As a person struggling with stomach and bowel issues for at least 20 years, I have been to countless doctors, all of whom diagnosed me with diverticulosis. They congratulated me on losing weight, even when I told them I was not actively trying to do so. Each time I complained about the stomach pain and the need to be always near a restroom, I was met with no follow-up, no urgency, and no answers.

I suppose I should have been better at advocating for myself, but over the course of 2 decades I began to normalize my symptoms. Looking back now, I realize there is nothing normal about having to use the restroom 20 times a day. A 10-minute commute to work, a visit to the grocery store, or attending events or gatherings became all but impossible due to my issues. It was painful and embarrassing, and it got to the point where bathroom trips were frequent, and the duration was extensive.

I was urged by a friend to stop ignoring my symptoms - someone they knew had done so and ended up with a colostomy. They passionately described to me how that intervention was ‘worse than death’. Those words ran through my head, repeatedly as I was informed, on my 51st birthday, that I had severe diverticulitis resulting in two large abscesses in my abdomen. Without an immediate colostomy, the abscesses would convert to sepsis, and I would die. ‘Worse than death’. ‘Worse than death’. ‘Worse than death’. The words were tattooed on my brain.

The following days were blurred by heavy medication. Although immediate surgery was expected, doctors determined I was too ill to survive the surgery. During the week it took for the abscesses to drain and for me to gain enough strength to survive the procedure, I was advised to avoid Googling the surgery. In all honesty, I was too sick and weak to Google anything - I spent that week wandering in and out of sleep for about 20 hours a day. The other 4 hours were spent agonizing over the same horrible thought: ‘Worse than death’. ‘Worse than death’. ‘Worse than death.’

My surgeon repeatedly assured me the colostomy could be reversed in 3 to 6 months after my intestines healed. I found myself constantly wondering if I would be able to handle ‘worse than death’ for that seemingly small period.

As my surgery date arrived, I felt I had somewhat prepared myself for the fact I was going to wake up with a butt on my belly. I had the support of my family and friends, I already felt better and stronger with the medications, and I was as ready as I was ever going to be. I had finally accepted this was something I was simply going to have to walk through - there was no option to walk around it.

Nothing prepared me for the unfathomable amount of pain I experienced after waking from the surgery. The right side of my abdomen was in so much pain that I thought they must have changed the location of the ostomy to my right side instead of my left. Through waves of pain and heavy medication, I insisted my husband go home - I was terrified for him to see me in the state I was in, and I knew he would be traumatized if he stayed.

The ostomy itself wasn’t what was causing me so much pain. Although laparoscopic surgery was planned, the damage to my colon was so severe doctors made the decision to instead open a 9-inch-long, 5-inch-deep incision in my abdomen. The pain was caused by a surgical incision wound vac used for fluid management. The following days were an excruciating series of dressing changes, where nurses inadvertently ripped off the flesh growing into and around the portion of the wound vac inserted into my incision. Dressings had to be changed every other day, and I spent my ’day off’ anticipating the pain of my next dressing change. The colostomy itself was easy for the nurses to manage in comparison.

It was another 2 weeks in the hospital before doctors began to discuss my return home. Unfortunately, I would not be allowed to do so without a friend or family member learning how to manage my colostomy for me until I healed enough to manage it on my own. Mortified, there was no way I was going to ask my husband to do this. My twins were preparing themselves to leave for college, so this left my oldest daughter, Brynna, who very kindly volunteered to help without fully understanding the scope of that commitment.

I was ecstatic the day they told me I would be discharged. My husband and daughter had to bring new clothes for the trip home, as my weight had diminished to 110 pounds during my hospital stay. The ride home felt surreal - everything looked brighter and sharper in the way it does when one has been shut inside for an extended period. While I looked forward to pulling into my driveway and returning to the life I knew, what awaited me was a different reality altogether.

Before I became so ill, I had been the in-home caretaker for my elderly mother. Our home had been outfitted with a few assistive devices, like a ramp and shower bench, and I was familiar with helping her utilize a walker and wheelchair, but it was a strange feeling to be the invalid instead of the caretaker. I think my family was shaken as well - the caretaker of all was now the person who needed care. The weight of this put a pall over the entire household.

Brynna became my whole world, working closely with my ostomy nurse to become adept at changing my colostomy pouches and managing my stoma. The entire process of skin prep and pouch adhesion took about a half hour with the nurse’s guidance and assistance factored in. But as the days wore on, I could feel something was wrong with my pouch. It did not feel like it was attaching correctly but I did not want to ask my daughter to do it again and again. It also seemed like the pouch was inverting in towards my stoma, like it was trying to go IN my abdomen rather than sticking on the outside of it. Consultations from my nurse didn’t seem to make a difference. Repeated pouch changes, irritated skin and embarrassing accidental detachments wore on both my sweet daughter and me.

‘Worse than death.’ ‘Worse than death.’ ‘Worse than death.’

After several discouraging days, back to the hospital we went. As I sat waiting in the ER for 6 hours, I formulated a new plan. If this was going to be my new normal for 3 to 6 months, I had enough pain medication at home to take care of the problem in one fell swoop. I hadn’t had a suicidal thought up until that point, but I could not imagine putting myself or my family through this agony for a prolonged period. I had all night to mull it over and was fairly convinced this was the way to go when I saw my ostomy nurse the next morning.

I completely broke down describing the difficulties we had been experiencing at home, and, sobbing, told her I could not handle this, I didn’t want my family to have to care for me this way. I told her about my plan to commit suicide and the words came out of my mouth at long last - “THIS IS WORSE THAN DEATH!”

My nurse paused for a moment and said, “I think we need to change the lens you are looking through, and we need to do it right now.” Her words confused me. What other lens was there? I was a 51-year-old woman with a hole in her stomach that released poop. The pouch felt like an alien attached to my body and I was consumed by it 24 hours a day. All I thought about was this colostomy and whether my pouch was going to stay on my skin.

She very calmly continued. “You are looking at this as life-changing in a negative way. This surgery saved your life. Your parents still have a daughter. Your husband still has a wife, and your children still have a mother. It may seem inconvenient, but I’m sure having to go to the bathroom 20 times a day was inconvenient too. But you did it. And one day soon you will be able to take care of it yourself and won’t think of it at all, outside of the time you empty or change your pouch. You need to see it through that lens, not the one you are looking at it through now.”

I blinked hard at that and fell silent. I knew she was right. This surgery saved me, and enabled me to continue being a daughter, a wife, and a mother. I was skeptical that I would ever get to the point where it did not consume my every waking thought, but I trusted her. Right then and there, I changed my lens.

Things fell into place after that. I viewed my stoma as a friend I needed to learn to care for and became determined to care for it myself. It turns out, my stoma is very flat to my skin. Most stick up and out, so the pouch goes over them. I needed a convex colostomy pouch that pushed down a bit into my abdomen to make my stoma pop up into the pouch. I also learned that the pouch will not adhere properly to skin that is compromised, so my nurse showed me a method called crusting, that preps my skin and allows the pouch to adhere strongly.

Once we had the right pouch and skin preparation in place, I started to learn more tips and tricks. To ensure there were no emissions during a pouch change, I learned that eating two large marshmallows would stop my bowels for 10 to 20 minutes beforehand. I read everything I could find on-line and had conversations with others who had colostomies for support and ideas. With their help, I learned different ways to control any breakthrough odors from my pouch.

True to that wise nurse’s words, I am no longer consumed by my colostomy - also known as “Stuart.” Yes, naming it definitely helped me! As she said would happen, I think about it only when I empty and when I do a pouch change. I also am grateful to be the only person in my family that doesn’t have to stop on a road trip or in a public place to go number 2. After voracious research online, I learned that the colostomy reversal surgery only has a 65% success rate, and that upon many reversals, patients have heightened urgency and many times, uncontrollable bowel movements. I elected to keep my colostomy intact and celebrate my newfound superpower.

I’ve thought often about that nurse and the advice she gave me the day I was contemplating ending my life. I’ve used the same advice when advising new colostomy patients through my online advocacy work. And I use it again and again on myself when I am stuck on an issue I cannot seem to resolve, or something that is upsetting me. I never cease to be amazed by the impact of choosing to look at something from the positive versus negative side. There is beauty and solace and wisdom to be found if you choose to view your challenges through a different lens.

by Kristi Erban

Kristi Leavitt has spent the majority of her career in advertising but has found a new road to travel and is now a sales leader at an independent living retirement community in Spokane, WA. She has lived in the Spokane and Coeur d’Alene area all her life. She and her husband Ken have blended family of seven adult children and one grandchild. When not at work helping seniors and their families find solutions, you can find Kristi playing with her pups while baking them treats and settling into life as a recent empty nester.