To be honest with you, after all the times I've pooped my pants at this point, I was so ready to have an ileostomy. I had surgery in October 2016, about six weeks after radiation was complete. The radiation targeted the tumor of course, but I had a lot of muscle damage in the area leaving it difficult to have any bowel control. Combine that with the burning diarrhea side effects from oral chemo, and yeah, not fun. I practically skipped into surgery.
The surgery itself went very well. I was the first case of the day, so it was a super early morning arrival and feeling a little weak and dehydrated from the bowel prep the night before but still in good spirits. I'd been counting down to this day from the moment my doctors told me it was stage 3b colorectal cancer — I was anxious to be cancer-free. There’s always a lot of waiting around in the pre-op area, so my husband and I passed the time with nervous small talk and phone games. I think we tagged each other in every single funny internet meme we could find. All the surgeons, nurses, and anesthesiologists came into my room for their final checks. Eventually, I found myself being carted off while the sleepy medication pushed through my IV and then got a “see ya later” kiss from my husband. I knew he was going to have such a long day of waiting and I hated that.
I don’t think anything can prepare you for the moment before surgery. The ride down the hallway. Slipping consciousness by the moment. Realizing you're in the operating room. I remember being filled with emotion as I heard Here Comes The Sun playing (my new theme song, motto, motivation, obsession). I drifted off to sleep to the lyrics that had given me hope. The surgery lasted about seven hours and my surgeon came to talk to me afterward in post-op. I could tell he was pleased with the outcome. He was confident they were able to remove all of the tumors and there were no surprises along the way (having cancer makes you dislike surprises). Between the good news and the ice chips, I was a happy camper. I gave my new "accessory" a quick peek under the blanket and surprisingly wasn’t too freaked out at the sight of it (thanks anesthesia), then went back to sleep.
The next six days in the hospital went better than expected and soon I was resting and recovering at home in my own bed. A call from my surgeon confirmed that all the margins around the tumor were clear (i.e. he got it all) and out of the 12 lymph nodes that were removed around the tumor… ZERO had cancer. He also mentioned the pathology report calling my tumor low grade, so maybe not as fast-growing as we had originally thought. All in all, it was the best report I could've hoped for. I was off work about seven weeks and had built my way back up to normal diet and exercise, got used to my new ostomy, watched the entire Parenthood series (highly recommended), and was able to recharge and get ready for the next battle in this war IV chemo.
Mentally preparing myself for life with an ostomy was a challenge, but doable. I was thankful for my surgeon who laid it all out there from the start and let me know this would have to be permanent. I had plenty of time to wrap my head around that. And being an oncology nurse, I’ve obviously taken care of many patients with an ostomy, so it wasn’t foreign to me. The pep talk I gave myself before my first bag change was something close to what you tell yourself when you’re about to change a baby's diaper. At some point... you’re going to touch poop… with your bare hands... it’s not that big of a deal... you just do what ya gotta do!
Having an ostomy is simply normal for me now. But that doesn’t mean I haven’t had a pity party or two along the way. Every now and then something happens that reminds me I’m different. Now, if you don’t mind, I'm gonna jump up on a little soapbox for a moment. RANT: I’d like to give the general public a friendly reminder that not all disabilities are visible. No, I don’t necessarily consider my ostomy a "disability" but it does require me to use medical supplies, and need a little more restroom space, like having a sink together in the same space as the toilet… so yes, sometimes I've had to use the family or handicap restroom. Once I was at a Royals game (actually it was my first public outing after surgery) and got a mean glare as I came out of the family restroom from a mom who was waiting with her kids. And I get it! A few years ago, if I were waiting for a long time outside of a family restroom with my toddler and baby, and I saw a single (visibly healthy) person coming out, I might’ve given a similar look. I felt terrible and didn’t have the courage to explain myself, so I just darted off. There are plenty of invisible digestive disorders that could require a solo potty. Please, just give people the benefit of the doubt if you see them using a handicap stall.
It’s been an adventure with mixed emotions, but most importantly, I know what this little lifesaving bag represents — a new start and chance at a cancer-free life.
Funny ostomy story: I was in Target when a sweet well-meaning lady stopped and said “oh your children are beautiful” and then turned to me and said, “and another on the way, how wonderful”… didn’t have the heart to tell her it was just poop. HA!