Our retreats are BACK for 2026! Head to our calendar for more information!
Our retreats are BACK for 2026! Head to our calendar for more information!
Daily Life | Ostomy | Uncategorized
To set the scene, I am lying on a gurney, a bit groggy after my colonoscopy, in the post-op area of the procedure room. The doctor moves around the bed to the window, overlooking West Philadelphia, where he holds up a set of slides up to catch the light streaming through the glass. He starts pointing to the slides and talking about cloudy spots, tissue and lesions, all of which mean so much more to him than they would ever mean to us.
In a nutshell, the lining of my colon had totally collapsed, and this was what led to my recurring obstructions. These blockages prevented him from advancing the scope very far into my system, because he didn’t want to risk rupturing the bowel wall. After 22 years, my system had become so badly damaged by my Crohn’s Disease that it had now become life-threatening.
I try to absorb this information. The message is simple but profound, and I don’t really need to ask much else, because, in my heart, I know what it means. I am now facing the outcome I spent 22 years fearing. I look the doctor squarely in the eye and ask him what would need to be removed to get the disease under control and save my life. He proceeds to explain that I need to see a surgeon immediately and that they will remove my anus, rectum, colon, and possibly more of my small intestine. Finally, the ever-present possibility of needing an ileostomy has become my reality.
My head is swirling with a thousand questions: How will I live with an ostomy? What will I be able to do? What won’t I be able to do? What about work? What will I say to people? Of course, this will change my life, but I can’t stop asking myself if it will be for better or worse. The toughest question of all is, Can I even do this? The obvious answer is, of course I can do this, and I can do it well. After all, given what I have already survived, if it means getting my life back, who wouldn’t want that?
Now, 26 years later, here are the five reasons that I am so thankful for my ostomy:
If I had not had a permanent ileostomy, I would not be alive today. This is not dramatic hyperbole, but the honest truth. Doctors performing pathology of my rectal tissue found an aggressive cancer, which was on the verge of spreading (metastasizing) like wildfire throughout my body. Following my surgery, the oncologist did not hesitate to tell me that, if they had not found it and operated when they did, I would have died in 12-14 months. I was 40 years old.
Of course, having an ostomy has not been all been rainbows and unicorns. I’ve had complications, including a hernia and obstructions from disease and scar tissue, each of which required follow-up surgery.
However, without the ileostomy, I could have never done the things I have over the past 26 years. I’ve worked, travelled, and earned my doctorate. I’ve gotten married, seen my nieces get married, and watched my great nieces and nephews grow up; I’ve been there to help take care of my parents and my in-laws as their lives were ending.
My stoma has allowed me to meet and connect with some of the most amazing people I know. I have become friends with other ostomates, most of whom have stories relatively similar to mine. They are all dedicated advocates for survival, and they have shown how it is possible to keep on working, laughing, and living your daily life through some of the toughest odds.
My ostomy has helped remind me what is truly important to me. I know that sounds a like a bad greeting card. However, when you are tested to the level of having your life threatened by something so outside of your control, you can develop an ability to see through the garbage and learn to focus on who and what is truly important to you.
My stoma has helped me to hone my problem-solving skills and sense of resilience (which were already quite strong from having had Crohn’s disease for 22 years before this first surgery).
Some 26 years later, I have the answers to those questions. My ileostomy, rather than something that happened ‘to’ me, has totally become a part of who I am. It is as natural a piece of me as my arm or leg. The care and maintenance have become so ingrained that I truly don’t ever think about going to the bathroom any other way.
I have always been resilient, but this experience helped me to become so
much more confident and assured about my own body, and I didn’t expect that to be an outcome of having a permanent ileostomy. I had survived so much already; an ostomy wasn’t going to be what took me down!
Jeanne was diagnosed with Crohn’s Disease at 18yo, three weeks into her freshman year of college, and had her permanent ileostomy surgery 22 years later. Jeanne holds a BS Elementary/Special Education, an MS in Special Education, and an Ed.D. in Educational Leadership and Administration. She was a teacher and administrator in both NY and PA for 32 years before her retirement. Currently, she is an adjunct professor at Immaculata University in SE PA, where she Chairs doctoral dissertations and participates as a dissertation committee member. She volunteers with both the Crohn’s and Colitis Association of American (CCFA) and The United Ostomy Association of America (UOA), working on their Patient and Educational Advisory committees, as well as mentor within the CCFA Power of Two program. In her spare time, she is an avid reader and has done Beta reading of draft books, as well as sensitivity reads for authors who want to be sure that their content is both accurate, as well as non-offensive to the reader. Additionally, she enjoys knitting and traveling. She lives in suburban Philadelphia with her wife of 29 years and our Maine Coon cat, Ziggy.