Path to an Ostomy
My path to an ostomy began like many of my fellow ostomates. After eight years of failing pharmaceutical therapy for ulcerative colitis, it was time to remove my colon. They say that having a colectomy is the cure for ulcerative colitis. At the age of 30, I was happy to finally have a solution to my woes, move on with my life medication free and start a family.
Unfortunately, this isn’t what happened...at least not yet.
I always knew that one of the more common complications with having an ostomy could be skin conditions. Moisture under the wafer can cause yeast infections, frequent pouch changes can lead to skin stripping, and leaks can lead to traumatized/irritated skin. All of these issues are a pain but fairly easy to manage and treat. What I didn’t know is that 2-4% of patients who have had stoma surgery related to inflammatory bowel disease (IBD) can develop a much more serious condition called pyoderma gangrenosum. It is characterized by painful ulcers on the peristomal skin (I don’t recommend google imaging it). The cause is unknown, relapse can be common and it is seen as an extraintestinal manifestation of IBD.
About a month after my colectomy surgery I developed peristomal pyoderma gangrenosum (PG). I’m writing this a year and four months later and I still have PG. The thing is that PG is very hard to treat. In April I underwent surgery again to make my ostomy permanent and remove my rectum and anus. The proctectomy was needed because my remaining rectum had active disease. To treat my PG I’ve gone through rounds of steroids (oral, injectable and topical) along with trying multiple immunosuppressants.
These medications have all come with side effects such as nausea, decreased appetite, unwanted weight loss, and weight gain, extreme hair thinning and kidney issues. What is becoming more evident is that since I no longer have a large intestine it is possible that I actually have Crohn’s. Active IBD = active PG.
The expectation that life should not be how it currently is has caused a lot of unnecessary suffering for me. What I try to embrace is the notion that we all have the option to dance with life. Crisis can open a door to a new opportunity, a loss can be seen as a gain, and a breakdown can turn into a breakthrough. It isn’t always easy to have this kind of positive outlook.
Many days I find myself crying on the couch snuggled up with my cats or in the car on the way to run an errand. However, once I let my emotions run through me I feel much better and am able to take another step forward. My journey with IBD led me to a career change from graphic design to acupuncture. Had I not had this same experience with IBD I might not have ever taken such a leap. My work with patients is one of the most fulfilling things I do. It is because of my IBD that I am able to connect with and understand my patients on a deep level.
Last night I was lying in bed and had a vision of my PG wound. It was healed and I was no longer in pain. I started meditating (a de-stressing practice I often turn to) on this image. As I focused on my breathing I tried to embody a feeling of wellbeing. I saw bright colors, my body felt lighter and I noticed I was smiling.