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By Molly Atwater

Ah, November… the leaves are changing colors and falling from the trees, the jack-o-lanterns have been put away and exchanged for candy canes, and the Black Friday sales emails have started trickling into our inboxes. That can only mean one thing: the holiday season is upon us! It’s safe to say that our celebrations in 2020 will be a little different than what we’re used to. A non-traditional Thanksgiving or holiday gathering can be hard on all of us now that the CDC is suggesting limiting gatherings to just those in your household. (They’ve got some suggestions on safer alternatives to consider here.) Regardless of how we’ll celebrate, there are still lots of cookies to bake, memories to make, and laughs to share. But what does that mean for those of us with ostomies? The holiday season is inherently stressful, but adding medical issues on top can feel overwhelming. But fear not – with a little extra planning and mindfulness, you can handle the next few weeks like a pro. Here are a few tips and tricks to make sure you have a HAPPY holiday!

Travel Prepared

If you must travel during this time, make sure you pack more than enough supplies. Odds are you won’t need all of them, but it’s always better to be safe than sorry. My rule is to figure out how many bag changes I expect to perform while I am away, and then pack double that amount of supplies.  That way, even if I have to do extra bag changes, I never have to worry about running out of my necessities. I also pack in-bag odor reducers and a small bathroom aerosol spray so I don’t have to feel self-conscious about any expected or unexpected ostomy smells.

If your holiday plans include traveling by airplane, pack your supplies in your carry-on. Airlines are notorious for misplacing luggage, so keeping your supplies with you at all times can save you a lot of worrying. Also, go ahead and download one of the UOAA TSA advocacy cards to make your security checkpoint experience easier. For even more peace of mind contact TSA Cares 72 hours before your flight for additional assitence. Don’t forget to throw an empty water bottle in your carry-on to fill up once you’re at your gate to prevent dehydration. 

Enjoy Meals with Peace of Mind

When it comes to eating, everyone’s post-ostomy diets are different. For some, ostomy surgery can open up foods that were previously off-limits, while for others, options might be more limited. Regardless of your digestive system’s abilities, take the opportunity to make your meals a little more festive! If you can eat things you’ve missed for a while, go for it! But if you’re dealing with more restrictions, all is not lost. Maybe you could make macaroni and cheese with turkey-shaped pasta or try your hand at some homemade applesauce.

Chew, chew, chew! A lot of the foods we eat over the holidays are out of our normal diet, so give your body some help with digesting. It’s not a ton of fun to step away from the festivities to deal with a blockage! If at all possible, it’s also helpful to stay on your normal eating schedule. With all of the uncertainties that come with the holidays, having one steady touchstone can really help.

Alcohol is a staple for some families’ celebrations, but it can be very dehydrating. That’s an issue for everyone, but it’s crucial for those of us with ostomies. Try to alternate your cocktails with a glass of water or your electrolyte beverage of choice. Don’t forget that with the weather cooling down, warm drinks like tea also count as hydration!

Trust Your Emotions

The holidays can be emotionally challenging for everyone, but for those dealing with chronic conditions, things may feel a little tougher.  If you are feeling blue, that is ok! All emotions are valid, so give yourself the time and space to feel sad or angry and to grieve what was.  But it’s also a great time of year to reflect on the things that you are grateful for, whether that’s your support system, your health, or even just for making it through this crazy year.

Some people don’t mind talking about their medical conditions, but if you’d rather not focus on your ostomy this holiday season, think of some ways to steer the conversation in a different direction. The questions people ask typically come from a good place, but you are fully entitled to a few hours without thinking about your health.  Brainstorming quick responses or coming up with other topics to bring up instead can help you feel more prepared if you do find yourself in a situation where you want a quick “out.”

Listen to Your Body

Dealing with chronic health conditions is exhausting, and putting on a smile when you aren’t feeling great makes it that much harder. Finding others who can accept and acknowledge that things are hard instead of offering common and well-meaning phrases like “it will get better” and “stay strong” can be extremely helpful and validating. Nobody wants to be a Scrooge during this time of year, but having a safe space where you can feel seen and heard can bring you back into the celebration faster than wallowing alone.

Find an outfit that makes you feel AMAZING with your ostomy! Since a lot of us have spent more time in sweatpants than ever before thanks to quarantine, take the opportunity to wear something that makes you feel confident. It doesn’t have to be fancy – maybe just your favorite pair of pajamas or an extra-festive mask!

Get Creative

If you can’t participate in some of your favorite holiday traditions, now is the time to get creative! There might be ways to augment some existing traditions, like making different cookies without hard-to-digest ingredients, or you can create brand-new ones.  Maybe it’s time to introduce a holiday movie marathon or invite your friends to join you on a wintery walk through the woods! Whatever you choose to do, I encourage you to find an activity that brings you joy.

The holidays might feel tricky to navigate, but with a little extra preparation, you can remove ostomy stress from your list of worries.  Whether you’re a new ostomate or a seasoned pro, I encourage you to find your own tricks for making this time of year as merry as possible. From all of us here at UOAA, we wish you a happy and healthy holiday season!

 

Molly Atwater is UOAA’s Director of Young Adult Outreach. After struggling with chronic constipation for decades caused by a collagen deficiency disorder, she underwent ileostomy surgery in June 2016. In addition to serving with the UOAA, Molly runs a social media account (“MollyOllyOstomy”) that aims to teach her more than 20,000 followers about life with an ostomy and other chronic illnesses. She lives in Northern Virginia with her fiancé, Thomas.

By R.S. Elvey

Caring for an ostomy can often be a frustrating and challenging experience at any age. But combine advanced age and dementia and it becomes even more of a challenge for caregivers and loved ones. According to the Population Reference Bureau, the number of Americans 65 and older will gradually increase from 15% of our population to 24% by 2050. With this growth has come a rise in existing and new ostomies combined with Alzheimer’s or other dementias. The Alzheimer’s Association of America reports in their 2017 Alzheimer’s Disease Facts and Figures report, “Of the estimated 5.5 million Americans with Alzheimer’s dementia in 2017, 5.3 million are age 65 and older.” The association predicts a half a million new cases of Alzheimer’s dementia will develop annually.

This explosive growth in new cases of dementia is putting an enormous strain on family caregivers. The Family Caregiver Alliance estimates, “44 million Americans age 18 and older provide unpaid assistance and support to older people and adults with disabilities who live in the community.” These caregivers often have little or no preparation or support in providing care for people with disabilities such as stoma care. They become frustrated and worn out. In an online forum, an anonymous writer expressed her frustration about caring for her mother’s stoma as follows, “I am TIRED of it. I need someone to take over dealing with an ostomy and ordering the correct supplies for her, etc… And I am just going to make whatever decisions seem right regarding her bladder care, as I find out more info. I really wanted to yell at her tonight and that makes me feel like a terrible, awful person. I didn’t, but I did get a little firm.”

Studies have shown that family caregivers who provide care to family members with chronic and disabling conditions are also putting themselves at risk of developing emotional and physical health problems. When seeking stoma care information, caregivers often participate in online chat rooms and forums for anecdotal advice. Additionally, visiting nurses with wound and ostomy training often make home visits and teach ostomy care. But when they leave the caregiver is often faced with ever-changing challenges as their loved one’s dementia worsens. Most often they face the challenge of not knowing when a pouch needs to be emptied, appliances being ripped off by their loved one or attempts to empty and change the appliance that miss the mark and require massive cleanups.

Realizing the complexity of stoma care and dementia and the pressure it causes to caregivers, the Colostomy Association of the United Kingdom and the Dementia Association of the United Kingdom combined to issue a twelve-page downloadable leaflet at www.dementiauk.org entitled, “Caring for a person with a stoma and dementia”. They readily recognize that not all persons with dementia will profit from learning to care for their stoma. But where it is possible a person should be encouraged to participate in their own stoma maintenance.

The leaflet’s content is based on input from health professionals who care for ostomates with dementia and a stoma. A few of the hints and tips included in the publication are:

  • “People with dementia who are actively involved in changing their bags should be encouraged to wear gloves. This reduces the risk of infection, feces under the nails and fecal spreading.”
  • “Some people with dementia who require their bag to be changed for them might resist. In these cases distraction could help. For instance, encouraging the person to clean their teeth or brush their hair during the process might be helpful. Standing the person in front of a mirror so they can focus on the task they are performing and not the bag change can help.”
  • “Bag choice is important. One-piece bags with pre-cut aperture have the advantage of being uncomplicated for both person and caregiver. Two-piece bags, where the flange can remain in situ for up to three days, helps protect the skin where frequent changes are necessary.”

Individual and professional caregivers also provide additional advice based on their experiences. Many staff who work in nursing homes put a plastic bag over the pouch so that in case of any leakage, there won’t be a much larger incident. Many persons with Alzheimer’s or other dementias either pick or rip off their pouches. To prevent this from happening, many caregivers dress their loved ones in special clothing that has no openings in the front but still gives the appearance of normal clothing. One source for this type of clothing is Buck and Buck. Their online catalogue features adaptive clothing by gender and condition. Lastly, in this smartphone age there is even an app that might help. 11 Health has created the Alfred Alert Sensor. The sensor is applied to the pouch at a point where it should be emptied. When that point is reached it connects by Bluetooth wireless technology to the Alfred Alert app on your smartphone to tell you it is time to empty. The app can also capture patient output volume over a period of time. The data is stored in a HIPAA compliant cloud server where it can be shared by medical professionals and family members.

In the final analysis, caring for a loved one with dementia is a joint effort between the person with dementia, their loved ones, their medical consultants and other professional caregivers.

Editor’s note: UOAA Affiliated Support Groups all around the United States are open to ostomy and continent diversion patients, caregivers, family, and friends.

By Megan Herrett

Adequately summarizing what our family has gone through over the past almost ten years requires going back to the very beginning.  Our daughter, Maggie was three months old when we realized that she looked a little jaundiced.  Our pediatrician agreed and ran what would be the first of hundreds of tests to determine what was wrong with our baby and why her liver function tests were so elevated.  After being seen by multiple specialists here in Boise for a few months, we were referred to a doctor at Primary Children’s Medical Center in Salt Lake City in November of 2008.

Photo by: Natalie Koziuk Photography (www.nkoziukphotography.com)

When Maggie was about six or seven months old, we noticed that she was starting to scratch quite a bit.  Her arms, feet, and ears were covered in scabs and scratch marks.  This itching was a side-effect of her liver not processing bile correctly – when not processed by the liver, the bile backs up into the bloodstream and circulates back through the body, resulting in an increase number of bile salts in the body.  It is these bile salts in the bloodstream that make an individual with a liver disease very itchy.

At first, we were able to control her itching through several medications but by the time she was 12 months-old, her itching had become unbearable.  At that time, her liver was deteriorating quickly and she was exhibiting some developmental delays as a result of the incessant itching.  In a matter of weeks, she had pulled out all of her hair and she was maxed out on her medication dosages.

We were presented with the option of an ostomy-placing surgery when Maggie was just over one-year-old as an alternative to a liver transplant.  The purpose of her ostomy would be to (1) drain bile from her body to combat the itching, and (2) slow the progression of her disease by giving her liver a much-needed reprieve.

To be honest, I was devastated when I first heard the words, “ostomy bag.”  I imagined a life where Maggie would never wear a bikini or be a cheerleader or be captain of her swim team – all very big concepts when you are talking about a one-year old child.  I imagined her being bullied because she was different.  But, we needed a solution…and we needed to act quickly.

Photo by: Natalie Koziuk Photography (www.nkoziukphotography.com)

Maggie underwent ostomy surgery on October 30, 2009, and we haven’t looked back.  She is now eight-years-old and is thriving health-wise as well as academically.  Additionally, she is also excelling on a competitive gymnastics team.  And although Maggie absolutely beams on the outside, she struggles with confidence because of her ostomy pouch.  She is fiercely private and does not want any of her peers to know.  My husband and I have worked tirelessly to emphasize to her that her pouch is nothing to be ashamed of – after all, it saved her life and she would not be the person she is today without it.

In 2010, we were blessed by the birth of our son, Winston.  We soon discovered that he was plagued with the same disease and would then undergo the same surgery when he was just over one-year-old.  Although this news was devastating at the time, we have come to realize that it was a blessing in disguise.  Both of them have the same liver disease and both wear ostomy pouches – commonalities that they can rely on when the going gets tough.

I can still recall my “aha moment” though – that moment when I realized that we would not be a family that sat idly by and let her pouch be a source of shame or embarrassment for her.  Maggie was probably two years old at the time and we were in the throes of potty-training, where our previous line of attack of onesies and bib overalls to prevent her from yanking her pouch off, were no longer an option.  She was finally in a shirt and a pair of pants…and her ostomy bag was peeking out from the hemline of her shirt as we left a restaurant.  A man entering the restaurant noticed her ostomy pouch and said, “Ewwwww!  What IS that?”  Although my initial reaction was one of anger and dismay, it was then that I realized that working with her would be only one piece of the puzzle – we also needed to work with the community to help educate, support and raise awareness for those like Maggie so that the shame, fear and embarrassment would fade away to empowerment and pride.

It was this “aha moment” that led me to contact the United Ostomy Associations of America in January of 2016 about bringing their Run for Resilience Ostomy 5k to Boise.  My inquiry was met with a resounding “YES!”  We held our inaugural race on Saturday, October 8th and had over 160 people registered for the 5K and Kids’ Mile events.  We even had participants, including ostomates and ostomy nurses, drive in for the race from Spokane, Washington and Lewiston! And Hollister even donated ostomy pouches to include in our race registration bags.  If nothing else, I am hopeful that this year we laid the foundation for many successful years to come and got some ostomy-related dialogue started.  Instead of “ewww,” maybe people will say, “Oh, I know what that is and that saved their life!”

The Boise Ostomy 5k is now in its 4th year! For more information on our Run for Resilience events around the country visit www.ostomy5k.org