Desmoid Tumors and Esten's Story

Desmoid Tumors, or aggressive fibromatosis, are another rare disease that is common among those with Familial Adenomatous Polyposis (FAP). According to NORD, up to 32% of those with FAP will develop a desmoid tumor due to a mutation on the APC gene, where the FAP mutation is also found. Mutations may also be found on the beta catenin gene that may also cause desmoids to develop.

Desmoids have similarities to cancerous tumors called fibrosarcoma but are benign as they do not spread to other body parts. Desmoids develop in the connective tissues of the body anywhere in the body. Superficial desmoids are typically less aggressive than deep desmoids in the abdominal, extra abdominal or mesenteric areas. Deep desmoids look like dense scar tissue and are difficult to remove as they adhere to surrounding structures and organs. Although desmoids are benign, they can be life threatening due to compression on organs such as intestines, kidneys, lungs, blood vessels and nerves. Repeated irritation or trauma to a certain body area may increase the risk of a desmoid developing. Desmoids may grow slowly or rapidly and at times may even shrink without any treatment. Depending on the size and location, desmoids may have no symptoms or may cause:

• painless swelling or lump
• pain or soreness caused by compressed nerves or muscles
• pain and bowel obstructions
• limping or difficulty using extremities

Diagnosis of a desmoid can only be conclusively made through biopsy but evaluation of the tumor can be completed through ultrasound, CT Scan, and MRI. Desmoids are often closely monitored as a first treatment option due to the varied and unpredictable nature of desmoid growth. Surgery to remove a desmoid is not always the best treatment option as there is a high recurrence rate and there may be a more aggressive recurrence after surgery. Chemotherapy and radiation may be sought but also pose health risks to morbidity and mortality. Anti-inflammatory drugs may cause desmoids to shrink and anti-hormonal medications may help reduce growth in addition to novel molecular-target therapies such as receptor kinase inhibitors. Clinical trials continue to be conducted for new desmoid treatment options.

It is recommended to be evaluated by a doctor and hospital that has expertise in sarcoma. Preferably, the medical team for someone with a desmoid would include medical oncologists, surgical oncologists, radiation oncologists, geneticists and nurses. The Desmoid Tumor Research Foundation has resources and clinical trials for those with desmoids and also may help finding a doctor with expertise in sarcomas in the United States and the Desmoid Foundation of Canada is available for those residing in Canada.

A Desmoid removed from a FAP patient and friend of Jenny's
Measuring 1.234 kg & 25 cm

 Another friend of Jenny's with FAP and Desmoids shared insights she's learned over time stating in her opinion, the most important things to remember for Desmoid care is:

• If possible, don't let anyone excise a lump without knowing what it is first
• Don't let anyone surgically remove a Desmoid unless surgery is life preserving
• See a Sarcoma Oncologist with Desmoid Expertise, preferably a Medical Sarcoma Oncologist versus a Surgical Sarcoma Specialist
• Understand that Desmoids are different for individuals with FAP
• If you have FAP and Desmoids, only have biopsies done of potential Desmoids when necessary and only have surgery, when necessary, as both risk Desmoid creation and/or growth

This is a Guest Post by Esten Gose with Familial Adenomatous Polyposis and a Desmoid Tumor

I was diagnosed with Familial Adenomatous Polyposis/Gardener's Syndrome (FAP) at age 10.  I am the first person in my family to have FAP due to a spontaneous genetic mutation. Around that time, I had a tumor removed from my right jaw. 

Ever since my diagnosis, I have had yearly or bi yearly colonoscopies and endoscopies to keep an eye on my colon and the surrounding area.  In 2004, after my annual scope, my gastroenterologist told my family and I that it was time to remove my colon. We were told that I would likely die if we didn’t.


My parents and I traveled to the Cleveland Clinic in Ohio to have the procedure done there, as at that time, The Cleveland Clinic was a top hospital for treatment of FAP patients. We also chose to have it done there because they were one of the first facilities to perform laparoscopic surgery, and it was done as a “pull through” where the colon is removed and the small intestine Is attached to the rectum.  Having it done that way, we were able to shorten the recovery time from about a week, to about 3 days.

A few days after we returned home to Seattle, I missed a dose of the pain meds I was given to help with my recovery after they surgery. Missing that dose ended up saving my life, as I began having massive abdominal pain, and was take to urgent care. After various tests, I was rushed to the ER via ambulance for emergency surgery. A small hole had developed where the small intestine was fused to my rectum, and I had a massive infection in my abdomen.

That surgery saved my life, and my doctors and nurses told me that when I arrived in the ER, I was in sepsis and no more than an hour from dying. The emergency surgery that was performed gave me a temporary ostomy, with the goal of giving it 6 months to heal and performing a reversal.


During my reversal surgery 6 months later, my surgeon stopped the procedure mid-way through. There was so much scar tissue, that they had to come up with another plan. They decided to give me a permanent ileostomy, which I have now had for almost 16 years.


Recently about 8 years ago, I traveled to the Cleveland Clinic to have a larger desmoid tumor removed from the right side of my abdominal wall just below my rib cage.  My colorectal surgeon was able to safely remove it, and it was sent to the lab to be studied.  This surgery was relatively routine, and I did not have any complications.  I was hospitalized just short of a week and traveled home with no issues other than post-op pain management. This tumor was removed at a good time, as my doctors told me it was pressing on my rib cage, and nearly broke my ribs.


Fast forward to 3 years ago.  I noticed a bump in my abdominal wall and made an appointment to see my doctors at the Seattle Cancer Care Alliance.  Various tests were done, and it was determined the bump I noticed was a Desmoid Tumor.

This type of tumor is usually non-cancerous but can still grow and cause problems.  My oncologist suggested that we treat it with proton radiation therapy, as surgery would be potentially dangerous.  Radiation therapy can more specifically target the tumor, so less surrounding area near the tumor is affected.

Luckily for me, the Seattle Cancer Care Alliance here in my hometown has a Proton Therapy Center just north of Downtown Seattle.  We scheduled an initial appointment there to go over the plan.  The staff there did an initial CT scan to map out the area to be treated, and make sure the exact site was marked.  They put a few ink tattoo dots in specific coordinates so that when I begin my treatment, the staff will know exactly where to position the equipment.


We then scheduled the treatments themselves.  They would be done once daily Monday through Friday for a total of six weeks.  When the day came for my first treatment, I honestly was not nervous at all. The staff there are wonderful and help make you feel very comfortable.

When I arrived at the center for each day’s treatment, I checked in with the staff at the front desk. You are given a bathrobe to use for each treatment visit, so when they take me back, I would change into a hospital gown.  Once the treatment room is ready for you, they bring you from the waiting area. I would lay down on the table. The room has lasers that help the staff position the table in the right coordinates.

Once they are ready, the staff would leave the room to their control room, and shortly after, the gantry above me would begin to move into position, and the treatment would begin.  The treatment itself was 100% painless and would only take 20 minutes or less each day.


My nurses did advise me that beginning about a week into my treatments, the proton radiation would cause my skin to change slightly at the treatment site. It caused my skin to develop wet blisters, which were initially tricky to deal with. Since it was just above my ostomy site, I had to learn to cut my wafer a bit differently so that the skin with the wet blisters from my treatment were able to heal properly.

 Fast forward to six weeks later, and my treatment was competed.  They give you a certificate of completion, and a “Challenge coin” to commemorate your graduation from treatment.  I met with my oncologist after the end of my treatment, and we learned that I would need to schedule an MRI every six months for the next 5 years to check on the tumor that was treated.

As of today, it has been just over 3 years since I finished my treatments, and my oncologist says that the tumor they treated has stopped growing, and even shrunk a bit. I have 2 years left of MRI’s, and then I will just have annual visits instead.

I am extremely grateful to my medical team of doctors and nurses both here in Seattle, and in Cleveland. They have both been incredible participants in my ongoing medical care.

Esten

Esten Gose is a 37-year-old with Familial Adenomatous Polyposis (FAP), born in Seattle, WA and currently living in Snoqualmie, WA with his wife and 2 cats.  He has been married to his wife Jennifer for almost 5 years. He has had his ileostomy for almost 16 years. Esten enjoys sports, traveling with his wife, and spending time with family.

For more detailed information on Proton Radiation Therapy visit:

https://www.sccaprotontherapy.com/proton-therapy. 

This article was updated 3/31/2024 to share the photo and insights from individuals with FAP and Desmoids

Physical Therapy After Abdominal Surgery

I had my first abdominal surgeries were in grade school from 1995-1996 and endured severe back pain particularly during this time. By the time I was in high school, I started noticing increased back issues as I was unable to sit up from a forward bend position. My doctor referred me to physical therapy where I learned my back issues stemmed from weak abdominal muscles from my abdominal surgeries. After completion of a physical therapy program, my back issues significantly improved. That's why I thought it would be beneficial to learn about physical therapy after abdominal surgeries and so I requested this blog post from a local physical therapist.

This is a guest post by Christine Poteet, a Physical Therapist

 A guiding principle of physical therapy is “proximal stability before distal mobility.” In physical therapy school, my sports professor said this phrase more times than I care to remember, but it got the point across! Basically, it means that if your core (proximal) is not strong enough to handle what you’re doing with the rest of your body (distal), that function or performance will likely be less than optimal and may lead to a breakdown, injury, or pain at or beyond the area of weakness. I liken this to the biblical story of building your house on a rock versus sand. If you don’t build your house on a solid foundation, then, as the story goes, “the rain falls, the floods come, and the winds blow and beat against your house, and it will fall.” Similarly, if your body’s foundation (your core) isn’t strong, it won’t be able to stand up to everything that life throws at you. This may manifest as increased local pain (such as back pain) or pain in other places along with, or due to, the breakdown of muscles, joints, tendons, or ligaments. When your core isn’t doing its job, those other parts are taking on additional stress, and while our bodies are pretty resilient, those other parts can only take that increase in usage for a limited time. Depending on the part, a breakdown could result in a cascade of additional faulty movement patterns and injuries. 

The core is made up of several muscle groups including the abdominals (most famous), gluteals (booty!), pelvic girdle (lots of small hip and pelvic floor muscles), paraspinal muscles (back muscles along the spine), and a few more. These muscles form the walls of a box that surround our internal organs, with the abdominals in the front and sides, paraspinal and glute muscles in the back, diaphragm on top, and the pelvic floor and hip muscles creating the bottom of the box. These muscles stabilize the spine and pelvis, reduce compression forces at the spine, and allow for appropriate force distribution and generation so the body can move with the most optimal efficiency and strength to get the job done with as little stress, compression, shear, etc. as possible (Akuthota, 2008). In other words, these muscles give lift and decompression to the spine, reducing the stress of gravity and the incumbent weight of the body pressing on the vertebrae and intervertebral discs which can cause nerve compression, pain, and dysfunction.

Our core and postural muscles are “on” whenever we are in any position other than lying down, which is typically 16-18 hours per day. Certain core muscles have been found to fire before limb movements in order to stabilize the spine, which is further evidence of the “proximal stability before distal mobility” principal. However, these muscle reactions can be delayed in folks with certain maladies, such as low back pain. So you can see how important they are for everything we do.

Personally, I didn’t have the opportunity to see many folks following abdominal surgery in my outpatient orthopedic practice, but I did see many with low back pain and post back or hip surgeries. Most tend to have an excellent recovery whenever they are consistent with their exercise program. Since my transition to the home health setting, I’ve seen several people, mainly women, who did not have physical therapy immediately following surgery and now have other complications, injuries, or difficulties.  Many of them have required a walker as they were unable to fully stand due to a combination of back pain and core weakness. Keep in mind that my average patient is now about 70 years old. I always include a balance component with my treatments, so I have patients practice proprioceptive exercises at their kitchen counter by standing without holding on. Many of them slowly droop down toward the countertop because their core musculature is so weak that it can’t hold their torso erect for more than a few seconds. After several visits of supine core and lower extremity exercises, not only were these patients able to stand upright for the full 30-second goal, they were also able to maintain a more erect posture with static standing and walking. They also reported feeling stronger and more stable, which translated to observable functional improvements in their everyday lives. 

Physical therapy seeks to reduce post-op complications, including pneumonia, deep vein thrombosis (blood clots), and to improve range of motion, strength, endurance, stability, and restore normal movement patterns. Surgery can disturb the skin, underlying tissues, and nerves, which can result in a lack of coordinated muscle activation. So ,even if the muscles are strong, the nerves aren’t able to communicate with the muscles appropriately, resulting in an inability to contract those muscles in a full and coordinated manner. This is referred to as neuromuscular dysfunction. I tell my patients that the nerve is hacked off about the surgery because it was cut on, moved, or otherwise interrupted. And though the surgery was “for a good cause,” the nerve doesn’t know that and needs time to simmer down.

Physical therapy following abdominal surgery can help restore that nerve-muscle communication, allowing for a more coordinated and efficient muscle contraction. This can manifest as stronger muscle contractions due to increased muscle fiber recruitment and more support of the spine, more efficient movements with fewer substitutions. Meaning you’re using the right muscle for the job, and depending less on random other parts to do the work, which can initiate the cascade of breakdown at or beyond that weak link. Physical therapy can also play an important role in the restoration of overall physical function including muscular strength, cardiovascular endurance, and balance and proprioception. All of these aspects of function are essential to optimal performance of daily life tasks, especially if you have any kind of strenuous demands on your life (i.e. children, sports, job activities, sex, etc.).

Thankfully, many abdominal surgeries are now performed laparoscopically, reducing the invasiveness of the procedures. Minimally invasive procedures have been shown to decrease recovery time, complication rates, and length of hospital stay. (Reeve, 2016) This translates to less disruption of muscle, nerve, connective, and other body tissues improving post-surgical rehabilitation.

EXERCISES

This is by no means meant to replace the professional opinions of your personal physician or physical therapist who can actually lay eyes on and evaluate you, and recommend an individualized program based on what you actually need. But here are some of my favorite basic core exercises to prescribe (and that I do in my own workouts):

The Abdominal Draw In (DI) is one of my favorites because it recruits the deepest of your core muscles - the Transversus Abdominis. This muscle has horizontal fibers that, when activated, function like a girdle around your abdomen giving your spine support and decompression. The DI also simultaneously recruits your pelvic floor muscles which, if you remember from previously in the article, are the bottom of the “box,” and strengthening them can help if you have any sort of urinary incontinence problems (though that’s a whole other topic that I could spend some significant time on). For this exercise, I usually instruct my patient to lay down on their back with knees bent, feet flat on the bed, and tell them, “bring your belly button down toward your spine, like you’re trying to fit into a tight pair of jeans.” Another way of thinking of it is “hollowing out” your belly. Make sure you keep breathing during the exercise - don’t hold your breath. Also, make sure to keep your head relaxed on the pillow or the floor if you aren’t using one - don’t try to lift your head up toward the ceiling. (Pro tip: you might get a cramp in your hamstrings - that’s pretty normal in my experience - just stretch it out and you should be alright.) Depending on the person’s strength, I’ll have them hold the contraction for anywhere between 3 and 10 seconds, and have them do about 10 repetitions. I love this exercise because there are so many variations and progressions that you can add in once they have the basic part down. For example:

 Posterior Pelvic Tilt: This one is much more difficult in concept but easy to execute once you understand. I’m including several links on this one so that you can see it in various ways. Just remember that it’s all about the TILT so that your back presses into the bed or the floor (I recommend doing this on the floor because a bed is very soft and the floor gives you a bit more feedback, so that when you feel your back pressing into the floor, you know you’re doing it right).  

Glute Squeezer:  It’s like you’re trying to pinch a penny between your cheeks. 

 Adductor Squeeze with a ball or pillow between the knees

 Dead Bug: This one is more difficult than it looks and is a progression in itself. I always have a patient start by adding just the arms to the DI and do several reps. Then, when they become proficient with that, I’ll have them switch to just the legs. Then, when they get that down, I’ll have them add arms and legs together - opposite arm moving toward opposite leg. If I see that they can’t keep the back in contact with the floor at any time, the exercise is stopped because the core muscles either aren’t functioning properly or are fatigued. 

 Hip External Rotation:  I generally have the person lay with legs bent, feet flat. While keeping one knee stable, the other knee drops out to the side. Then I progress to bands when they are show good stability and strength with this exercise. The photo shows moving both knees at the same time but I always have them move just one at a time until they show they can control it. 

Bridges are a great exercise for basically all the large muscle groups from core to lower legs. For this exercise, lay on your back in the same position as the DI. Squeeze your belly and glutes and raise that booty up off the ground. Try to make a straight line between your shoulders and your knees. Progressions included in the notes at the end. Start with 5-10 reps and progress to a few sets of 10-15 with breaks in between.

Bridges: 
Progressions:

-       Single leg: (Keep your knees together) 

-       Glute bridge

-       Bridge walkout: Essentially you want to maintain a bridge while walking your feet slowly away from your bottom and then walk them back toward your bottom. 

So many of us have no idea (and neither did I until I became a Physical Therapist) just how much weak glutes affect our everyday lives, especially as we age! Your glutes are not only part of your core, they help stabilize your back and pelvis, especially during strenuous activities such as lifting, squatting, running, or even walking. They’re important in general propulsion during walking and running, and keep hips stabilized during single leg stance (which we do with every step we take as we are at least momentarily standing on one leg). They help the knee track appropriately and when strong, reduce the risk of knee and back injury associated with lifting, running, etc. That’s why maintaining those strong booty muscles is so important. My basic, go-to exercise is the Clam (or clamshell - the internet seems to like this term better for some reason). Lying on your side, bring your knees and feet together and bend at the hip and the knee such that your knees are slightly in front of the rest of your body. Torso should be on the floor and you can rest your head on your hand, a pillow, or your outstretched arm. Raise the top knee up and out (like a clamshell opening). Keep your feet together and don’t allow your top hip to rotate backwards - it’ll have a tendency to do this so you have to fight against it. Put a hand on your top hip so you can feel if it’s moving posteriorly. Again, start with 5-10 reps and progress to sets of 10 with breaks in between. 

 Clams: 

This is a great little video explaining the importance of the glutes, especially for women, and demonstration of the clam exercise. (Even though he was doing a mild backwards rotation of the top hip) Video
Progressions:

-       With resistance band

-       With ball between feet. And a resistance band if you want. I couldn’t find a picture of this but you can just use a medicine ball or a kid’s toy ball (~8-10 inches in diameter) between your ankles.

Another fantastic glute exercise is hip abduction. Abduction just means any motion that moves a body part away from your midline in the frontal plane. Lying on your side again, legs out straight this time, and hips stacked one on the other with a hand on the top hip to keep yourself from dropping that top hip backwards, raise the top leg out to the side. Make sure to keep your knee and toes point straight toward the wall in front of you, not toward the ceiling. This is how you know you’re activating the correct muscle, otherwise you will get another muscle trying to take over (called substitution). Same starting reps as the previous ones, progressing to 2-3 sets of 10-15 and then adding a weight or band.

Hip Abduction:  Her toes are turned downward in this photo, which is fine, but will be more difficult. You don’t have to do this, just make sure your toes are pointed straight forward.
This video shows this and a couple other exercises.  Video
Progression:

-       With band

-       With ankle weight

Christine Poteet is a Home Health Physical Therapist working in the Oklahoma City Metro area. She graduated from the University of Oklahoma with a Doctor of Physical Therapy and has been a practicing physical therapist for 5 years. She has worked in home health for 2 years but began her career practicing and studying orthopedics in the outpatient setting where she became an Orthopedic Certified Specialist. She truly enjoys helping people reach and restore their physical and health potential. She also has 2 giant fur children who pretty much run (circles around) her life. When she is not physical theraping or dog wrangling, she enjoys road cycling, hiking, and various other outdoor activities with friends and family.

 References

 

1. Akuthota V,  Ferreiro A, Moore T, Fredericson M (2008). Core Stability Exercise Principles. Spine Conditions: Section Articles. Current Sports Medicine Reports (7) 1, 39-44. doi: 10.1097/01.CSMR.0000308663.13278.69

2. Reeve J, Boden I (2016). The Physiotherapy Management of Patients undergoing Abdominal Surgery. New Zealand Journal of Physiotherapy 44(1): 33-49. doi: 10.15619/NZJP/44.1.05

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.

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

CareClinic.io 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.

Features

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 https://CareClinic.io to download the App for Android or iOS.

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.