News & Events

MY 20TH STOMA

By: M. Scott Bowling
President
Metro Maryland Ostomy Association, Inc.

 

For the past 33 years I have endured the challenges of Crohn’s Disease, an intestinal disorder for which there is no known cure, and have lived with an ileostomy since age 8.

Many of you have been with me throughout this journey, some, even from day one – for that I am eternally grateful.

Over time, there have been many “flare ups.”  The remedies and treatment plans have been as simple as multiple medications, but have gone as invasive as 19 bowel resections (surgical removal of intestine,) including the removal of my entire colon and rectum before age 12.  At this point, I have lost most of my intestine through these surgeries and have the bare minimum remaining.

This past Monday on my way home from a business trip, I began bleeding from the ileostomy.  While I hoped it would stop, it continued, and I eventually sought treatment at Anne Arundel Medical Center, in Annapolis, MD.  It was determined that I was experiencing a small bowel obstruction and that my “stoma” was not getting sufficient blood flow to keep it healthy and living.

After consultation with many doctors it was determined that I needed to be admitted to the hospital, and an aggressive course of steroids needed to be commenced in order to bring the Crohn’s Disease back under control.  There seemed to be no logic to repairing/revising my ileostomy if the Crohn’s Disease was still active and raging.  Over the last few days, I’ve resided in a small room on the 6th floor of the North Tower hoping that all the medications are working, my blood pressure will stabilize, and I will be strong enough to undergo surgery #20.  Today, I believe that there is evidence of progress, as the bleeding is significantly diminished.

Surgery #20, what’s the big deal, it’s just one more after 19, it’s nothing I haven’t been through before, by now it should be old hat; well, it isn’t.  Surgery #20 for me is meaningful, and requires a lot of careful consideration, almost as much so as surgery #1.  You see, at the commencement of Surgery 1, I had my entire colon, small intestine (bowel), and rectum.  At the commencement of a Surgery 20, I have only a foot-and-a-half of small bowel.  With Crohns’s Disease at work in that foot-and-a-half of remaining bowel, and a stoma suffering from insufficient blood flow, and becoming necrotic, action is required.  As easy as it is for me to know that, it is much harder to accept it.  This surgery will deplete my remaining small bowel.  An option is to go solely to IV nutrition, so that the bowel is not tasked with processing the products of digestion, thus trying to preserve what I have.  The only other alternative option, which is highly risky, is an intimal transplant. 

For the time being, I am getting nourishment via an IV.  For now, my bowel must completely rest in order to stop the bleeding and reign in the Crohn’s.  I am on a list for possible transplants, but must receive a match from a very narrow band of potential donors.  I am moving up on the list based on the increasing urgency of my need, but do not know when or if a donor match will be made.  If a match is made, there is a very significant risk of rejection, which has very undesirable consequences.

So, here I am, facing each new day, awaiting each morning’s sunrise, looking for improvement from the medication, and looking forward to returning to my work and my numerous volunteer activities and community organizations. 

Besides giving you each an update, I want to thank you for your concern and support.  I am very fortunate, so very fortunate to be surrounded by my family, friends, and so many kind and generous people. As we embark this latest journey together, I know that without each and every one of you, my family, and my loving husband, Dave, the odds would be insurmountable.

Now, let’s push forward together!



As a confused ostomate 18 years ago my WOCN urged me to go to a MMOA meeting.  I attend regularly to learn and to contribute to others.