Tuesday, December 15, 2020

Accepting Body Changes


It's common for those of us with chronic illness to struggle with our weight - whether it be to gain weight or to lose weight. Exercise is often difficult to maintain when we don't feel well and everyday is unpredictable. Eating healthy may not be as easily accessible to others be it due to financial burdens we face on account of our medical expenses, limited income related to ability to work, or because of health reasons such as diet restrictions from what our bodies will tolerate or what tastes good in the moment. Our bodies often don't absorb nutrients properly and medications have side effects affecting weight. Mental health can influence weight - we may be hungry or not at all, we comfort ourselves with unhealthy food options, and we may lack the motivation or energy level to engage in physical exercise.

The last 4 years has been a roller coaster of body weight changes for myself. For the majority of my life I was considered under weight regardless of what I ate. However, the body changes with illness and with age. In Graduate School, I gained a significant amount of weight due to unhealthy eating and depression and I worked very hard over the course of 2 years to lose the extra weight. I exercised and ate healthy and I was able to maintain my weight again through healthy eating choices until my divorce 4 years ago.

My weight yo-yoed over the last 4 years since my divorce, which wasn't healthy or helpful for my metabolism. I lost weight at times due to healthy eating and other times due to illness. Last year, I gained weight to my heaviest again. I started this year exercising regularly and eating healthier in an effort to improve my health and shed some of the extra weight. I realized I didn't need to lose all the weight but instead wanted a happy medium between being under weight and my present weight. I failed to realize though that the changes the body undergoes with age has caught up to me. My metabolism is not anywhere near to what it was in my 20s when I first started focusing on eating healthy and exercising. Now, the combination of eating healthy and exercise only changes the scale by less than 10 pounds. To make matters worse, after losing that 10 pounds, I ended up gaining 20 soon after - that was an additional 10 pounds that I hadn't been at before.

These changes in my physical appearance have been difficult to accept at times. I longed for how my body used to look. I shied away from full body pictures of myself. I was so used to what I previously looked like that I hadn't accepted the changes in my appearance. I kept thinking, "I'll lose the weight". Negative thoughts about myself would race through my mind whenever I looked at pictures of myself or saw myself in the mirror.

Now, I realize that my weight changes may not seem to be significant especially in comparison to others. But this shouldn't be a comparison to others nor should it encourage body shaming. All bodies are beautiful and no one should ever feel ashamed of how they look. And no one should judge another person for their appearance nor should someone be judged for their own self-image regardless what others think of that person's physical appearance. My weight changes, however, are significant to me and the change I saw in myself was difficult to come to terms with. 

With time, I became to understand why others said I was "too skinny" before when I was underweight. My doctors tell me it's good "to have some extra weight as reserves" for when I become sick so that I don't lose too much weight like I have in the past. With time, I've come to accept my new body. Sure, I would still like to lose weight to be at that middle ground between to the two polar opposites. But I've realized I may not reach that middle ground level. And that's okay. I can continue to exercise and eat healthy not for an outward change but instead for the internal benefits. With this acceptance has also come a happy medium with exercise as I no longer push myself to exercise every day and instead aim for 3-5 times a week as allowed by motivation levels and how my body feels each day. Sometimes when I look at myself in pictures, I feel that initial shock again of the weight I've gained but I remind myself that my body is not shameful and I can continue to my efforts to help maintain a healthy level of eating and exercise for myself, not for the scale.


Jenny - May 2020

Tuesday, November 24, 2020

Socializing in a Pandemic

dinner table

As the year is drawing to an end and the holiday season has begun, it got me thinking about how different socializing is with my loved ones.

The holiday season doesn't hold much significance for me although my family does have its own traditions. For Thanksgiving, my parents and I like to go to my favorite Chinese restaurant for the treat of Dim Sum. Since purchasing my home a few years ago the tradition has been for my dad's family to join us for Christmas at my house during the first week or two of December for a meal cooked by my parents. Then my parents and I like to have a meal just the three of us on actual Christmas day. My parents and I decided to downsize our holiday meals a few years ago and it has greatly reduced holiday stress all around for each of us.

This year is different though thanks to Covid. My parents and I have been having a meal together once every week or two. We all wear masks and socially distance from one another. We don't even hug each other anymore. We were planning to have Indian Tacos together with my boyfriend, Mike, for Thanksgiving. That was until Mike was exposed to someone with Covid so both of our families decided to cancel any get-togethers. We both remain asymptomatic and are awaiting testing. To truly know if you're positive for Covid, it sounds as though daily testing is what's actually needed. According to Harvard Health Publishing, if you test too early or too late, there aren't enough viral particles to detect the virus. This has made it more difficult to determine when Mike should be tested as we are uncertain when exactly he was exposed or when that person started experiencing symptoms. We also didn't want to risk a false negative and then expose anyone in our families to us if one of us is actually positive for Covid.

My dad is the youngest of 8, the oldest being in her late 80s. As he and his siblings are older, we decided not to host a Christmas meal for the family. My parents and I still plan to have a meal together, however, that is subject to change as life is unpredictable during a pandemic.

Being apart from family for the holidays is a small price to pay to help maintain my health and theirs. I greatly miss being able to hug my parents but my priority is keeping them safe. This is particularly true as I am still working in the medical field and am exposed to many more individuals than my parents.

Technology has been a blessing during this year so that I may text, call, and video chat my parents and my nieces. It isn't the same as an in-person visit or hugging a loved one. It remains an option to be grateful for though. One of my patients told me that every Saturday he and his wife video chat with all of their children over dinner. Each week someone chooses a recipe and every household makes the same meal that they then enjoy while video chatting together.

It has been difficult to not be able to see my friends or my nieces as often as I usually would have this year. I did take the risk of spending a day with my best friend and her family during the summer, Mike and I went on a vacation to Colorado, and I had an outing with each of my nieces this Fall. I feel as though it has been particularly hard on my nieces not being able to have our usual outings as I want to keep them and myself healthy. I'm fortunate to have the companionship of Mike to help me cope with the stress and isolation of this year. Since we are our own grouping, I am able to receive all the hugs from him that I'm missing from my parents. Not everyone who is isolating has that blessing. I am grateful that Mike and I started dating prior to the pandemic starting as I would not have felt comfortable being involved in the dating world during these times. 

Our families have been kind to offer to drop off a part of their holiday meals so that we may still partake as we are able without potentially placing them or others at risk. This holiday season looks quite different than years past but hopefully, we'll be able to look forward to many more holiday seasons together if we remain safe and cognizant during this time.

As the progress of a Covid vaccine advances, I'm hopeful that by this time next year the world will be very different from what it is like today. I wish you all the best health - physically and mentally during these times. Reach out to loved ones as safely as possible - not only for your well-being but theirs as well. We all need one another, perhaps more now than ever. 

Tuesday, October 13, 2020

FAP and a Feeding Tube

life with a feeding tube



This is a Guest Post with Jeni LeeAnn

I grew up knowing I had a 50/50 chance of having Familial Adenomatous Polyposis (FAP). My dad found out he had FAP just before I was born. His mother had FAP and all she knew growing up was that there was some family digestive disease that was killing some family members. She would up dying at 51 years old from complications of a Desmoid tumor when I was age 6.

My story is a little more complex because I was born with no nasal passages and had many surgeries before I could even remember. I do remember spending a lot of time in the hospital and doctor offices as a child. I was always preparing for a surgery or recovering from one.

When I turned 16 we did the typical scopes to see if I had FAP. Sure enough I had FAP. I don't remember being sad or depressed about it. It was just another thing to deal with. I was no stranger to hospitals and surgery, so for me it wasn't a huge deal.

I had my large intestine removed when I was 20 and reconnected to my rectum so I don't have an ostomy. Life for me was pretty normal for the next 10 years, just yearly scopes and whatnot. I felt blessed and had no major issues.

Jeni LeeAnn
That all changed in 2009 when I started to have nausea, bloating, and pain. My doctor at the Cleveland Clinic did all the normal scans to see what was going on. What would follow would be about 10 years of guessing and uncertainty. He would do 7 surgeries to try to find out what was going on. Two surgeries were laparoscopic and 5 were full open surgeries. Finally, we found Desmoid tissue where my stomach and small intestine meet. It is as my doctor puts it "strategically placed for maximum damage", if it were even one inch lower it would not be an issue.

The hardest part of this time was the fact that I felt crazy. Every test and scan he did came back normal. I felt like it was all in my head. I even tried telling myself there wasn't a problem and would force myself to eat. That would only cause more issues such as being sick for a week following forced eating.

I was incredibly blessed by my doctor, he trusted me and knew what I was was the way it was. He never once said "sorry, I don't see anything on the scans so I can't do anything for you". He always said "I know something is wrong, we just don't know what it is yet". I know if I had many other doctors, they would have given up on me. I am beyond thankful for my doctor, who kept fighting for me.

The last 5 years have been a series of surgeries to put mesh around the Desmoid tissue and keep it at bay. This sadly, only gave me three weeks of freedom for my symptoms and would have a three month recovery due to the amount of surgeries. This seemed like a very high price for only three weeks of freedom. Then things progressively got worse to the point where after my last surgery in December 2019, I was loosing half a pound every day. I just was not able to eat or drink enough. It became mentally exhausting. So we decided to try a feeding tube. In March 2020, I had my Jejunostomy feeding tube (J-tube) placed.

Now, July 2020, I have had my feeding tube for almost 5 months and it has not been without complications. I had issues with granulation tissue as my body was healing from the surgery. The feeding tube had to be placed a second time which created a second hole. Due to Covid19, my doctor didn't want to risk infection due to any leaks from ingesting food or drink so I was nothing by mouth for three weeks until the hole was healed. 

I clean my feeding tube daily, keeping the site dry and flush the tube every three hours to keep it clean and for me to remain hydrated as I have difficulty drinking enough fluids. I complete nightly feedings for 10-12 hours with a nutrition formula I obtain through a home health agency. I obtain about 75% of my nutrition, or 1000 calories, through the feeding tube and about 500 calories from oral ingestion.

The feeding tube has given me my quality of life back. Food now is back in its proper place in life. It's something I can enjoy when it sounds good not something I have to force and get sick from. I feel incredibly blessed.

Jeni LeeAnn obtained a Bachelor's in Ministry Leadership and has served with her church in various capacities for the last 25 years. Jeni particularly enjoys working with her church's female youth as a youth leader.

Thursday, September 17, 2020

Navigating and Understanding School Accommodations




I was 9 when I had my first surgery that gave me an ileostomy for 6 years before undergoing a straight pull thru reversal. Throughout my academic career following my first surgery, I required accommodations for my learning due to my physical health. My parents obtained a 504 plan to achieve such accommodations during my middle school and high school years. A 504 plan outlines how a school will support a student and prevent learning discrimination of students with disabilities under the civil rights law Section 504 of the Rehabilitation Act.


My accommodations allowed me unfettered restroom access, use of a private restroom where I was able to keep extra clothing and medical supplies I may need in case of my ostomy leaking or a bowel accident after my reversal, and understanding of absences due to illness and hospitalizations. As I recall it was an easy process for my parents to obtain my 504 plans and I remember my schools being very supportive and understanding from my teachers all the way to the principals.


There are no set rules for what should be included in a 504 plan although schools are required to have written 504 policies available. There isn't any standard form or template for 504 plans. 504 plans are not part of special education and so there are fewer protections than in the special education process. To qualify for a 504 plan a child may have any disability that interferes with the child's ability to learn in a general education classroom. According to the 504 Section, a disability substantially limits one or more basic life activities that can include learning, reading, communicating, or thinking. Accommodations to learning are typically included in 504 plans to address specific challenges to learning - this doesn't mean that there are changes to what a child is taught but how they are taught through removing barriers to learning. Accommodations may include changes to the environment, instruction, or how curriculum is presented. On rare occasions, modifications may be included that do change what a child is taught or expected to learn. 


Every school is different so a full evaluation may be required including medical information and school performance. Requests for a 504 plan must be submitted in writing and should go through the 504 Coordinator - the school principal can direct parents regarding who to contact for their request. A meeting will be scheduled to determine if the child qualifies for a 504 plan and what support may be needed. It is advised to review and update the approved 504 plan once a year. Read a sample 504 plan here.


There are also Individualized Education Programs (IEP) that differ from 504 plans. An IEP is a plan for a child's special education experience in school by providing individualized special education and related services to meet the child's needs. IEPs are covered under the Individuals with Disabilities Education Act (IDEA) which is a federal special education law for children with disabilities. To qualify for an IEP a child requires a comprehensive evaluation and must have at least one of the disabilities listed in IDEA that affects the child's educational performance and/or ability to learn and benefit from the general education curriculum and requires specialized instruction to make progress in school. An IEP must include the child's present levels of academic and functional performance, annual education goals, services the child will receive, timing of services, any accommodations or modifications, how the child will participate in standardized tests, and how the child will be included in general education classes and school activities. An IEP team must review the IEP plan once a year and re-evaluate the child's needs every three years.


504 and IEP plans are only available to children through grades K-12. The Section 504 of the Rehabilitation Act still protects college students from discrimination and college students may still receive accommodations although they will not be provided a 504 plan like in grades K-12. It's important for college students to contact the disability services at their colleges to obtain required accommodations.

Friday, August 28, 2020

Vacationing Amidst a Global Pandemic with Chronic Illness


It's been over a year since I took a real vacation. I took a week off work at the end of 2019 to work on projects for my house, but that doesn't really count. I've been in need of a real vacation, particularly with the stress of Covid19. Work has changed with the pandemic resulting in extra responsibilities and increased exposure to others. I'm always mindful to wear all of my PPE to best protect myself and thus far haven't caught it myself.

Right before Covid19 hit the United States, I started a new relationship and this August we reached our 6 month anniversary. This may not seem like a big deal to many but it is for me. After a devastating divorce in 2016, it hasn't been easy for me to find someone I feel as though I have a real chance for a lifetime commitment with.

We decided to drive to a cabin in the mountains, in the middle of a nature preserve, in Colorado to celebrate our relationship milestone. Travel is not the easiest situation for someone like me who has Short Bowel Syndrome (SBS). I don't let my health stop me from enjoying the activities I'm most interested in but that doesn't make participation in activities easy either. We would be driving for a full day with as minimal stops as possible in order to reach our cabin. This meant I would need to take the appropriate amount of Lomotil medication to slow by SBS and limit my food and fluid intake as well to help us minimize our stops for restroom breaks. However, I have to be careful with the amount of Lomotil I take as it will cause me to have intestinal blockages if I'm not careful and when traveling across the United States there are long distances without any facilities. And remember, we're in the middle of a pandemic and a toilet paper shortage. Not every business will allow non-customers to utilize their restrooms and not all businesses even admit to have a restroom. This not the best situation for anyone, especially for someone with gastrointestinal issues. We stocked up on toilet paper - I think we took about 25 rolls and an entire box of Calmoseptine ointment just to be on the safe side. I was over prepared but it's better to be safe than sorry.

The day we left for vacation was actually easier than the day we came back as my intestine was barely active resulting in a lack of appetite and thirst which helped reduce the number of stops we needed to take especially as there was about 2 hours of travel where there weren't any available stops. On our way back, I wasn't as fortunate although we managed fine. I took 5 Lomotil tablets on our way back but I was regularly hungry and thirsty. I was worried about the distance in between available stops so I frequently asked to stop - about every decent sized town that had a facility. I've also increased my water intake this year and so my body has become more accustomed to feeling thirsty and the need to urinate even if I haven't been drinking as much as I usually do anymore. Wearing a mask regularly when in public spaces to help prevent Covid19 transmission has also increased my thirst making it even harder to limit fluid intake. Any food or fluid intake and movement activates my SBS so any activity involving walking also increases my facility needs.

Jenny and Mike

We finally reached our small cabin in the mountains and though we had some activities in mind, we didn't have much of an itinerary planned. It was more about relaxing away from home and work for us. The cabin belonged to the parents of my boyfriend's friend - who had just moved to a house within the same nature preserve a couple weeks earlier. We visited with his friend's parents often during our trip - enjoying meals and borrowed their off terrain utility vehicle to explore the nature preserve one day. I made sure to take a roll of toilet paper while off roading as the preserve was large and there were no public facilities. During our visit, we would see deer, big horned sheep, birds, eagles, rabbit, and even a bat that almost hit both of us in the face one night.

We decided to visit the nearest large town and enjoyed visiting its' local distillery, breweries, and winery as well as shopping at local shops before dining at a well known local pizzeria for dinner. We traveled to the Royal Gorge but decided not to cross the Gorge's bridge due to a steep admission price. We were able to enjoy the views from available overlooks.

Royal Gorge
Jenny with Chipmunks in St. Elmo's
We spent another day traveling the back dirt roads (which was a 2 hour trip, again no facilities available anywhere) to Mount Princeton in the San Isabel National Forest and driving to St. Elmo's - a ghost town in the national forest. There are still buildings to view in the ghost town and a small shop that remains open to visitors. There you can purchase seed to hand feed the local chipmunks at the Chipmunk Crossing. The chipmunks were very friendly, crawling all over us and into my purse even. The views and interacting with the chipmunks made this my favorite outing for the week.

I managed well during the day with our activities in spite of my SBS, however, the nights were a different story. Due to increased fluid intake and my Lomotil wearing off in the evenings, I required a significant increase in restroom breaks during the night. There was one day when I required to not take any Lomotil in order to allow my system to return to normal and prevent an intestinal blockage from occurring due to prolonged Lomotil use.

Overall, the vacation was a success and we thoroughly enjoyed ourselves. Colorado is a beautiful state and we were able to social distance from others easily to help reduce our risk of Covid19 exposure. If you're considering traveling during the pandemic, remember to be aware of any relevant state or local mandates of the areas you'll be visiting, bring a mask with you and plenty of your necessary medical supplies. I would also suggest toilet paper (you never know!) Consider traveling to less populated areas to reduce your risk of Covid19 exposure and avoid Covid19 hotspots. Each state of the US has a tourism website with great information about their local attractions and places of interest to help plan an interesting trip. Be safe out there!



Sunday, July 19, 2020

Sensory Deprivation Tanks



I've wanted to try out a sensory deprivation tank for years now and this year, for my birthday, I finally went to one.

Sensory Deprivation is also known as Restricted Environmental Stimulation Therapy. A sensory deprivation tank is a float tank that contains Epsom salt (800 pounds or more) in a small amount of water to allow an individual to effortlessly float. Floating in salt concentrated water allows pressure to be removed from joints, muscles, and tendons. The tank is closed to eliminate all sensory tasks including light and sound thereby allowing the entire body to enter a deep level of relaxation and process information and thoughts in a new way without distraction or strain. The water and air are heated to skin temperature to reduce the sensation of water on the skin. Benefits can include reduced joint, muscle, and nerve pain, improved sleep, energy, creativity and mood with a reduction to depression and anxiety. Soaking in Epsom salts helps soothe sore muscles and irritated skin and reduce swelling thereby helping with minor aches and pains.

My boyfriend and I went to a local float spa. Each suite had it's own sensory deprivation tank and
private shower. We were instructed to shower, using their provided products, before and after entering the float tank. The reason to shower before is to remove any oils or body products that would enter the tank water and with hundreds of pounds of Epsom salts, one would want to wash again afterwards to remove the salt water. The tanks could be left open or be closed and offered a blue light that could be turned on or off as well as sounds. We both decided we wanted the full experience and so we turned off the light and any sounds and kept the tank closed. We were offered ear plugs to further reduce sound and help prevent water from entering our ears. The suite and tank weren't completely sound proof but the float spa was kept quiet and soothing music was quietly played in varying areas of the spa. A head flotation device and spray bottle to rinse your eyes of salt water were also available.

We laid with our heads at the end with the blue light and quickly discovered just how buoyant we were in the saturated salt water. We both kept floating around the tank until the water settled from our entering the tank and disturbing the water. Any movement inside the tank would disturb the water resulting in floating around the tank once again. The water felt silky when touching my skin due to the high level of salt. The salt water could cause slight burning to any open skin that was cut or irritated. Protective ointment was offered to help reduce any stinging from the salt water. We started floating with our arms down by our sides, however, we both felt tension in our shoulders and neck in this position. I found stretching my arms above me to be comfortable and my boyfriend remained with his arms down by his sides and stated that eventually his shoulders and neck relaxed after a period of time. We both have neck problems so I'm not sure if the shoulder and neck tension we both experienced was related to our neck conditions or if others would have the same experience. My boyfriend also has chronic nerve pain in his back and lately his knee has been bothersome as well (we've since learned he had a meniscus tear so no wonder his knee was hurting). I noticed completing a full body stretch in the tank was very pleasurable and felt better than typical stretching outside of the tank. My boyfriend reported reduction in pain after the float but was experiencing pain again by the evening time.

I had a difficult time shutting my mind off in the beginning of the float by towards the middle of my float time I was able to experience a meditative state. My boyfriend became so relaxed he almost fell asleep during his float. There are many benefits to meditation and a sensory deprivation float helps to reach a deep meditative state by relieving the body of sensations. Some of the benefits of meditation include to reduce stress, anxiety, pain, and improve sleep. Meditation becomes easier and more effective with practice. I would conclude that this would be the same for sensory deprivation floats as well. Visit here for a list of relaxation techniques you can complete at home.

Overall, we both enjoyed our float experience and would recommend it to others.

Monday, June 29, 2020

Desmoid Tumors

desmoid tumors

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.


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:







Friday, May 29, 2020

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

  1. 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