The Intimacy of Disclosure

Today is my 4th wedding anniversary, a place and time I didn't think I would experience. As a child and teenager with an ostomy and chronic illness that embodies the "embarrassing type" of bathroom issues, I had a difficult time with self-acceptance and disclosure with others. I didn't love myself and I couldn't understand how anyone else would not only be able to love me but also support and help me unconditionally throughout my medical issues. As an adult, I see things very differently now. I have told more individuals in the last decade my story or my diagnosis and issues than I ever have previously in my life. I am better prepared to unashamedly live with an ostomy now than when I had an ostomy.

For the majority of my life I have feared rejection from others in regards to my health and at times I still struggle with this. Yet every person I have disclosed my health issues to has not cared and wished I had disclosed earlier. I remain reserved in my selection of whom to disclose my health details to as not everyone needs to know and it can be a difficult subject to breach without the proper context.

Each person handles disclosure differently. Determining what exactly you want to disclose and to whom is key. Individuals in the health groups are frequently asking about this - what do I tell, when do I tell, and whom do I tell. The answer won't be the same for every person or every situation. You must feel comfortable with your disclosure. Trust your instincts about those around you.  If you feel uncomfortable, then perhaps it isn't the right time and another time would be better for you.  I've known individuals who made public announcements to their classes and others who didn't tell anyone. Please do not let anyone try to make you feel pressured to disclose. This is your body, your health and you have every right not to disclose to someone until you are ready.

I don't recall disclosing my ostomy to others while I had an ostomy but rather afterwards, although I can't be certain of this. My method of selection was to only tell those I was very close to and to use educational segments from the videos of the Youth Rally's I attended. I would show my friends segments that showed and explained what an ostomy was and I followed this with questions to determine their reactions to an ostomy. If they reacted in an accepting manner I told them that I previously had an ostomy and shared some of my story. In romantic relationships, I never disclosed early on in the relationship and in fact, the majority of my boyfriends didn't know any details beyond I had surgery due to colon cancer. I chose to disclose to my husband after a tearful misunderstanding. I thought he was making fun of bowel issues such as diarrhea and incontinence. The correction of this misunderstanding allowed for the door to be easily opened to disclosure of my own health issues. Presently, if the context seems appropriate I simply just disclose whatever amount of information I feel comfortable disclosing with that person at that time. I've also discovered that simply answering that I have Short Bowel Syndrome is very effective in conveying information without spelling out the details that can be uncomfortable to explicitly discuss such as chronic diarrhea.

Finding someone you can be yourself with, completely comfortable and open happens in various types of relationships. For years I thought I wouldn't find such relationships - platonic or romantic. I let my fear stop me from reaching these levels of intimacy in my relationships. I experienced an incredible freeing once I allowed myself to be vulnerable enough to be completely honest about all the details of my health and allowed myself to be loved without fear and questioning the other person. The more a person can understand the more that person is able to support you. Acceptance comes in different forms whether it's full knowledge with explicit detail or implied knowledge.

Navigating the Road of FAP: Jamie's Story

This is a guest post by Jamie Klapper

Familial Adenomatous Polyposis (FAP) has been a major impact on my life from the time I was very little. My mother and grandmother both had this condition as well as me. From the time I was little, I remember my mother going to doctors and having a lot of procedures. The turning point that FAP became the most evident is when my mother had her whipple procedure due to duodenal cancer and almost died from the complications. I was 9 and I spent a month of my life watching her struggle to live. She developed Adult Respiratory Distress Syndrome, fluid built up in the air sacs in her lungs reducing the amount of oxygen in her bloodstream, and was placed in a medicated coma, she stayed in the ICU unit for three weeks. I wasn't allowed to visit her during this time and my mother's cancer diagnosis was not fully disclosed to the family until later in the cancer's progression. Due to the risk of losing my mother and the prolonged separation from her, I experienced severe separation anxiety upon her return home from the hospital. My mother underwent chemo for the duodenal cancer and survived.



Jamie sporting her FAP Awareness Shirt
and I Am Strong Socks

During high school, I was officially diagnosed with FAP via blood test. The one thing I remember was the doctor asking me if I understood what he was saying, my first thought was "Yes I do, I'm not stupid". During high school, my diagnosis was kept a secret from everyone to honor my father's wishes. My father is a very private person and he felt this was a family issue that was not for everyone else to know. For the first few years after diagnosis, only a few very close family friends knew. Due to the privacy of it, I always felt that it was like I did something bad. I decided when I went to college things were going to change and FAP was not going to be such a hush-hush topic. I realized I had not done anything bad and FAP was just a part of me. I wanted to be able to have support and knowledge with the FAP, I didn't want to have to sneak around anymore. It had become difficult to come up with excuses for missing school for procedures, particularly colonoscopies due to the extra time needed for a prep day. Freshman year of college I became more open, explaining that I had a genetic disease and what FAP did and how it affected me. It felt so great to have this in the open and no more hushing around. I finally had friends who I could talk to and who could understand my struggle. I would need this support more than ever as it was during this year that my mother's cancer returned in her stomach and she was undergoing surgery to remove her stomach when liver cancer was discovered and the surgery was halted. She underwent chemotherapy a second time but did not survive the cancer this time. One of my hardest struggles has been losing my mother and grandmother to FAP, they were both very strong women who meant a lot to me. I now realized I was fighting a monster. I felt defeated without her and since her passing I've experienced a number of my own health struggles.

In 2006, I had a total colectomy with reconnection. The change from pre and post surgery has been a lot to adjust to. Right after the surgery I had every infection you could think of and I spent several days in the hospital. I returned to college going to the restroom up to a dozen times a day. I student taught and graduated from college. Since that time I've developed growths on my liver requiring close monitoring, liver embolization therapy to reduce or block the blood flow to cancer cells in the liver, intestinal obstructions, and severe chronic abdominal pain. FAP has greatly impacted my life and primarily so by taking away a normal life for me. It has been difficult that at the age of 24 I had to stop working due to the severity of chronic pain and the complications I've experienced, including frequent bowel movements requiring immediate restroom access or risk accidents. I now spend my days in doctor offices and taking medications to manage my health. I watch my friends having fun and starting families and this will never be my reality. Friends and family tell me how strong I am but I feel like I'm fighting everyday just to make it through. I mourn the life I thought I would have.

In spite of the struggles I've discovered a number of ways to help cope and live with FAP and the complications. Support in person and online have been very beneficial. I have regular counseling sessions with a social worker and enjoy various online support groups for FAP and chronic pain through Facebook. Most importantly, being open with others about my experiences rather than bottling up my experiences and feelings has made a difference in addition to raising awareness of FAP so that others down the road might have a less difficult time.

Jamie Klapper is an active member of FAP and Chronic Pain Facebook Support Groups. Like many of those with Familial Adenomatous Polyposis, Jamie witnessed the effects of FAP on her family prior to having her own experiences. Navigating through the terrain of FAP on the body and mind is never an easy task. Jamie discovered the importance of social support throughout the journey and the difference it makes for one's survival.

Short Bowel and FAP

It's common for those of us without our full intestines to share the diagnosis of Short Bowel Syndrome (SBS) in addition to the original reason for our reduced length in intestines. I didn't think much of it when I scanned rare disease lists and saw SBS listed; I didn't grasp SBS as a disease or condition. I've lived with SBS so long that it had become to mean just a side effect of my surgeries. The more I read the more I began to realize SBS is not just a side effect, it is its own disease and requires its own treatments beyond supplements for vitamin and mineral deficiencies. It's a simple yet complicated result too many of us experience from our surgeries.

"Being aware, constantly, that dry chicken, steak or ribs will likely cause an intestinal blockage as well as vegetables such as green beans is only one of the checklist items I need to take care of. A daily dose of extra iron and vitamin D in addition to a daily regimen of prescription drugs must be scheduled along with adequate time for the extra restroom visits as I plan my activities. The constant pressure is like an irritating buzzing mosquito that you can't possibly get rid of and that routinely settles in for a more thorough attack; intestinal blockages, ER visits, hospitalizations, outpatient procedures, regular checkups, and the list goes on. No wonder my family accuses me of having a temper, I do have issues that cause an everlasting amount of psychological pressure. Part of this pressure is the fact my daughter also faces a daily life filled with chronic pain and health issues associated with her own short bowel." - Living with short bowel as described by my mother.

Previously I discussed my perceptions of my health issues as separate from FAP. FAP itself is the original source of my health issues as without FAP I wouldn't have these issues. Yet these issues aren't symptoms of FAP. They're symptoms of the SBS, a completely separate diagnosis. My understanding of SBS expanded from a simple result that increases difficulty absorbing nutrients and causes diarrhea that may require medication to a revelation that connected all the dots of various bits of information to create a large net capturing multiple issues and symptoms. This validated what I already knew but hadn't fully realized. In addition, I have learned new aspects of SBS that I never knew or wouldn't have connected with SBS. For example, edema of the legs and feet may occur as a result of malnourishment from SBS.

Prior to this I simply explained away bothersome symptoms as my body having a sensitivity to food. I now understand that the bloating and cramping pain I experience whenever I eat is actually the SBS. The 5 years of struggles with excessive malabsorption and inability for any medications to control stools wasn't just my body recovering from surgery. It was my SBS and a new period of intestinal adaptation that was brought on by my second round of surgeries in high school. After my first round of surgeries in grade school, I was left with an ileostomy and the SBS wasn't as apparent as it has been with my straight pull thru. With my ileostomy, I remained malnourished until I was placed on a weight gaining diet the following year and I maintained appropriate electrolyte levels and weight until my next set of surgeries in high school. I attribute the differences in my ability to maintain electrolytes to the position of my intestine. With an ileostomy, there is more folding or kinks in the intestine as it is moved to exit the abdomen. However, with a straight pull thru the intestine is stretched into straighter positions for reconnection to the rectum. My SBS has been present since my first round of surgeries but the symptoms of SBS weren't as visible or severe until the straight pull thru was performed. One nice side effect though is I will never have to limit my sodium intake!




My Central Line for TPN

My mother's description captures the daily struggles of short bowel perfectly. My mother and I have mild cases of short bowel compared to others who require more drastic measures of treatment to manage SBS symptoms and obtain nutrients. I briefly required TPN or Parenteral Nutrition for about 6 months in high school due to uncontrolled SBS that led to an ulcer at the area of reconnection. This ulcer led to a hole in my intestine. This experience provided a deep appreciation for anyone requiring ongoing artificial nutrition treatment as this was a major inconvenience, uncomfortable and at times painful ordeal. My catheter site hurt and was tender; I was unable to wear regular shirts as the fabric irritated my catheter site. However, this allowed me to the be only student in high school allowed to wear spaghetti strap shirts at school. Ha. The slightest amount of pressure on the site was painful; riding in a car was an inconvenience as the seatbelt placed too much pressure on the site. The catheter at times would pull against my stitches causing pain and at the end of 6 months, I had only one stitch remaining holding my catheter in my body. I'll just say, that created a constant level of pain I would be happy to never experience again. I required IV antibiotics for an infection obtained through the catheter. I couldn't take a shower and washing my hair over the sink or tub was painful and worrisome due to the risk of infection from any water exposure. It was tiresome for others to point, stare, and ask questions about the catheter dangling from my chest. To make light of the situation though, I came to call the catheter my jewelry.

Regardless of the level of severity one experiences, SBS deserves our attention and care to properly maintain our health the best we can. It is difficult at times but it is manageable. Sometimes all we need is time for symptoms to improve; time for our bodies to heal and adjust to a new norm.





NORD is a wonderful resource for information on more than 1,200 rare diseases. NORD offers a full report on SBS. For additional information and resources specifically for SBS visit Short Bowel Support

A Mission for Early Cancer Detection: Daniel's Story

This is a guest post by Daniel Shockley

My name is Daniel Shockley, I reside in Hawaii and retired at age 43 from the Navy in 2003 after serving 22-years on active duty. My last three years were spent while deployed to Middle East in direct support of OPERATION ENDURING and IRAQI FREEDOM. Fast forward to May 2012, I underwent my first colonoscopy that was scheduled at age 51. The procedure was performed by Dr. Fernando Ona of the GI Clinic at Spark M. Matsunaga Veterans Affairs Medical Center, Hawaii. Approximately 100 polyps were discovered throughout my colon, rectum, and anus. A large mass was found in my ascending colon causing an 80% blockage. Based on these findings I was immediately referred to Susan Donlon, Certified Genetic Counselor, Tripler Army Medical Center (TAMC), Hawaii.  It was suspected I may have a gene mutation which can be confirmed by DNA testing.  The DNA samples were gathered and sent to a molecular oncology laboratory in California.  Approximately three weeks later the results arrived and revealed the rare gene mutation, Adenomatous Polyposis Coli (APC), which is an inherited disorder best characterized by the development of a myriad of polyps in the colon. These findings confirmed the diagnosis of Attenuated Familial Adenomatous Polyposis (AFAP), which is a variant of Familial Adenomatous Polyposis (FAP) that can best be characterized by fewer colorectal polyps (commonly 10 – 100), later age of onset of polyps (mean age of polyp diagnosis, 44 years), and cancer (mean age, 56 years).



Daniel and Dr. Henry Lynch

It should be noted, Dr. Henry T. Lynch, Creighton’s Hereditary Cancer Center, Department of Preventive Medicine, is credited with the discovery of AFAP. Additionally, Dr. Lynch is one of the founding fathers of genetic research. There are currently no statistics on AFAP. However, it is estimated that <0.03% of the global population have this condition.

Upon receiving the diagnosis of AFAP, Lt. Col. Ronald Gagliano, Chief, Colon and Rectal Surgery and Director, Surgical Research, TAMC along with Susan Donlon, informed me surgery was inevitable, as there is no cure for AFAP.  It must be noted leading up to the confirmation of AFAP and prior to the colonoscopy, I considered myself to be in good health with no indications of any problems with my colon.  Furthermore, there is no known family history of colon problems. Dr. Gagliano and Susan Donlon encouraged me to read about my condition, the type of surgery required, and life after surgery. This is when my personal research journey commenced.  My focus from the onset was to embrace this condition.  My quest was to better understand this disease and what impact it will have on my life. Dr. Gagliano recommended, based on the DNA test results, that in the best practice of medicine colon surgery is needed.  I concurred and the surgery, known as a total-proctocolectomy with ileostomy, was scheduled at TAMC.

 The surgery was successfully performed at TAMC in July, 2012.  The rectum, anus, and entire colon were removed. A large mass in the ascending colon turned out to be an 8cm tumor. The pathology report revealed the mass was a tumor and was listed as high grade dysplasia.  As a result of my surgery I have an ostomy which is a prosthetic device that collects my waste. I have adapted to this lifesaving and life changing surgery. To date, I continue reaching out to numerous organizations, both local and abroad, in an effort of sharing my experience. My mindset has been, and continues to be: I tend not to think about things I am unable to control. Medical issues I am unable to control. What I can control is my attitude and after 5 decades on God's green earth my positive attitude has brought me this far, why change now! Furthermore, I can attest that worrying is not the cause of my condition. Therefore, worrying will not make it go away. Based on my personal research of this disease, I am able to better understand my condition, overcome adversity, adapt to my new lifestyle, and persevere with my life. .

 On a personal note, I consider having AFAP as a challenge rather than an obstacle.  I continue to press on with my life with business as usual approach.  As a result I have adopted four (4) words to reflect on as part of my new journey in life as an ostomate and advocate for colorectal cancer awareness focusing on the importance of early detection:

• Attitude = 100% (The English language contains 26 letters. If the letter "A" represents 1 and the letter "Z" represents 26 take the letters of ATTITUDE and add them up. ATTITUDE = 100) It is important to note that the word ATTITUDE is the only word in the English dictionary that equals 100.

  Having a positive attitude attributed to my successful recovery.  As a result my transition to this new style as an ostomate was with minimal difficulty. Furthermore, I believe attitude is permanent and mood is temporary. It is possible to have a positive attitude and be in a bad mood.  However, by maintaining a positive attitude it will have a direct impact on your mood and the outcome of your life. Do not let a bad mood affect your attitude.  I remind myself of this daily and try to remain positive while pressing on with my life.  

• Faith:  Firm Assurance Influenced Through Hope (An acronym I created on my observation of the word faith)

  My analogy of the word FAITH:  Having the ability of believing in something you are unable to see, but you know it is there. Example: You cannot see the prevailing trade winds; however, you can see what affect they have by the swaying of the palm trees.  My positive attitude had a direct impact on my FAITH which allowed me to have a significantly better chance of overcoming adversity.

• Adapt:  Attitude Determines the Ability for a Positive Transition (An acronym I created on life as an ostomate)

  My analogy of the word ADAPT:  After undergoing total-proctocolectomy with ileostomy surgery I had to adjust to this new lifestyle without a colon.  An ileostomy can be best described as a stoma.  This is a surgical opening constructed by bringing the end of the small intestine out onto the surface of the skin on the lower right abdominal area.  The intestinal waste passes through the ileostomy and is collected in a prosthetic pouching system which is adhered to the skin over the stoma.  The pouching system requires changing every 3 – 4 days.  Having an ileostomy is a transition to a life changing experience. 

  It is evident my positive attitude directly influenced my faith which directly aided with my ability to adapt to lifestyle as an ostomate. From the onset I embraced being an ostomate as a challenge rather than an obstacle or disappointment.





 Honolulu Managing Director Ceremony Proclaiming
March 2015 as Colorectal Cancer Awareness Month

• Passion:  My positive attitude along with my strong faith directly impacted my ability to adapt to this new lifestyle with an ileostomy.  As a result I have a yearning to share my story, the importance of colorectal cancer awareness, early detection and AFAP.  This in hopes it will be a source of encouragement and inspiration for the masses. Additionally, on behalf of the Fight Colorectal Cancer and Colon Cancer Alliance I have been asked to represent both organizations in Hawaii and request Hawaii Governor David Ige and Honolulu Mayor Kirk Caldwell to proclaim March 2015 National Colorectal Cancer Awareness month in Hawaii and Honolulu respectively.  



Governor Ige Proclamation of March 2015 as
 Colorectal Cancer Awareness Month

Proclamation ceremonies were conducted in the Mayor’s conference room (above), Wednesday, February 25 and in the State Capital Ceremonial Room (right), Friday, March 13, 2015. It should be noted, these are the first ceremonies of their kind for this campaign.

Together we can make a difference on sharing the importance colorectal cancer awareness and early detection.

Daniel Shockley was diagnosed with Attenuated Familial Adenomatous Polyposis (AFAP), a subtype of Familial Adenomatous Polyposis. Since diagnosis, surgery to remove a pre-cancerous tumor and create an ileostomy, Daniel has made it his mission to spread awareness about colorectal cancer and the importance of early detection. In addition to public speaking, Daniel also uses his experiences to advocate for legislation in support of colorectal cancer detection and treatment programs. All of Daniel's efforts can be followed through The FAP Gene Support Organization, based in England. 

Learn the differences between FAP and AFAP.

Stress and Chronic Illness

This Post includes Sponsored Link

Stress is a powerful energy that can help and harm us. Stress can serve to motivate us to take action and complete tasks but it also can place great pressure on our mind and body with negative consequences. Stress affects every part of our body and often triggers or exacerbates symptoms and diseases. Find a full description of the effects of stress on the body here.

With small amounts of stress, I notice the inconvenient, annoying symptoms of muscle tension, irritability, anxiety, and difficulty sleeping. However, when I have intense stress the symptoms worsen and in addition I experience increased degenerative joint pain, sadness, often have crying spells, and my SBS symptoms worsen. The combination of inadequate sleep and stress sends my SBS symptoms into hyper drive. I'm unable to tolerate foods, even liquids, and any movement becomes unbearable. Ingestion increases the amount of waste produced to be expelled at a rapid rate and movement further increases the frequency of those restroom trips. The ongoing barrage of this cycle results in pain and soreness that spreads to my entire body. Sitting and lying down are even difficult as my body struggles to slow down the SBS.
From the onset of this cycle, I know my stress is out of control and I'm walking a thin line; I need to check my stress immediately.

We all experience and manage stress differently. I'm very Type A Personality, I'm a planner and a problem solver. For me, I have to tackle the problem and find a resolution. However, once I've hit the boiling point the first thing I must do is cease ingestion and find time and space away from everything - work and activity - so that I may allow my body to begin to relax. Once I secure this, I can begin resolving the source of stress. Identifying and establishing a game plan is a must for me followed by expressing my feelings through verbal or written word and utilizing a sounding board.

There are many options available though to help manage day-to-day and chronic stress to protect our bodies and prevent reaching the boiling point. Consider the following in your own regiment for stress management:

• Stress Management Diet - food plays a vital role in our health and eating foods rich in vitamins and minerals that promote healthy brain chemicals can help lower stress hormones. Participating in cooking classes can provide an additional benefit for learning new ways to create healthy and tasty meals incorporating such ingredients. Cooking classes may even double as a stress relieving activity. Communities often have various cooking classes available, such as the one offered by Chef Alex Friedman Master Class.
• Meditations - the different types of meditations are endless. Yoga, Tai Chi, Pilates, and Qigong are great individual or group exercises that include meditation. Guided meditations are also incredibly useful and can be learned to be used on your own in any situation.
• Breathing - although breathing is used in meditation, there are different exercises for focused breathing that are very helpful.
• Sleep Well - getting adequate and restful sleep is a key factor to protecting one's physical and mental health. This can be quite challenging when we are feeling stressed or anxious.
• Activity - engaging in activities of enjoyment, socialization, relaxation, distraction, and exercise all serve to reduce anxiety and stress. Get back to a hobby or try a new one out, spend time with a loved one, pamper yourself with a massage, hot bath, skin detox, watching a sunset, music or books, and get some physical activity. 
• Support - we can't go about life on our own. We all need someone to lean on for support. Utilize that person(s), that's what friends and family are for - to help one another. Reach out and find more individuals to add to your support system.
• Take Time For You - everyone needs downtime to relax. Sometimes it's hard to make time for this, but it is important. This time allows for decompression and recharging - both needed for tackling the next task you have.