Chronic Pain and Physical Therapy

Chronic pain – it’s been my companion in life early on. It served as an early warning system that there was something wrong with my body. It was with this chronic abdominal pain that led to discovering my Familial Adenomatous Polyposis diagnosis at age 8. It was with this that my colon was able to be removed in time to prevent my already turning cancerous polyps from exploding into cancer at age 9.

I can’t say it has served a noble purpose since then though. Instead, it’s become a minefield for me to navigate; trying to find my way to balance it and enjoying life’s activities. Throughout the years, I've required physical or occupational therapy 4 times for the management of chronic pain - back pain, neck pain, tendinitis, and nerve pain.

My first year of surgeries, I remember the chronic pain I began to experience in my back. During my hospitalizations, I required my spine to be lined with what felt like an endless row of ice packs to merely numb the pain. I remember the smell of the powder that lined the inside of the ice packs. I remember how they felt in my hands and the coldness along my bare back. I remember the agony. Perhaps, if we had realized during that year that Morphine doesn’t have any effect on my pain it would have been different. We wouldn’t realize this though until my surgeries during my high school years. The chronic back pain would have been different too if my doctors had referred me to physical therapy after my surgeries to strengthen my severed abdominal muscles so that they would be able to support my back again – thereby reducing or alleviating my back pain.

The next few years I don’t remember much, and definitely not how I physically felt. This blocking out of memories is part of my coping mechanisms with the medical PTSD I developed from that first year of surgeries. I believe I must have been healthier during my middle school years – I didn’t have any hospitalizations during that time. I wouldn't have hospitalizations again until I underwent my ileostomy reversal in 2001. This would lead to chronic pain I haven’t been able to ignore or forget since; pain that changes over the years but has remained constant.

Following my ostomy reversal, due to adhesions I began having severe abdominal pain that worsened with ingestion of food or liquid. The severity of this pain has varied over the years. For the first 6 years following my ostomy reversal, it was at its peak in severity. I remember every time we’d go to a restaurant, I’d lie down on the bench at our tables, curled up in the fetal position trying to cope with my abdominal pain. Ethnic foods caused the most pain amongst the foods I ate – but there wasn’t any food that didn’t cause pain. My body finally began to adjust to its “new plumbing” I suppose, and the pain did decrease in severity after those first 6 years. It remained at this more manageable level until 2015.

In the meantime, I would develop tendinitis in both wrists and chronic neck pain. Due to malnourishment throughout the years, I developed tendinitis in my wrists and degeneration in my neck allowing for a bulging disc to occur. I underwent a few months of occupational therapy to manage the tendinitis pain and I required 6 months of physical therapy to manage my neck pain. I continue to have chronic pain in my wrists and neck at a tolerable level majority of the time, except for sporadic flare ups.

In 2015, I was malnourished and dehydrated from depression during the height of my marital issues. As a result, my blood pressure bottomed out while at work and I fell, hitting my head on hard tile. This event would lead to a spiral of new pains over the next several years. A spiral that wouldn’t be fully understood until 2022.

Since I fell at work, I was required to be evaluated at the ER – which led to my first hospitalization since my last one in 2007. During this hospitalization my pain would once again change, and it changed overnight. The night before I was discharged, I had a headache during the middle of the night – a rare occurrence at the time. It wouldn’t stop and I was only ordered Tylenol and Morphine for pain. I don’t like taking pain medication of any kind – so much so, I forget that OTC medications such as Tylenol, Ibuprofen, Aspirin, etc. even exist. I couldn’t sleep and the headache pain wouldn’t stop, so I asked for Tylenol. That didn’t make a difference and my only option was Morphine. I didn’t anticipate the Morphine to be effective – it never has been before, and it was in the middle of the night; I didn’t see any sense to have an on-call Hospitalist be contacted for a pain medication to be ordered for a headache, especially when I was to be discharged the following day. So, I tried the Morphine and as expected, it didn’t help my headache. Instead, it caused severe constipation that would in turn cause severe abdominal pain. Along with this pain came severe nausea – something I don’t recall experiencing since having my 7^th surgery to remove adhesions following my ostomy reversal. This new, severe duo has stayed with me ever since waking up that morning following accepting the Morphine. It was like a switch had been flipped and it would take months of trial and error with medications to find the right combination for me. I relied on Bentyl and Compazine three times a day. These were the only medications to manage my pain and nausea so that I could function more easily. Without them, it was difficult to get out of bed much less participate in life. My doctors couldn’t find any other reason for the new pain and nausea other than adhesions with gallstones contributing as well. And this is how it stayed until my 8^th surgery in 2021 to remove my gallbladder and adhesions for the 3^rd time.

Magically, the first 2 weeks after my 8^th surgery, my pain and nausea ceased. I stopped requiring the Bentyl and Compazine. However, at the 2.5 week mark my pain would once again change – and change to a level I had never experienced before. The new pain reduced me to becoming bedbound outside of the time I forced myself to go to work. I lived like this for 4 months following this surgery. Test after test was completed, medication changes were made; a cause couldn’t be found, nothing helped to provide even a glimpse of relief other than lying down. Any activity, even sitting up, worsened my pain. My GI was at a loss and didn’t know what else to do than to try Lyrica. Lyrica changed my life within a couple weeks my pain started to lessen to a tolerable level, and I could start venturing out of my bed outside of work hours. During this time, I was consulting with every specialist possible. After 6.5 months, I finally had an answer and treatment plan – it was Abdominal Migraine that started from my fall in 2015 and was exacerbated by my gallbladder surgery.

Fast forward to August 2022, my pain and nausea were well managed by my Neurologist treating the Abdominal Migraine, but I still had pain that worsened by too much activity. While I was able to maintain working and participating in activities of my choice again – I risked a 3-day pain flare anytime I exerted too much activity. What was too much activity? I didn’t know, especially because the pain flares wouldn’t hit until 2 days afterwards.

But my life would once again change in respect to my chronic pain when I asked for physical therapy. Within the course of 3 months, I've started to have days with barely any pain, days that I've felt better than I had in years.

My body had become severely deconditioned during those 4 months of being bedbound and while my medications are appropriately treating my nerve pain, my muscles were too weak and contributed to my pain. I required physical therapy twice a week for 2 months to focus on strengthening each of the 6 major muscle groups to better manage my pain. My progress deteriorated too fast when I decreased to once a week even with exercising at home. I had to slowly increase my exercises, incorporating new exercises and their frequency and level of difficulty to manage the pain flares that occurred after each milestone in my therapy. There were days that were emotionally difficult for me as I would be filled with frustration and hopelessness with each “setback” in the progress I was making. There were times I would quietly cry without control during my therapy sessions during a pain flare.

Over time, I went from not being able to tolerate 2 days of activity in a row to completing 10 consecutive days of exercise without a pain flare. I could have kept going too on that streak, a pain flare didn’t stop me from continuing on. I was feeling particularly emotionally and physically worn that I let myself have a day or two of rest – and really our bodies need a rest day after 6 consecutive exercise days.

The last month of physical therapy I was able to decrease to a session once every two weeks while maintaining exercises at home. Upon being able to accomplish this decrease without having a pain flare, I was ready to graduate from physical therapy.

I’ve learned I’m going to have to maintain exercising at home on a regular basis to manage the pain from my Abdominal Migraine in conjunction with my nerve medications or the pain will return to its previous level. This is a challenge for me. I haven’t required to maintain my physical therapy exercises in the past. Previously, I was able to maintain the gains I made in therapy, but not this time. My pain level increase once again with a mere break in exercises for 4 days or more.

I wouldn’t have been able to reach pain management without physical therapy. I required the professional guidance of not only what exercises to do but how to do them, the frequency, etc. to move past my plateau of activity and pain. Now I know what exercises to do to maintain pain management and what exercises to do during a pain flare. I went from experiencing difficulty watering my flower garden, sitting or crawling for a few moments on the floor, to being able to do army crawling – something I didn’t dream being able to do following surgery.

I’ve undergone physical therapy before and witnessed the miracles it provides but I didn’t realize the extent of those miracles until now. There are 2 main things I will always recommend now as part of managing chronic illness – counseling for mental health and physical therapy for physical health; they have repeatedly given me back my quality of life.

A Journey From Running Away to Running Forward: Kevin's Story

This is a Guest Post by Kevin Myers

When I was diagnosed at age 13 at the end of 1970 with Familial Adenomatous Polyposis (FAP) and followed with my total proctocolectomy surgery just one week after my 14^th birthday in July 1971, I felt that much of my physically active life was over and had just taken a very deep plunge into depression and anxiety, especially since I had had a high social anxiety most of my life through this time, and now that anxiety felt immense.  However, as I very slowly adjusted to my new “normal”, I realized that I could still be physically active in all the ways I had previously been, except for now being much more self-conscious of my ileostomy, and hence, I was extremely fraught with very high anxiety.  At this time, however, I had no intentions to be a runner.
Toward the end of my high school years, I began VERY slowly to make some social and emotional shifts shortly after my father bought a boat marina, and we had moved to Pearl Beach, Michigan, near Algonac.  As I discovered the creativity in my growing passion with doing the refinishing work on many boats, and as I increased my “partying” activities with my brothers’ and my new friends, I found that I became a bit less self-conscious of my ileostomy.  That trend continued as I progressed into my college years.  My junior year found me traveling to Fort Collins, Colorado, where I remained for much of the summer, working and living my “Western” dream.  Toward the conclusion of this adventure, I began hitch-hiking to see other Western sites in Las Vegas, the Grand Canyon, New Mexico, and meeting so many wonderful people along the way.  I was having the time of my life, and my inner positive Spiritual awakening experiences were significantly expanding to greatly increase my awareness of never being alone.  I had my final ride of this journey from Utah back to “home” to Indianapolis, Indiana, before heading back to college that autumn.  Still, I was not including my running as one of those experiences.


Jumping ahead, now, to 1994, after meeting my wife, Brenda, in 1980, at Western Michigan University, marrying in 1982, and our purchasing our current home in 1985.  I had become aware of a relatively new surgical procedure entitled Barnett Continent Intestinal Reservoir by 1994, in which 2 feet of small intestinal tissue was needed to make an internal continent pouch which would be emptied via a catheter.  This would eliminate any external ostomy appliances, and the catheterization site would be located much lower on the abdominal wall than the traditional ileostomy.  So, I was on board for this and had my BCIR surgery in the Spring of 1994.  I am certain that my bodily image was a rather significant factor driving my decision for the change.  Now I was very proud to display my new bikini swimming trunks!  I initially thought that this all was so very AWESOME to not have to deal with the hassles of an ileostomy any longer.  However, the joy, exhilaration, and new freedom was rather short-lived as I soon developed serious blockages, cramping, and anemia (from the loss of blood in my very irritated intestinal pouch).  Thinking this was due to a dysfunctional pouch valve, I had the pouch re-done in 1998 or 1999, again requiring another 2 feet of small intestinal tissue.  However, the negative physical symptoms continued to worsen as I had two separate and rather serious life-threatening instances of cellulitis in separate legs.  Finally, I converted back to a brooke ileostomy in late 2007.  This resulted in the cessation of all the serious physical symptoms I had had while with the internal pouch.  One of my younger brothers, who received the same BCIR surgery shortly after me, still has a functional internal pouch with relatively few physical symptoms. 

Kevin completing the Grand Rapids Marathon

My Spiritual awareness and positive journey continued, and around 2014 I felt led towards developing the very first Peer Support group for persons with FAP and another hereditary genetic condition, Lynch Syndrome.  Also, during this time in 2014, I had begun running, at times, on a treadmill with very little consideration of doing any outdoor running.  I was 57 at this time.  Now, I mostly avoid any treadmill running!  Perhaps with the advent of someone in my Toastmasters’ public speaking group presenting a speech about some Hot Chocolate run, my interest in outdoor running peaked (anyone who really knows me, understands my LOVE of chocolate!).  The deal for doing my very first running race was sealed when my college attending daughter Erika encouraged me to join her for a Hot-Chocolate 5k race in Columbus, Ohio in November 2014.  We ran that very first race together, and then I was forever hooked on outdoor running.  After this, I found myself consulting about a running training program with a young woman in my employer’s fitness center, who was herself a very accomplished runner. She set me up with progressively increasing difficulty 10-week training programs designed to help me greatly improve my running and training for races.  My following these plans enabled me to train for and complete 5Ks, 10Ks, 15Ks, half-marathons, and finally 3 full-marathons currently.  With my having an ileostomy, I have especially realized the need to remain hydrated – so much more than someone without an ostomy.  I find that I need to change my ostomy appliance more frequently since I have been running. 

I have just learned that due to the CORONA-19 VIRUS, my fourth full-marathon, scheduled for May 23^rd has just been cancelled.  However, I am continuing to run several times/distances per week.

Throughout my experiences with living with an ileostomy and all that entails, I have learned that I can do what I want as I listen to my body, which, as I continue to learn (and strongly believe) is greatly influenced by my mindset messages.  My transition from that highly anxious boy to this more spiritual, peaceful, sociable, and better listener includes this “running forward” chapter of my life experiences and beautiful journey onward.

Kevin Myers is a 62-year old with Familial Adenomatous Polyposis (FAP). He has been married for nearly 38 years, and they have one 24-year old daughter, not affected with FAP.  He and Erika Koeppe began the very first Peer Discussion Group for persons with FAP and Lynch Syndrome in 2015 in Michigan. Kevin's interests include long-distance running, choral singing, being socially interactive, and spending free time with his wife, Brenda in watching movies, playing board games, and walking or bicycling together. He is part of the Rising Phoenix annual awards committee which recognizes persons who have “risen from the ashes” of hardships to become social leaders in their communities. Kevin was a Rising Phoenix Prime Award winner in 2015. Read the guide Kevin recommends for establishing your own support group.

A Love Hate Relationship with Medicine

I have a very tumultuous relationship with the medication Lomotil, generic is Lonox. This relationship changes periodically throughout the years. I take Lomotil to slow my bowel movements due to my Short Bowel Syndrome. The amount of Lomotil I require has also changed throughout the years in relation to how my body is affected by the medication.

During the 6 years that I had an ileostomy, I never took Lomotil. However, when I was able to have my ostomy reversed in high school, I required Lomotil to slow my bowels and help with my control. I started off requiring 4 pills a day and I would take these all at once in the morning and they would last throughout the day. I don't remember noticing any negative side effects such as increased pain or cramping. As that first year progressed so did my adhesions causing a stricture. I endured daily vomiting and excessive diarrhea that required surgery to remove the adhesions causing the stricture. For a period, I not only required Lomotil at maximum dose but also Sandostatin shots. But none of it worked to slow my bowels. I had a negative side effect to the Sandostatin after a while - it caused my elbow to lock. And I was forced to rely on the Lomotil by itself. Gradually throughout a year as I prepared for starting college, my body adapted once again and the Lomotil became sufficient in its job. Due to manufacturing changes, I had to change from the generic form to the brand name for continued efficiency. I managed throughout college taking the maximum dosage and remaining active, completing all the activities I wanted with minimal difficulty.

With my first full time job came new insurance that didn't cover the brand name and I was forced to change to the generic form of Lomotil. Manufacturing must have changed or my body changed once again as the generic form was now sufficient. And then I was suddenly able to decrease the amount I took until I was able to stop it all together for the most part. When I was having a particularly busy day I would take some, varying on the amount based on my activity for the day. As the year progressed with this job so did my stress level. The intense stress of my job wreaked havoc on my body and Lomotil was no longer sufficient even at maximum dosing - my Short Bowel Syndrome was out of control and I had to quit my job. I took time to heal and lessons from this job experience to better cope with future job stress without the bodily toll. Over time, I was able to stop the Lomotil once again and only take it as needed for particularly busy days.

Now, almost 10 years later and I have new problems - increased adhesions. My adhesions cause chronic pain and nausea and I hate taking Lomotil as it increases my pain while slowing my bowels. And if I take too much Lomotil for too long of a period, I risk intestinal blockage. So now I only take Lomotil when I'm having a Short Bowel flare or when I'm going to be particularly busy, such as for an outing or on vacation. I judge the day's activities and bathroom access for determining my dosage for the day. When I'm on vacation, such as on a cruise, I will take maximum dosage as I am very busy during these vacation. If I'm going on an outing, I may just take one or two pills.

The side effects of my Lomotil with my adhesions often causes me to dread outings and activity although I enjoy the activity itself. It's a hard balance to obtain between the bloating and pain that's increased by taking Lomotil with making sure to find a bathroom with any activity. My body seems to undergo periodic changes and so I await to see how it will fare over the next few years and what changes are on the horizon.

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!

Accommodating Holidays

The holiday season is already starting. It's a rather busy time for the majority of people between parties and meals amongst family, work, and friends circles. It's not even December and my month is already booked with holiday festivities.

The holidays tend to be a stressful time for everyone. The hustle and bustle of preparing our homes, traveling, hosting others in our homes, gathering gifts, attending celebrations, and more. However, for those of us with chronic illness there is an added stress of accommodating our health around the demands of the holidays so that we may also enjoy the holidays.

Whether we're traveling or we're remaining local, there's always concerns surrounding the holidays that we need to address for our own self-care and enjoyment.

I've already had to make such accommodations by changing the date of the gathering I'm hosting so as to allow myself to be able to physically attend a work gathering. My parents and I were concerned that I wouldn't be able to physically complete both one same day, even though the times didn't conflict. But would I physically feel up to both parties in the same day? Most likely not.

Many of us have dietary restrictions to take into consideration. This is easy enough to control if we're hosting holiday celebrations but is another ball game if we are visiting another household or party. We may not be able to enjoy the available foods or we may need to limit our intake to reduce the side effects of eating. This can also apply to activity accommodations. For example, I must be mindful of what and when I eat when wanting to participate in activities as food intake worsens my short bowel. This was another consideration for scheduling parties as I often experience pain and nausea after eating that can last for the remainder of the day.

For some individuals activity reduces GI distress whereas for those like me, it increases GI distress. I'm able to better control my short bowel frequency when I limit my movements. In order to enjoy activities that require physical activity I must limit my food and take medications to slow my short bowel.

Pill burden is another common accommodation, particularly with meals. For some this can be embarrassing as it can lead individuals to feel that it draws attention to themselves and their health conditions. Others are bothered by the sheer number and frequency of medications required. When traveling, toting around multiple medication bottles is a hassle that takes up valuable space for other necessary items, especially when flying. Yet keeping medications in their respective bottles can be necessary when flying to reduce confusion about medication necessity and to comply with states laws regarding prescription labeling.

Flying tends to always weigh heavily on my mind with my health condition. This was worse when I had an ostomy but still remains with me even without an ostomy. When I had an ostomy I had to be mindful of how many supplies I had packed, preparing for a TSA search, always worried that I would encounter a TSA agency who would try to challenge my medical necessity for my supplies. What if my ostomy leaked while I was in the airport or while flying? Did I pack enough supplies to last during my visit? Now I worry more about restroom access due to my short bowel. Will I have enough time to use the restroom adequately before boarding? What if we have a delay on the tarmac and we aren't allowed to exit the airplane? What if I urgently need to use the restroom and I'm not allowed to use the lavatory? The what ifs run rampant when I'm flying.
The what ifs reduce in number when traveling by car as public restrooms are fairly excessive in number in the United States although does decrease in number when traveling through rural areas. For travel tips with an ostomy, review the UOAA's Ostomy Travel Tips.

Whichever holiday you may be celebrating, wherever you may be celebrating, I wish you the happiest of holidays and enjoyment with your loved ones.

Focusing Our Efforts

I've been working hard on preparing my new home for moving in and I've noticed several changes - not only physically but emotionally. There's a strong, established connection between behavior, thoughts, and mood - when we change one, we change them all.

I had been experiencing an emotional funk as I was battling my excitement for a new home and grieving my divorce simultaneously. With my new home, I was able to distract myself from my grief and instead focus on my future. And it worked. In spite of a 9.4 hemoglobin, I was able to physically work on my home 14 hour days on the weekends and 4 hours during the week after work. I was pumped with adrenaline, I felt better physically, I was motivated and filled with excitement for the possibilities unfolding before me. And yet just four months ago, with a hemoglobin of 9.2 I was falling asleep at work. And it all changed because I focused my efforts on preparing my new home.

We feel better, physically and emotionally, when we keep active. Whether it's exercise, projects, or socializing our bodies and mind need activity. Remaining stagnant is harmful to our well-being. It is common for depression to take root when we are listless in our activity. Without action, we become bored and isolated, we focus our thoughts on our frustrations and our sorrows. We allow ourselves to become fixated on what bothers us, what's wrong rather than what we can do and enjoy.

The key becomes balance, as it is with so many things in life. Striking balance between activity and inactivity can be difficult at times when we are highly motivated and on a euphoric high of feeling well. We are prone to overdoing ourselves at this point and risk our own health. My family and friends cautioned me as I quickly began to overexert myself in my efforts. I slowed down, started taking breaks and eating regularly again.

Burn out is another side effect of overexerting ourselves. When we start to push ourselves, it is easy to push ourselves too far, too hard, too fast until our motivation and adrenaline fizzle out. We must learn how to pace ourselves in our efforts so that we may take care of ourselves while enjoying the fruits of our endeavors.

Find the courage, the motivation to discontinue inaction and instead focus our efforts and we will find ourselves more fulfilled than when we were listless. Our well-being will be most appreciative of our conscious decision for activity.

From a Child's View

"Is there any part of your body that hurts that would keep you from playing tag?" my niece asked, peering up at me with her big brown eyes full of hope that this time I could play with her and her sister. "I can play" I answered as a smile spread across her face.

This time I felt well enough to chase my nieces through the outdoors. I knew I needed to accept this play invitation as I may not feel well enough to join in their fun and games later. More often than I prefer I've had to tell the children in my life that I was too sick feeling to actively play with them. Instead, I'd watch from the sidelines secretly yearning to join them just as much as they wanted me to play with them. My heart breaks each time I have to decline their invitations to play. And although I see the disappointment in their faces, they've learned to understand that sometimes I just can't play.

My nieces actually know very little about the Familial Adenomatous Polyposis (FAP) disease that my mother and I share. We are the last survivors in our particular branch of the family line to have FAP. For this reason, it isn't overly necessary for the children of our branch to know a lot about FAP as their parents, siblings, and themselves are negative for the disease. They simply know that my mother and I are frequently ill or in pain and we're limited in our activity because of this. Occasionally they will ask questions, which we are more than happy to answer but most of the time they accept without question when we are ill.

I've been amazed watching my nieces modify their play to adapt to how I'm feeling so that I can typically still join them in one way or another. They have never acted resentful when I've been unable to play with them and instead show concern and care. They don't question or comment when I require frequent restroom breaks or rest periods. This has become normal to them as they have witnessed my health status all their lives.

I've found that allowing a child to witness how chronic illness affects a person greatly shapes how the child will react to chronic illness and its effects. Without exposure and knowledge, an individual is unable to grasp how chronic illness affects one's life. Developing empathy doesn't require medical knowledge of an illness but rather a practical understanding of the effects on everyday life. Throughout my nieces lives they've been aware when I'm ill.

We can share information about our illnesses without delving into too deep of information or scaring a child about our own well-being and safety. It's more important that the child know us and our love than the specifics of a disease, particularly when the child doesn't have the disease. We don't necessarily need to explain our disease to the children in our lives as long as we are real, loving, and ourselves with them. They will come to know us as we are and discover what is truly the most important - our relationship not our health.  

Healthy Habits

I lie on the floor with my arms by my sides, breathing in through my nose and out of my mouth, my mind clear. My breathing focused and my spirit calm. My body is heavy against the floor in this relaxed state known as corpse pose as I complete another day toward a healthy habit.

 It takes about three weeks to turn a behavior into a habit. Sometimes that three weeks is a long time when you're trying to build healthy habits. I'm not the exercise or even constantly healthy eating type. My commitment to such healthiness is sporadic. I abhor exercise and I have strong cravings and lack of self-control for the food I love. I go through cycles of increased healthiness after a bout of gluttony and laziness. I'm starting on an endeavor of health consciousness - involving daily yoga rituals and healthier eating. And I feel great (well, for the most part for me)! Some days I have to force myself to exercise but the longer I do this the less of a thought out plan it becomes and instead progresses toward becoming a habit.  I've learned a few things with my recent dedication that I'm aiming to turn into habit.

Self care involves more than tending to the mind and spirit but also the body.

The ultimate goal is to build a strong mind and body.

By nourishing my body with exercise in the form of yoga and healthy foods I'm helping to nourish my mind. This time is rewarding as I set it aside for 'me time' to focus on myself and let go of the worries of the world. The beauty of yoga and similar exercises is that relaxation and meditation moments are built in as the body connects with the spirit. Each pose focuses my mind and breathing. My attention placed on the within rather than merely the physical strength each pose demands.

My body welcomes fresh foods rather than processed and high fat junk foods. The flavor of a balanced meal becomes rewarding in itself and my body appreciates the healthiness with added benefits of no longer feeling bloated or sluggish. Previously when I followed the Anti-Inflammatory Diet my body quickly detoxified itself, losing weight rapidly, and improving my health within days of cutting out unhealthy foods. The difference in how my body felt before and after was remarkable. Staying hydrated is a challenge for me at times due to how quickly my stomach becomes full resulting in stomach cramps. I have been working hard to drink at least the minimum recommended amount of water everyday and I'm noticing improvements as I'm rewarded with hydration and further detoxification.

It can be difficult to change our habits, whatever they may be. But it can be very rewarding to change old habits and create new ones, particularly when it is for the betterment of ourselves. We deserve self-improvement and the effort that is required for self betterment is always worth it in the end. We just need to remind ourselves to continue to push through. We'll love ourselves for it later.

Travel Stress

I thoroughly enjoy traveling, learning about the local culture and exploring the sights. I long to travel the world, whether it be state, country, or continents and I have my own travel bucket list I'm completing. Yet the tolls of travel are becoming more evident over the years.  Driving 1200 miles over the course of two days was once tiresome but manageable. Now I plead for 3 days travel to reduce travel stress. Traveling 3 hours via vehicle to arrive at a destination for a single night has become an event I dread as I'm left requiring a day of recovery to feel rested again from such a relatively short distance.

My parents and I traveled to visit my great uncles and tend to the beginning of the last days of my eldest great uncle. We decided to fly due to the stress upon us from our 1200 mile drive. Even with less than a 5 hour flight, the day was proving stressful enough. Our plane arrived at nearly midnight, our one checked baggage hadn't made it on our plane but was following behind us on the next flight. A flare up was starting from my lack of sleep and rest and sharp pains began stabbing at the back of my knee each time I took a step. We decided to hold out during the hour wait to obtain our luggage and then was tasked waiting for a rental car and determining if we would be able to check into our hotel a night early while correcting the hotel's error for multiple reservations. After all was said and done we entered our hotel room around 2:30 am to sleep 4 hours before heading to visit my great uncles. Needless to say, we were all exhausted and requiring rest before too long.

What's the best ways to combat travel stress?

Firstly, starting your trip rested and energized makes a difference. Completing necessary planning and preparations for your trip beforehand allows for a more organized, less stressful start to your day. We need this energy and let's face it, most of us are already struggling with energy levels so we don't need to start off further drained than usual.

Know how travel and food will affect you. I know I do better with reduced fluids and food intake during periods that provide limited restroom access. Struggling to avoid restroom necessity when I'm unable to access a restroom is physically and mentally hard on me as my body becomes sore and my anxiety and frustration levels increase. Correctly timing my fluid and food intake provides increased freedom when I need it most.

Schedule your travel to allow for departure and arrival times that are optimal for your well-being. Do you function better early or late in the day? When do you usually start to run out of steam? Allow time for rest breaks to regroup, stretch, and walk to prevent blood clots, achy joints, or lodging for sleep to prevent exhaustion and decreased immunity. Make arrangements ahead of time if you fare better with handicap accessibility or assistive devices. 

Eat healthy during your travel and stay at your destination. It's easier to fall into the fast food traps while traveling but your body and mind will thank you for avoiding such traps. Fast food and other unhealthy foods leave us feeling sluggish. 

Take your medications to help keep you on track. It's easy to skip or forgo medications when our typical routines are altered. Consider adding immunity boosting supplements to your medication regiment after discussing it with your doctor. Zinc and Vitamin C are great immunity boosters. 

Plan activities that fit your activity level. Jam packing your days with various activities can give you great memories but leave you exhausted, wanting a vacation from your travel and time away. Give yourself some relaxation opportunities. 

Travel is a wonderful privilege and we are able to enjoy our travel experiences to the fullest when we take care of ourselves. So get out there and see the world, it'll change you!

Travel changes you. As you move through this life and this world you change things slightly, you leave marks behind, however small. And in return, life and travel leaves marks on you. Most of the time, those marks - on your body or on your heart - are beautiful. - Anthony Bourdain

Against the Odds

When I was unexpectedly rushed to the hospital and admitted for four days, my only concern was my ability to continue with my travel plans with my husband and parents to Alaska on a cruise the following week. An Alaskan cruise is a bucket list vacation for my mother and I, we've been planning and preparing for over a year and there wasn't anything that would make me miss our cruise short of being held hostage.



Seward, Alaska

After a limited appetite leading up to my hospitalization and 2.5 days without solid food while in the hospital, my stomach has not been able to tolerate food properly since resuming a solid food diet. I have been experiencing
severe stomach pain, cramps, and bloating shortly after eating and the pain lasts for the majority of the day and at times into the next day. I attempted to return to work immediately after my hospital release but my body rejected my attempts and forcefully informed me of my inability to resume normal work and activity. I was forced home for the next two days.



Snorkeling in Ketchikan, Alaska

My parents and husband urged me to cancel our travel plans due to the onslaught of pain and how it would affect my travel and activity ability. And I must admit, I was uncertain myself although my stubbornness would not allow me to miss this travel opportunity I had been yearning for over the years. With proper rest and limiting my food intake, particularly during the day, I managed to complete a half work day prior to leaving for our cruise. I wasn't sure how much of the activities I'd be able to participate in nor how much I would enjoy even being in Alaska but I maintained my argument that I would be able to enjoy our time on the ship and venture through the cities and excursions as able. I would watch my food intake, rest when needed, and take Lonox and pain medications to maximize my participation ability. Some days were more difficult than others due to the stomach pain but to my surprise and relief I was able to enjoy the majority of our trip, complete all excursions, and participate in many activities.




Hubbard Glacier. My husband spreading awareness of FAP

We spent an evening in Anchorage before driving to Seward for our cruise departure. Docking in Juneau, Skagway, Icy Strait Point in Hoonah, and Ketchikan we enjoyed whale watching, a train ride through the White Pass Yukon Route, nature walks, local culture education, and snorkeling. Our last day was spent touring Vancouver, British Columbia and to my surprise I managed to walk 5 miles in Vancouver to visit the Hard Rock Casino for souvenirs to add to our Hard Rock clothing collection! We hailed a taxi cab for our return to the train station for time management and relief from shin splints and further risk of dehydration. In spite of daily stomach pain that required rest from activities aboard the cruise ship and mandatory consideration and preparations with food and medication, I thoroughly enjoyed our trip and I didn't want to return home. My soul was touched by the history, culture, and nature of Alaska leaving within me inspiration and peace.



Mendenhall Glacier Juneau, Alaska

Since returning home the pain has yet to subside to my previous normal levels and I am limiting my food intake during the day to allow myself to function with minimal pain at work and during activities. I have an appointment with my new adult GI doctor at the end of the month to review my biopsy reports from my stomach polyps and intestinal ulcers as well as future treatment. I did obtain a copy of the pathology reports stating the stomach polyps were hyperplastic meaning they were benign and not pre-cancerous polyps. My ulcers were typical and without any malignancy meaning I understand that I do not have Crohn's Disease nor did I anticipate I did although I appreciated the doctor covering all bases. During my early college years when I began developing stomach polyps my doctor provided the prognosis of stomach cancer by the time I was 30. I am less than a month away from my 30th birthday and I'm ecstatic to report that my doctor's prognosis was wrong. I may develop stomach cancer later on but not before age 30!


Icy Strait Point, Hoonah, Alaska

Curve Balls

Energy is a funny thing. It changes rapidly, without notice. And yet, even at our lowest we somehow manage to summon enough strength and energy to at least do the bare minimum of what's required of us. And then we collapse.


I've fought with energy on various levels since my colectomy that left me requiring iron and B12 for the remainder of my life. Even with iron medication 3-5 times a day, I have yet to reach a normal hemoglobin level again since that first surgery. With the use of daily microlozenges, I've achieved and maintained above average B12 levels.


And yet, my energy is just as much of a roller coaster struggle as it has been all those years ago. Oddly enough, even in my sickest years 8-12 years ago when all I could manage was to complete my studies and my work hours, there was an abundance of times that I remember as having more energy than I have now. I don't feel old, I'm only 29 and yet when I look back on all the various activities that took up every moment of my days for years, I become exhausted just thinking about it! I can't even force myself to maintain as busy of a schedule as I did 6 years ago!


At my very worst, I went to school and work only and I slept every chance I had. At my best, I worked part time, attended school full time, attended sorority events, college activities, and family gatherings with energy to spare. I went out three nights a week with friends, staying out until 3-4 in the morning and rising again by 7 am to start the day all over again. I don't remember resting any except for during the very worst times. I realize my memories become fuzzy after a while, not just due to age but more so as an effect that is associated with my PTSD and coping mechanisms. My energy must have been at higher levels during those years. Otherwise, how did I participate in the various activities demanded of me?


Presently, I am astounded by myself when I am able to participate in activities of chores, hobbies, or social outings after work anymore. Most nights I come home after work and veg on the couch, recuperating from the events of the day. My sleep cycles further affect my energy levels. Increased energy when I'm able to sleep and lower levels during sleep deprivation periods. I question how I managed such full schedules just a few years ago, I'm amazed at what I was able to accomplish on a daily basis. Even a year ago I engaged in more activity by balancing a full time and part time contract job. Now the thought of even PRN work makes me groan with exhaustion. It takes a while to face the truth sometimes. Things we don't want to admit, things we want to blame on our illness but some things we just can't lay at the feet of FAP.
 Slowly I've come to realize that yes, I did have more energy when I was younger and whilst FAP and my health drain my energy daily, I also have a depleted source of energy due to aging. Oddly, this has been a test of acceptance for me. I didn't want to admit that I'm already experiencing normal aging process. I still look incredibly young for my age and within my mind, I still see myself as 26. I actually forget I'm 29, getting ready to stare at 30 in just half a year. I'm accustomed to bothersome symptoms occurring as a result of the FAP, not a normal process that occurs to healthy individuals too.

Living with a chronic illness complicates any situation and blurs the lines between normal and abnormal. So often it's difficult to distinguish the cause of a symptom as related to our illness or related to normal processes. With these blurred lines, it becomes further difficult to notice "normal" symptoms versus the abnormal symptoms that fill our world that we have become accustomed to as a normal reality. Our minds flood with multiple questions in an attempt to identify the source of symptom changes. Is our health declining, is this a flare up, is this to be expected, is this a sign of something worse, could this be an additional condition? It takes us years to adapt to FAP and the associated issues, years of learning what our new norms are, how and what affects us, what is required to recuperate. In spite of our expertise in how our bodies work, a curve ball always presents itself. We become masters of the curveballs, juggling them with our typical issues; adapting, coping, growing...surviving.


A curveball isn't always big, they come in small sizes as well. Regardless of size, they throw us for a loop when we're least prepared for the change. Grab hold of the curveballs and throw them back at life. Prepare yourself the best you can for the next one that is heading your way.

The Worry Wart and The Carefree

Twice in one day I had two different people tell me that they worry about me and my health. I appreciate the care and concern of others but I don't hear the literal words" I'm worried about you" often. So infrequently so, it actually sounded strange. And in that moment, I asked myself why and do I even worry about my own health.

I suppose I do worry but not in the conventional way. I don't think about my future health very often. The only time I truly feel like I worried about future health was when I had my ostomy and was desperate for a reversal. I thought and worried about my future health and hope for a reversal opportunity everyday during those six years with an ostomy. I think of death often, however, the only concern about death I have is pain and outliving my husband. Otherwise, I feel ready for my time. I don't recall worrying about future health even during my worst struggles to survive. I didn't have the energy or strength to worry. And then it just...became normal.

I find myself worrying most about my activity ability. I worry days, weeks, even months ahead of time about activities I want to participate in but am at risk of not being able to complete due to how my body may be acting at that time. For instance, I've been worried that  my body will interfere with my hunting chances this weekend and my excursions on my cruise in 8 months!

There's always so many variables to consider in relation to food, drink, short bowel, and restroom access. I must be careful of when, what, and how much I eat or drink before, even up to the night before, an activity or I may suffer from short bowel, cramps, and pain.
But even these worries have become second nature as I proceed with strategizing my day around the activity and demands it will place on my body.

I've said before, I could be considered to be in a place of denial, resignation, or acceptance about future health and health risks. I did, however, request to restart the Sulindac in efforts to reduce polyp growth and aid in management of my degenerative disease within my neck joint. Perhaps I'll even undergo another scope or MRI with contrast in the next few years again! I probably should worry more, but at this point in my life...I just don't have it in me.

Worrying is just exhausting though. We can worry ourselves to death with unceasing focus on our risks. It's all a fine line we must try to balance. Between taking care of ourselves and not dwelling on the problems and risks. Yet most of us don't balance, we lean or fall to one side before we pick ourselves back up to try to walk that tightrope once again.

What do you find yourself worrying about? Are you a worry wart or are you carefree with your health and future health?

Accepting Help

Sometimes it's hard to share with others when we're experiencing health issues and when we do, sometimes it's hard to accept help from others. If you're like me, I'm appreciative of the offers to help but I don't think about how others could help me. I'm fiercely independently dependent. I'm reliant upon help from my parents and my spouse yet accepting help from others doesn't come naturally for me and even obvious suggestions don't come to my mind easily. Even now during recent health struggles, friends are offering to help me out. Only, I can't think of what one could do to help me outside of just talking to me. Sometimes you have to hit someone over the head to get them to accept help. Perhaps I would be more open to concrete, specific offers of assistance rather than general offers, haha.

In high school when I had a central line for TPN for six months, I couldn't get my central line wet resulting in the inability to take showers. I had to cover my central line with plastic, I then kept several hand towels over my central line and then kneeled over the tub and washed my hair under the faucet. My parents helped me with this usually, although I could manage by myself. It wasn't until shortly before I had my central line removed that the suggestion of going to a salon and having my hair washed was presented. And with that concrete suggestion, I went with it and it was absolutely heavenly. I was able to relax, have my hair washed thoroughly and without pain of my central line pulling with my arm movements. All for a small fee of $5, it was one of the best $5 I spent. And to think, I could have accepted someone else's help six months before even if it was just occasionally intermingled with my own efforts.

A friend of mine is having back issues and was needing help with transport to a doctor's appointment and childcare during the appointment. Again, it didn't cross my mind that others outside of my parents or spouse could or would be willing to go to appointments with me. I simply scheduled any medical tests with my parents' schedules in mind so that one could go with me. Even as an adult, I still want someone to go with me when I'm undergoing any medical tests or procedures. I just simply don't think someone should have to go alone and frankly, the thought terrifies me. I don't think anyone should have to face medical tests or procedures alone.

Despite how hard it may be for us to accept help from others, especially others outside of our health circles, it can be a wonderful thing. Typically, if someone is offering to help you out it's a genuine act of care and they're concerned about you. And let's face it, sometimes we really do need some help...even if it's just a shoulder to cry on.

Healthy Digestion

I've been eating very healthy for the last two weeks and what a difference I've unexpectedly noticed in my digestion, not to mention my waistline. I've been avoiding and at minimum reducing intake of starches, sugars, fats and focusing my meals on meat, veggies and fruits.  Boy what a difference that makes!

I'm not feeling bloated, abdominal pains or what's considered to be "constipation" for me. I'm still able to control my SBS with just one Lonox and engage in my activities. I'm feeling fuller with less food but without the pain and blah feeling of overeating and unhealthy eating. I'm feeling so much better than when I was giving in to all those unhealthy cravings. I wake up and feel like playing in the hills, not sitting on the couch holding my stomach because it's uncomfortable or painful to move.

Everyone should talk to their doctor before making diet changes, especially as some of us with GI issues have a difficult time digesting fiberous foods, specifically vegetables. I've been fortunate that vegetables have never been a problem food for me, even when I had an ileostomy. My mother though is plagued with intestinal blockages regularly, even when carefully selecting and chewing her food choices. Even too dry meat causes a problem for her.

Bottom line, it's important to consider our food choices to make better ones for ourselves. Yours may be different than mine, our bodies are similar yet different with FAP. But if you're having some negative symptoms, try some changes out with your doctor and see what happens. I've been too stubborn to make changes before with food and medications but those changes have always proved to be the better choice for me. I hope yours do too.