that they can not ask you to undress, but I wasn’t sure about Europe. I was pulled aside at Heathrow. The security agent, a woman, felt my appliance on the outside, and was rather thorough about it (but not obtrusive). She did start to raise my shirt and asked if my appliance was located on the outside, and I told her it was attached to my body. She stopped raising my shirt and asked me to step aside, where they scanned my shirt where the appliance is and my hands with the explosive wand, and fed that into the scanning machine. I then had to take off my shoes and was re-scanned in one of the x-ray machines where you raise your hands above your head. While I was doing that, they scanned and opened all my carry-on. They were very polite and the whole process took about 15 minutes. We had plenty of time and, all things considered, it was a better experience than could have been. I did not use my TSA Blue Card because I figured it would have no effect overseas.

The UOAA (United Ostomy Association of America) has a representative that works with the TSA in the US to specifically advocate for ostomates. Before traveling, it’s a good idea to check out their guidelines and recommendations so you know what to expect.

That Darn Adhesive!

That Darn Adhesive!

Like many ostomates, I’ve struggled with trying to find the right adhesive remover for me. I’ve found that as much as I like the Convatec wafers, they leave quite a bit of residue behind that needs extra care to remove. The Hollister Cera-plus wafers are much better for me, but I’ve had to adapt for those, too. What helps for me is when I’m taking a shower on wafer-changing days, I lift the edge of my wafer and literally wash underneath it. Usually the main portion of the wafer around my stoma will continue to stay stuck and not fall off. I use soap on the skin that’s exposed under the lifted outer-edge of the wafer and wash it off under the shower.  I can often feel the adhesive come off and it feels so good to feel the clean skin after.

After my shower, I follow up with the Smith and Nelson Remover Wipes around my stoma, and the Sensi-Care Adhesive Releaser to release the wafer completely from my stoma (remember, I have a retracted stoma, so my convex wafer won’t often just pull off). I’ve tried several remover wipes, but just love the Smith and Nelson brand because they are quite wet, yet clean off easily with a damp cloth and dry with no residue. The Sensi-Care releaser is, in my opinion, the best on the market for spraying the main portion of your wafer — using it makes your wafer just fall off. I also use either one of these to clean my fingers after using my sticky barrier wipe.

There are many types of adhesive removers on the market, so another one may work better for you. Also, I believe men would have greater needs, due to the the challenge of extra hair growth around their stomas. A good place to get reviews is from Eric at veganostomy.ca. Eric has done an incredible job of reviewing a variety of products and I rely on his reviews before purchasing anything new.

Managing a retracted stoma

Managing a retracted stoma

I have an ileostomy with a retracted stoma. It retracted within a couple of weeks after my surgery. Although I have some suspicions about why this occurred, I don’t really know for sure. I understand that sometimes it just happens.  Mine is not as bad as it could be — my stoma is right at skin level, so I’m able to wear a convex wafer with virtually no problems. However, I’ve gained 10 lbs since surgery and that has caused a dip on one side, so I now usually wear a ring to help fill that gap (I sometimes will use paste, but I find it very messy).

Because of the wafer convexity, and now the additional pressure applied by the ring, I pay close attention to the skin directly around my stoma. Being older, my skin is dryer and less flexible, and I want to make sure I avoid any pressure sores.  I usually wear a Hollister Cera-plus convex wafer, but every couple of months I’ll switch to a Convatec Natura convex wafer. The convexity is different between them, and it gives my skin a chance to recover a little bit. I like both of them, and they both work really well, but I’ve developed a sensitivity to the Convatec adhesive and can only wear them for a max of two changes before my skin just erupts and starts itching like crazy. I think this is a problem unique to me, so if you try this approach you will probably not have any problems.

Having a retracted stoma can be problematic, but with the right accessories it can be managed successfully.  Of course, losing the 10 lbs might help to solve some of this problem, and I’m working on that!

Emergency Kits

Emergency Kits

You do have an emergency kit, right?  And you have it with you at all times….right??

This is my emergency kit. It has two extra pouches (one one-piece, and an extra pouch for a two-piece), remover wipes, barrier wipe, extra disposal bags, a mirror, a pack of cleansing wipes, one pack of Shout cleaner, and an extra pair of underwear. I keep it all in the small bag that came in the Secure Start starter kit I received from Hollister shortly after my surgery. In fact, I received a small emergency bag in all of the starter kits I received from each major manufacturer, but I liked this one the best. I use one of the others as my go-to bag when I travel and need extra supplies on hand in my carry-on luggage.

I carry this with me always. It folds up fairly compact, and fits in my handbag easily. I try to remember to swap out the pouches on a regular basis, but I usually forget. That’s not a good thing (so don’t you forget!) because if you leave your pouches in a hot car the adhesion can diminish. I’m keeping my fingers crossed that whatever real emergency might crop up, my bag will be a short-gap measure just until I can get to my real supplies.

I’ve actually had to use it twice, both on the same vacation, and on the trip home. The first time I was emptying my pouch in the airport bathroom and I got output all over my underwear. Thank goodness it wasn’t on my clothes! But I was able to grab my emergency underwear, change out in a very small bathroom stall, throw away the old underway, and move along. Then, in the airplane later, I realized that there was no way I could fit me, and empty my pouch, on the airplane toilet. So I grabbed one of my disposal bags and emptied my pouch into that. I’ve used this trick a couple of times and recommend it when you realize that you have a very limited space, or an extremely small toilet that won’t accommodate both you and your pouch. Fortunately, I’ve not had to use my emergency bag in a “real” emergency, with a total blowout. But I hope I’m prepared, just in case!

Getting Your Supplies

Getting Your Supplies

If you’re about to enter the ostomy world, you need to know the difference between product manufacturers and distributors. There are several manufacturers, some worldwide, but three of them are gorillas in the marketplace:

Hollister — www.Hollister.com

Covatec — www.Convatec.com

Coloplast — www.Coloplast.com

The hospital will have a contract with one or more of these companies, and that’s the brand you’ll be sent home with. All manufacturers provide free Starter Kits, so ask if your hospital will order the one they contract with before you’re discharged. After you’re home, you can call each company directly and ask for their Starter Kit. You can never have too many supplies, and you’ll find handy accessories in each of them.

HOWEVER, you CAN NOT order your monthly supplies directly from the manufacturers. You can get free samples from them (which I strongly encourage) and they have ostomy nurses available for you to speak with. But in order to get your supplies to your home on a regular basis you MUST go through a distributor. Again, there are many, but these three are popular:

Shield Healthcare – – 800-765-8775

Byram Healthcare – 877-902-9726

Edgepark Medical Supplies – 888-394-5375

(The image above is from STLMedical. I’m not that familiar with them, but I believe they are also rather popular)

These distributors all accept Medicare, but if you have supplemental insurance, call first to make sure it’s accepted. I have Medicare with AARP Plan F, and all my supplies are fully covered. There is one caveat – Medicare limits the number of some supplies that you can receive each month. It’s mostly generous, but you are limited to 20 pouches/flanges each month. When you’re first home from the hospital you may need many more than that while you adapt. One option I’ve found is the website Stomabags.com. They don’t take any insurance, but offer a wide variety of pouches and accessories. Typically, the cost for 10 flanges/pouches is $50-100. These things are expensive! Still, I’ve found Stomabags to be a good resource for getting extra supplies quickly in between my usual orders. They also have ostomy nurses available for you to speak with.

And one last thing — before leaving the hospital, make sure you know what size your stoma is! As you set up your supplies, you’ll be ask that. Ask your nurse, and measure often when you first come home!