By Steve Jordan, 61 Years Young
There are some moments in life that divide everything into ‘before’ and ‘after’. For me, my ostomy journey became one of those moments.
Before all of this, I never imagined I would one day learn from personal experience what it would be like to be living with a bag attached to my body. I never imagined I would have to learn words like ileostomy, colostomy, reversal, hernia repair, dilation, infection drains, PICC lines, catheters, and permanent ostomy. Like many people, I had heard of ostomies, but I did not truly understand what life with one meant until it became part of my own story.
My journey started with serious bowel and colon problems that eventually led to surgery. On January 22, 2021, I had a colonoscopy. Then, on February 3, 2021, I had a rectal endoscopy ultrasound. These were the beginning steps in a journey that I did not fully understand at the time.
By March 29, 2021, I was having my first major surgery. After over six hours and having another doctor brought in, the lower section of my colon was removed, and I woke up with an ileostomy. At that point, I believed it would be temporary. I thought I would get through the healing process, have the reversal, and eventually return to something close to normal.
But life does not always follow the plan we have laid out in our heads.
After my first surgery, things became much worse than I expected. I was sent home dealing with more than just the new ileostomy. I also had to have a catheter inserted and I was given medications to help me urinate and move waste through my system. My body was trying to function, but something was very wrong.
The amount that I was outputting far exceeded what I was taking in. The ileostomy was draining so much that my body could not keep up the necessary fluids I required. I did not realize how dangerous that could become until just a couple of days before my two-week follow-up appointment. By the time I made it to the doctor’s office, I was severely dehydrated. I was so weak and depleted that I almost died right there.
I had to be admitted back into the hospital. They placed a PICC line into my right arm so they could give me fluids and medication directly. Then I developed a post-operative infection. The infection was so serious that doctors had to insert a drain tube into my left butt cheek to remove the dark infected fluid from my body.
At one point, I had a bag on my belly from the ileostomy, a catheter bag for urine, and a drainage bag coming from the infection site. I had bags connected to me in several places, and it felt like my body was falling apart.
That was one of the lowest and scariest points of my life. I came close to dying. A preacher prayed over me twice. My father stood beside my hospital bed and cried because he thought I was either already gone or that he was about to lose me.
During that time, the pain and loneliness became almost unbearable. Being in the hospital, hooked to tubes and bags, weak, scared, and separated from normal life took me to a very dark place mentally. I am not ashamed to admit that there were moments when I thought about ending my life because I did not know how much more pain I could take.
A psychologist came and spoke with me, but honestly, it did not help much at the time. What helped me more than anything was love; especially the love of my wife and my family.
My wife’s love helped carry me when I did not have the strength to carry myself. Even when I felt broken, ashamed, scared, and alone, she was always part of the reason why I kept holding on.
I also thought about my son. He is autistic, and I knew deep down that my wife and son needed me. I knew they could not go through life without me, and that thought became one of the biggest reasons I fought my way back. I could not give up on them. I could not let the pain win.
That was the turning point. I had to pull myself out of that dark place and start focusing on getting better; not just for myself, but for the people who I loved and for the people who loved me. My family became my reason to keep breathing, keep healing, and keep moving forward.
Somehow, by the grace of God, I survived.
After that first surgery came more procedures. On May 18, 2021, I had my first flexible sigmoidoscopy. On May 27, 2021, I had another one. Then, on June 21, 2021, I had a third. Each procedure was another reminder that my body was still not healed and that this journey was not going to be simple.
On July 12, 2021, I had ostomy reversal surgery. That was supposed to be the step that helped me move forward. I wanted so badly for that surgery to work. I wanted to believe that the hardest part was behind me.
But the reversal did not give me the life I had hoped for.
Instead of everything returning to normal, my body continued to struggle. I dealt with bowel issues, pain, uncertainty, and the ongoing fear that something still was not right. My life became a cycle of doctor visits, procedures, testing, and waiting to see what would happen next.
After going back to work as a construction electrician, I had hernia surgery on October 13, 2021. That was another difficult part of the journey. After everything my abdomen had already been through, another surgery meant more pain, more healing, and more adjustment. It felt like every time I tried to move forward, something else pulled me back.
On January 31, 2022, I had another flexible sigmoidoscopy. Then, on May 3, 2022, I had another one. On September 21, 2022, I had yet another flexible sigmoidoscopy. These procedures became part of the rhythm of my life; appointments, scopes, results, more questions, and more uncertainty.
Then came the dilations. On September 23, 2022, I had my first colonic dilation. On October 12, 2022, I had a second one. These were done because my body was still not functioning the way it needed to. My colon and bowel system were not giving me the life I had hoped for after reversal. Near the surgery repair, my bowels were ‘closing up’. The doctor had never seen this happen so quickly after being repaired. I was still dealing with complications, still searching for answers, and still trying to find some kind of normal.
On November 28, 2022, I had minimally invasive transanal surgery. By then, I had already been through so much both physically and emotionally. Every surgery and procedure carried hope, but it also carried fear. Hope that it would fix something. Fear that it would not. Hope that this would finally be the step toward healing. Fear that it would only lead to another setback.
Then, on January 30, 2023, I had colostomy surgery. I chose that. I had no life; always looking for the bathroom whenever I left the house. I was constantly going to the bathroom while I was at work. My record is 22 times in a day using the bathroom!”
That surgery changed my life.
By that point, I had already been through the ileostomy, the reversal, the hernia surgery, multiple flexible sigmoidoscopies, colonic dilations, transanal surgery, dehydration, infection, drains, catheters, and hospitalizations. My body had been through a war.
The colostomy was not something I originally wanted. I do not think anyone dreams of having an ostomy. But after everything I had been through, I also knew I could not keep living in constant sickness, pain, fear, and uncertainty. I needed a chance at a better quality of life.
At first, accepting the colostomy was not easy. I do not think anyone wakes up from surgery and immediately feels peaceful about having an ostomy. It is a shock. It changes how you see your body. It changes how you think about going places, sleeping, dressing, working, intimacy, odor, gas, supplies, leaks, and daily routines. It changes the things that most people never have to think about.
There is grief that comes with it. That is something I think people need to hear. You can be thankful to be alive and still grieve what happened to your body. You can know the surgery helped you and still have days where you feel angry, sad, embarrassed, or overwhelmed. Those feelings do not mean you are weak. They mean you are human.
For me, one of the hardest parts was realizing that my body had been through so much and that life was not going back to exactly how it used to be. I had to stop measuring my life by what it had been before and start learning how to live the new life in front of me.
That took time.
In the beginning, the ostomy felt like something I had to constantly think about. I had to learn how to manage it, how to change supplies, how to deal with output, how to watch what I ate, and how certain foods affected me. Having a colostomy can make gas and odor feel like a bigger concern. I learned that certain foods caused me problems. Nuts, eggs, and potato-based foods like french fries and mashed potatoes could create gas for me. I had to learn my own body all over again.
I also had to learn the mental side of it. I had to learn how to leave the house with confidence. I had to learn how to trust the pouch. I had to learn how to stop worrying every second about leaks, odor, sounds, or whether someone could see it. I had to learn that most people were not paying attention to it the way I was.
Little by little, something in me changed.
The ostomy that once felt like a burden started becoming part of my routine. I began to understand it. I began to manage it. I began to realize that it did not have to control every part of my life. It was there, but it was not all of me.
That was an important turning point.
I started to see that my colostomy had not taken my life away. In many ways, it had helped give parts of my life back. Before surgery, bowel issues could control your day. You would worry about bathrooms. You worry about accidents. You worry about pain, sickness, constipation, diarrhea, or never knowing what your body is going to do next. That kind of life is exhausting.
With an ostomy, there are challenges, yes. But there can also be freedom.
I can work. I can go out. I can travel. I can eat dinner with people. I can live my life. It may not be perfect, and it may not be the life I would have chosen, but it is still a life worth living.
One thing I have learned through this journey is that attitude matters. That does not mean pretending that everything is easy. It does not mean smiling through pain or acting like the hard days do not exist. A good attitude means choosing not to let the ostomy be the end of your story.
Some days are still frustrating. Some days I still think about what I went through. Some days I still wish things had turned out differently. But I also remind myself of the alternative. I am still here. I survived. I get to keep living. That’s what really matters.
I have also learned how important community is. When you go through something like this, it can feel very lonely. People can love you and still not fully understand what it is like to live with an ostomy. They may not understand the fear of a leak, the embarrassment of gas, the stress related to supplies, or the emotional weight of seeing your body changed.
That is why ostomy support groups and shared stories matter so much.
When someone shares their story honestly, it gives another person permission to breathe. It tells them, “You are not alone.” It shows them that someone else has cried, struggled, adjusted, survived, and found a way forward. Sometimes that is exactly what a new ostomate needs to hear.
I have heard from people who are newly out of surgery and who are scared. I have heard from people who woke up expecting one outcome and were told their ostomy was permanent. I have heard from people dealing with pain, cancer, failed reversals, depression, shame, relationship struggles, and fear. And I understand much of that pain, because I have walked my own version of that road.
If I could say anything to someone who is new to this journey, I would say this:
Give yourself grace.
You do not have to accept everything overnight. You do not have to love your ostomy right away. You do not have to be positive every minute of every day. There will be hard moments. There will be awkward moments. There may be tears. There may be anger. There may be days when you look in the mirror and wonder how this became your life.
But those days will not be forever.
You will learn. You will adjust. You will find products that work better for you. You will learn what foods affect you. You will learn how to dress comfortably. You will learn how to leave the house with more confidence. You will learn that a leak is not the end of the world. You will learn that your body may be different, but you are still you.
You are still worthy of love.
You are still worthy of respect.
You are still capable of joy.
You are still allowed to laugh, work, travel, be active, have relationships, and live fully.
One of the biggest mental battles is not just learning to care for the ostomy. It is learning not to see yourself as broken. Because you are not broken. You are changed. There is a difference.
My scars, my surgeries, and my colostomy are part of my story, but they are not my whole story. I am still a husband, a father, a worker, a writer, a photographer, and a man who has lived through some hard things and is still standing. I am still me.
Faith has also played a part in how I look at this journey. I believe God has carried me through moments when I did not know how I was going to keep going. There were times when the road felt too heavy, but I am still here. And if my story can help even one person feel less alone, then something meaningful will come from everything I went through.
I do not pretend that an ostomy is easy. It is not. It comes with real physical, emotional, and mental challenges. I also do not believe it has to be the end of a good life.
For me, the ostomy became part of survival. Then it became part of healing. And eventually, it became part of living again.
I still have moments when I think about everything I went through. I still have days when I wish my body had not had to endure so much. But I also have days when I forget about the bag for a while. I have days when life feels normal. I have days when I am thankful that I am still here.
That is where hope lives; not in pretending everything is perfect, but in realizing that life can still be good after everything changes.
My journey has taught me that strength is not always loud. Sometimes strength is getting out of bed after surgery. Sometimes it is changing your bag for the first time. Sometimes it is leaving the house when you are scared. Sometimes it is laughing about something that once made you cry. Sometimes it is sharing your story so someone else can feel less alone.
To anyone living with an ostomy, especially those who are new to it, I want you to know this:
Your life is not over.
Your body has changed, but your purpose has not.
There will be challenges, but there will also be good days again.
You are not alone.
And one day, what feels overwhelming now may become just another part of your routine; something you manage while you keep living the life you fought so hard to keep.
That is what I am trying to do.
One day at a time.
One step at a time.
With faith, patience, humor, gratitude, and the love of my family, I am learning to live.
Steve lives in Kannapolis, NC
This story was sourced by Lisa Gausman, Ostomy Canada Senior Editor.
Disclaimer: The information shared by Ostomy Canada Society is for educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Every person’s ostomy experience is unique. Please consult your health care provider with any questions about your condition, care, or treatment plan.
One Response
Steve, your story is no doubt à living nightmare! And I can relate to your story from every angle as well. Physical, mental, social, spiritual, and many more! I thought I went through a 30 month nightmare from colon cancer surgery in December, 2012 to June, 2015. I had a ileostomy for 4 months, got it reversed, and the nightmare began. Things like being afraid to leave the house due to 20 bathroom trips daily, afraid to travel, etc. But after 4 major surgeries, and eventually a permanent colostomy, I got my life back and have basically lived a pretty normal life since 2015. My Ostomy saved my life physically and mentally! Is it perfection? No! But without it my life would likely have ended, one way or the other.
Your story is an inspiration, my friend! Continued health and happiness in your life!