- Meet Consumers/Patients
Life Interrupted: Learning to Live with SBS
The dictionary defines cope as “to contend with difficulties, especially successfully.” Based on this, we as humans must be in a constant state of coping; we just don’t realize it. We contend with difficulties that vary from minute to seemingly insurmountable.
We seem to begin using our coping mechanisms at birth, as we enter the loud, complex world of the human race. I’m sure this abrupt change is overwhelming to a newborn! Likewise, a catastrophic illness can be overwhelming, to the person affected as well as his or her family. Whether someone is born with medical problems, or they develop later in life, learning to cope with all of the related issues is a vital, ongoing process.
I have two sons; both appeared to be perfectly healthy at birth. They were a standard length and weight for newborns. They cried, nursed, slept, and pooped like newborns. They loved to be cuddled and held. And, of course, they were the most beautiful babies ever.
As my older son, Jameson, changed from a baby to a little boy, things continued to progress normally—until he was three years old, when he began to have severe stomachaches. It was shortly after the birth of our second child, Ross, and we initially thought the stomachaches could be psychosomatic, due to the change in family dynamics. After they worsened and continued on a semi-regular basis, my husband, Steve, and I knew there must be a physical problem.
Jameson battled these intermittent stomachaches throughout his young life. At times they were so severe that he would roll around on the floor for hours, crying in pain and saying he felt like he was going to die. None of the prescribed medications provided relief. Despite a number of tests, their cause was never determined. Ironically (in light of future events), their frequency and severity lessened as Jameson got older, until they virtually subsided. Then, out of the blue, when Jameson was sixteen, unbearable abdominal pains sent him to the emergency room (ER) in the middle of the night.
After spending the remainder of the night in the ER, Jameson was admitted to the hospital. They wanted to keep him medicated and determine the cause of his pain. A CT scan revealed he had suffered a mid-gut volvulus and needed emergency surgery. In the meantime, however, Jameson went into shock and was rushed to the intensive care unit. When he was stable enough, he was hurried to the operating room (OR), for what we thought would be a fairly routine intestinal resection. Later we were told Jameson was extremely lucky to have even made it through the surgery alive.
Our handsome, smart, funny teenage son now had three feet of small intestine left, and a condition known as short bowel syndrome. The surgeon explained that Jameson’s situation had been much worse than he had expected; most of the small intestine had been necrotic (dead) due to a lack of blood supply. He then went on to say that Jameson might not make it through the night…the next 24 to 48 hours would be critical…he would require a permanent central IV line…he may never be able to eat again. I tried to take in everything he was telling us, but all I could think was how Jameson’s life had been horribly changed. Even so, I somehow knew that he would pull through.
Steve and I held onto each other and cried for a while, then we pulled ourselves together. We broke the news to our family and friends, and vowed we would do whatever it took to make Jameson’s life as close to normal as possible. We realized the new normal would be a far cry from the old normal, but we were determined Jameson would resume his life as a teenager. From then on, Steve and I were fully immersed in doing whatever we could to alleviate his fears, and to keep ours well hidden.
The Early Days
In a matter of hours, our entire family’s world had changed forever. Now the healing process would begin. Seeing him for the first time, with all of the tubes, monitors, IVs, and bandages, only seemed to reinforce my feeling that he would survive this. We spent that first night comforting Jameson and gently explaining what had happened. Although he was on life support and couldn’t speak, he would nod his head in understanding, and then quietly fall back to sleep.
He ended up spending five weeks in the hospital. He underwent two more extensive surgeries and had an IV port placed so he could receive parenteral nutrition (PN). He emerged from the second surgery, which took place just thirty-six hours after the initial one, with a temporary jejunostomy in place. It had been recommended so the remainder of Jameson’s very fragile intestine could heal.
Jameson accepted this new part of his anatomy without reservation. Instead of being repulsed by it, he took great interest in it. During this initial phase of his recovery, he had a very positive attitude, a good sense of humor, and great friends to help him adjust to and cope with his new life.
Unfortunately, two weeks later, a third trip to the OR was required. Jameson had begun running a fever a few days earlier; a CT scan determined there was another section of necrotic small intestine. This surgery resulted in the loss of another foot of intestine, as well as the destruction of our positive attitudes.
Everything went downhill, from Jameson’s strength and pain tolerance, to his mood. I had to force him to ambulate and sit up in a chair. He was constantly nauseated. He was weak and plagued with dizziness. He developed insomnia. He didn’t joke around anymore, he became annoyed easily, and he really didn’t even enjoy visitors. I, too, became very down. I either wanted to cry or scream most of the time, but I refused to cry in front of anyone, especially Jameson, and I thought screaming would probably get me escorted out of the hospital. I felt so bad for my son, that everything that had happened to him was just unfair.
Very slowly, we both began to climb out of our respective pits. I continued to feel sorry for myself, but I knew I needed to focus my energies on Jameson and really encourage him. Steve and I both believed if we could just get Jameson home, everything would be better.
In addition to taking care of Jameson, Steve and I realized we needed to keep Ross’s life as normal as possible. As I emphasized earlier, Jameson’s illness severely changed our entire family. We knew we would have to work extra hard to balance our relationships with each other. I’m sure Ross understood why Jameson required so much of our time, but as a young teen, he had to be jealous of all the attention Jameson was getting. He’d been very good about visiting while Jameson was in the hospital. With school out for summer vacation, we tried to keep him busy with friends and doing activities he enjoyed.
Meanwhile, we worked on strengthening Jameson’s physical stamina and his self-esteem. He had lost a lot of weight and muscle mass while in the hospital, and had developed a negative self-image. He began exercising and lifting weights with a personal trainer who had experience with medically compromised individuals. Jameson found it difficult in the beginning, but before long his strength and stamina began to improve. Thanks to his HPN regimen, he also started gaining weight. As he improved physically, it was easier to encourage him to re-enter the social scene. Steve and I chauffeured him to a couple of gatherings, but once he regained the courage to begin driving again, he was on his way back to his old self.
About two and a half months after he came home, Jameson returned to the hospital to have his ostomy reversed and his small intestine reconnected. The surgery went very well, although he had about six more inches of intestine removed due to severe ulceration. Now he was left with only eighteen inches. And, wow, did those eighteen inches usher waste out of his digestive system FAST. Talk about coping! It seemed like the poor kid was running to the bathroom every thirty minutes. He was exhausted, and I was worn out just watching him go back and forth.
Fortunately, the recovery from this fourth surgery went more smoothly than from the previous ones, and gradually Jameson made fewer trips to the bathroom. He returned to school two months into his senior year and fell into a semi-modified routine. He attended a few football games, he went to school dances, he showed up at parties, he remained on the swim team and participated in each meet, he went with friends to Florida during spring break week, and he graduated with honors from high school. To his friends, no matter how his life had changed, he was always the same old Jameson.
hman year, with the assistance of two wonderful campus nurses, Jameson accomplished what he had set out to do—he demonstrated he could take care of himself.
Since that period in 2003, Jameson basically has been taking care of himself. The majority of his adult life has been spent many miles away from us. Sometimes he lived away because of job circumstances; other times it was a matter of choice.
I would like to say he has always taken very good care of himself, but that’s not always been the case. During his college years, the stress of being totally responsible for every aspect of his life, from dressing changes to school work to cooking and cleaning, could become overwhelming and detract from his health. Jameson was in and out of the hospital on several occasions with varying complications. He always rebounded, but sometimes it took longer than others. He graduated from the University of Georgia in a timely manner, and then went on to earn a master’s degree.
There seems to be a correlation between Jameson’s maturity and the state of his health: the older he’s become, the more stable his health has been. I also feel that the Oley Foundation has been a contributing factor in this scenario. When Jameson was finally able to attend his first Oley conference, he was mesmerized by it. Just being with such a caring, nurturing group of people seemed to give him a new perspective on life, as well as a desire to reach out to other teens and young adults struggling with similar issues.
Jameson has been through some difficult times during his thirteen years on HPN, but he chooses to strive for a positive attitude and enjoy life. If there’s something he wants to do, he figures out a way to do it. He is a certified scuba diver, has gone sky diving with his dad, likes swimming and kayaking, enjoys traveling and outdoor concert festivals, and loves going on cruises with friends.
Most recently, Jameson was offered a career change within the insurance company that employs him. He excitedly accepted the position and uprooted to Florida. It’s safe to say that he loves his new life there. It’s also evident that having short bowel syndrome and infusing HPN seven days a week hasn’t made Jameson put his life on hold. Instead, he takes hold of life and lives it to the fullest.
Leah chronicles Jameson’s story in her book, “Just Another Run of the Mill Day”(hardcover, $20; available online from Tate Publishing, Amazon, and Barnes & Noble, or contact Leah at Lpa1960@gmail.com [free postage]).
LifelineLetter, May/June 2014
2/18/2017 » 2/21/2017
Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week
Oley Regional Conference