I couldn’t share this horrific development.  It wasn’t in ANY of the plans and couldn’t be my new reality!  NO!

Have you ever gotten devastating news? Have you ever received an expert opinion or diagnosis of something so personal that you’re just ashamed… embarrassed? I got that news and I could hardly believe it.  After I got home from hearing the pronouncement at the doctor’s office,

I was on the operating table for this ‘final’ reversal procedure and when they opened me up, they found all this white fluid! Wow! They were NOT expecting that! So they put in a (very painful) drain to try to figure out what that white fluid was with tests.  When I awoke, I saw my bag still intact and my heart dropped. I was told they could not reverse my colostomy until this fluid drained. The fluid ended up being caused by the previous removal of dozens of lymph nodes, so my body couldn’t get rid of that huge amount of white fluid on its own during this healing process. That surgery had to be halted and they inserted the drain and rescheduled the reversal surgery. Another shift in plans and more waiting.

A couple months later, here I am again, getting ready for that same surgery that would get me back to “normal.” They even did a test first to check the plumbing flow, so they were certain it could be reversed…. Oh happy day!  That part of my cancer journey would be over and all I would need to do is recover and I’d be DONE!  I remember being so elated that this would all be done and I’d be healed… I even wrote up a couple “Whoots” on social media to celebrate this last surgery!

Not so… 

Immediately after reversal, I knew in my heart of hearts that something was very wrong. There was so much pain every time I went to the bathroom…it was absolutely excruciating! At first, I thought that maybe it was part of the healing while my body got used to using my old plumbing again. I kept in touch with my doctors and very soon we realized there was something more serious going on…a much bigger issue.

I was scheduled for a colonoscopy and the results revealed that I had so much radiation damage that I would indeed have to have a permanent colostomy.  As a side note, this poor doctor that broke this news to me was the exact same doctor who, two years before, had to tell me “you’ve got cancer and you’re 80% blocked with a tumor we can see… and there is much more of a tumor outside the colon that we can’t see.”  So when he delivered bad news yet again, he scheduled a three-way call with my surgeon to explain it once and for all.  All three of us were tearing up as I was crying about it…crying in shock about the realization that I would forever need a permanent colostomy. 

I went home and the flood of tears increased.

I could talk to anyone about what was going on with any of the latest surgeries, chemo or any of the medical goings-on. I could, well… joke about poo…make light of things… I mean – things were kind of funny sometimes.  I would say, “yeah, well it wasn’t Winnie the Pooh, just poo poo,” and other  things to lighten up the situation. But now, all of a sudden I was really ashamed. 

So I sat on the floor…and cried… for the longest time.  Among the many things going through my mind, were thoughts like, “no one will ever love me.” The reason that thought came to mind was because I was going through divorce at the same time as this prolonged cancer journey and I thought, “I’m going to be single again. Everyone will know that I’ve got this bag that I poo in, and no one could possibly ever love me.”

And so I was silent and I closed myself in.

I closed in for a good two weeks and couldn’t talk to a soul about this discovery and this upcoming surgery to give me this permanent poo bag.  I wallowed… mostly in shame.

And then I began to see the light.

Finally, I let God prevail. I trusted in God. And the answer to relieve me from this pain of shame was to start talking. What really helped me was to start talking to God, to start praying. I started talking to my friends and started letting them know that, “Hey, that temporary colostomy that I was so excited to get rid of…well…it’s mine forever.” And you know, I got a bunch of comforting thoughts like, “oh, I’m sorry.” And “it’ll be okay.” And “no one will know.”

But I knew EVERYBODY WOULD KNOW and everybody would hear it…would hear when there was poo going on…everybody. And so I couldn’t really share openly about it beyond those closest to me. I still wanted to hide it. I still wanted to pretend it wasn’t there. I wanted ‘me’ back and I wanted to be ‘normal’ again.  So even through the years, when the colostomy bag would make a little noise and someone would say, “oh, your stomach is growing; are you hungry?” I would say, “Yes. Yes – that’s what it is.”  Inside I would laugh a little and also I’d give a sigh of relief that they didn’t ‘know’ about the colostomy,  I just would ignore any further comment and not even discuss that I actually have a colostomy. It just was really hard. It was like this private thing that I couldn’t talk about. 

The real power came when I was finally able to share openly. It was kind of like a “coming out” of sorts. I was able to talk about it with people that weren’t close friends or were co-workers or even just as it happened to come up.  On one occasion, I even briefly shared with a group at church on Sunday. On that day, a woman I’d never met before at church came up to me afterwards as I’d just walked outside the building and she said, “can I talk to you?” She was seeking advice and had an earnest and concerned look on her face, so I invited her to sit in my car with me, so we could talk.  She continued, “my son is 40 years old. He was in an accident and he has a colostomy. And he is so depressed and embarrassed. His wife left him and he lives in my basement with all the shades drawn in the dark. And I don’t know what to do for him.”  As I listened to her, my eyes glistened and then we wept together. My heart went out to her son that he could live that way. It was so painful to hear and painful to feel her deep yearning for her son’s happiness. This mother’s love was so very strong for him. We spent some time and talked about a few ways that she could reach out and help encourage him to live life more vibrantly. I helped her understand that he likely thought the same things that I did… that everyone would know. And it’s dirty and it’s embarrassing, and it’s shameful. I helped her understand that it’s not and that these are his perceptions. She was so glad we spoke and I think of them both often to this day.

deal with the medical issue on a daily basis may not have come across. 

I also get to talk to medical students!  And I’ve been a case study for many cohorts of Physician Assistant students. It’s been so great because they remember vibrant Betsy now, not the tough chick who lived through this major medical stuff.  I taught a group of students about having this journey and the shame that I felt when I got that diagnosis…that all of a sudden this ‘bag’ was a part of me and I would never be normal like other people again. I shared with them that my internal voice used to be so negative.  I used to be embarrassed and ashamed before I fully stepped into the freedom of being ‘me’.. Various students through the years have come to me saying, “I have a patient that was diagnosed with cancer,” or “I have a patient that has a colonoscopy coming up and they’re scared that they might have to have a colostomy. What should I say? Can you talk to them?” They might have questions about the hospital, or the procedure, or living with the colostomy. There are all sorts of opportunities that I get to share with people around me.

You need to know I am a positive girl. I mean, who else is going to start a social media group called “Colostomy Joy?” Who even puts those two words together?  This girl right here! So, yeah–a complete shift from the cancer girl with major shame and trauma of a permanent colostomy into a God-led girl shining out all the joy and living life with an exclamation point!

And this is the part about CHOICE:

I put these words together:  ColostoMy Joy… by choice. It’s a CHOICE to live in Joy.

Even though… I have an ostomy…

Even though… it’s permanent…

Even Though… it’s ‘different’ and not ‘normal’…

Even Though…

But it’s MY normal… and WHY I’m still here.  It’s simply a re-routing of my plumbing, so I can survive… it’s like someone who lives life without sight, or in a wheelchair…  it’s different and I don’t have to label it as “bad”.  I choose to label it as MY JOY!  I choose to be happy and grateful to still be here… to live, really live life with an exclamation point! 

What are you choosing?

May it be JoyFULL!

May you ever live in JOY with LOVE… SOLID.

Much Love,

Betsy

(I’m headed out livin’ life with an exclamation point!)