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A Journey through Life Unexpected
Life’s challenges can become so intense that some days it is difficult even getting out of bed. When people look at you, they can’t physically see anything, so they make statements like, “Oh, you look good. You should feel good.” (If they only knew.) It can take a whole lot of effort to do a normal everyday task. It takes courage, strength, energy, and attitude to be able to live in a world where one is chronically ill.
At the age of nine, I suffered with severe abdominal pain, vomiting, and exhaustion. It was not until the age of nineteen, at my first surgery, that I was officially diagnosed with endometriosis. I had infertility issues for six years and underwent nine surgeries before I was blessed with my son (now twenty-eight years old).
As if that were not enough, I was stricken with a second chronic condition, and it took longer to get a diagnosis than my first ordeal. I would go weeks without bowel movements (despite taking every kind of laxative known to man). It could be up to sixteen weeks before I had any results, and then it would start all over again. I was unable to eat because of nausea and vomiting, and my abdomen would blow up like I was nine months pregnant.
I had endless tests performed over the years. Some were painful, humiliating, and uncomfortable, and others were not so bad. I underwent gastric emptying (where my stomach did not empty properly); sigmoidoscopies; endoscopies; manometry studies; barium enemas; CT scans; MRIs; blood work; small bowel follow-throughs; sitz marker studies (for motility); and more. As my symptoms continued and got worse, I knew a big part of my life was going to be changed and uncertain.
Eighteen years later, I was diagnosed with chronic intestinal pseudo-obstruction (CIP), severe dysmotility, colonic inertia, delayed gastric emptying, and gastroesophageal reflux disease (GERD). I was scheduled to have a total colectomy (removal of my entire colon).
The recovery from bowel surgery was long. I was vomiting, had severe abdominal pain and nausea, and was unable to eat. I began to lose weight. Several times I was brought to the hospital or to my physician’s office because the pain was unbearable. At one of many visits to my gastroenterologist (due to being malnourished), I was admitted for evaluation. I was not prepared for the impact of the next phase of this debilitating disease.
I had a procedure done so I could be started on parenteral nutrition (PN) to support my nutritional needs. They also inserted a nasogastric (NG) tube so they could see what enteral (EN) formulas I would tolerate. Once they determined what formula was right for me, I had a gastrostomy-jejunostomy (G-J) feeding tube placed.
I knew at that time this was how I was going to consume my nutrition. Through the G-J tube, I receive all the necessary vitamins, minerals, calories, etc. I need to survive.
As many of you well know, living with a chronic condition forces you to develop a very different relationship with your physician. Unlike others who are treated for acute illnesses and then move on, the chronically ill patient will develop a life-long relationship with and depend on their physicians, no matter what crisis arises.
I am thankful every day for my physician. He sees me as a person with feelings who needs understanding, and not as just another patient with a disease or symptoms. He allows me to gain some sense of control over my medical treatment. He shows me that my opinion regarding my health matters, and we always work together to decide what is the best care and treatment.
Coping with all the ups and downs of a chronic condition is difficult, but when you have a physician in whom you can put your trust, it makes everything much easier to deal with. Search for a physician you feel comfortable with, even if you have to see several. It is well worth it.
I have always tried to accept everything I had to go through without too much effort, but when things kept building up and there was no reprieve, frustration set in. There were so many obstacles I could not stop. I had to have an ileostomy eight years ago due to megarectum and loss of control of my anal sphincter muscles. This was a huge adjustment in my life. I had to take control and learn what it meant to have an ileostomy.
I continued to work for a five-physician OB/GYN office while being hooked up to IV hydration and my PN/EN feeding. It was quite a challenge to maneuver everything and work a full-time job. That went on for four years. I dropped to 89 pounds and my physician saw how I was failing. He more or less made the dreaded decision for me to retire. At the age of forty-one, I was forced to go on disability. I now had to direct my life in a different direction.
It was clear now what my limitations were, but not what my possibilities were. Not long after I stopped work, my physician gave me information on the Oley Foundation, for consumers who live as I do. I attended conferences over the years and I learned as much as I could. I was so glad I reached out to Oley. It has been a tremendous help in being supportive and there for me. I eventually became a Regional Coordinator (RC) in the New Hampshire area to reach out to others with gastrointestinal/digestive problems.
Step by Step
Every day I face unexpected challenges associated with CIP. I prepare formulas and medication daily and IV hydration as needed; undergo tests; deal with infections, doctor’s appointments, and hospitalizations; care for my G-J tube and ileostomy; and handle the not-so-pleasant situations that arise with an ileostomy (leakage, getting appliances to fit properly, irritations, infections…).
It is a full-time job making sure all my needs are cared for. In September 2011, I had my forty-sixth surgery. I don’t know what the future holds for me, but I will continue to put emphasis on my determination and power, and I will keep on fighting.
Through the journey I have traveled so far, I never wanted sympathy or anyone to have pity on me. I did not want to dwell on the things I could not do, but rather on the things I could. Sure there were times I would despair, but I had to reach within myself to find the strength to keep on going. I had to maintain my positive attitude to take control and start being my own best advocate, to learn and search for information about this disease that had taken hold of my life.
The twists and turns in this road I’ve gone down are unexplainable. Attitude, being strong-willed, and having faith are the keys to moving forward—looking to the future and not looking back. I never know what curves are ahead, and I try to cope and deal the best way I know how.
When you are dealing with a chronic illness, no one can tell you how you should feel unless they are in your shoes (because otherwise they don’t know). It does not go away, so we must take one day at a time.
Back in the Saddle
I have had to find the best therapy that works for me. That would be the love I have for horses. My sisters took me horseback riding when I turned fifty in 2007. Shortly after, I started volunteering at the place we had gone riding. I had a special connection with the horse I had ridden that first day, Slim (only not so slim, at 16’3 hands and 1300 pounds). It made me happy to know I had found a purpose.
I then got involved with volunteering to help with the police horses in the city where I reside. I find such solitude and happiness when I am around them. Four years later, I purchased Slim. He was finally mine. He puts a smile on my face whenever I mention his name and start talking about him. Horses are the best medicine!
Strength in Adversity
The most important thing to remember, for those of us who are burdened with a chronic illness, is to remain positive no matter how hard it may become. Believe in yourself, redirect your purpose in life to what makes you shine, and always have the courage to prevail. Thank your illness for giving you inner strength, instead of being angry for the unexpected.
Every challenge you confront can give you the determination and willpower to get through the next hurdle with your health. Remember, we have the upper hand to take control. Never give up.
LifelineLetter, May/June 2012
2/6/2017 » 2/10/2017
Feeding Tube Awareness Week
2/18/2017 » 2/21/2017
Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week