I had dreams of posting a blog about my colonoscopy earlier this week and sharing that I was polyp-free and the coast was clear in my colon.
Although I didn’t leave the clinic like I have in previous years, worried and concerned cancer was growing in my body, I didn’t leave like I’d hoped.
During my colonoscopy, my GI found three polyps. They were all hanging out in the rectum. Fortunately, he removed them.
This is why I’ve been getting an annual colonoscopy for several years.
But, in addition to the polyps, he found the radiation I received after my first diagnosis has continued to cause me problems. I’ve lost a lot of the elasticity the colon and rectum need in order to hold waste.
I continually deal with urgency issues, I rely on anti-diarrhea medicine so I can leave the house, and I’ve sidelined myself from most strenuous physical activity because I face a lot of pain and some bleeding if I run too quickly, or for too long. This isn’t a new issue, but after this colonoscopy, I realized it’s not getting better.
So I had to ask the question, despite my anesthesia fog going in and out:
Should I consider an ostomy?
Considering an Ostomy…
My GI was there 17 years ago and has always shot me straight. The first thing he said in response to my pointed question was “ileostomy,” which humbled me to no end.
Even after many years of working in the colorectal cancer community, I have a lot to learn.
He explained a total colectomy surgery would take the end of my small intestine and connect it to an opening created in my abdomen, a stoma. And then, I’d wear a bag on my stomach to hold my poop.
This wasn’t the first time I’d heard of this idea.
The possibility of an ostomy bag was also mentioned to me around 17 years ago when I was first diagnosed with colorectal cancer. Being 17 years old and scared out of my mind, it was my worst fear at the time.
I went into surgery not knowing if I would wake up with a "bag."
The first memory I have after surgery is feeling around the stiff, white sheets in my hospital bed for my stapled-up, swollen abdomen and looking to my parents for reassurance,
“Could they reattach?”
I'll never forget the wave of relief I felt when they confirmed I didn't have a colostomy bag.
One of my biggest blessings at the time, my 17-year-old self focused on surviving colorectal cancer and not conquering body image issues with an ostomy as well.
But now, many years later, the possibility of an ostomy has returned. And I must consider it, and face the issues, once again.
Handling the Ostomy News
As a 34 year old, I’m handling the idea of getting an ostomy much better than I did when I was 17.
I now have many, many friends who’ve gone before me, “ostomates,” we like to call them. They’ve shown me a colostomy bag is not the end of the road - but possibly a new beginning.
Many of my friends with colostomy bags run, hike, bike and more. In fact, my good friend Doug just hiked the Pacific Northwest Trail with his; my friend Staci has always been so open and vulnerable about her “Barbie butt,” it’s an almost-fun idea to join her club.
I say “almost fun” because I’ve found that while my mind has matured with my age, my emotions are still catching up.
The emotions couldn’t help but show themselves as tears streamed down my face once I got home from my colonoscopy this week. The inevitable, exhausted sigh of “surgery, again” hit me:
Tears of disappointment… I wasn’t polyp-free. My colon's permanently damaged.
Tears of sadness… my fight with cancer isn’t over. Lynch syndrome is so exhausting.
Tears of craziness… after the surgery, I won't poop or fart again (normally), and in an odd way, I'll miss that.
Tears of fear… would I still feel and look attractive? (God bless my husband for answering with a resounding, "yes!")
Tears of defeat…. this makes me different from most people again, in yet another way. The cycle feels never ending.
Oddly Not Angry
I balled up and let the streams flow for a little while. It surprised me when I realized I didn’t feel angry at God, something I’ve quickly rushed to in the past.
I just felt really sad. Yet in a strangely comforting way, I could feel Him with me - He was sad for me too.
My tears didn’t last long. After a few short minutes, I picked up my phone and did something I’ve learned to do along the way (oftentimes the hard way):
I reached out.
I first asked a few people for recommendations on surgeons. And then I called offices to get consultation appointments on their books. Fortunately, Kansas City has some great options for me.
And then, I reached out to a small group of friends and family.
If I’ve learned anything in 17 years, it’s to not fight alone.
Over the week, I've been encouraged and comforted by many prayers and songs. My loved ones are coming around me and their support is humbling and helpful.
Several details are falling into place, and I pray this serendipitous feeling continues and more of the next steps will be peaceful and feel right.
Today, I wanted share the same news with you.
Please pray for us as we take the first steps onto a new, yet also familiar, path.
I will keep you posted.