Naming my medical devices improved recovery.

Diglett and Portabella Winfree

There are a multitude of changes that come with surgery, especially if a device is implanted or part of your body becomes exposed in a new way. I’ve had two such experiences, first with my stoma and then with placement of my mediport. On both occasions I spent a great deal of time researching the procedures and gaining knowledge related to their use after surgery. This process included reading all written information physicians gave to me, as well as combing Google for articles or blogs related. This phase of research was vital to acceptance of the changes for me. Multiple blogs I found from those in the ostomate community [ostomate = describes a person with an ostomy] spoke about naming their stoma.

Depiction of ileostomy stoma from Mayo Clinic

Before I get too far ahead of myself, a stoma is a small piece of intestine that is brought to the abdominal wall for stool (or “output” as its frequently called) to empty into an ostomy bag. It is done when someone has severe IBD or structural deficiencies in their digestive tract. Many people use the word “ostomy” when actually describing the “stoma.” I will try my best to be consistent and use the proper language throughout this blog. There are multiple types of ostomies; I have an ileostomy, which is high riding on the right side of my abdomen. (See photo.) Other types of ostomies include urostomy, for urine, and colostomy, to indicate opening in large intestine.

At first the concept seemed silly and unnecessary, since it already had a technical name (“stoma”.) But I mentioned the idea to my surgeon and she absolutely agreed. She explained in further detail that talking directly to the named stoma, like you would a baby in the womb, would connect you to it in a powerful way. Bonding to it, speaking to it, and nurturing it were all encouraged. I found that by naming it, the stoma took on a personality of its own. I yell at it directly if it is misbehaving, I laugh at it when it makes weird noises, and I refer to it in casual conversation without people getting grossed out by medical terms. It has been very liberating.

Diglett from Pokemon

My stoma is named “Diglett”, like the Pokemon (pictured.) My husband is the perfect level of nerdy and thought the stump of intestine looked a lot like this Pokemon from his childhood. I agreed! From then on we have lovingly referred to him as Diglett. His name being a little silly has actually prompted a lot of conversations about him that may not have happened without it. There are many people who shy away from discussing a topic if it is deemed “gross” or “too personal.” By having a funny, cute name it breakdowns the barrier of the stoma seeming too “medical” or “sterile.” When I look at my body and see my stoma, it feels more like a friend than an alien species. It made the stoma much easier to accept and live with. It truly has become a part of the family!

My first experience seeing Diglett

Recovering from a surgery as big as a colectomy is daunting. Directly after surgery I was only allowed to lift five pounds total. I quickly realized that nearly everything weighs that amount- even blankets! I also had a strict diet to follow that took time and planning to achieve. My skin was raw and painful from output and adjusting to ostomy bag adhesives. The hardest part of all was that I experienced body dysmorphia because my stomach had a foreign object on it that messed with my self-esteem. But because of the relationship I had developed with Diglett prior to the surgery, I was able to talk directly to it (and about it to others) until I felt better. As time went on I became more comfortable with Diglett and my confidence actually increased as a whole!

My mediport came seven months after Diglett, but we knew it was probably going to be placed for several weeks. This gave me more time to come to terms with the change my body would go through and to research the pros/cons of the device. It was apparent that the port was necessary due to frequent dehydration and hospitalizations. Again, my husband was the one to figure out the perfect name for it. He called it “Portabella” – ‘port’ to refer to the actual device and ‘bella’ to have a short nickname. I love it because Bella is actually an alternative word for beautiful, which I truly believe my mediport is. Its ability to give me the sustenance I so badly need is in fact a beautiful thing.

I have discussed this topic on other platforms, mainly Instagram, in the past and received great feedback from it. A dear friend shared this idea with her aunt and she was so inspired that she named her own mediport “Sadie!” She is now trying to convince her husband to name his knee replacement. My friend wrote to me that her aunt wished her physician would have given her this advice prior to her surgery. She shrewdly pointed out that this process could actually make aspects of major surgery fun, instead of all just scary.

Any device, from a prosthetic limb to a pace-maker, would benefit from a name. Take the time to get to know yours.

If you have a medical device that you’ve named, I’d love to learn the name and discuss if the name influenced your healing. Feel free to leave a comment or send an email to chronicallyjuliann@gmail.com.

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