Friday, May 15, 2020

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 14th 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 23rd 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.

Friday, May 1, 2020

CareClinic App

The CareClinic App Team contacted me about sharing information about their app to help manage general health and medical conditions. I will let their guest post delve deeper into the app but I wanted to share my thoughts on the app first.

Disclaimer: There are several apps available to manage health and medical conditions, I do not use any of them so I do not have a personal opinion on CareClinic versus another app. This blog post is simply to provide information on an available tool for health management.

I didn't realize at the time that this app is not only for those with health conditions but also for anyone in general even if there is no history of health issues. This is a nice feature for organizing one's health goals and plans to reach identified health goals in addition to medical conditions.

I like that there is the option for desktop login as well as via smart phone. I signed up for the free membership and to my surprise both of my rare diseases - Familial Adenomatous Polyposis and Short Bowel Syndrome - were in the drop down menu for possible health conditions to select. That alone was impressive.

There is a tutorial for creating your self-care plan as well as templates one can use. Care plans can be created for a multitude of purposes including physical and mental health. Care plans allow you to add your medications, planned therapies, activities, and nutritional intake on a calendar with reminders.

Reports can be viewed showing tracked adherence, symptoms, calories, activities, weight, therapies, sleep and custom values with any correlations found in the data tracked.
Below is a full list of the features in CareClinic with descriptions.

CareClinic Features

This is a guest post by the CareClinic App Team

It is often evident that during times of the constant fast-paced lifestyle, we’re glued to our smartphones without the awareness or presence of mind for our own wellbeing. Often forgetting that there are options for the betterment of our own health. Given the current climate we’re living in right now, it is only more prevalent that a smartphone can be beneficial in providing access to platforms for improving lifestyle and wellbeing. One such app that enables this is CareClinic.

All Inclusive Solution is an all in one care management platform, that provides more than just the features of a standard health tracker. Here is a platform that empowers users in managing their acute, chronic and preventive medical care in one fully integrated online-to-offline system; such that for the user benefits of tracking, measuring and behavioral insights.

 The platform is offered on desktop, tablet and mobile for iOS and Android; with a free membership option and a premium membership option for additional added features and insights. Upon signing up to the platform users are assigned a user ID (for data privacy protection) with full level of encryption and allowing users ample options to save their health information in a structured way, so the information may be used to generate personal qualitative insights for their convenience.


CareClinic’s features allow users the opportunity of utilizing the health journal app functionality to share notes or write down day-to-day health or chronic conditions in one place at any time. With the capabilities of tracking prescription medications, over the counter medications, pills, supplements, symptoms and mood tracking along with day to day lifestyle habits, physical activities, nutrition, therapies, vitals and custom values as a personal log and journal as their personal care plans.

The platform provides users with a way to automatically integrate health data to not have to enter activity details manually each time. From the internal database, users can search and assess the medical library (clinically sourced and referenced) and update their care plan at their convenience.

Users may add contacts to their care team to monitor their progress. This feature enables them to get reminders of any missed dosage to follow up or keep track of their wellbeing. This functionality is great for seniors or geriatrics, or those who may rely on care providers (be it a guardian, family member or personal care support); as for doctors, nurses, and even family. Not only does the platform benefit users, but it assists clinical and healthcare providers, providing them oversight of a user’s care plan and journals for better oversight.

The platform helps users track health measurements that are vital to themselves, their family or their care provider with ease. The benefit of generating reports, provides context on progress to help optimize lifestyle goals. The user information can be assessed and analyzed to provide availability of charts, logs, and correlations all of which can be useful in better understanding with deeper insights. To learn more about CareClinic and how it can help you or a loved one, please visit to download the App for Android or iOS.

Tuesday, April 14, 2020

Managing Diarrhea Through Diet

Diarrhea is a common complaint of those with GI issues and diet can play a role in worsening or lessening this symptom. Registered Dietitians (RD) offer a valuable service to anyone wanting to improve their health or manage a disease through diet. I've worked with several RDs during the course of my career in the medical field and also privately sought weekly appointments with a RD to teach me and my now ex-husband about the diabetic diet to help my husband at the time manage his Diabetes appropriately.

I visited with one of the RDs I work with about tips to help lessen diarrhea and upset stomach for those with GI issues. She advised the following:
  • Avoid or Limit: Fatty, Fried, and Spicy Foods
    • High fat foods slow stomach emptying and cause the digestive system to work overtime which can cause nausea, bloating and stomach pain and harm healthy gut bacteria and increase unhealthy gut bacteria. Fatty foods are broken down to fatty acids causing the intestine to release fluid, resulting in diarrhea. 
    •  Greasy foods are high in fat and not healthy fats that are found in foods such as avocados, fish, extra virgin olive oil and butter
    • If you're eating a lot of protein, switch to lean meat choices rather than those with higher fat content and cook your meat by baking, broiling, or steaming rather than higher-fat methods such as frying
    • Spicy foods contain capsaicin, an irritant to the body, which irritates the lining of the stomach and intestines thereby creating a laxative effect in order to quickly remove the capsaicin irritant
      • Eating spicy food with some dairy can help reduce or neutralize the effect of capsaicin on the digestive system
  • Be mindful of your fiber intake and sources:
    • Soluble Fiber helps to bulk the stool by absorbing water and slow digestion
      • Soluble fiber sources include white breads, rice, potatoes, dried beans, oats, oat bran, barley, citrus fruits, apples, strawberries and peas
    • Insoluble Fiber adds bulk to the stool and helps food pass through more quickly through the GI tract
      • Insoluble fiber sources include wheat bran, whole grains, cereals, seeds, and the skins of many fruits and vegetables
  • Small frequent meals throughout the day are easier to digest than 2-3 large meals
  • Limit sugar intake, especially artificial sweeteners
    • Sugar stimulates the release of water and electrolytes in the gut resulting in diarrhea
    • FODMAPs include fructose, artificial sweeteners, and lactose that are a poorly digested sugars
  • Limit caffeine as it stimulates the intestines resulting in increased bowel movements or diarrhea
    • Caffeine is found in coffee, tea, chocolate, most sodas as well as coffee and chocolate flavorings
Gluten can cause diarrhea, and other bothersome symptoms, for someone who is gluten-sensitive as gluten causes inflammation in the small intestine for these individuals.

 Additional diet information regarding managing diarrhea may be found at International Foundation for Gastrointestinal Disorders.

I heard through Familial Adenomatous Polyposis groups several individuals reporting improved GI symptoms by following the Anti-Inflammatory Diet as well. The idea is to avoid foods that may trigger or worsen inflammation in the body as some foods or ingredients have this effect on the body. In 2014, I participated in a health study and followed this diet with noticeable improvement to my GI symptoms. You can read about my experience with the diet here.

Every person is different and while some foods may be more upsetting than others to one person versus another, these are some general recommendations that may be helpful. Always consult your physician and consider enlisting the help of a Registered Dietitian in your area for personalized care and recommendations.

Thursday, March 19, 2020

The Whipple Procedure

If you're within the Familial Adenomatous Polyposis (FAP) community, you likely know at least one person who also had the Whipple Procedure. Due to the high precancerous polyp growth associated with FAP, it is common for FAP patients to also develop polyps in their stomach including the duodenum, the area that leads from the stomach to the small intestine. Often these polyps become too large and will block this opening or turn cancerous. Often the polyp(s) can be removed during an EGD procedure but sometimes require surgical removal resulting in the Whipple Procedure. Another common procedure due to a polyp blocking the bile duct is the ERCP (endoscopic retrograde cholangiopancreatography) that results in a stent placement to keep the bile duct open after polyp removal.

The Whipple Procedure is also called a Pancreaticoduodenectomy. This surgery removes the head of the pancreas, the gallbladder, duodenum, and a portion of the bile duct and stomach. In some cases, the stomach is not removed and this modified version of the Whipple is called a pylorus-preserving Whipple. The remainder of the pancreas, stomach and small intestine are then reconnected. The surgery in both instances typically requires 5-7 hours to perform.

Due to the complexity of this surgery it can take months to a year for someone to fully recover and feel like themselves again. With the removal of part of the pancreas, diet changes may be required to help reduce symptoms of diarrhea, gas, and stomach pain and may require medication to help with digestion and reduce acid.

Diet changes may need to include:
  • Avoid or limit fried, greasy or high fat foods
  • Consume fat from healthy sources such as olive oil, canola oil, peanut oil, nuts, seeds and avocados
  • Consume 2.5 cups of fruits and vegetables per day
  • Eat small meals and snacks to prevent feeling overly full and for easier digestion
  • Drink at least 6-12 cups of fluids daily to reduce fatigue, light-headedness and nausea
  • Limit fluid intake during meals to prevent feeling overly full or nauseated
  • Avoid alcohol
  • If nauseated on an empty stomach, small bites of dry food are typically tolerated better than liquids
  • Avoid concentrated refined/simple carbohydrates to prevent glucose intolerance or dumping syndrome symptoms
    • Glucose intolerance symptoms include increased thirst, frequent urination, blurry vision and fatigue
    • Dumping syndrome symptoms occur within 2 hours of ingestion and include flushed skin, light-headedness, weakness, abdominal pain, nausea, vomiting and diarrhea
Vitamins and supplements may be required due to malabsorption following the Whipple procedure. These may include:
  • Calcium
  • Iron
  • B12
  • Vitamins A, D, E, and K
Risks of the Whipple Procedure include:
  • Bleeding
  • Infection
  • Delayed emptying of the stomach after ingestion
  • Leakage from the pancreas and bile duct connection
  • Difficulty with digestion
  • Weight loss
  • Diabetes
It is recommended to choose a surgeon well-versed in performing the Whipple and a hospital where 15-20 Whipple procedures are performed annually for the best results.

My mother required the Whipple Procedure 13 years following the removal of her colon with a permanent ileostomy due to colorectal cancer as a result of FAP. She had a polyp obstructing the opening of the common bile duct that caused a backup of bile and frequent pancreatitis. My mother had a difficult recovery and due to her high level of pain from the surgery became addicted to pain medication for a brief period. The pain medication addiction only worsened her recovery as she was unable to obtain the rest she needed. Soon after her Whipple, she was diagnosed with Type II Diabetes due to the removal of part of the pancreas and she now requires insulin. Years after her Whipple, she began requiring Vitamin D and K on a regular basis. In early 2020, she required an ERCP stent placement due to recurring polyps and scar tissue at the reconstructed bile duct.

The Whipple Procedure is a demanding, risky surgery that no one wants to require but it can be life saving. However, with routine monitoring of polyp development one has increased prospects for the best treatment and health outcomes possible.

Tuesday, March 10, 2020

Finding or Establishing Support Groups

It can feel lonely when you're diagnosed with a rare disease, such as Familial Adenomatous Polyposis (FAP) or Short Bowel Syndrome (SBS). After all, these are rare diseases and so there isn't near the support or media coverage available as there is for well known, more common illnesses. Finding support can be increasingly difficult depending on where you live as well. It's more likely to find support if one lives near a large research hospital such as Michigan Medicine University of Michigan, Cleveland Hospital or Mayo Clinic. Finding support is easier now than it was 20+ years ago when I was diagnosed with FAP and SBS though with technology and social media.

I remember how important my local UOAA ostomy support group was for me after my first surgery that removed my colon and left me with an ileostomy for 6 years before having a straight pull thru. There wasn't usually anyone my age at the meetings but I was able to meet others outside of my family who also had ostomies. Their reasons for their ostomies were not the same as my reason or diagnosis but it was helpful to know I wasn't alone. My pediatric GI also told me about the Youth Rally for kids and teens with ostomies or other diversions for their bladder and bowel and I attended as a camper for four years until I graduated high school and I even went back as a counselor for two years. Between the support of my family, the ostomy support group, my friends and counselors at Youth Rally, and a therapist I was able to learn how to adjust and cope to life with rare disease and an ostomy. My local UOAA support groups even helped sponsor my trips to the Youth Rally and when I returned I was allowed to share my experience and pictures with the support group.

One can find online support for the rare diseases of FAP and SBS by doing a simple search on the web or on Facebook. There are several groups for both diseases including for colon cancer, ostomies, and reversals. A well established online group is Colontown with various neighborhoods to help meet the vast array of needs and conditions that are associated with colon cancer. However, what if you want a face to face group and there isn't one in your area?

Kevin helped establish a Peer Discussion Group for Hereditary Colorectal Cancer in Ann Arbor, Michigan and was kind enough to share his tips for establishing your own group. Kevin recommends:
  • Locating and talking to a genetic counselor about your interest in establishing a group
  • Identify local medical facilities or hospitals that treat Hereditary Colorectal Syndromes such as FAP and Lynch Syndrome. The above HCCF Provider Directory may be of assistance with this as well
  • Talk with a local genetic counselor about identifying doctors who treat Hereditary Colorectal Syndromes to discuss with your interest of establishing a group
  • Identify a meeting venue such as:
  • Speak with the program director at the potential meeting venue about establishing a group at their facility
  • Identify a possible facilitator for the group. Some venues may have requirements for the facilitator such as someone with a social work degree or special training
  • Create a website or social media group for your group. An online Facebook group should be monitored regularly for appropriate contact and is suggested to be a closed group for privacy
  • Once a venue has been secured, communicate the group's details to Hereditary Colorectal doctors, genetic counselors, local papers and radio stations, social media sites, etc
  • Quarterly presentations of topics of interest are recommended such as topic experts including:
    • Genetic Counselors
    • Hereditary Colorectal Doctors
    • Dietitians
Keep in mind that it may also be helpful to get in touch with others who have established groups for any medical condition for guidance in the process, not only those who have established the same type of group you are wanting to establish. Having a partner to help in the creation of a group can be helpful as it is a lot for one person to take on in establishing and maintaining a group. Rural areas are less likely to have genetic counselors but perhaps there is one within reasonable distance or other individuals in the surrounding areas that may be interested in helping to establish a group.

Kevin has generously offered his guidance in establishing your own support group if you would like to contact him via email or phone: 734-476-7425

If you establish your own support group, share it with Life's a Polyp to help promote your new support group!