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 Central Line for TPN|
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