What If? Every Day Decisions

We all know just how unpredictable the symptoms of digestive motility can be. It's a moment to moment thing. In one moment, we may have a brief burst of energy. In one moment the digestive symptoms may be tolerable or may be what we have grown accustomed to in our daily lives with these disorders. How we feel governs much of what we are able to do, are determined to do, or are willing to commit to ... but then again, it's so unpredictable.

Do I go out shopping? Do I go visiting? Do I have company come over? Do I go to work? Do I go to school? Do I take my own car? Do I go on a trip? Do I go out to a restaurant? Do I call the doctor? Do I go to church? Do I call a friend? These are just some of the daily decisions that motility sufferers have to make each day?

Part of the mind process that calculates weighing the risk of each decision involves the following: What if I am out and I have to rush to a bathroom? What if there is no bathroom accessible? If it is a public bathroom, it will be embarrassing if I have diarrhea and between the odor and the sounds of gas expelling from my bowel movement, it will be humiliating. What if I vomit in public? How will I deal with the embarrassment? What about cleaning up the vomit that gets all over my clothes, shoes, floor, table, car, etc.? What if I have something to eat or drink and I begin to choke because of esophageal motility problems? What if I get sudden excruciating pain and I am in a public setting? What if I am in a restaurant and there is nothing on the menu that I am able to eat? What if I am on a plane and my symptoms become exacerbated? What if I am on a boat, away from home, at work, in school? What if I don't have the energy?

Sometimes, by choosing to take a risk, we become disappointed with ourselves for not being able to meet our expectations. Other times, people can disappoint us because of their reactions and insensitivity to our health situation. It is not an easy road.

Fears and embarrassment can often result in isolation and loneliness in patients. Instead of going out, they would rather stay in the comfort of their home. But the social aspect in a patient's life is extremely important and without it, there is a greater risk of depression, self-absorption, and more focus on symptoms and inabilities versus abilities.

Personally, I have always been a risk taker who thinks things through before taking the plunge. During our recent three-day AGMD Digestive Motility Symposium, when my health was pushed to its limit by all the preparation involved, my symptoms were intense during the entire program. Questions kept echoing in my mind? What if I can't talk because my voice is in spasm? I need a contingency plan so I ask members of my family to be on alert with the prospect of taking over in the event that I am unable. During the program, I got intense noncardiac chest pain throughout one entire day. My husband was on guard as he saw me open my case to take out the pills that I needed. The nausea was so intense that I thought I was going to vomit at the table. My belly was distended to such a large degree, that I had to wear a suit with a long jacket to camouflage the unbuttoned, unzipped waistline. I had such grave malaise and fatigue that it took every ounce of energy I had just to sit on a chair. The good part was that the event took place in a hotel so I was able to periodically go to one of the rooms to use the bathroom, sit down for a few minutes, and take a few private moments before once again entering into the public domain. The other good part was that I knew should I have an emergency, I had some of the best gastroenterologists in attendance who I am sure would be able to assist me. But even so, the risks and decisions from the littlest to the biggest all were made on the basis of my health ... how much I was willing to push ... to accept ... to deal with ... and to endure.

After the symposium, my health totally crashed. Every symptom has intensified to a new and heightened degree. New symptoms have emerged. Life has become even more challenging. Perhaps it's just a coincidence and it would have happened now any way, but I may never know ... it's the unpredictable nature of digestive motility. The important thing is that I took the risk knowingly and carefully thought out. And with tremendous faith and the inspiration of all those who suffer from digestive motility diseases and disorders, many of the risks that I am willing to take outweigh the potential consequences.

Just recently, I heard from a member of AGMD who had many concerns about traveling out of state to see her family. How would she do on the plane? What about eating? She brought her own food, but still, there were concerns about how others would perceive this. Away from home, she had fears as to what if her symptoms became exacerbated? The visit ended up being a success and "uneventful." Another victory! A risk taken and overcome.

Being in the comfort of one's home, patients can often find some solace. There is routine, there is familiarity, and there is no embarrassment. There are still decisions to be made and risks that must be evaluated, but somehow, many of these can become less daunting when one is in his/her own familiar setting. As the song goes, "Be it ever so humble, there is no place like home."

"But You Look So Good" ... Mixed Signals

How many of us have been told that "we look so good" as we struggle in public with the daily symptoms of digestive motility disease? I posed this question at one of our recent monthly Massachusetts AGMD Digestive Motility Educational/Support Group Meetings. Everyone in attendance responded by raising their hands, nodding their heads and reacting knowingly with their eyes. Ironically, people tend to say this when you are having one of those days when the struggle with your illness is more intense. So many patients have told me how much words like that anger, frustrate, and hurt them because what they are physically and emotionally going through on a daily basis is not recognized by others.

I have thought about this for quite some time over the years ... why do people feel compelled to give a testament as to how one looks when they know that someone is dealing with a chronic "invisible" illness? Is it because they find that this is complimentary and it will make someone feel better? Are they just vocalizing out loud what they are thinking? I'm not sure I have the answer after all these years. It's not as if they are complimenting you on as to the shoes you have on, or the outfit you are wearing or your hairstyle or glasses ... no, it's about your face, your weight, and many other assessments that register in people's minds upon seeing someone.

When I first became ill and my weight plummeted to 69 pounds, people looked at me with pity, fear, and with an uncomfortable glance. It was assumed by many that I was suffering from anorexia nervosa. I was judged by my appearance even though I desperately wanted to eat and my mind was in a state of anguish over a battle between wanting to eat, trying to eat, and excruciating and debilating symptoms resulting. I was judged, as many are, not only by those in the medical community, but by co-workers, friends, and even some relatives.

I can recall during one of my hospitalizations at this time, when every morning a nurse would wheel in the scale and have me step upon the base. I was praised if I gained a pound and reprimanded if I lost one. All of my other symptoms did not even seem to be considered as I was judged solely on my weight … how I looked. Later, when I gained weight as a result of hypothyroidism, I was assessed again and people thought that I must be feeling much better and I was over any eating difficulties that they assumed I had.

How can you barely consume any food or calories and still gain weight with many of these digestive motility diseases and disorders? This question seems to even baffle many of the medical experts.

Throughout the years, my weight has yo-yo-ed between pounds lost, pounds gained and weight stabilized. I have experienced the reactions of all perspectives from all types of people both medical professionals as well as lay people, and to this day, I am still judged by how I look. So many digestive motility patients have vented their frustrations to me regarding their weight, how they look, and the public’s reaction. It can be extremely frustrating.

To complicate the matter, however, is the fact that many of us do not reveal in public the intensity of our suffering. I am guilty of living somewhat of a private life. My public persona is such that I am always smiling, always happy and pleasant, and always camouflaging the realities of my diseases. When I visit doctors, I am typically stoic, strong, and smiling. When I am at home, however, the mask is lost in my private world of debilitating and anguishing symptoms. Although I still try to smile reassuringly at my husband, we both know that behind the smile my body is continuing to decieve me with the presence of a myriad of intense and severe symptoms that now have become such a familiar part of our lives.

Many women will wear make-up, get their hair done, and wear nice clothes just so that they will feel better about themselves, but again, much of the public views this as a sign that they are not very ill. One word or one judgemental look, can often times send someone into the depths of depression, frustration, anger, bitterness, and/or saddness.

So how can others understand when so many of us tend to hide our symptoms in public? How can others understand when we tell them what we go through, and yet, by looking at us, they would never know? This is one of the challenges that goes along with living with an “invisible” illness. Be reassured that although many people with digestive motility diseases and disorders are severely compromised by low weight, there are others who are of normal weight, a little over weight, and even obese.

I’m not sure I have an answer to the questions that I posed. I have, however, had well over 30 years of dealing with my illness to learn how to cope, adjust, and react to such statements and judgments. Perhaps it's because my illnesses have a name ... a definitive diagnosis ... that I am able to let such commentary not get to me anymore. Or perhaps it is because I am now a veteran with a history of many battles and scars from the world of digestive motility disease.

I typically use humor or deflect the focus off of me and onto them when such comments are made. In most cases, people do not mean any harm by telling you that you do look good. The frustration and anger that I once used to feel has softened through the course of these years and so I gracefully reply, “thanks, you do too!” For I am far too busy trying to survive as I continue to hold on by a thread. And I am also, far too busy counting all my blessings to be distracted by comments and judgements by people who just don't understand.

I welcome your comments and experiences on this subject.

Thirty Years Living With Digestive Motility Disease

This month marks the 30th anniversary of when chronic idiopathic intestinal pseudo-obstruction (CIIP) or (CIP) invaded my life. It is nothing short of a miracle that I have lived all these years by defying all odds and living far beyond what the medical experts had predicted. I am truly blessed. Some would say that I am an enigma.

It is difficult looking back at my life … not the life before my illness, because I have wonderful memories that I treasure during my pre-illness years … but rather when my life changed because of CIIP.

I’m sure so many others have followed a similar journey into the world of digestive motility disease. Perhaps, like me, it took you many years and numerous physicians before finally obtaining a diagnosis. Perhaps you too were not believed … were misdiagnosed and told that you had either a spastic colon, were merely suffering from stress, that your symptoms were all in your head, that you had anorexia nervosa, or that you wanted attention. Perhaps you too felt the pain of loneliness and hollowness as you sat in the bathroom for hours, had unrelenting nausea and vomiting, had excruciating pain, had your belly swell, had difficulty eating, and had nowhere to turn for relief. Perhaps you too had to deal with all the loses … saying goodbye to eating normally, saying goodbye to a career, saying goodbye to financial stability, saying goodbye to spontaneity, saying goodbye to all the dreams that you once were aspiring to achieve and saying goodbye to the healthy life you once knew.

Growing up, I never would have thought that my life would have taken this course. All of us with CIIP have gone to boot camp as we learn to survive and become veterans in our battle with illness. Although in some cases, CIIP remains in one particular area, in other cases, such as mine, it progresses and consumes the entire digestive tract. In fact, after all these years, it has manifested itself in different ways throughout my entire body.

As many of you know, along with CIIP, I have gastroparesis, gastroesophageal reflux disease, diffuse esophageal spasm, achalasia, dysphagia, malabsorption, malnutrition, pernicious anemia, and a myriad of nondigestive diseases. A complex medical history is not unique among so many of us with CIIP. In my case, there is no known cause as to why, at the age of 27, I became so ill. The frustration lies in all the unanswered questions.

How distressing it is that since the initial invasion of CIIP into my life in 1979, there is still so little known about the disease. There is still minimal research, no adequate treatments, and no cure. So few people are even aware that the disease exists. In fact, there are many times throughout my life that I have had to come full circle and have found myself just like I was at the beginning … trying to convince others that I have a disease … that the reason why I can’t eat is because of the pain, nausea, vomiting … and all the other symptoms associated with progressive CIIP. In these circumstances, the same feelings emerge from me … the ones that I keep buried because of their painful reminders of the past.

After thirty years, I must say that my body is truly fragile and broken down. The struggles have become more numerous and more intense. But make no mistake, I am still grateful for every day … every moment … for everyone in my life … and for all the things that I’m certain, so many people take for granted.

My dreams have certainly changed throughout my journey of life. They now focus on the Association of Gastrointestinal Motility Disorders, Inc. (AGMD) and helping others. I now dream of giving patients more to cling to than the support of each other ... of giving patients treatments that will enable them to live a quality and productive life … of giving them more diagnostic centers so they will not have to wait months or even years before finally being diagnosed, and ultimately, giving patients cures so that they can chase after dreams of having a normal and healthy life.

Saying goodbye to your job ... Finding a new sense of purpose

One of the most difficult times in my life with digestive motility disease was when I had to accept and come to terms with the fact that I could no longer work. This came as a big blow to me as I absolutely loved the work that I was trained to do.

Many people with motility diseases may come to this crossroads in their lives. The emotions that transpire can be overwhelming. Accepting that the illness is real ... it is not going away ... that you will be giving up a major part of who you are and what you do ... that you will no longer be able to contribute financially or physically to many of the things that you once could ... and you must say goodbye not only to a job, but to a life that you once had while entering a new phase of your life riddled with uncertainties, illness, and all that goes with it.

I was a teacher and musician. When the illness invaded my life, I struggled to attend my classes and hide how I was really feeling and how my body was betraying me. I concertized, but it was becoming more and more difficult. Soon, the symptoms overtook the battle and I was forced to resign from all my positions. At one school system where I taught, they refused my resignation. I was told that they would put the position on hold and that I was always welcome back when I got better. This gave me hope. I was brightened by the prospect. But the light eventually dimmed and as I spent more hours in the bathroom, more hours in pain, more hours in despair, reality gave way to hope and I accepted the fact that I was no longer going back.

Life changed. Now, I contributed to the growing debt of our household because of all the medical bills. Now, I not only was battling illness, but battling feelings of guilt because of the debt and the impact that my illness was having on my husband and family.

These were difficult times both physically and mentally. Through the years, however, wisdom has replaced all the old feelings. I understand that all that I once did actually prepared me for what I do now. I still teach ... but I teach a different subject ... I perform, but to a different audience.

I can recall years ago a voice crying on the other end of the phone. Her name was Carol, she was a nurse and she also had chronic intestinal pseudo-obstruction like me. She was sobbing because she had to leave the job she loved ... nursing ... helping others ... all because of her illness. She worried that her sense of purpose would be lost. After years of learning, living and experiencing illness, I remember telling her that I understood how difficult it would be for her. However, she would still be using the same skills ... just in a different way. She would now be helping others with digestive motility diseases and disorders. Her tears stopped, and she suddenly felt a sense of peace. That was such a monumental moment in both our lives.

Leaving a job that you love because of digestive motility disease is not easy. You may experience anger, sadness, emptiness, loneliness and even depression. But let me reassure you that your sense of purpose becomes even more important. I truly believe that all of us who suffer from digestive motility diseases and disorders have a purpose of educating others and helping those in need. I can't think of anything more rewarding.

Think of it as a job change. A change in life ... a chance to share your voice with others who are new to the world of illness or even to veterans like myself who have been traveling similar journeys along the way.

The Impact Of Digestive Motility Diseases On The Family

Digestive motility diseases and disorders not only affect the patient, but can also greatly impact the patient's family and relationships. How anguishing it is for a parent to watch his/her child suffer and not be able to make the child better. How painful it is to watch a spouse, parent, sister, brother, aunt, uncle, or grandparent endure a chronic illness where treatments may be limited ... where there may not be any cure ... where others may not understand ...

Reflecting on my own experiences, I have witnessed the worried looks, concerned brows, roller coaster of emotions, and my family's bold attempts at trying to conceal the tumultuous torturous thoughts that boldly raced through my family's as well as husband's minds. The helplessness redirected into quiet prayer, entwined with emotions of anger, frustration, fear, guilt, and heartache.

I am blessed to have such a wonderful husband and family who are always there for me, even if they cannot fully understand the scope of the realities that I face on a daily basis because I too try so desperately to shelter them from the pain.

Others, however, are not so lucky. Relationships can crumble and families can be torn apart .... after all, it is not easy when someone has a chronic digestive motility disease or disorder.

Chronic digestive motility diseases focus on the very essence of living ... food ... nourishment for the body to live and function normally. Most of us, cannot eat "normally." The bathroom always needs to be nearby ... just in case. Perimeters become smaller as patients fear that the symptoms may suddenly worsen. Plans become difficult to make because one never knows how they will feel at any given moment. Finances may become impacted as medical costs escalate, employment jeopardized, and income dwindled. Emotions may rise as both the patient, family members, and relationships struggle with the guilt, anger, bitterness, frustration, sadness, depression, and mourning of a life that once was. Siblings may begin to act-up and jealousy may prevail. Spouses and other family members want their needs to be met and may become angry and impatient. Caregivers may burnout from the stress, and both the patient and family unit struggle to live in a fractured world of illness.

There are ways to ease the burden of chronic illness, however. Communication and understanding are key in all relationships. Talking about the illness, feelings, and needs can all be beneficial. Learning about digestive motility diseases and disorders is paramount as well. This may help others to try to understand, at least in some respects, about these illnesses. The physician should be aware of both the patient and family's abilities to cope. Some people find religious organizations helpful in their times of need. Professional counseling should always be considered if the problems escalate to an intolerable level. And support groups such as the Association of Gastrointestinal Motility Disorders, Inc. (AGMD) can be of great benefit by providing information, support, education, and resources. It really makes a difference when people communicate with others who understand because they are traveling a similar journey.

Living with digestive motility diseases and disorders is certainly challenging on a day-to-day basis, but working through each obstacle is certainly worth the effort ... because life is far too precious not to.

I welcome your comments and encourage you to respond with your own experiences.

The Unpredictable Nature Of Digestive Motility Diseases And Disorders

As hard as I have tried over the years, to integrate my digestive motility diseases into my daily life, sometimes they have a way of dictating things more than I would like to admit. This is evidenced by the delay from my first blog posting to now. Suddenly, my digestive motility diseases have gone into an exacerbated mode making life just a bit more challenging right now. All the symptoms associated with these diseases have heightened and although I try stoically to work through the familiar intruders, it is clear that they are impacting my entire body. It becomes more difficult to concentrate, to stay focused and to maintain the energy that is required to do the simplest things in life.

And so, as exemplified through my own personal experiences, I wanted to shed some light on the unpredictable nature of digestive motility diseases and disorders.

Many patients agree that their digestive motility disease goes through different phases. One minute, they may feel reasonably well and then the next minute, they can suddenly experience an exacerbation of the symptoms. These phases have no pattern. Both the stabilized phase as well as the exacerbated phase can last a day, week, month, year, or more. There is nothing that the patient did to cause this to occur. "The gut has a brain all of it's own."

Another unpredictable part of living with digestive motility disease is that of eating. Many patients find that even though they may be able to eat something without any major reaction one time, the next time they eat it, they may in fact be in excruciating pain. Certain foods may be automatic triggers such as those high in fat or gassy foods such as cabbage. But sometimes, what patients feel are "safe foods" ... these can also betray the them.

The uncertainty of living with digestive motility diseases and disorders is clearly apparent to those who are affected by them. It's hard to make plans and it is with trepidation that one goes outside of the house to do an errand, go to an event, or to socialize with others. It can be difficult to go to work or school because there is always that generalized fear that the symptoms can unexpectedly become worse.

I have been living with multiple digestive motility diseases and a myriad of other non-digestive medical problems for over 29 years. I continue to strive to live a quality and productive life and although it can be challenging, I am still committed to integrating the diseases into my daily living. Compromises are absolutely necessary. But I have chosen not to let the diseases consume my life. Instead, I aim my passion towards helping others through the Association of Gastrointestinal Motility Disorders, Inc. (AGMD). I focus on my blessings ... AGMD, a wonderful husband, family, friends, pets, and my strong faith as well as all the big and little things in life.

Through the years, my perspective has changed I have come to realize what is really important in life. I certainly would not have chosen a life of illness, however, seeing though God has given me this life, I embrace it with a gracious heart that I am alive and able to perhaps do some good on earth while I am here.

Living in the balance of having a chronic digestive motility disease with its unpredictable nature can be most challenging. But learning to ride the waves of its ups and downs is a strategy that is most important in order to live a quality life with disease.

I have always said that it is not the length of time that I am here on earth, but it is what I do with my time. I believe that everything has a purpose, and even though life has become far more challenging these days, I am prepared for the journey and grateful that God has given me another day.

Welcome to Mary-Angela's Blog

According to the Johns Hopkins Marvin M. Schuster Bayview Medical Center, there are more people suffering from digestive motility disorders than there are Americans suffering from AIDS or coronary heart disease.

There are many different types of digestive motility diseases and disorders including some of the more common ones such as irritable bowel syndrome (IBS), gastroesphageal reflux disease (GERD), fecal incontinence, diarrhea, and constipation. There are also some rare forms such as chronic intestinal pseudo-obstruction, Hirschsprung's Disease, and gastroparesis.

The impact that these diseases and disorders can have on a person’s life can be most profound. Digestive motility diseases and disorders can affect anyone at any age. In some cases, the disease can be from genetic causes. In other circumstances, they can be secondary to an underlying disease such as diabetes, Parkinsons' disease, scleroderma, muscular dystrophy, or lupus, etc. There may also be no underlying disease causing the problem. Many patients may not even look ill even though they are suffering greatly from a digestive motility disease. This can lead to many misconceptions about these digestive problems and the patient. Many patients feel very much alone in their suffering. It can greatly impact their lives and the lives of their loved ones.

The purpose of this blog is to shed light on specific digestive motility diseases and disorders and to cover some of the major issues that patients and their families must confront in coping with these problems.

I am a longtime patient suffering from multiple digestive motility diseases as well as other non-digestive motility problems. The digestive motility diseases and disorders that I have include chronic idiopathic intestinal pseudo-obstruction, gastroparesis, diffuse esophageal spasm, achalasia, dysphagia, and gastroesophageal reflux disease.

The Association of Gastrointestinal Motility Disorders, Inc. (AGMD) http://www.agmd-gimotility.org/ is a nonprofit international organization dedicated to serving patients suffering from digestive motility diseases and disorders as well as their families. In addition AGMD serves as an important resource and database for those in the medical and scientific communities. I am honored to have started this organization in 1991 and have been humbled by the stories and lives of so many people affected by these diseases. If AGMD can be of any help to anyone, please contact the organization. AGMD has been serving as a "Beacon of Hope" for over 17 years.

If you have a specific topic or issue that you would like me to cover in this blog, please let me know.

It is my hope that more people will be aware of digestive motility diseases and disorders and what patients and families must go through on a daily basis.