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 enters and gently asks whether my wife is in the waiting room. I nod in the affirmative, and, despite the fog filling my brain from the medication, manage to quietly remark: ‘Oh, and I wasn’t under for very long, was I?’ I ask, before he he takes a deep breath and responds with a nod of his head.
He leaves and soon returns with Lisa, my wife, both of them looking concerned. Lisa and I both turn to the doctor, like two good schoolchildren waiting to be taught. 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 me.
Jeanne married her wife Lisa in 2014
Explaining the damage
Eventually, I interrupt the doctor’s report and ask what all of this actually means. He smiles and calmly says, ‘Okay, fair question’, before explaining. After years of chronic disease, the lining of my colon has collapsed, and this had led to recurring and terrible obstructions. These blockages have prevented him from advancing the scope very far into my system, because he didn’t want to risk rupturing the bowel wall. After all of these years, my system has now become so badly damaged by the disease that it has become life threatening.
I try to absorb this information. The message is simple but profound, and I don’t really need to ask to know what it means. I am facing the outcome I have spent 22 years fighting and fearing. I look the doctor squarely in the eye and asked 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 and colon, possibly more of my small intestine. Finally, the everpresent possibility of needing an ileostomy has become a reality. I am referred to a surgeon, who, the doctor swears, is the best ostomy surgeon around, and we make an appointment.
Ostomy surgery can be life-changing
A thousand questions
As Lisa and are driving home, my head is swirling in a thousand directions, and I am beset with 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?’.
I know it will change my life, but I can’t stop asking myself if it will be for better or worse. The toughest thought of all is ‘Can I really even do this?’. The obvious answer is, of course, I can do this, and I can do it well. After all, it means getting back my life, and who wouldn’t want that? I settle on a better question: ‘Why would I be thankful for my ostomy?’.
Since Jeanne’s surgery, she has earned a doctorate in education
Reasons to be cheerful
Some 22 years later, I still have my stoma, and 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.
Still, I know that many people are living with the fear of this as a possible outcome, while others struggle to adjust to life with a new stoma. So, to offer what help I can, let me recount why I am so thankful for my ileostomy.
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My stoma saved my life
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 (metastasing) 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, it would have become terminal, and I would have died at 40 years old.
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My stoma gave me my life back
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. Meanwhile, recurring bouts of disease have wreaked havoc on my body.
However, without the ileostomy, I could have never done the things I have over the past two decades. I’ve worked, travelled and earned my doctorate. I’ve been able to legally marry my wife; I’ve seen my nieces get married and my great nieces and nephews grow up; and I’ve been there to help take care of my parents as their lives were ending.
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My stoma introduced me to like‑minded friends
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 quite 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.
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My stoma reminded me what is important in life
My ostomy has helped remind me what is truly important to me. I know that sounds a little cheesy, 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 cam develop an ability to see through the garbage and learn to focus on who and what is truly important to you.
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My stoma taught me problem-solving and resilience
My stoma has helped me to hone my problem-solving skills and sense of resilience (which, of course, were already highly developed, from having had Crohn’s disease for 22 years before this first surgery…).
I do believe that I have always been resilient, but this experience has helped me to become so much more confident and assured about my own body, and I didn’t expect that as an outcome of having a permanent ileostomy. Honestly, you might think it would do the opposite, but, for me, I felt that I had survived so much already. This wasn’t going to be what took me down!
I quickly learned to listen to my body. Part of process has been learning to be okay with things like feeling the pouch getting puffy, or seeing that I have to change what I wear when it no longer looks right with the pouch. Pouch or no pouch, I have realised that I am so much more than the sum of my parts. I remember that I am a badass superheroine who has struggled and won a war that few people could even dream of fighting. My pouch is a powerful tool, and that has given me real confidence. Now, where did I put my cape?
After overcoming cancer, Jeanne has travelled to Alaska, Iceland and the UK
The same but different
Someone once asked if of these surgeries have made me a different person. I only had to think for a moment to realise that, of course it changed me. I am a different person, physically and emotionally, for having survived these experiences. I live with a pouch taped to my abdomen due to chronic disease and I beat cancer over 22 years ago. However, I really don’t think about it day-to-day. I just live my life as though I am exactly like everyone else.
Jeanne in the UK
Jeanne Dagna lives in Pensylvania, USA, and helps run a number of online Crohn’s disease support groups
