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.

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.

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
• Start by searching for genetic counselors through this directory:
• NSGC Genetic Counselor Directory 
• 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:
• Hospitals/Health Centers
• Community Centers
• Cancer Support Community
• 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!

Recovery, Not Rest

I came across an article about how resilience is not about pushing through or just taking a break to rest but rather about recovery. Since then, this difference between recovery and rest has been on my mind as I try to engage in recovery for myself rather than just resting. But what is the difference and why is it important?

I discovered for myself how recovery plays a vital role in our well-being this weekend. I already knew that I require a lot of sleep and when my sleep is limited, I am at greater risk of a Short Bowel Syndrome flare. These flares can last anywhere from half a day to couple of days and medicine such as Lomotil to slow the bowel isn't really all that effective during a flare. In fact, nothing but time seems to help me when I'm having a flare. Sure, sitting up instead of lying down makes a difference but food, drink, and medicine don't play a positive role but rather can make the symptoms worse.

This weekend I spent both evenings awake and active until about 2-3 am. I slept in the best that I could the following day but most days I'm not able to sleep in later than 9 am at the latest. And if I take a nap during the day then I run the risk of not sleeping well that night. And so I overdid it both days and I felt it by Sunday afternoon. My body started to revolt. I wasn't flaring at this point but I was exhausted and in general just felt under the weather. I didn't do anything Sunday but my body paid no heed to my inactivity. The damage had been done and I needed a recovery period. I took a nap in the afternoon and felt some better by the evening. I fell asleep at a decent time that night and slept well throughout the night. However, it still wasn't enough. I awoke to feeling crummy and I felt so horrible I ended up only working half a day. I made it home and crashed until the late afternoon. This time when I awoke, I felt more like myself. I took a Lomotil and was able to enjoy an evening with my mother attending an art performance. This however, meant that I would have a bit of a later night than usual for a work night and I felt it the next day. Whenever I take Lomotil and it's effective, the next day is a bit of a swing day in the effects. Meaning that Lomotil may slow my bowel that day but the next day my intestine is trying to return to its daily normal and so will worsen my Short Bowel Syndrome as it's re-establishing itself. Between increased restroom needs, fatigue, and an overall crummy feeling I was struggling a bit for my usual normal. I was closer to normal than I was the day before but I could tell I still wasn't 100% myself. If I took another Lomotil to help my symptoms then I would just prolong the swing effect another day so I didn't want to take anymore medicine.

So how could I have helped myself besides the obvious of not staying up late, especially two nights in a row? I needed to not only catch up on my sleep but also to allow my brain a break from thinking and stressing. I should have put my phone down, ignored social media and focused on relaxing myself. As it explained in the resilience article, we may think we are recovering when we take a moment to rest but our brain is often remaining active with stressful or agitating thoughts. This activity isn't allowing a recovery period as we spend more energy wrestling with distressing moments.

So next time we are needing to recharge, let us remember to allow for recovery not just rest. Let's put down our technology, focus on our breathing and clear our thoughts. Engage in a light hearted moment with friends, journal, listen to our favorite music or podcasts, take a moment to enjoy nature, meditate or sleep. We all deserve a break from the mental and physical exhaustion of life and particularly that of chronic illness.

Pets and Chronic Illness

Everyday I'm grateful for my pups. I can't imagine not having them in my life in spite of challenges my health can present in the care they require. There are days that I want to stay in bed or am having a short bowel flare and don't want to move except for when I'm required to run to the restroom for the umpteenth time. They have provided me unconditional love and emotional support without fail. They force me to move when I'm not motivated. I truly feel as though I'd be lost without my pups.

Ruhle and Zia

My first real pup that I was solely responsible for was Ruhle, an Aussie mix. I found him at a camp
ground along a river. He ate hot dogs from us for dinner and the next day followed us along the river bank as we canoed down the river. We asked around and he was just a lone campground dog so we took him home. For the entire trip home, he curled up next to my feet in the truck floor bed and was calm as long as he was touching me. My goal was to train him to be a therapy dog and take him to work with me at the nursing home I worked for. He completed three levels of obedience training and obtained his Good Canine Citizen certificate. He loved learning new tricks and loved to perform them. He absolutely loved children and was an incredibly loving pup. When he was 4, we started fostering dogs for the local Humane Society and that's when I fell in love with a little female Carolina Dog and so we adopted her and named her Zia. Ruhle and Zia became extremely close. As he aged, he became like a grumpy old man and no longer enjoyed going to dog centered events. He loved our pup Zia but didn't enjoy other dogs so much anymore. He developed Kidney Disease and he unexpectedly passed when he was 10. Losing him broke my heart and Zia's heart. She wasn't herself without Ruhle so I decided she needed another buddy. I was looking for an older female pup this time, small to mid size, who would get along with Zia well. The female I wanted to adopt was too large and dominant for Zia. Zia is small but all muscle and stands her ground. I wouldn't be able to bear the thought of her fighting and being at risk of being hurt by another animal. And I discovered she does better with male dogs. We went to another shelter and I spotted a medium to large 2 year old male Catahoula mix who

Azriel ad Zia

had spots like Ruhle. And I just knew - I needed to get to know this dog. He wasn't what I was looking for at all as a companion for myself and Zia. The shelter let him and Zia out in a fenced yard and they got along well - he was even submissive to Zia. He has a large scar on his hip and a torn up ear. He spent a year in the shelter and is terrified of men. He definitely has a traumatic history but he took to me right away. We took him home as a trial and within a couple of days I knew he was for us. I named him Azriel. He is attached to my hip, is still learning some commands and although he remains scared of men, he has shown the ability to love on male friends of mine if they're patient with him. Zia even acts like she likes him on occasion and will at times run around with him. She no longer acts withdrawn and sullen.


There are plenty of studies showing the physical and mental health benefits of animals. According to Maslow, one of our hierarchy of needs is belongingness and love. Animals help meet this need, particularly for those who live alone. According to the Centers for Diseases Control and Prevention, animals have also been shown to increase fitness and happiness while decreasing stress with lower blood pressure, cholesterol and triglyceride levels, feelings of loneliness and improving socialization and exercise opportunities. Caring for an animal not only provides benefits to physical and mental health but it can also teach responsibility. Studies are showing that the responsibilities of caring for a fish helped teens better manage their diabetes and helped children with ADHD focus their attention. Children who read to animals have also shown an increase in social skills, sharing, cooperation, volunteerism and a reduction in behavioral problems. Children with an Autism Spectrum Disorder have shown decreased anxiety, improved social interactions and engagement with peers from a few minutes of interaction with guinea pigs. Service dogs, Therapy dogs and emotional support animals have for a long time demonstrated how helpful an animal can be physically and emotionally.

A pet is not necessarily for everyone. When considering adopting an animal, one needs to take into consideration the financial and physical requirements a pet will demand. Some pets may be less expensive in their maintenance and care than others. A high energy animal may not be the best idea for everyone. Housing and outdoor access will vary from animal to animal as well. Who will provide care to your pet if you travel or are unable to care for your pet for a period of time?


We can receive companionship from all sorts of animals though so if a dog or cat is not a particularly good fit, perhaps a different animal would be such as fish, rabbit, bird, hamster, etc. If you're interested in adopting an animal but unsure what may be the best animal for you, talk to someone at a rescue group, shelter, veterinarian clinic, or pet store such as Petsmart or Petco.


Another great option that is an alternative to the lifelong commitment of a pet is to foster for a local shelter or rescue group. Fostering allows a shelter/rescue to free more space for another animal in need, provide a temporary home to an animal and one can still benefit from the companionship of an animal while in their care until they've been adopted. Additionally, volunteering at a shelter/rescue group is another great opportunity to benefit from the care of animals with limited responsibility and is a much needed source of help to such organizations.

Vitamin D Deficiency

I remember in high school my doctor told me I was low on Vitamin D and to try to go out in the sunlight more. It wasn't suggested that I start taking a Vitamin D supplement until about a year ago when I complained of my struggle with my chronic fatigue to my adult GI doctor. He decided to draw lab testing various elements other than just my Iron and B12. This time he checked my Folate, Vitamins K and D to be on the safe side. Following the results, I was directed to start taking Folate and Vitamin D to bring them back into range and help combat my chronic fatigue. I was started on a high dose of 50,000 IU a week of Vitamin D for a couple of months with my level to be rechecked. With improvement to my Vitamin D level, I was able to change to 1,000 IU daily to maintain my level improvement and I was able to find this amount over the counter at a local grocery store in the pharmacy section.


It seems as though it is a lot easier to be deficient on Vitamin D than one may realize. We process Vitamin D through sunlight, diet, and supplements but we often are not in the sun enough to maintain adequate Vitamin D due to a variety of reasons such as season, cloud cover, air pollution, skin color, and location to equator and there are a limited number of foods with Vitamin D. There is also the risk of skin cancer with prolonged sun exposure to consider. So it may be likely that a supplement needs to be added to one's daily regiment in order to maintain an appropriate Vitamin D level.


Vitamin D acts as a hormone that functions in the intestine, kidneys, and bone to help stimulate transport of calcium and phosphorus to reduce the release of the parathyroid hormone that reabsorbs bone tissue. Both functions help us to build and maintain strong and healthy bones. Calcium and Phosphorus are both minerals that serve important functions and can be dangerous at too high or too low of levels. Calcium also needs Vitamin D for proper absorption. Vitamin D also helps maintain our muscle function and immune system to fight off illness and infection. Some studies suggest Vitamin D may also help to prevent cancer as well as other diseases such as diabetes, heart disease, high blood pressure, dementia, and multiple sclerosis. Vitamin D is essential to help protect bones from becoming too thin, brittle, or misshapen as children are at risk of rickets and adults are at risk of osteomalacia and adequate Vitamin D can help prevent osteoporosis in adults as well.


Infants who are only breastfed are at risk of Vitamin D deficiency as breast milk contains a small amount of Vitamin D. Therefore, the American Academy of Pediatrics recommends breastfed infants be given a liquid multivitamin or 200 IU daily for their first two months of life and 400 IU afterwards until they are drinking formula or milk that are fortified.


The highest diet source for Vitamin D is cod liver oil followed by sources such as Swordfish, Salmon, Tuna, Fortified Orange Juice and Milk. Other sources at smaller amounts include Fortified Yogurt and Margarine, Sardines, Beef Liver, Egg Yolk, Fortified Cereals, and Swiss Cheese. Vitamin D is fat soluble therefore opting for fat free or low fat with Vitamin D options will result in poor absorption.


Your doctor can easily check your Vitamin D level with a simple blood test and recommend if you need higher or lower amounts of Vitamin D. The Institute of Medicine recommends for the average adult under the age of 70 to intake 600 IU a day and 800 IU a day if over 70. Some professionals suggest these recommendations remain too low for what is actually needed.


The body may have difficulty absorbing or processing Vitamin D due to issues such as:

• Kidney or Liver Diseases
• Cystic Fibrosis
• GI diseases/conditions
• Gastric Bypass Surgery
• Obesity

There are medications that may also lower Vitamin D level such as:

• Laxatives
• Steroids
• Cholesterol Lowing Drugs
• Seizure Control Drugs
• Rifampin
• Orlistat

Signs of low Vitamin D include:

• Frequent illness or infections due to lowered immunity, particularly respiratory tract infections
• Fatigue
• Bone and Back Pain
• Depression
• Impaired Wound Healing
• Bone Loss
• Hair Loss
• Muscle Pain

It's important to have your doctor monitor your Vitamin D level not only to ensure that you're obtaining enough Vitamin D but also to prevent too high of a Vitamin D level.
High Vitamin D can cause:

• Nausea, Vomiting, Constipation, Poor Appetite
• Itching
• Increased Thirst and Urination
• Weakness
• Weight Loss
• Confusion
• Heart Rhythm Problems
• Kidney Damage
• Pancreatic Cancer
• Ataxia - a condition that can cause word slurring, stumbling

Vitamin D supplements come in two forms - D2 and D3. D2 comes from plants and requires a prescription whereas D3 is the form that is made by the body when the skin is in contact with the sun and is found in animal sources. D3 is available over the counter and is more easily absorbed and lasts longer in the body from dose to dose.


Even if you are not exhibiting signs of Vitamin D deficiency it can be helpful to request a Vitamin D level check just to be on the safe side.

Balancing Chronic Illness and Socializing

Belongingness is a hierarchical, psychological need and socializing is an important part of that for everyone regardless of health. But that doesn't mean we have to be in a near constant state of socializing with others, does it?

I'm a bit of an introvert myself so I need time to myself to recharge after extensive socialization and on top of that, I don't feel well a lot of the time due to my chronic illness. Additionally, in order to support myself my priority is maintaining full time employment. To do so, this requires my constant attention to my health needs so that I may recover from the last week of work so that I may work the next week. It is an ever-present cycle of care that I must balance and protect for my livelihood.


My work as a social worker involves talking to chronically ill patients all day long 5 days a week. Between providing care to my patients and maintaining my relationships with my co-workers, I'm often exhausted upon my return home and I don't necessarily want to socialize with anyone else. I want to recover from the day. I am emotionally and physically drained by this near daily ritual that is employment. And if I am going to socialize on most days, I prefer messaging versus verbal communication except on rare occasions and of course during in-person interactions. I'm also not one for spontaneous social activities - I like to plan ahead so that I may prepare myself to be able to attend and participate as well as I possibly can. The unpredictable nature of chronic illness does not always allow for activities or socialization even with the best intentioned plans.


Balancing a social life and chronic illness is a common struggle. Too little socialization fosters isolation and depression but too much socialization drains us of our reserves to maintain our physical health. We often pay the following day or days after extending ourselves beyond our physical limits. An occurrence we often push ourselves to do on particularly good health days as we want to leave our homes, our routines, and rejoin the world and our loved ones in activity and socialization. Thus, it is far too easy to isolate ourselves away but then the double edge sword of trying to protect our physical health can also cause damage to our mental health at the same time. Maintaining friendships amidst chronic illness can be quite the challenge as well.


My best relationships with others, platonic or romantic, are those with individuals who not only take an interest in understanding and respecting my daily health struggles but also do not take my at times lack of presence personally. I don't require nor desire constant communication and because of my health, I am not always the most reliable for being able to keep scheduled activities. Even if that activity may be a friend coming to my home while I lie in bed in my pjs, that doesn't mean I will physically feel up to a visit even in the most conducive of situations for my health. Sometimes I feel more comfortable being along than in the presence of others.


Nevertheless, in spite of all the challenges and personal preferences, socialization is important for our well-being. Fortunately, with today's technology it is easier and faster to be able to communicate with others than it has ever been before. In person socialization can't be replaced but we can still develop meaningful, deep friendships with others through the phone and social media. We can receive and give comfort to others through these interactions as well. It may not be the same as the physical touch and care of another but it is not something to be dismissed either. Regardless the format, we must continually strive to balance our social needs and our health needs for the best outcomes for ourselves.

Keeping it Simple

A few years ago I underwent an intensive transformative time as I was separating from the love of my life and in the midst of this heart wrenching, soul destroying period I was also losing others in my life I hadn't expected.


It was at this time that I wrote the following revelations in Let the Fire Burn :

"No longer care what others think of you. When you lose respect for someone, that person's opinion no longer means anything anyway. Don't waste yourself on those who have already lost your respect. Cherish those who are true to you - those who are supportive, loving, caring, and there with you through the brightest and darkest times of your life - not those who try to create dark times, tear you down, harm you with their malicious intent and manipulations, leave you without explanation. Don't let yourself succumb to the power of others, especially when it is a harmful power. You don't have time for that nor should you.

Don't take the dangerous, personal issues of others on as your own. People will attempt and succeed at betraying, manipulating, deceiving, and harming you. The reasons for others to inflict such pain on another is deep seated within them. Stop trying to decipher the reasons behind their actions. Their reasons don't need to make sense. Their reasons are just that, theirs. Not yours. Do not take on more pain simply because another is engaging in harmful behavior towards you."

That year I learned a multitude of lessons, none of which were easy. Not only was I having to cut ties with others of my choosing but I also had others choose to cut their ties with me. I felt abandoned and betrayed by those I held close for so many years, individuals who I had bared my soul to. It had all been in vain. It didn't matter how much I had cherished individuals in my life, nothing could stop what was being set in motion.


And so while in my own depths of depression, I had to learn to let go. Letting go didn't come easy to me but at some point that changed. Instead of holding onto feelings of abandonment and betrayal, I focused on the freedom from drama. My life was chaotic enough as it was, I certainly didn't need added drama. I stepped away and allowed others to do the same and when I accepted that I was able to let go of the stress caused by others.

Nowadays I keep my circle tight. Outside of work, there are few who I deeply engage myself with. It's not anything against others, it's a matter of simplification. With fewer people, there is less stress and mess. Those I remain close to also accept that I may not talk or visit them for long stretches of time. We both know though that the other is just a call away if one of us is needed for anything. We don't take things personally with each other and we don't create drama for the other. These are deep, meaningful yet simple friendships that sustain us. These are the type of friendships I not only want but also need.

It's okay to take a step away from someone or something. Sometimes it is necessary for our mental health. Learning to step away has taught me not to take the actions of others personally even if it was meant to be personal. It no longer matters. What does matter is self care and happiness. These are things that are within our own hands and others cannot take it away from us without our permission. I stopped giving my power over to others and I've never looked back.