Traveling with an Ostomy

Traveling with an ostomy is manageable and even enjoyable but it is faced with risks. There are risks of inconvenience in regards of restrictions when flying, restroom access, and appliance welfare. Recently while traveling to visit my Great Uncle for a week, my mother experienced an intensive week of ostomy issues – specifically, appliance issues.

We decided to fly to arrive to our destination and was as any flying ostomate, she was faced with the typical TSA regulations of traveling with ostomy supplies and restroom restraints. Fortunately, she didn’t encounter any hassle from TSA regarding traveling with her ostomy supplies and wasn’t selected for a body scan or pat down. You may find the UOAA's travel tips for ostomates helpful for additional guidance, particularly when flying.

We were away for a full week and my mother packed enough supplies for 5 days worth. Typically her ostomy appliance wears for 3-4 days per change. With your typical run, 5 days worth of supplies was expected to be plenty. However, fate shouldn't be tempted. When something can go wrong, it seems as though it often will do so. And so was the case for my mother.

Her activity didn't particularly change out of the norm from her usual activities. Rather, her activity lessened if anything. While away she was unable to participate in her regular exercise classes and physical therapy sessions. She bathed normally and used the same products she typically uses during an ostomy appliance change except for one product that she occasionally uses. She even followed the procedure exampled by her ostomy nurse. And yet, her ostomy appliance leaked five days out of the seven days we were away.

We brainstormed about what was being done differently, what needed to be done differently. The only difference were the two days that instead of a regular shower, she took a sponge bath. Nothing that we could think of should have been causing such an excessive increase of appliance leaks. With an ostomy you are meant to be able to participate in activities, even strenuous, physical activities. You are meant to be able to shower daily. You are meant to be able to live in various climate zones.

It was Sunday evening and my mother had two days worth of supplies left and we were scheduled to return home on Tuesday. After four days of consecutive appliance leaks and desperate for a lasting appliance, my mother opted to forgo a regular shower Sunday night and instead take a sponge bath in the morning. Miraculously, she awoke Monday morning without any appliance leak. She had two days worth of supplies remaining, one for each day of the trip remaining if needed. Monday day and night passed without incidence. We thought she was in the clear but remained concerned about what would happen if her appliance leaked while traveling home. There wouldn't be time on the plane to an appliance change and the tight quarters of the lavatory would make a change highly difficult even if timed were allowed. But what should she do if a leak did occur? We brainstormed once again and I suggested she use her medical tape to tape a Ziploc bag onto her skin with the appliance safely tucked away into the Ziploc bag and paper towels wrapped around the appliance itself. This would allow for the appliance to remain contained. If needed, she would be able to cut the bottom of the Ziploc bag and attach a pouch clip to even allow for emptying of the pouch.

Tuesday morning arrived and the night passed without issue once again. All of the appliance leaks had occurred during the night. We successfully completed our first flight of the day with just one more flight remaining after a layover. Once again, we thought we were home clear. Twenty minutes prior to our flight boarding the feared but unexpected occurred. Her ostomy appliance leaked. She headed to a terminal bathroom to hastily adorn her makeshift Ziploc bag appliance container. I watched the clock to check on her progress and update her of the flight status at the 10 minute mark. At 8 minutes, we were called to start boarding the flight. She finished her process and we headed toward the plane. Unsure of the makeshift container, her appliance remained intact for the remainder of the flight and drive home.

In spite of the difficulties, our travel was worth it all. Next time though, my mother will pack more than enough supplies in case of such a rare occurrence again. And perhaps know the local ostomy resources ahead of time.

Hydration via Speedlyte: A Review

Disclaimer: I have been given this product as part of a product review. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

Hydration is an essential key to living well as a living being. However, for those of us whom are missing parts of our intestines, dehydration can be a dangerous game. Without our full intestines, we are easily at risk of dehydration which increases our risks of electrolyte imbalance, cramps, fatigue, lightheadedness, intestinal blockages, and increased stools which worsens dehydration.

Even though I live with a straight pull thru and have Short Bowel Syndrome due to removal of my colon and part of my small intestine, I am not a keen observer of my own hydration status. I drink liquids when I'm thirsty and I tend to drink a fair amount of coffee and tea, which both further dehydration due to their caffeine content. I don't typically experience overly bothersome effects of dehydration. I'm not prone to intestinal blockages or cramps and my electrolytes have been remaining stable during blood lab checks.

My mother, who has an ileostomy and Short Bowel Syndrome, suffers with dehydration on a daily basis. In addition, she has Diabetes and Restless Leg Syndrome. With her combination of medical conditions, she experiences electrolyte imbalances that cause severe daily leg cramps that are so painful she is brought to tears on a regular basis and experiences partial intestinal blockages on an almost weekly basis.

So when I was contacted by Einsof BioHealth regarding a hydration product, I immediately thought of my mother's frequent dehydration. I have been given this product as part of a product review. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

I received Speedlyte, a product for Pediatric and Hypotonic Dehydration. When I approached my mother about using Speedlyte to improve her leg cramps, she was interested and sought the medical approval of her doctors. My mother was diagnosed with abnormal kidney function and must be mindful of the products or medications she utilizes. Her Gastroenterologist and Nephrologist both approved her use of Speedlyte to boost her hydration.

Speedlyte was designed to increase absorption up to three times faster thereby requiring less volume of liquid than other products by utilizing an Encapsulated Nano-Electrolytes formula. This means the transportation of electrolytes into the cells is more efficient and allows for rapid rehydration. With this different formula, Speedlyte can be absorbed in spite of a reduction in villus cells as a result of diarrhea. According to Speedlyte data, this new formula has been shown to reduce unscheduled intravenous rehydration therapy by up to 19% and reduce scheduled intravenous rehydration therapy by up to 73%.

Speedlyte comes in an orange flavor and is relatively low cost for a 20 ounce bottle through Amazon.
It is also made without any artificial flavors, colors, or sweetners and contains a low amount of sugar. This is important as sugar and artificial sweetners increase diarrhea and sugar content must be monitored for those with Diabetes, such as my mother. My mother was approved by her Nephrologist to drink two bottles a day. However, due to the size of bottles my mother opted to drink one per day. She drank a bottle throughout the day rather than in one setting. She was not fond of the orange flavor but did report it tasted better when it was chilled. I, however, did not mind the orange flavor and found it to more appealing than other orange hydration products. I was advised by a Speedlyte representative that the orange flavor is being improved and additional flavors are being developed for future release.

My mother often experiences worsened leg cramps in the evening and during the night after she exercises during the day. She found by drinking Speedlyte through the day she no longer experienced leg cramps in the evenings or during the night. After exercising during the day, she would begin to experience the beginnings of a leg cramp in the evenings. However, upon drinking Speedlyte at the onset of a leg cramp she was able to curtail the leg cramp from developing within 20 - 30 minutes of ingestion and the symptoms dissipated. This allowed her sleep to improve significantly as she wasn't waking up with cramps and required to "walk them out".

Overall, my mother was satisfied with the reduction in her dehydration symptoms while utilizing Speedlyte and found it to be a "good product". Also, as an added benefit the representative advised me that some Medicare beneficiaries are able to receive Speedlyte through their Medicare benefits for a monthly supply.

If you're interested in learning more about Speedlyte or trying this product for yourself, you can find more information at Einsof Biohealth and purchase through Amazon.

The Journey of Chronic Illness

Jour·ney

ˈjərnē/

noun

noun: journey; plural noun: journeys

an act of traveling from one place to another.

"she went on a long journey"

synonyms:

trip, expedition, excursion, tour, trek, voyage, junket, jaunt

Imagine yourself disembarking on an adventure exploring a vast land with only your mode of transportation and a map. This map can take you anywhere amongst this land. Whichever way you choose to go will determine what you encounter along the way. Each way you turn will vary in the experiences and people you encounter. Some ways will be similar while others will be substantially different in comparison. Individuals may join you and leave you at various points. Your experience along the paths you choose differ from those of others according to their chosen paths. No adventure will be exactly the same. There are too many variables leaving each traveler with a unique experience, a unique reality.

Life is a winding road of never ending experiences and adventures. The synonyms of journey truly fit the uncertainty of life. You never know what life has in store for you, what will come to be with each decision you make in life.

And so it is with chronic illness as it is with life in general. We never know from day to day if our chronic illness will change. If we will experience new symptoms or a reduction in symptoms. We enjoy our plateaus of good health while they last but these plateaus are never guaranteed. Change is the nature of chronic illness. The doctors we see, the hospitals we attend, the medications we take, the foods we eat all play a role in our chronic illness life. Each may be a positive or harmful decision for us that has the power to drastically change the development of our chronic illness. Unfortunately, like life, we don't have the foreseeing power to know what the best decision is for our chronic illness. Instead, we must make the best decision based on the knowledge we have and the circumstance we are faced with at the time. And we hope for the best.

Others disagree with using the word "journey" to describe living with a chronic illness. I, however, embrace this term for my chronic illness life. My life and my chronic illness are not mutually exclusive. For there to be one, there must be the other in my life. It is a fully inclusive circle. This isn't my preference but it is the way it is and so I will embrace this journey.

Just as we trek through life that is full of surprises - good and bad - so we trek through the journey of chronic illness. I have been overwhelmed by my encounters with others I never would have crossed paths with - physically or virtually - if it hadn't been for my chronic illness. I have made lifelong friendships with many individuals on their own chronic illness journey. I have held very dear friendships that played important roles at key moments in my life. I have been blessed with some outstanding doctors who help me along my journey. I have also been cursed with some very devastating moments throughout my chronic illness but with the support of family, friends, and medical providers I have survived those dark moments and am flourishing along a good path at present.

We all enjoy the smooth, easy paths on our voyage through chronic illness. However, we wouldn't be able to fully appreciate the beautiful tours of life if it weren't for the dark, trying passages. When we cross the bridge from the dark into the pristine, we are able to enjoy the ease with a new understanding, a new gratitude. Our eyes are reopened to the greatness of life and so we experience life with renewed senses. Unfortunately, we wouldn't experience these fulfilling moments to the same degree if we didn't trek through the difficult paths of life. And so these experiences go hand in hand to make the experience that is life complete.

Throwing Out New Year's Resolutions

I'm just going to say it, I think New Year's resolutions are a bit silly. Sure, I've made my own resolutions for the new year in the past. They were usually for some type of betterment of myself. Some new, improved version of myself. A healthier, skinnier, this or that better me. And like the majority of people, I didn't keep my resolutions. And then I asked myself "Why am I waiting for the new year to start accomplishing my goals? Why not start now? Why do I need a holiday to do something for me?"

So I threw them out and I started doing things for me in the now, not for some day. This was particularly true as I found my own strength and freedom after my marital separation and divorce. I promised myself to do more things for me and I made a list of what I wanted for myself. And so far, I've kept those promises to myself. I didn't wait around for a few months to pass for the new year to come around. No, I made a change that day and with the first opportunity that came along for me to act on my promise, I did. I want to stretch my wings and experience the life that I want without fear that I won't have someone to share those experiences, those adventures with along the way. I'm determined to enjoy and experience life regardless who is by my side or rather, who isn't by my side. This is my life goal and it isn't waiting around for a particular day. It's happening now and I best be on board or I'll miss out.

We don't need some day. We need now. Life is too short and too complicated, particularly when chronic illness is involved. We never know what tomorrow will hold. The days change from one way to another in a moment's instance with our health challenges. When we have the moment, let's grab it. Let's not wait around for the next moment.

Since I stopped waiting for the next moment to come along I feel more alive, more content. That's what I want for all who I cross paths with along my life's journey. I want to feel the thrill of life pulsing through my veins. I want us to enjoy the ride together with no one on the sidelines waiting.

What's your life's ambitions? What do you want out of your life? This isn't a resolution, this is a life change. It's more important than a once a year resolution, this is for a lifetime. With something this large, it can require soul searching to discover our heart's desires to determine what really makes us happy and excited about life. Once we make this discovery we can start to establish our game plan for achieving what we want out of life. Every game plan gains momentum when we start with small, achievable steps that lead us to our ultimate goal. Let's make a plan and go for it. Get out there and enjoy life for all its magical ups and downs, twists and turns.

My Death is Acceptable

I'm comfortable with death. Anyone who knows me will hear me casually talk about death, particularly my own. It happens. I think it would be astounding if we were all accepting of death. It's natural and we are all going to make that passage at some point so why not accept the inevitable. Why stress about our own future deaths when we can enjoy life now and rest in the peace of the future?

I've faced my own death when I was a child and a teenager. In grade school, due to the negligence of ER staff it was missed that I was experiencing a life threatening blockage. Instead, I was dismissed as a whiny child and sent home with pain medications. The following day my parents returned me to the ER and this time the ER staff completed more thorough testing to discover my small intestine was wrapped around itself and surrounding organs. As a result of the delay in treatment, part of my small intestine - including my jpouch- died and my doctors deemed it a miracle that I had survived.

In high school, after my straight pull thru surgery I had so many adhesions from my previous surgeries that a stricture was created around my small intestine. I was constantly barraged by vomiting and excessive diarrhea. To the point that my body couldn't maintain. I was going to the doctor every week for regular lab monitoring resulting in frequent hospitalizations to try to stabilize my out of control electrolytes. The reality was that I was slowly dying. My doctor later told me that she never knew if she would see me at my next weekly appointment, if I would live from week to week.

I recall one morning, the sunlight hitting me on the couch where I spent most of my time as I was too weak to climb the stairs to my room. I remember surrendering to a sense of peace and serenity that I've never experienced before or again since. I sensed death yet it was so serene, it was lovely. I felt safe amidst my world of unknown and uncertainty. And then I was overcome with a sudden urgency to share my goodbyes with my mother. My mother laid my head upon her lap and stroked my hair as I gazed up at her and told her my goodbyes. Her eyes welled with tears as she listened. I was ready. I was at peace. Within the next day or so, I was back in the hospital once again. My doctor told me I was at risk of a heart attack or brain seizure at any moment.

If it wasn't for the unimaginable sense of peace I experienced that morning, I might still be scared of my own death. But instead, it left me in awe to embrace my own mortality. When my time comes, I'm ready. If I don't meet all the goals I have set forth in time, that's okay. I will live without regrets. I do, however, have a preference for my expiration date. I'd like to walk on by the age of 40, for my own personal reasons.

And so it's hard me for to understand the fear others hold about death. I particularly have an extremely difficult time understanding why others are so uncomfortable with my acceptance of my own death. In fact, when others repeatedly question my own acceptance it begins to infuriate me. Do we question that another is scared of their death when that person states so? No. Then why would we question someone who states they accept their own mortality?

To be honest, if I were to develop cancer that required chemotherapy for survival...I'm not sure I would elect to undergo chemotherapy. I'm very tempted to simply let the cancer run its course. It's not a wish for death or a means for suicide. I'm just simply comfortable with death and quite frankly I have an intense fear of outliving my parents. My preference is to not outlive my parents and yet my parents are one of my main priorities in my life. I feel as though my life purpose is to remain as independent as possible so that I may meet my life needs and those of my parents. Therefore, I'm conflicted about accepting such an opportunity should it arise - torn between my preference and my sense of duty to remain living in order to provide any future caregiving needs my parents my require.

I've been embraced by the warmth of death and so regardless if my time comes sooner or later, I will accept and welcome my transition into the after world. The present world will have its frightening moments that challenge us. However, we need not feel frightened or challenged by our own mortality. May we all rest in the peace that is waiting for us when our time nears.