I've lived with short bowel syndrome (SBS) for so long that became to mean just a side effect of my surgeries. I never thought of it as a disease or condition, but the more I read about it, the more I began to realize that SBS is not just a side effect, it’s a real condition which requires its own treatments beyond vitamin and mineral supplements. The National Organization for Rare Disorders (NORD) even states that short bowel syndrome is a complex disease that occurs due to the physical loss or the loss of function of a portion of the small and/or large intestine.
Familial Adenomatous Polyposis (FAP) itself is the original source of my health issues. Without FAP I wouldn't have these issues, yet they aren't symptoms of FAP. They are 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.
I’ve learned new aspects of SBS that I never knew, for example, edema of the legs and feet may occur as a result of being malnourished from short bowel syndrome. Prior to this I simply explained away bothersome symptoms as my body having 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. 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 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 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.
Here's what a bad day feels like with short bowel, as described by my mother:
"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."
Regardless of the level of severity, SBS deserves more attention and care in order to properly maintain the best health possible. Although difficult some days it can be manageable, but it takes time for symptoms to improve and for our bodies to heal or adjust to a new norm. NORD is a wonderful resource for information on more than 1,200 rare diseases and they offer a full report on short bowel syndrome.
This post originally appeared April 2, 2015 on Life's a Polyp.