Living with Ostomy

Not Just a Colorectal Surgery Nurse - a Patient Too

“I’m not just a nurse teaching you this – I've lived it”, this is a phrase that I say time and again to my patients. I have been an ostomate. In 2014 I had a surgery that gave me first-hand experience into the world of having a stoma. I knew it was coming for about 4 years, the writing was on the wall. Experience told me that I was going down that path, but I pushed it off for as long as I could anyway. Sometimes life brings us down a path and we wind up exactly where we should be, this has been the case with my career. I am a colorectal surgical nurse at Danbury Hospital (in Danbury CT). While it doesn’t sound glamorous, I know I’m helping people, and I know that my background has added an element that you learn only with experience.

My First Encounter with Crohn’s Disease

I was diagnosed with Crohn’s Disease at age 19. It’s no surprise that I always scored high on modules that involved the gastrointestinal tract (early exposure does wonders for someone’s understanding and base of knowledge of such things). When I had projects to do in nursing school, I would choose ones that pertained to colorectal. So, I guess it should be no surprise that I was recruited by the colorectal surgeons, and wound up a colorectal surgical nurse. I am exactly where I should be!

In 2010 I had a rectal fistula that eroded into my vaginal wall, and while that sounds pretty painful, you might not realize what it really means. It meant zero control over passing gas. Whether I was with a patient or working with a doctor, I was not in control of that bodily function. Imagine for a minute what that would be like, not being able to suppress gas. It was embarrassing, very embarrassing. I knew that I was going to have to do something about it, but like most people, I kept trying to avoid the inevitable. Eventually, I knew the time had come to not work around it, but to deal with it. It took four years for me to get to that point, my symptoms got to the point that I absolutely had to have it fixed. I could not imagine having one of the doctors I worked with performing the surgery. It was far too personal a surgery to have performed by my co-workers and in my place of work. But it had to be repaired, I couldn’t continue like that, but it took me 4 years to get to that point. I opted to have my surgery at Mount Sinai in New York City. The ability to divert your intestine so that your rectum can heal can be lifesaving, but at the very least it is definitely life-changing. It’s a world where you have to think about the privacy of using the bathroom, think about things like odor eliminators, pouch ballooning, adhesives, and adhesive removers. It’s also a world where you are dependent on products.

Experience with Ostomy Surgery

In 2014 I (finally) had my surgery, it was a multistep process. The first surgery was to create the ileostomy then rest to allow the inflammation from my Crohn’s disease to settle down, then to repair the fistula. I wound up with perforations and had to have them repaired after to the redirect of my intestine. As a result of that surgery, I had a stoma. This was my first personal experience with having a stoma, not my first experience of having a redirect surgery of the gastrointestinal tract. I had a bowel redirect surgery in 1994, due to my Crohn’s Disease. I no longer have a stoma, it was temporary, but I gained firsthand experience.

Even after years of being a nurse for ostomates, there were some things that caught me off guard. The ostomy bag was ever-present, warm, and heavy with bodily discharge – that was an eye-opener. Having it hanging on your outside feels different. Psychologically it was a challenge for me. I found a wrap that held it away from my body so that I didn’t have to feel it all the time, that helped.

Many Ostomates have to adjust their diet, I did not. Crohn’s disease had prepared me well. I already knew what to eat and what not to eat...or what not to eat when I would be around others.

Salad is out of the question when I’m going to be around others. I did not tell any of my patients that I had a stoma when I had it. I did tell close friends. And for that first bag change (even though I had helped many people), I asked for a visiting nurse. I needed her there for support. I knew how to change a bag, but my own bag? It was new territory. My husband wasn’t comfortable being an extra set of hands in that way. In fact, I taught that visiting nurse how to use the powder and spray correctly!

Adapting to life after Ostomy

I did not travel in the 6 months that I had an ostomy. I was out with friends, went to a friend's 60th birthday, attended my daughter’s birthday. I was around 50 - 60 people at parties, but only my close family & friends were aware of what I was going through. At work, I kept a kit in one of the bathrooms near the nurse's station and learned to work around it. Did it affect my love life – absolutely NOT!

When I first had my stoma, I used the products provided by the hospital. What I learned from my personal experience was to experiment. What worked for one patient didn’t necessarily work for me...it was a trial error. Learning as I went, I found products that helped me and used that knowledge to help my patients. I am fully empathetic to everyone I come into contact with – I know what they’re going through.

For my Crohn’s disease, I am currently on Humera. I have to be cautious, as it reduces your immune system. With the coronavirus pandemic right now, I wear masks at work and patients have been good about wearing masks as well. Even before the Coronavirus, I have always been an avid hand washer – I continue with that. I have always lived by the belief “don't let it control you, you have to control it”.

I have seen more patients that have temporary stomas than permanent. But one patient comes to mind when I think of permanent stomas – she had multiple surgeries, went back and forth between having a stoma and not...until she decided to make it a permanent decision. She hasn’t looked back. She’s happy now, yes, she has to think about things that you and I do not, but she’s also not in pain. A stoma changes life in very positive ways, be it permanent or temporary.

At the hospital, I work with patients daily (about 3 per day), I schedule an hour per patient, then chart their information and update the visiting nurse. After working with them I help with any education pieces I can for non-emergent reasons. I also help people who have left us messages or called in and left voicemails. I get messages from people that aren’t even our patients, asking for help- I never turn anyone away. I have too much knowledge that can benefit others to do that.

Ostomy Accessories

Ostomy Support Group

When HPFY started their Ostomy Support Group I joined. I know that I can help, so where I can help - I do. I have on-the-job and first-hand training, so I use my knowledge as best I can to help others. I am right where I am supposed to be! I’m not a sick person I’m a person with a condition that I learned to live with. So, for every ostomate out there – you are in control! Join the support group, together we support each other!

 

Author Profile: Christine Kijek, Registered Colorectal Nurse

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