Turning age 95 with Familial Adenomatous Polyposis

Carleton Myers turns 95 this June. He has Familial Adenomatous Polyposis and has had an ostomy since about 1948. He has seen a lot in his years and a lot of changes in the management of this rare disease and ostomies. 

Carleton's mother likely had FAP as she died from colon cancer in 1928 at the age of 28. She was adopted so there is no further family history of his mother available. His father lived to be nearly 105 with no history of colon cancer or FAP. Carleton's only sibling, Elmer, was first diagnosed with colon cancer and FAP and Elmer's first son also had FAP and died in his mid 30s. Carleton and his wife, Sheila, 91, have 5 sons who have all tested positive for FAP. Two of their grandchildren also tested positive for FAP.

This is an interview with Carleton conducted by his son, Kevin.

    What were things like when you were growing up with FAP?

    I managed it very well; it was right before I went into the service. I didn't have too much trouble then; it was after that when trouble started. When I learned we could have an operation to take the large intestine out completely, I did that, and it was successful.

    When did you first find out that the operation could be done?

    It would have been probably around 1948. That's when I knew what had to be done because my brother (Elmer) had it done in the early 1940s. He was out in the South Pacific and they sent him back because of it. He had a lot of trouble and hospitals. He managed to survive it. He died when he was 42. Other problems that this brought on, I guess. He had a lot of trouble before it. I didn't, I was fortunate enough to be younger than him and they were learning more and more about it and what they had to do and that saved me.

    How did you find out about Henry Ford Hospital and Dr. Block?

    I went there when Elmer found out that he had cancer. In two months, I went in and had the whole rectum system out because that's where it started growing in my brother. Because he had his intestine out before me. I didn't know which way, but I had good doctors. Just as soon as we found out that my brother had cancer, I had everything taken out.

    You never expected to live into adulthood when you were a teen, is that right?

    I was hopeful about getting into my 40s. That's what I was shooting for, that I could get that far. I got that far, and I kept going. What they did to me originally was taking all of the polyps that were left after they took out most of my large intestine, they left about 6 inches and the rectum. I had to go in many times to get polyps removed. Once Elmer found out he had cancer, I went immediately and found a doctor and had the rectum taken out - it was about three months after that. All of you (my children) were look at in your teens.

    Do you have any recommendations for anyone now that has FAP?

    I don't know what the doctors are doing now. I was just so glad to be living.

    What was it like knowing about FAP?

    Sheila - Scary. I knew it was going to be a battle.

    Carleton - My brother wrote me a letter right away and I immediately got a doctor to do it. My brother raised me because my mother was dead so didn't have much choice. 

Myers Family
Carleton and Sheila in the middle
Their son, Kent, and his wife at top left
Their son, Keith, below Kent on left
Their son, Kevin and wife next to Keith
Their son Kory on bottom left
Their son Kurt on bottom right

Carleton and Sheila 
75th Wedding Anniversary

Carleton passed away at age 96 on 10/16/2022 after viewing the Autumn leaves changing with his son, Kevin, and daughter in law. By all accounts, he died peacefully.

Carleton had an ileostomy and in recent years had surgery for an urostomy as well. He had Diabetes and some difficulty walking without mobility aids but in general was doing well with only rare intestinal blockages and maintained a well intact memory until Sheila's death in June 2022 - afterwards his health began to decline rapidly, per his son, Kevin. 

Michigan started a Familial Adenomatous Polyposis Awareness Week each year during the week of June 16 to honor him. Find out how to help further honor Carelton's legacy and FAP/AFAP patients where you live with the FAP/AFAP Awareness Week Proclamation

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Updated 10/20/2022

Ostomy Reversal Anniversary - 20 Years

It's hard to believe it, but this is my 20th anniversary of my ostomy reversal!

I had my colon removed at age 9 due to Familial Adenomatous Polyposis. I was expected to have my ostomy reversed into a Jpouch a few months later. However, this is far from what would happen.

I suffered complications from my colon removal resulting in having an ileostomy for 6 years before it would be reversed. My small intestine wrapped around itself and my surrounding organs resulting in my Jpouch dying from lack of blood supply. I required emergency surgery to remove the dead small intestine and move my stoma from my left side to my right side. I would have 5 surgeries that year including one to start a Straight Pull Thru. However, my surgeon refused to complete the Straight Pull Thru reversal. 

I experienced a very difficult time trying to adjust to my ostomy. I hated myself, my body, and those around me who I felt I could blame my ostomy on - such as my parents and medical providers. It wasn't until high school when I entered counseling that I was able to start processing the medical trauma I had experienced and learn to cope with my PTSD, depression, and anger. It would still take another decade at least before I felt truly comfortable in my own skin and began to appreciate my body.

My 2 Stoma Scars and
7 vertical Surgery Scars

Six years after my first surgery, when I was in high school I found a surgeon willing to attempt
completing the Straight Pull Thru. I had longed for an ostomy reversal every day of those 6 years. It wasn't even considered an option until I told my GI specialist that I had been having the urge to have bowel movements in spite of having an ostomy. She explained that this urge was caused by mucus in my small intestine but because I had the urge to excrete it and was able to do so, perhaps a reversal would be possible after all.

Due to my Jpouch dying requiring part of my small intestine to be removed, I didn't have enough small intestine left to create another Jpouch. I would have to create my own reservoir in my small intestine. This was done over the span of a year of performing Kegel exercises while an inflated Foley catheter was inserted into my anal canal. This exercise would create my own reservoir and strengthen my sphincter muscles that hadn't truly been used since I was age 9. I had my heart set on a reversal so I faithfully completed these daily exercises.

My GI specialist and surgeon warned me that while the reversal would be attempted, there was no way to know if it would be successful or not. I may go through surgery only to wake up with my ileostomy being permanent. I didn't care though, I had to try for the reversal.

My parents agreed to give me a thumbs up or down sign as soon as I opened my eyes from the attempted reversal surgery so that I wouldn't have to wait to know how the surgery went. I refuse to talk when I have a NG tube inserted so I wouldn't be able to ask them the outcome. Fortunately, my parents gave me the thumbs up sign and I was able to relax and drift back into my medication induced sleep. 

Due to having 6 surgeries by this point, my adhesions started to create a stricture around my small intestine resulting in surgery the following year to remove adhesions. I wasn't sure if this 7th surgery would affect my ability to maintain my reversal or not. I fear of any future surgeries as well due to this risk. 

This was my second surgery to remove adhesions and each new surgery creates more adhesions. I now have chronic pain, nausea, and increased risk of intestinal blockages due to my adhesions. I fear that I will require another surgery in the future to once again remove adhesions and place my reversal in risk. Fortunately, my symptoms caused by my adhesions are not severe enough to require another surgery at this time. However, I continue to develop polyps in my duodenum that may require the Whipple procedure at some point.

My Scars In All Their Glory

A Straight Pull Thru and the extended length of time I had an ostomy both have affected my ostomy reversal in general. I have Short Bowel Syndrome resulting in 20+ bowel movements a day. I also often experience urgency with bowel movements that is worsened by not having a rectum and the amount of time my sphincter muscles weren't regularly used while I had an ostomy. In spite of these obstacles, I manage to function well most days and I'm able to participate in the majority of activities of my choice with the aid of anti-diarrhea medications when necessary. Due to my Short Bowel Syndrome, I do have flare ups causing me to require the restroom every minute or so and these flares can last for hours at a time even with anti-diarrhea medication. 

I try not to dwell on the possibilities of the future that may or may not occur and instead focus on enjoying the present status of my health. I remain amazed that my Straight Pull Thru has managed so well for me to reach 20 years. I hope for many more years with my reversal.

The Evolution of Myself with Chronic Illness

When I look back on my life, I am drastically different now than how I was as a child and even how I was when I started Life's a Polyp in 2012. My views about myself - physical and emotional have greatly evolved over time to culminate in a wonderful sense of self-acceptance. This was not achieved by myself though. It was a painstaking process lasting a couple of decades with immense support of others - including yourself. 

As a child, I was painfully shy. I didn't talk to strangers and barely to those I did know but wasn't particularly close with. I didn't start to become social until I forced myself in 7th grade after experiencing bullying the year prior. My shyness was exacerbated by the surgeries I underwent when I was in 5th grade and by having an ostomy. I had no self-esteem and judged myself harshly for the appearance of my surgery ridden body. Truth be told, I hated myself, my body, and those I blamed for my health condition. Changing my social habits wasn't easy but I found it necessary for my emotional survival and so I pushed myself to expand past my comfort zone. 

From 7th grade onward, I acclimated to the new, more social self I created and haven't been without friends since. In high school, I was able to have my ostomy reversed. This improved my self-esteem and I was no longer ashamed of the physical appearance of my body. I still wasn't ready to share about my day to day symptoms, particularly my GI issues caused by my rare diseases - Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome. 

High School with My Central Line

My health became unstable after my ostomy reversal resulting in frequently missed days from school
due to illness and hospitalization. I became known around my school for being sick. I had a central line for TPN for about 6 months. My central line was prominently visible as my school allowed an altered dress code for me due to regular clothing causing pain and irritation of the skin around my central line. I even unabashedly showed off my scars. However, in spite of my social acceptance, it would still take several more years before I would have the confidence to share my medical story with others.

In 2012, I found a community page on Facebook for FAP and I interacted with others through this page. The administrator reached out to me and asked me to start a blog about living with FAP. I agreed and Life's a Polyp was born. However, I still was not ready to openly share my medical story so I created Life's a Polyp anonymously. I didn't share my identity at all until a reader from Michael's Mission contacted me about how to grow the impact of Life's a Polyp. With her prompting and encouragement, I finally revealed my identity to the world. She gave me the push I needed to no longer hide in shame of my medical experiences. Over time, I became more and more willing to become an open medical book. I became more open with friends and romantic partners not only regarding my medical past but also my current health issues and symptoms.

This push is what has helped Life's a Polyp expand from a blog to a Youtube channel, a Shop, and enter the world of social media. It has allowed me to have my medical story accepted for publishing in a book and the creation of my own children's book about FAP. 

I never would have guessed as that excruciatingly shy young girl that my life would become so public medically. That I would willingly tell others the intimate details of life with FAP and Short Bowel Syndrome. I never would have expected others to be interested in what I had to say or what I experience with these diseases. The readers of Life's a Polyp continue to provide me encouragement to continue my advocacy efforts. I'm not sure when I would have found such a deeper level of self-acceptance about my health conditions and my body if it wasn't for readers such as yourself. With the expansion of social media, I have found an online home amongst others with FAP in groups across various platforms. I never dreamt such acceptance by myself nor by others to be such a possibility. 

Our words have a profound impact on others and it can mean the difference between suffering alone and enduring together. If you're struggling with self-acceptance, don't give up hope. It doesn't typically occur over night but each day can mean progress. You are worthy of self-acceptance and love. May we all strive to help one another find self-acceptance.

How Reiki Affected My Mental Health

My boyfriend, Mike, sent me to his massage therapist for a massage last year due to my stress causing shoulder and back pain. His massage therapist also does energy work, including Reiki. Out of curiosity, Mike also purchased me a Reiki session. I didn't have any knowledge or expectations about Reiki other than it was energy work with Chakras. I don't hold any beliefs toward energy work or Reiki but decided to go to the session with an open mind and figured at the very least, it would be relaxing.

Reiki is often referred to as energy healing, targeting the energy fields around the body. It was started in Japan in the late 1800's. Reiki involves transferring universal energy from the practitioner's hands to the client in order to improve the flow of energy around the body and remove energy blocks thereby allowing relaxation, speed healing, and reducing pain and other illness symptoms. 

I scheduled my Reiki session for Saturday, April 3rd in the mid-morning. Little did I know, this would be the perfect day for a Reiki session. I awoke that day early and started practicing for a speaking engagement I had next the day about my experiences with doctors dismissing my reports of pain as a child. For the last two months, I have also been writing my medical story to be published in a book and writing my own children's book about Familial Adenomatous Polyposis. I have been working on these projects related to my health and Life's a Polyp quite vigorously without allowing myself mental breaks. This particular morning, all of the reliving of my medical trauma became too much for me emotionally. I was crying and distraught this particular morning before my Reiki session. 

When I arrived for my Reiki session, I was instructed to lie on a table face up. The room was dimmed and relaxation music was playing. She wafted some scented oils into the air and over my body. She occasionally laid her hands on me, primarily my feet and shins. Throughout the session, she held her hands hovering over my body and moved them back and forth in various motions. At one time, she was moving her hands lightly over my arm and it felt as though something was being spread over my arm or stretching the skin of my arm. 

She checked the flow of my energy in each of the 7 Chakras with the use of a pendulum. She said my 6th Chakra, the Third Eye, was very strong and indicated that I am very intuitive. I noticed that the pendulum moved over this area more than it did any other area. I was unable to see her hand causing movement in the pendulum. She advised I had a block in my 3rd Chakra, the Solar Plexus. The pendulum did appear to move less over this Chakra than it did over the other six. This Chakra is in the upper abdomen and holds our self esteem and confidence. It is believed that blocks in this Chakra are often experienced through digestive issues, which embodies my diseases of Familial Adenomatous Polyposis and Short Bowel Syndrome. 

She told me that she felt I was hanging on to past regrets and not fully loving myself or allowing myself to fully feel emotions. She told me that I'm a very serious person, a teacher to others, and I don't allow myself to fully feel joy. She explained that my life's purpose is to teach and help others and particularly help others learn compassion and understanding. I agreed with this description of myself she provided.

She asked me why I limit my experiences of joy and I shared my extreme fears of losing my parents and my desire for them to outlive me. To remove this block, she instructed me to imagine a large sunflower over my abdomen and to push all the built up sludge from this area into her hands that she moved lightly over my abdomen and sides. She did this for a long period of time. I began to physically feel light and when I expressed this, she stopped. Then she told me to imagine my body suctioning a yellow, shimmering light from her hands to fill my body. After awhile, my stomach began to feel full and when I expressed this, she stopped. 

She spoke about the energy field that surrounds the body. She explained that those with amputations having not only physical phantom pain of their missing limbs but may also experience an energy phantom pain. I told her about my phantom sensations of the stoma I had on my right side for 6 years before having my ostomy reversed. She again used the pendulum and began to spin it rapidly above my body. I was instructed to imagine this vortex acting as a suction over my previous stoma site. After she did this for awhile, I noticed that I began to feel extremely relaxed. At this point, she stopped.  

The Reiki session lasted 2 hours and I found it to be extremely emotional. I cried often during the session while she told me what she sensed about me and asked me questions about my fears of outliving my parents. She told me that the work we had done during the session would help with my mental health. She also encouraged me to set aside a specific time frame a day to think about the negative, fearful thoughts I frequently have rather than thinking about them throughout the day. She suggested allowing this set time to be when I'm working on Life's a Polyp projects so that I may channel these thoughts and energy into something productive. I had no idea what to expect from this Reiki session but it was perfect timing to help me cope with my medical PTSD triggers.

I decided I would set boundaries for my negative and fearful thoughts, as she suggested, and resume daily meditation exercises. The rest of the day I remained melancholy but by the next morning, I awoke refreshed with a much happier disposition. 

Is there something to Reiki and energy work? I don't know, but I do know that I enjoyed my 1st Reiki session and I am in a much better place mentally since experiencing Reiki. Would I do it again? Sure, why not?

Vertigo and Physical Therapy

I started having chronic nausea in 2015 after my first hospitalization since 2007. My chronic nausea has persisted in spite of a mix of medications and Peppermint Oil. These treatments are helpful in managing my nausea but they do not cure it. A couple years ago, I started noticing visual triggers to my nausea and over time the number of visual triggers began to expand. Strobe lights and the movements of others or objects easily trigger my nausea. It was then that I was diagnosed with Vertigo that was worsening my nausea. I rarely felt dizzy but at times the room would spin and I felt unsafe to drive until the dizziness dissipated. A friend recommended physical therapy to me in an effort to help reduce the Vertigo and so my GI specialist sent me to a local physical therapy center.

Although the Vertigo was the primary focus of my physical therapy, my therapist also wanted to include core strength and range of motion for my neck as additional goals. My core remains weak after 7 abdominal surgeries and I have chronic neck pain with limited range of motion due to degeneration in my neck. My therapist explained that my limited movement had not only contributed to the development of Vertigo but was also worsening my symptoms.

A common cause of Vertigo is Benign Paroxysmal Positional Vertigo (BPPV) that occurs when tiny calcium particles become dislodged and enter the inner ear. My therapist explained that my limited head and neck movements were creating these particles and caused them to wrongfully enter my inner ear resulting in my dizziness and nausea. 

Not only does Vertigo cause dizziness and nausea but other symptoms may include balance issues, abnormal or jerking eye movements, headache, sweating, ringing of the ears or hearing loss.

The physical therapist completed an evaluation of my Vertigo symptoms and found that I also presented with the abnormal, jerking eye movements. The evaluation included a dizziness questionnaire and movements of my head to try to invoke nausea or dizziness. She would later use the technique to determine the presence of jerky eye movements to help determine the effectiveness of physical therapy on my Vertigo. My physical therapist also performed whole body movements on myself to help move the calcium particles in my inner ear into the correct locations. 

VOR Exercise

I completed 8 sessions of physical therapy before being released. I completed several different exercises to improve my balance which would also help reduce my Vertigo. I started with single leg stances on each leg. First, these were completed with my eyes open and then as I progressed it was changed to eyes open, moving my head in all four directions, and finally using a bosu ball. In addition to completing single leg stances on the bosu ball, I also had to turn the bosu ball upside down and complete squats on it. This was like doing squats on a see-saw. I also did an exercise called Vestibular Ocular Reflex (VOR) that is completed by keeping my eyes on a fixed object in front of my face and moving my head from left to right while maintaining my focus on the object. This exercise helps to recalibrate the eye, inner ear, and brain. The remainder of my exercises focused on core strengthening and on stretching my neck to improve my range of motion thereby reducing the development of these calcium particles and their risk of entering my inner ear.

After a month of physical therapy, my therapist felt as though I had reached the maximum level of benefit physical therapy could provide me and I should continue my exercises on my own at home indefinitely. I'm hesitant to say that my Vertigo is cured. However, I have noticed less use of my Vertigo medication and increased ability to tolerate visual triggers for longer periods after the completion of physical therapy. 

If you suffer from Vertigo, I would highly recommend requesting physical therapy as part of your treatment plan for the Vertigo.