An Ostomy Story

“I should be able to reconnect you,” the surgeon said to me as she sat across from me at MD Anderson in Houston. After being diagnosed with stage 3C rectal cancer, I had traveled to MD Anderson to get a second opinion regarding my surgery and treatment since the tumor had invaded other major organs.

“Ok, great! What does that mean?” I had no idea what I was in for. To say I had no idea about this cancer world would be a drastic understatement. The ports, infusions, never ending appointments and ostomies, I had no idea about any of it. I was as shocked as any to learn that I needed a port inserted into my chest so I could receive treatment. Wait, I need what?

I became an ostomate on August 20, 2019.

When my surgeon, Dr. You at MD Anderson, explained to me what an ostomy was I was…bewildered? I can’t even recall exactly except to say that I thought to myself, “Oh yeah, I think I’ve heard of that before, I’ve seen that before I think.” I was told I would have a bag, most likely temporary, and that I would be reconnected once I had healed from surgery. As I focused on finishing my chemotherapy and radiation treatment, the surgery was always looming in the back of my mind. I knew it would be the last and final (hopefully) thing I would endure. It was also the scariest. The most anxiety inducing.

As August 20, 2019 approached, I set off to Houston, Texas to begin the flurry of pre op appointments. In the meeting with my surgeon we went over my recent scans and the plan for surgery. She urged that I needed to be mentally prepared for either outcome: a temporary ileostomy or a permanent colostomy. Wait, what? What happened to the reconnection? She ever so eloquently explained to me that my tumor was not super low (7cm up); however, she would not know until she got in there and started looking at margins how it would all go. She possibly might have to cut out more tissue to get clear margins. Radiation had also caused significant scarring that could be seen on the scans and would have to be worked around. We discussed a lot in that meeting: margins I comfortable with, margins SHE was comfortable with, quality of life with and without the bag. I left that meeting more flustered and nervous than ever. On top of anxiety over surgery I was also dealing with the uncertainty of how it would all unfold. I did not expect so many decisions having to be made intraoperatively.

One thing did stick out in my head. In the discussion with the surgeon, I latched onto her telling me a permanent colostomy involves the large intestine and would be located on the left side of my abdomen and a temporary ileostomy involved the small intestine and would be located on the right side of my abdomen.

Left side = colostomy

Right side = ileostomy

Left side = permanent

Right side = temporary

I managed to make it through the twelve hour surgery (alleluia) and woke up as I was being wheeled back to the recovery room. As you can imagine, I was super drowsy and out of it from anesthesia but felt no pain. In the recovery room there was a flurry of activity around me, nurses talking to each other and to me and hooking up machines. In an instant, I heard one nurse say to another something about watching out for my colostomy.

Colostomy.

She said the word colostomy.

Permanent.

In what felt like a second later, the surgical fellow came by to see me. A young curly haired blonde woman, I swear she lived at the hospital. She would often do her rounds at 6am and then would stop by my room later that evening. I looked at her groggily as she stood at the foot of my bed. She explained that the surgery went very well and they were happy with the outcome. They expected pathology to come back in a few days.

I just stared at her, “Is my colostomy permanent?”

She looked at me for what felt like an eternity (I think she was surprised I was already asking) and said, “Yes”. I can’t even recall what my reaction was. I was still trying to understand what was going on. She continued, “Catherine, you are going to live a long life. The surgery went very well. You are going to live a long life and you can do that with a colostomy. You will do everything you did before this. It will be ok”. I am paraphrasing obviously as I do not remember word for word what she told me but I remember her repeating over and over “you are going to live a long life”. I’m pretty sure I did not cry, I just sat there trying to comprehend it all. We finished our conversation and she left.

The first person to come back and see me was my husband. He later told me he wanted to be first so he could break the colostomy news to me. I think the first thing I said to him was, “The colostomy is permanent”.

I already knew.

I spent the next week in the hospital recovering and fully ignoring and pretending the ostomy was not there. At first the nurses thought this cute and funny. However, as the week progressed I had one nurse tell me I was going to have to do a bag change on my own and get some training before I was sent home. Ugh. They would let me ignore it no more.

I guess I am writing this because I have been struggling lately. Honestly, I haven’t had a lot of issues with my colostomy. It kind of just…works. Mentally; however, I have been having a hard time. Sometimes the weight of having it be so permanent is overwhelming. I will live my life with this ostomy (God willing) for more years than I lived without it. The thought of having to spend the rest of my life with this bag attached to me gets overwhelming. I will never leave the house again without worrying if I have enough supplies or extra clothes.

For the most part, if you saw me, it is not obvious I have an ostomy. Yet, it’s a mental (and physical) weight I carry with me everywhere.

Can other people tell?

Can they hear the bag rustling?

Do I smell?

Is it obvious in a swimsuit?

How do I talk to my kids about this?

Do people think I am gross?

For a long time I felt I was just trying to get accustomed to this post cancer life. I did my best to lean back into life and the day to day responsibilities of being a wife and mother. But sometimes things just feel heavy. They have felt heavy for me lately. Maybe it’s the quarantine, being cooped up and the uncertainty of what life looks like in the months moving forward but I have been struggling.

I yearn for the carefree days of wearing whatever I wanted whenever I wanted. I mean, let’s be honest, I was not rocking bikinis or midriff baring shirts in the first place. However, now I am trying to dress a body that not only has morphed in size and shape over the last year but now I am dealing with dressing a body with an ostomy. Pants and shorts sit differently on my body. Clothes in my closet no longer work on this post cancer body.

When I was a kid and would complain about things my grandmother would often tell me to “offer it up”. I have thought about her a lot lately. I try to keep in perspective that I survived stage three, almost stage four cancer. That these scars at least mean I’m still alive. That someone certainly has it worse than me. That I should be thankful my cancer responded to the treatment. That I haven’t had a ton of issues with the ostomy.

Just because I carry it well doesn’t mean it’s not heavy.

As I begin to get back into journaling, I’ve been reflecting on what word I’m going to focus on this year. [Yes, I realize it’s already May and I’ve got a late start.] I keep coming back to the word grace. Not only the name of one of my best friends but also what I’ve been trying to extend to myself lately. I try to remind myself that my body is still physically healing and my soul might take a little longer to heal. I’m trying to give myself grace that I can sit in sadness about my ostomy but try to move through it. I remind myself that I am able to do everything I did before. Possibly with more supplies and baggage, but hey, I can do it!

I’d also like to be better about extending grace to others in my life. To live in a way where I give the benefit of the doubt that everyone is doing their best. That everyone deserves grace. That we all carry around our scars and baggage differently but surely it is there for everyone.

For whatever reason this season of life has just been tough for me. Post cancer life has been different and an emotional rollercoaster [amplified by menopause]. I am now navigating it in isolation and it’s just felt extra heavy. For now I’ll remember to give myself grace as I try to navigate the new normal going forward.