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!

Toilet Tips

Toilet Tips

Back to my favorite subject — toilets! I’m always thinking of things to help with being in the toilet. Our pouches have enough challenges and toilets shouldn’t make things more complicated.  Here are some of my tips that might help:
  • Wet wipes — I try to keep these within reach when emptying my pouch. I like the Cottenelle flushable wipes.  They recommend only flushing one at a time, but they sure are handy when you need to clean the end of your pouch, especially after liquid output that might get messy.
  • American Standard toilets — Did you know that you should hold the lever down just a little longer on newer American Standard toilets? I’ve found the same is true with my new Kohler toilet. If you live in a State that limits the toilet tank, they sometimes simply arrange for the flush to be truncated, but there’s actually more water in the tank that you can utilize by holding the lever a second or two longer.
  • Remember to always line the toilet where you’re emptying your pouch. Have the output hit that instead of the porcelain. It makes it easier to flush. If you get output on the toilet itself, and it dries, it becomes like concrete and it’s really hard to clean.
  • I thought I used a lot of toilet paper when I had UC, but I still use up to a roll a day, depending on how many times I need to empty my pouch. I think this is probably more true for women that use more toilet paper anyway. Also, I use some rolled toilet paper to clean the end of my pouch when emptying. I just accept it and buy in bulk.
  • You know all those disposal bags that come in your pouch orders?  They’re great for emptying your pouch in small spaces or toilets that are too small to sit on. They’ve been really convenient for me in airplane toilets.
  • And finally — to extend the space on your toilet, buy an open-front toilet seat, like they have in restaurants and shops.. You can gain several inches of room!
**The photo with this post is of a Toto toilet. Some Toto’s are very expensive, but they’re my favorite. Many have a rather flat surface in the bowl, and an amazing flush.
Summer Skin problems

Summer Skin problems

Last summer I developed a horrible rash under the adhesive of my wafer. My first thought was yeast and I called my primary care doc. She prescribed three days of Diflucan, which did absolutely nothing.  I then called my dermatologist, who prescribed another four days of Diflucan. Still, no difference. By reading other’s experience with this, I now realize that yeast and adhesive reactions are a troubling and persistent problem for many ostomates. Here is my journey and solutions:

First started with Desonex powder. I would apply it all over the rash area, gently pat it in, and then gently use a barrier wipe on it before applying my wafer. I did this for several weeks with no real effect.

Then I tried a product called Zeabsorb AF, also over the counter.  This is a clay-based anti-fungal, and I followed the same techniques as with the Desonex. I also changed from Convatec to Hollister wafers because the Hollister wafers aren’t as large, and I could then rub some of the Zeabsorb AF around the edges of the wafer in-between changes.  This did seem to make a small difference.

My next experiment was with Lotrimin.  This is an OTC anti-fungal cream. I was hesitant to use this under my wafer, so I continued to use the Zeabsorb and would rub a thin film of the Lotrimin around the outside edge a couple of times a day. This worked much better, but didn’t completely clear it up. And for a short period of time I started developing leaks, and switched back to the Convatec wafers to better heal my skin. The rash then really flared up, so I knew then that this was also a reaction to the Convatec wafer adhesive.

I read an article in the Phoenix magazine about using Monostat cream. This is a cream that lots of women are familiar with for vaginal yeast infections, but I must admit I’d not thought to use it on my skin. It can be purchased OTC in a 4% concentration, which is almost prescription strength (I got mine at Walgreens). I applied a VERY thin film under my wafer on clean, dry skin and dried it with a hair dryer, then applied it around the edges in-between wafer changes. And it worked really well! Within just a couple of days I could see a big difference. There’s almost no trace of that rash now and the itching is gone.

The Monostat cream isn’t cheap. I bought generic and it was $20. I was unable to get the cream alone, so had to buy the package with the applicators, as well.  But I just threw them away and kept the cream tube.

In conclusion, I now believe that yes, I probably had a small yeast infection, but it was made worse by my reaction to the Convatec adhesive (which is a shame, because I think the Convatec products are really great).

It’s now April, almost 9 months later, and only now is my skin almost completely healed. I use almost always Hollister wafers now, but switch to Convatec for 2-3 changes every couple of months. Because my stoma is retracted, and I use a convex wafer, I do this to change the pressure around my stoma and give my skin a chance to recover. But I can only use the Convatec wafers a short time before my skin reacts to them. My current regimen is using a VERY thin film of Cortisone-10 on clean, dry skin, dry with a hair dryer, then pat the Zabsorb AF on top of that and seal gently with a barrier wipe. The Corisone-10 does a good job of keeping the itching at bay, but the secret is to keep the film exceptionally thin and make sure it’s all completely dry before applying your wafer.

This is a long post, but I wanted to let you know my attempts at this vexing problem. Hope these suggestions help you with any Summer yeast or adhesive reaction issues.

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!

Blockages are just no fun!

Blockages are just no fun!

About two months after my surgery I had a small blockage. Although I didn’t see that much change in output, I had some pain and just the general sense that something wasn’t quite right. I called my GI doc and she told me to stop eating food, but to drink high-sugary drinks, and specifically Coca-Cola. Permission to drink a Coke with no guilt! After a couple of hours I was feeling much better, but held off on food that whole day, just to be safe.

My surgeon told me that I could eat anything I wanted just after my surgery, and I’ve heard that from other patients, too. I guess you can…but be smart. If you have an ileostomy you could have a lot of swelling after surgery, so I always refer to the Diet and Nutrition Guide at Ostomy.org. This is a common sense guide to follow, and won’t get you into any problems. (By the way, I love the graphic in this guide that shows where nutrients are absorbed in the small intestine). I’m still quite careful, even tho I now eat most cooked vegetables.  I still avoid raw vegees, black beans, whole kernel corn, nuts and mushrooms.

Earlier this month, Shield Healthcare posted a great video on this topic, featuring their Lifestyle Specialist, Laura Cox. Laura is great, and all her videos are useful and simple to understand. It was a very early video of a younger Laura changing her pouch, with a good sense of humor, that convinced me that life with a bag wouldn’t be so bad.

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!


Hydration and Lab Work

Hydration and Lab Work

Since my surgery, it seems much harder to have blood drawn for lab work. Before, my veins were easy. In fact, I have one vein in the crook of my right elbow that was my “emergency” vein. If they couldn’t make a stick anywhere else, I’d offer it up, and it was always good to go. But now I don’t seem to have any available veins anywhere. Even my emergency vein is hard to access. I’ve thought this was due to aging, but after some discussions I’m now thinking it’s more due to hydration.

Last week on vacation I had the opportunity to talk with a friend who is a pre-op nurse at a large medical center in Kansas City. From her perspective, age has nothing to do with drawing blood. However, how much weight you have can make a difference in accessibility and pain. If you have more fat on your arms, that can make finding a vein more difficult (that makes sense), and if you’re very thin the veins are easier to find, but drawing blood may be much more painful. Her best suggestion for all was HYDRATE. Even when they tell you not to eat before lab work, that doesn’t mean you can’t drink water. And for us ostomates with hydration issues, we need to be even more aware of this. Maybe even drink throughout the night when you get up to empty your pouch. She also suggested heating your veins before the blood draw – try taking a hand warmer with you to the lab. This helps to raise your veins, making them easier to find and less painful if you’re thinner. If you’re having blood drawn in a hospital setting, ask if they have a vein finder. All hospitals have them just for this purpose. And don’t be shy about asking for someone more experienced to draw your blood. If you suspect a recent graduate with a shaking needle coming at you, be assertive. Remember, you’re the one that will be bruised.

Marshmallows Could Be Your Secret Weapon

Marshmallows Could Be Your Secret Weapon

At our monthly ostomy support group meeting yesterday the question was raised about marshmallows. There are anecdotal sayings that eating marshmallows will slow down your output – useful if you need to change your appliance when least expected, or when you’re visiting the doctor or ostomy nurse. I can say for sure, YES! Eating marshmallow can be quite helpful!

When visiting my ostomy nurse after my surgery, I would take 4-5 marshmallows (the large ones) with me to the appointment. I would eat them while in the waiting room, so I usually had about ten minutes to wait while they digested. Then there’s the added time talking to the nurse about what my issues were, and the time to remove my current wafer. By then, my output had sometimes completely stopped and, at least, slowed to the point that we had time to evaluate what my problems were and get a new appliance on with minimal disruption. When your stoma is over-active, it’s problematic getting that new wafer on, especially if your stoma is recessed, like mine. Usually, there was about a 20 minute window when my output was slower or stopped.

In general, it’s always good to schedule these appointments at least two hours after eating, so your output is a little slower anyway. Your stoma will be much more active and unpredictable in the weeks right after surgery, so the marshmallow trick may make things a little easier. I also used them in the mornings when I had a lot of skin breakdown and had to change my wafer daily until my skin healed. I’ve heard marshmallows don’t work for everyone, but they’re certainly worth a try, and taste pretty good, too!