How Misbeliefs Can Hurt Your Health

An ostomy surgery can be a life-changing procedure for people with Crohn’s disease, helping improve symptoms and quality of life. However, there is stigma surrounding ostomy surgery and the opening in the abdominal wall it creates. Health’s Crohn’s Disease Advocate Gaylyn Henderson, MPH, who has an ostomy, explains how people’s misconceptions about ostomies have negatively impacted her physical and emotional health.

In the spring of 2022, I attempted to begin aquatic therapy. My physician had prescribed this type of physical therapy because the water-based exercise reduces the amount of stress placed on joints, which would help with my chronic pain from arthritis and other conditions. Unfortunately, due to the ignorance and discrimination I experienced that day, I was unable to participate in the aquatic therapy.

During my first aquatic therapy appointment, the physical therapist and I began discussing my health and desired outcomes for therapy. We reviewed my health history and areas of concern. I told the therapist that I live with Crohn’s disease. I explained to her that I’ve had several surgeries, including a proctocolectomy (removal of the colon and rectum), and because of that, I now live with a permanent ileostomy (an opening in my abdominal wall for waste to leave and go into a pouch on the outside of my body).

The physical therapist stopped me mid-sentence and said, “I’ll have to check to see if you can even get in the pool with an ostomy.” I froze. 

I was appalled at what she said. I stopped talking. I couldn’t think. Everything started to move in slow motion. The physical therapist continued talking to me, but I couldn’t hear her. I didn’t see her. The room seemed to turn white. It was actually quite strange. I was frozen. So much so that the physical therapist stopped and said, “Well, I see we’ve hit a standstill. I will go ask my manager about the rules of getting in a pool with an ostomy.”

It was an indescribable feeling being in that moment. I felt confusion, hurt, and despair. My physician, who prescribed aquatic therapy, knew I had an ileostomy. My physician would not have prescribed aquatic therapy if I could not get in the water. There is nothing wrong with someone going into water with an ostomy. It poses no risk to the person with the ostomy and will not contaminate the water. So why was I being treated as if there was a risk?

The physical therapist left me in the room so she could meet with her manager. When I was left in the room by myself, I began to cry. I was incredibly hurt. I couldn’t help but think that surely a medical professional was not making decisions based on hurtful stigmas of living with an ostomy. At that moment, I could not think properly.

While in the exam room, I called my sister and friend. After talking with them, I decided it was best for me to remove myself from the situation and leave the office.

While walking away, the physical therapist’s manager flagged me down and asked if I could stop to talk about the situation. I agreed. I thought she was going to apologize. She did not. She instead reaffirmed what had just transpired and tried to make it seem as if the concern was for my safety. 

Why would I have shown up for an appointment in a pool if I couldn’t get in a pool? I knew there was no harm to my safety—and had they not been misinformed by stigmas, they would have also known there was no need to be concerned for my safety.

I had to take some time to process what occurred. It was devastating to me in that moment. And to be perfectly honest, it still is. Despite being healthcare providers who vow to do no harm, their ignorance, rooted in harmful stigmas, caused me a great deal of harm. Of course, there was mental and emotional harm. However, my physical health was also negatively affected.

I had been excited and hopeful about beginning physical therapy and feeling better physically. I looked forward to the reduced pain, improved flexibility, and increased strength it could give me. To say the situation set me back in my eagerness to participate in physical therapy is an understatement. It halted my ability to move forward with therapy, hindering my ability to make the best decisions for my health. I never returned to this location, and I was incredibly hesitant to try aquatic therapy anywhere else. 

However, I realized I couldn’t let the ignorance of a couple of people stop me from achieving optimal health for myself. I am currently in intensive physical therapy for my conditions and could not be prouder of myself for enduring. I’m also thankful to have a knowledgeable and empathetic therapist who will work with my health needs.

While I was able to get myself the physical help I needed after this event, I couldn’t stop thinking, “What if this happened to someone else?” That breaks my heart. I have lived with my ostomy for over 15 years and am usually secure in myself and my ostomy. However, the negative stigma of living with an ostomy articulated to me by a healthcare provider rocked me to my core. I couldn’t imagine how a comment like the one I got would impact someone who just received an ostomy or someone having a hard time accepting it. 

Unfortunately, I have experienced discrimination in many facets of my life. Being discriminated against by healthcare providers, however, is detrimental. Maybe that’s why it hurts far worse. Unfortunately, this wasn’t the first time a provider has made a negative remark to me about ostomies. 

Healthcare providers—not always with ill intent—have made hurtful comments that have impacted my views on how I see ostomy surgery and my decision to get one. I believe this is due to the negative stigma and how medical providers perceive the surgery to impact someone. 

Prior to receiving an ostomy, I had a few providers encourage me to try different medications and for ostomy surgery to only be a last resort. I’ve had providers tell me I do not want to have ostomy surgery because I will no longer be able to have children. I’ve had providers tell me that by having an ostomy, I may end up alone. All of these reasons are false. 

Ostomy surgery should not be a last resort option. It should be considered as a treatment and not viewed as a treatment failure. I’ve known several people who have an ostomy and have successfully given birth. I know these things now, but when I needed an ostomy, I didn’t know. I instead believed what my medical care team told me, which delayed my voluntary decision to receive an ostomy. Then there came a time I had no choice.

Ostomy surgery saved my life. I wholeheartedly believe and wish I would have had ostomy surgery earlier in my disease journey.

I had to unlearn everything I’d ever heard about ostomy surgery. And that includes comments made by healthcare providers. This is part of why I founded Gutless and Glamorous, a non-profit organization dedicated to erasing the negative stigmas and misconceptions of living with an ostomy. The organization also supports and educates people contemplating ostomy surgery or living with an ostomy.  

I am dedicated to raising awareness of living with an ostomy. I struggled immensely prior to having an ostomy and was terrified of receiving an ostomy solely due to the stigma. After receiving one, I vowed to raise awareness of living with one in the hopes other people would not live in fear of the stigma and to erase the stigma of living with an ostomy.

Prior to my initial aquatic therapy appointment, I already had a prepared statement to say if someone ever questioned me about my ostomy at a public pool. My plan was to educate about ostomy surgery and how it saved my life.

In all my times going to a public pool with my ostomy showing, I never had to use my prepared statement. No one who worked at or swam in the pool ever showed any concern about me being in the water. It took me going to a physical therapist’s office—a healthcare facility—for someone to confront me about swimming due to the negative stigma of ostomies. And that’s what shocked me and still shocks me to this day. 

It is crucial for medical providers to learn and understand ostomy surgery so this doesn’t happen to anyone else in any setting. It is not an exaggeration to say that lives are lost due to the negative stigma of living with an ostomy. Erasing the negative stigma of living with an ostomy and spreading awareness of ostomy surgery has the ability to save countless lives.