Wednesday, April 29, 2015

Adjusting to Change

My doctor is one of my primary foundations in life. She is the only GI doctor I have ever had and she has kept me alive during the hardest times of my life. She has stood by me even in hate filled years when I blamed her and others for my health issues. She is one of my biggest advocates and always looks out for my best interest with an intense empathy and understanding of my physical and mental needs. She has maintained me as a patient for these very needs for 20 years, well past the age of a pediatric patient-doctor relationship. In her 84th year, she's begun to further prepare me for transitioning to adult care. This has been no easy feat due to my trust issues of medical providers. I understand her reasons - she's gradually preparing to retire, she has her own health to consider, and wants to ensure I'm medically taken care of and not thrown to the wolves. She has assured me she will continue to follow me and wants reports from my new adult GI doctor and will remain available to me. I was doing well with this forced separation that is beginning. So I thought.

I made another call this week to a group of GI doctors for a new patient consult. I'm lining appointments up with doctors to interview to find the right fit. As I was speaking to intake and was asked what I'd like the scheduler and doctors to know prior to my appointment as well as what kind of doctor I'd like the anxiety and fear began to flood over me, my voice became shaky, and my eyes wanted to tear. I want a doctor like my doctor. A knowledgeable, empathetic, trustworthy doctor who understands my limits and won't push me over the edge. A doctor who doesn't brush me off and tell me I'm "just whiny" like the doctors and hospital staff did when I was a child. I want to be believed and trusted about my physical and mental needs and limits. I don't want to be sent to multiple doctors.
I want my doctor.

Like with any transformative experience, chronic illness changes and shapes us. One way this occurs is our outlooks on life. Some are very cautious while others become risk takers. I believe though in both types, none of us like change. Even a risk taker wants to continue the ability to take risks in spite of the consequences, there isn't an expectation for change.
I am the more cautious type. Change has never been easy for me regardless what the change was. I like my routines, I like to know what to expect. Change is scary for me. Bad things can happen when there is change.
"THE SECRET OF CHANGE IS TO FOCUS ALL OF YOUR ENERGY, NOT ON FIGHTING THE OLD, BUT BUILDING THE NEW." - Socrates
My life was smooth until my first surgery when everything changed from what I had known. My body changed repeatedly within 1 year and so did the expectations as each surgery changed the plan. Originally, I was to have a temporary ileostomy ending with a jpouch. Due to complications from my intestine wrapping around itself and other organs, delayed response by the surgeon and emergency room staff, a portion of my small intestine died including the formed jpouch that awaited my ileostomy to be taken down. Next a straight pull thru was attempted but too much had been removed and a straight pull thru was deemed impossible. Finally, I was left with a "permanent" ileostomy until 6 years later when a straight pull thru was attempted and achieved by a different surgeon. In high school with my second round of surgeries, I once again didn't know what to expect as my health became a roller coaster of instability. That roller coaster gradually leveled out to rolling hills compared to the peaks and valleys previously experienced.

When you're on a never ending roller coaster of instability you remain at a high level of readiness and alertness, maintaining a level of preparedness for the next worse thing to happen. It's exhausting to remain on alert with your adrenaline pulsing at high speed. Such a high level adrenaline for an extended period leaves you longing for the mundane with your health. I lived like this for years: never knowing if I'd live to the next day, when the next hospitalization would be, if I'd be able to complete all of my school work and pass that semester, make it through a work day. Since the roller coaster has slowed I've become accustomed to the predictability of more stable health. I know what my day is likely to consist of and there is predictability even with my flare ups. I know what I can do to reduce flare up triggers, what most helps ease the flare up, and when the flare up will likely end. I can prepare myself and make it to the other side.

There's a comforting sense of security in predictability and routines. For me, it's like a security blanket wrapped tightly 'round, hugging and holding me in the arms of safety. This need for security expands beyond my health to my home and family life, friends, and work. The stress of drama and the unknown are too demanding on my psyche and can lead to negative health effects. Being a Type A Personality, I require goal setting with extensive step by step planning for how I'm going to move from point A to point Z in life. Without this extensive plan, I feel lost in the world. As long as I can readjust my plan I can find my footing once again but if I have a difficult time establishing that new plan, it's a major upset to my mind. Not knowing what to expect is also distressing even in the most insignificant situations. This seems to be common among Highly Sensitive Persons. The unknown is overwhelming and uncomfortable for me. Once I become familiar with the individual, setting, or situation I am able to relax more and find my way. But it's that initial plunge that is highly stressful. And so I don't like those changes either. I become comfortable within my work and social groups, enjoying the warmth and security of the familiar. Changing such environments require me to let myself let go of comfort and plunge into the unfamiliar. This is not always an easy feat.

"IT TAKES A LOT OF COURAGE TO RELEASE THE FAMILIAR AND SEEMINGLY SECURE, TO EMBRACE THE NEW. BUT THERE IS NO REAL SECURITY IN WHAT IS NO LONGER MEANINGFUL. THERE IS MORE SECURITY IN THE ADVENTUROUS AND EXCITING, FOR IN MOVEMENT THERE IS LIFE, AND IN CHANGE THERE IS POWER." - Alan Cohen

And yet, regardless of the reasons for resistance and dislike for change it is a requirement of life and we must find ways to adjust to the changes we face. We all tackle change differently and through trial and error will find what works best for us. I've found these techniques to be particularly helpful during a change process. Depending on the size and challenge of the change, these techniques may require prolonged use or may be accomplished in a seemingly quick fashion.
  • Changing the thought, feeling, behavior cycle. There is a connection between our thoughts, feelings, and behavior. We change one and we change them all. It can be a vicious cycle of negativity or it can be a healthy cycle of positivity.
    • Thought: I'll never find another doctor I'll trust or like
    • Feeling: Hopeless and Scared
    • Behavior: Discontinue medical services, guarded or defiant attitude with new doctors, depression, delayed action to find a new doctor, etc.
Change the cycle to:
    •  New Thought: I'll find a doctor I like and trust, it just may take some time to find the right fit
    • New Feeling: Hopeful and Determined
    • New Behavior: Continued pursuit of a doctor for the right fit, openness with new doctors
  • Reframing. We have negative thoughts all the time even without realizing we're having them. They're often those fast, immediate thoughts we have that fleet in and out of our minds. These thoughts feed into the thought, feeling, behavior cycle. We can help stop the cycle with recognizing and altering our negative thoughts. This reframing also helps us remember what is possible, our strengths, and gives hope. I like to make "coping cards" and list positive thought reminders, coping techniques, and helpful tips as a visual and tangible reminder.
    • This doctor won't be anything like my doctor ---> I'm going to give this doctor a chance and if I don't feel comfortable I can try another doctor.
    • I hate finding a new doctor ---> It can be difficult to find the right fit but I will, there are a lot of good doctors around
    • I can't do this ---> I'm stronger than my fears and anxieties. This is just one more challenge and I will conquer it
  •  Goal Setting. Any change in behavior typically requires some goal setting, even if we do this automatically without thought. It's easier to tackle change by breaking it down into manageable, realistic steps. This keeps our motivation going and reduced the feeling of being overwhelmed.
  • Relax. Keep your frustration to a minimum to prevent burn out during the change process. Maintaining motivation will keep us moving forward to the other side. Relaxation helps keep the frustration reduced and motivation high. Find what works best for you: hobbies, relaxation techniques, socialization, etc.
  • Re-evaluate. When you feel like you're hitting a wall or spinning your wheels, take a moment to breathe and re-evaluate the situation. What is working and what isn't working? Do your goals need to be changed, do you need to readjust your attitude and mindset, is there a better way to tackle this change?
  • Support. A support partner during a difficult period of change can make a huge difference in your moral and navigation through the change. Talk about your fears and your challenges rather than bottling them up. Seek your support partner's opinion, set goals with your partner and let your partner hold you accountable to your goals.
  • Allow Change to be an Opportunity. Good things can come from change even if it's scary at first. Without change we can't grow as individuals. New jobs challenge our skill sets, broaden our horizons, may alter our economic development. Meeting new people exposes us to new ideas, information, and cultures, allowing us to learn from others and grow our networks. Moving residences lets us experience another area with its own unique community. Challenges and changes add to our strengths and our accomplishments as we progress through the process.




Thursday, April 16, 2015

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.

Wednesday, April 8, 2015

Navigating the Road of FAP

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.

Thursday, April 2, 2015

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 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