Sunday, June 25, 2017

Traveling Abroad with Short Bowel

I prepared myself for a few days traveling from the United States to Mexico to attend a destination wedding. With Short Bowel Syndrome (SBS), I'm always nervous about traveling as I need to have an accessible restroom. Without a restroom, my activities are limited and I am at risk of an incontinent mishap. Unfortunately, SBS is a very unpredictable rare disease. My food and fluid intake, activity level, sleep, and medications all affect the intensity of my SBS. If I don't eat or drink, sleep well, and limit my activities I tend to have a better success rate with reducing SBS urgency and even flare ups. However, when I partake in the necessities of life - such as eating and drinking - my digestion process is short resulting in frequent, often urgent restroom trips. Activity furthers my digestive process also adding to the frequency.

Fortunately my travel was only from the middle of the US to Mexico resulting in two flights lasting approximately a total airtime of 3 hours. Not a bad flight time. Needless to say, I was not nearly as nervous as longer flights I've flown such as to Paris, France during my college years. However, anytime I travel outside of the US, I am also anxious about restroom access. The US has a fair amount of accessible and free restrooms for travelers to use. But this isn't always the case in other countries that is further complicated by requiring the local currency when restroom use requires payment.

And so I prepared for my flights. I was lucky that my departure flight was an early morning flight thereby aiding in my fasting efforts to reduce SBS symptoms. My return flight though would be late afternoon meaning I had to decide if I wanted to eat my day's meals prior to flying or fast for the entire day. I double checked that I had my Lomotil medication to slow my bowel and took my pills with plenty of time for the medication to take effect prior to my flight. I opted to forgo the included beverages and snacks on my flights in order to further reduce SBS symptoms and to utilize the restroom with every given opportunity to help prevent additional issues.


Now Amber Resort. Puerto Vallarta
I arrived at an all inclusive resort for the wedding. I was comforted by the fact that I had my own room to myself so I could have private restroom access whenever necessary and I quickly located the public restrooms. Fortunately at a resort there are plenty of restrooms so I wasn't too concerned. Outside of the resort though would be another story.



Cigar Shop and Restaurant

Soon after arriving at the resort the wedding group decided to embark on an excursion to explore the local town and complete some shopping. We took a taxi to a local cigar shop and restaurant. To my relief, it had a free restroom. To my dismay, the group had decided to also eat at the cigar shop. I was once again faced with the decision to eat or not to eat. Do I eat and drink thereby creating increased restroom need or do I continue my fast of food and beverage to limit my need and allow for increased activity? I chose to fast. We would be walking to local shops and a flea market and I was uncertain about the distance and restroom access outside of the safe haven of this cigar shop and restaurant. I chose correctly as there would be a restroom at the flea market but it would be a for fee restroom. I did have some pesos but not in the correct amount needed. I made the short walk to the flea market and we spent a quite amount of time shopping before heading back to the cigar shop to wait for a taxi back to the resort. To my favor though, with the cigar shop's restroom and my decision to fast I wouldn't require restroom access beyond the cigar shop.

The Wedding Group
I wouldn't leave the resort for the remainder of the trip which provided me some relief and freedom. I chose not to participate in any other local excursions although there was an abundance of interesting and exciting options. Such as a Rhythm of the Night boat trip to a nearby island complete with performances and dinner. But again, I had to question if the boat had a restroom and what about restroom access on the island? It was a several hour excursion. Or the 6 hour city tour that the group decided to embark upon. What was the restroom access like for the duration? I opted against such activities but I would still have to face the decision of swimming or not. Of course I wanted to swim but my body needs to cooperate in order to allow for swimming. I would also be faced with the decision if I should eat breakfast or not each morning. Breakfast starts my digestive process in motion and sets me up for possible activity limitation requirements. I chose to risk the activity limitation and ate breakfast each morning - a behavior I don't normally participate in during my regular day schedule. The next day would not go as well as the first day due to my body not cooperating as



needed. My Lomotil medication didn't even seem to phase my bowel. I was blessed with plenty of restroom access but I would have to forgo activities such as swimming this day. However, this was the wedding day and I opted to take a second dose of Lomotil that afternoon in preparation of the wedding reception.

Due to my abdominal adhesions from surgeries, I have chronic nausea and pain when I eat and the nausea has a tendency to strike even when food isn't involved. Such as every morning or when I'm jostled. The next day I would be stricken with severe morning nausea requiring a period of rest before engaging in further activities for the day. I wanted to swim at least once with my friends so I started my morning of nausea with a double dose of Lomotil. The double dose of Lomotil slowed my bowel and with rest my nausea eventually subsided so off to the pool I went. I even managed to eat lunch while at one of the resort pools and I found a pool restroom so that I wouldn't have to travel back to the resort towers when the need arose. I was thrilled with my activity achievement for the day. 

The following day was my last day at the resort and I would depart in the late afternoon. I knew I would likely need to eat at some point during the day but the timing was essential to protect against the SBS. I ate breakfast, realizing it was the safest option. I would fast the remainder of the day including passing up any beverage or snack offerings on the flights home. And once again utilized the restroom at every given opportunity. I made it through US Customs without issue and had enough time for one final restroom use before boarding the last flight home.

To my relief, I had managed my traveling and activities in spite of SBS and I didn't get sick from the local water! It just took some planning and making the better choices for a better outcome. I hope you enjoy travel time and activities in spite of any obstacles as well!


Sunday, June 18, 2017

A Caregiving Father

I've been blessed with two of the best parents any individual could dream of having in their lives. There isn't enough time or enough words to properly describe the depth of my love and admiration for my mother and father. I am often overcome with overwhelming gratitude for each of them. I am in no way unaware of just how blessed I am to be their child. I have a special relationship with both of my parents. And although I am happy to sing both of their praises at any given moment, I dedicate this to my father.



Our Family. 2017
Today celebrates Father's Day in the US and marks the end of Carers Week, celebrated in the UK. Why are these two celebrations intertwined for me? Because my father is a double duty caregiver. My mother also has Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome. Together we walk the life of chronic illness - the same chronic illnesses. She is no doubt my hero and my inspiration for living chronic illness with grace and dignity - to the best of my ability. However, my dad is my rock and her rock as well. My mom is more than willing to help provide caregiving to me when I'm in need but she does have limitations due to her own health. Fortunately for the both of us, my father is in good health and is able to provide caregiving to both of us. Sometimes even simultaneously, such as during my childhood when my mother and I were both hospitalized at the same time. My mother opted for admission to the adjoining children's hospital I was admitted to in order to reduce the burden on my father. A sacrifice I will never forget as this was not her hospital of choice nor would it be mine as an adult.

Not only has my dad been the provider of our family and our rock but is he is also ever willing to provide care when needed. My father married my mother without much expectation or anticipation of what was to come. My mother knew she had FAP but never dreamt it would affect her or any future children the way it has. As you can read in her story at Destination XRide's Mom's Corner, she anticipated her life with FAP would be much like her father's had been throughout her life at the time.

My birth would mark a change for my mother and grandfather's health with FAP. Later my grandfather would require radiation that wreaked havoc among his body and an ileostomy. Eventually, we would lose him to FAP polyps in his stomach that developed into stomach and esophageal cancers. But until this point, he simply lived with a limited effect of FAP. He remained active and in relatively good health for having FAP. This was my mother and father's expectation for my mother.

The reality became clear though a mere 3 months after my birth. My mother had colorectal cancer and not only would it claim her colon leaving her with an ileostomy - it would nearly claim her life as well. My father, a spiritual person, laid his fears and concerns out in prayer and surrendered to whatever would occur - losing his wife of 5 years and becoming a single father or being able to live his life intact with both is wife and their sole child. Children, especially babies, weren't allowed in the hospital ICU unit where my mother was receiving critical care. Yet the nurses saw my mother barely hanging on and let my father bring me in to see my mom. I've imagined this visit countless times in my mind's eye. These visits proved to be a source of strength for my mother as she recovered to continue her marriage and raise her daughter. The doctors though would advise my mother to not bear anymore children as her life depended upon it.

My parents' lives drastically changed with my birth - not only did they welcome a daughter into their world but they also were forced to welcome chronic illness into their world as well. My father never let this alteration in their life plans hinder or alter our lives more than necessary. He graciously accepted the role as caregiver to my mother and later to myself as well. With great love and care, he consistently provides for us in any fashion we need. He is indeed our rock and we are far better because of this life foundation he provides without hesitation.

To all the fathers out there who meet the needs of their families and provide the ever life saving caregiving required, Happy Father's Day indeed.

Friday, June 2, 2017

Loving Iron Infusions In Spite of Needle Fear

My energy is beginning to dwindle again. Although still completing work duties, by the end of the work day I'm frequently no longer having any energy remaining. I am so exhausted that daily activities are out of the question, even showering requires more energy than I have some days. I had my follow up appointment with my hematologist and as I suspected, my iron levels were dropping once again requiring another round of iron infusions.

I was apprehensive about starting iron infusions when my GI doctor first recommended it. I had been taking iron tablets for more than 20 years without issue until suddenly in 2015, I could no longer tolerate my iron tablets. Ever since my 2015 hospitalization I've been experiencing chronic nausea and increased chronic pain. Iron tablets were adding to the pain and did lessen when I discontinued the tablets. However, I still required iron or risk worsening anemia. With my hemoglobin dropping and my chronic fatigue worsening, I was desperate to start iron infusions. I no longer cared about my needle fear, I just wanted to feel better.

And so my experimental adventure with iron infusions began. After my first round of infusions, it took about 4 months and I was requiring another round. After my second round, my doctor changed me from ferrous sulfate to ferrous gluconate tablets in an attempt to supplement my iron intake again and lengthen my time in between infusions. With this new addition, I was able to lengthen my in between times to six months! However, three months after the third round and I'm back to the four month in between time.

Sure, every time I sit in the recliner awaiting my IV to be started, my PTSD is triggered. Anxiety begins to overwhelm me. I feel my body automatically sinking back into the recliner more and more, as if trying to be swallowed by the recliner in an effort to escape the situation. I force myself to hold back tears only to fail when I require two or more attempts to start the IV. The fear, the pain making me question why am I putting myself through the torment.

But I remember why I subject myself to my needle fear when I have a weekend full of activity due to overflowing energy. I remember, that energy, that ability to participate in two days worth of activities...that's why. Because I love those days. Sure, you'll find me often in bed by 8 pm on a weekday after working. And sure, I can rarely stay up past 10 pm. But those days when I can engage in activities for hours...those days excite me. Those days are worth it all.

I have another week before my next round of iron infusions and I'm ready for the day to arrive. I'm ready to have energy again on a consistent basis. It's uncertain regarding the frequency for receiving the iron infusions. However, regardless if infusions are required every three months or longer - I'm willing and ready.

Saturday, May 13, 2017

Bullying and Chronic Illness

Living with a chronic illness is an intense stress and burden upon one's self and when it is coupled with resulting medical trauma, it is a recipe for mental health concerns regarding adjustment and coping. When you add a young age and bullying to the mix, it can be disastrous.

I always thought that my morbid death orientation and twisted sense of humor stemmed from the medical trauma I endured as a child. I was partly correct. During my own soul searching, I had an epiphany and realized my obsession with death didn't really exist until I was bullied during my 6th grade year - two years after my first surgery.

I had my first surgery at the end of my 4th grade year. Over the course of a year I would survive 5 surgeries and a near death experience and develop PTSD. Far from the expected two surgeries I was scheduled to have to place a temporary ileostomy and then reverse the ileostomy with a jpouch by the end of the summer break. I was home schooled during my 5th grade year due to my unstable health and frequent hospitalizations. As I prepared for my 6th grade year, I was malnourished and my doctors diagnosed me with relative anorexia. I was placed on a weight gaining diet and began to stabilize physically. As I recall, I was beginning to mentally survive as my PTSD was calming down with the reduction in medical procedures. I was adjusting the best I could to my unexpected ileostomy that was believed to be permanent. However, I was anxious to start back to school, particularly as 6th grade meant middle school - a new level without a transition and I had lost contact with the majority of my grade school friends during my year of absence. I wasn't psychologically ready for this change and I pleaded with my parents for an alternative. My parents opted to transfer me to a different school district that still held 6th grade in the grade school to allow me time to acclimate to returning to public school. In the end, this was a great decision as I would come to enjoy my school district and experience a challenging education with fantastic teachers that would prepare me well for college and a large group of close friends who supported me in my future health issues during my high school years. Unfortunately, this end result would require me to survive a very difficult time first.

My 6th grade year started off well. I was the new kid in school and painfully shy. I had no sense of fashion or style. I wore baggy pants and long, oversized t-shirts frequently to fit my level of comfort with my new body. I was uncomfortable wearing anything that might give away the presence of my ileostomy. I was introduced to a group of girls and was accepted. I managed to make several friends and all was going well.

That is, until winter break ended and I returned to school to find myself shunned by everyone I knew except for two girls - who were not in the circle of girls who orchestrated the shunning. Unfortunately, I didn't have classes with these two girls very often if at all and so I was left to myself the majority of the time. I was bullied relentlessly for the remainder of the school year. The bullying was led by two girls in the previous circle of friends I had enjoyed. I was never given an explanation for why my previous friends had shunned me and told others in our grade to shun me as well. I began to spend my recess in the classroom with my home room teacher as it was lonesome to play by myself outside everyday and one of the girls would often hit me in the head with objects such as hand sized rocks or hard plastic lunch boxes. My days were spent simply trying to survive so that I could return to the safety of my home.

The combination of this bullying with the medical trauma I had experienced within the previous two years was too much for my childhood self. I was no longer able to maintain coping and I became consumed by hate and anger. I was angry at my classmates for bullying me, at my parents for my disease, health, and for giving birth to me, and at my medical providers for my ileostomy and near death experience. I no longer was learning to cope and adjust to a life with an ostomy. My coping mechanisms became an obsession with death - my own death and the death of those I despised. Quite frankly, I became suicidal and homicidal. I prayed for my death and the death of others everyday for hours while fantasizing about our deaths, planning and plotting how I could bring about death. I had opportunities I could have taken to enact my devious plans. And yet, my health saved me and others from myself.

I managed to stay out of trouble during adolescence thanks to my health. My health made me timid in many ways and helped narrow my chances for typical adolescent mischief. I was too often ill or felt inhibited by my health to partake in high risk behaviors or activities. This inhibition coupled with my logical mind kept me from harming myself or others. Not only did I joyfully envision the demise of myself and others - I also envisioned the repercussions of such devious actions. Knowing the likely consequences that would occur if I acted upon my devilish desires kept me from harming anyone.

FAPVoice Bullying
Survey Results
The effects of bullying was far reaching for me that could have resulted in disaster for myself and those around me as well as their loved ones if it wasn't for my own ability to logically think through my thoughts. Unfortunately, this isn't the case for everyone who is bullied. Far too often individuals are completing their suicidal or homicidal desires causing great devastation. In the age of technology, bullying is growing, reaching vast audiences and victims.

FAPVoice launched a survey to determine the prevalence of bullying among their community members. I was heartbroken to read the stories of others' experiences. It's become common to hear about bullying within schools. I didn't expect to hear about bullying within the work place or from medical providers and family though in regards to chronic illness. I was particularly bothered by the story of one individual who felt bullied by her family and medical providers due to her medical decisions.

The sad fact is that we can encounter bullying anywhere and from anyone. But there are things we can do. We can stand up for ourselves and for others. We can reach out, understand, and educate.

Consider joining forces with anti-bullying groups and campaigns, such as No Bullying - a global source for education and support to stop bullying.

Regardless of your age, your place, your role or your avenue. You can make a difference.

Thursday, May 4, 2017

Intestinal Blockages

It could have started due to various causes. There are too many variables affecting my daily physical well-being. I can rarely pinpoint one cause for anything. It's most likely a combination of actions or it may just be random luck. It's not always easy to pinpoint the root cause of a flare up or an intestinal blockage.

Due to a combination of iron tablets and regular iron infusions, I'm finding myself with increased energy on the weekends. This was a prime weekend for activity. I had energy for a weekend full of activities. Perhaps I pushed myself too hard two days in a row.

Saturday I wanted to attend a local festival so in preparation for walking and possibly limited restroom access, I took one Lomotil tablet in the morning to slow my Short Bowel Syndrome. Normally, I have about 20 bowel movements a day thanks to my Short Bowel. This can be problematic when faced with physical activity and limited restroom access.

I hate taking any anti-diarrhea medications. The crazy thing is, I used to take the max doses allowed of Lomotil in an effort to slow my bowel for daily functioning. Now, one Lomotil tablet leaves me in pain and disrupts my normal bowel function which has its own negative side effects. However, I am able to participate in activities with less worry about restroom access. The slow down action of Lomotil has become so severe for myself that I can accidentally induce an intestinal blockage simply by taking one Lomotil tablet two days in a row.

Saturday evening started off with my Short Bowel Syndrome emptying itself as much as possible once the Lomotil started to wear off. My bowel was making up for only requiring very few restroom trips during the day. Additionally, the slowed bowel agitated my intestinal ulcers resulting in extreme blood loss for about 6 hours. I felt alright though. I had made it through the life span of the Lomotil and my bowel was returning to its normal routine.

I woke up Sunday fairly normal except my bowel was a bit angry still at me leading me to not feel comfortable leaving the house unless required. Fortunately, I was able to stay home until my bowel calmed down. The morning transitioned into a pretty bowel typical day for me. In the evening, I decided to snack on pickling cucumbers. As I finished my second small cucumber and reached for the third one, I remembered the time I gave myself an intestinal blockage by eating crab salad made with a whole English cucumber. A whole English cucumber is too much for my intestine to handle. Before this occurrence, I never had an intestinal blockage caused by food. Not once. So I rationalized that pickling cucumbers are smaller and I've eaten two in combination with tomatoes, onions, and olive oil without any issue. So one more wouldn't hurt anything.

Monday started with uncomfortable bloating and limited bowel movements (for me...remember I'm used to 20 times a day) but a lot of my mornings start this way and improve as the day goes on. So I ignored it; just another day. I drank some coffee and ate a snack and lunch and my symptoms seemed to start to improve. But then my day drastically changed. Suddenly I found myself having a flare up. I was running to the restroom every 5 minutes - literally - and started having painful abdominal cramping. This went on for hours, I was excited when I was able to wait 20 minutes in between restroom trips. I took the 20 minute interval for granted and it returned to the 5 minute intervals. If I can just sleep, this will clear up by the morning I think to myself as I draw on past flare ups.

I managed to finally sleep for a few hours and I awoke to a severely distended
abdomen and
excruciating cramps. Now my bowel movements had gone from 5 minute intervals to barely any. Somehow, I went from flare symptoms to blockage symptoms over night. I tried drinking hot tea, eating soup, using a heating pad, lying down rather than sitting up. Nothing was making a difference. With hope, I took the max dose of milk of magnesium laxative to help out. Normally, if I take a laxative I have flare symptoms but it does help flush out my intestine and stop the abdominal cramps and bloating. The laxative did nothing this time. I knew I was getting into trouble but I still refused to accept that I was having an intestinal blockage and I refused my parents' suggestions of going to the ER. In desperation, I stopped trying to keep my food and drink down. I allowed myself to vomit until I couldn't vomit anymore. The pain and bloating improved but was still present. My mother convinced me to take a Lortab for the pain so that I could sleep. As the night progressed, the symptoms began to lessen. I started to have more typical for me bowel movements. I clung to the hope that this blockage was finally clearing or I would be forced to visit the hospital the next day.

Fortunately, the combination of vomiting and a Lortab did the trick this time and the blockage progressively cleared itself over the course of the third day. I was lucky this time.

I replayed my actions taken over the weekend. Was this caused by a combination of factors? Did I start into action a blockage when I took the Lomotil and then cemented it into place by eating too many cucumbers? Was I having a flare at all or was it just the early signs of a blockage?

With Short Bowel, there isn't always a definite cause for how my bowel will act on any particular day. But I need to be mindful of the choices I make to help protect my physical well-being. I need to pay heed to my body's triggers. I've learned that I need to be careful about how many Lomotil tablets I take and my body is starting to require more attention to food limits. With chronic illness, we are faced with periods of change requiring us to adapt to yet, another change in our health and how our bodies respond to daily life.

Friday, April 7, 2017

Awaiting Results

The year 2015 ended my 8 year streak of being free of cancer screenings and hospitalizations. During an unexpected hospitalization for dehydration, I finally consented to undergoing scopes again to screen for cancerous polyps in my GI tract. I had previously refused scopes after my last one in 2007 due to the harsh prep my GI doctor required prior to each scope. Psychologically, I couldn't endure the pain that accompanied the prep and preferred to take my risk with cancer than undergo the psychological torment any further. However, I relented with a new doctor who didn't require a prep for a scope due to my short bowel syndrome. In 2015, it was discovered that I had developed stomach polyps in the 8 year span without scopes and I had 4 deep ulcers at my straight pull thru connection site.

I thought I would begin undergoing yearly scopes once again with this new doctor. However, in 2016 my doctor advised me that FAP guidelines had changed to recommending scopes every two years rather than yearly. I wasn't one to argue. After all, I had gone 8 years without scopes. I wasn't too worried about one more year. This doctor also advised me that FAP polyps only develop in the colon, rectum, and duodenal area - no where else in the GI tract. I question this as I've read and my first doctor advised me that FAP polyps can develop anywhere in the GI tract. My first doctor even anticipated I would develop stomach cancer by the age of 30. Fortunately, the stomach polyps discovered were benign and non-FAP.

I started 2017 off with yet another doctor and just completed this year's scope with my new GI doctor. He entered my recovery period and advised me that I still had small stomach polyps, a superficial ulcer at my connection site, and a new polyp on my ampulla. Biopsies were taken of the new polyp and the ulcer and I'll receive my results within a week. The news of this new polyp shot through my body. I wasn't able to keep my first thought locked within my mind as I blurted out "I'm not going to do chemo".

I realize there's a chance that this ampulla polyp isn't even a FAP polyp. I realize there's no sense in worrying while awaiting for the biopsy results. Stressing and worrying will not change the results nor will serve any beneficial purpose. Yet I can't forget that my understanding from my doctors and the experiences of fellow FAPers is that this area is the second area most likely to develop cancer after the colon. Based on this knowledge, I'm led to anticipate that this is indeed a FAP polyp.

So what if it is a FAP polyp? It's already been removed for biopsy. But what next? How soon will more develop? I feel as though I'm simply waiting for the other shoe to drop. In all likelihood, I will develop more pre-cancerous or cancerous FAP polyps in my lifetime. In all likelihood, I will develop cancer again in my lifetime. So why can't this be this time? Why can't this likely possibility simply occur now rather than later. Why am I always waiting for the inevitable? Can't it simply occur and be over with. I'm tired of waiting. If I'm going to develop cancer, let it be now. Not later.

And so I wait.
I wait to hear my biopsy results.
I wait to hear about what my future may hold for me.

Saturday, March 11, 2017

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.


Sunday, February 26, 2017

Hydration via Speedlyte: A Sponsored Post

This is a Sponsored Post

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.


Tuesday, January 17, 2017

The Journey of Chronic Illness

Jour·ney
ˈjərnē/
noun
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.