My Ileostomy Adventure

For those who don’t know, in June of 2016, I was diagnosed with colorectal cancer. That particular diagnosis meant that, for the rest of my life, certain topics I had generally avoided in life would now be part of my daily life. If you are averse to certain words (like poo), please don’t read this post. However, that is one of the parts of life we all deal with. It’s just that most of us don’t really talk about it a lot.

There were also parts of my body which previously had very little scrutiny from anyone. That changed! My first visit to my surgeon was a rather shocking event for me. Of course, through the course of all this, it became quite routine. My bum was no longer a ‘private’ part.

When you hear the word cancer, your life changes in an instant. I went through six weeks of radiation and oral chemo. Had about six weeks off and then had surgery. During surgery, they removed part of my rectum and the sigmoid portion of my colon. In addition, they installed a new item on my body. It’s called an Ileostomy. They cut the end of your small intestine, the ileum, make a hole in your abdomen, and poke your intestine out, then sew you up so it doesn’t stink back in.

That little protrusion, stoma, then goes to work excreting. Since it has no “off” valve, you wear an ‘appliance’ to catch the product of it’s excreting. So, I came home with a bag attached to me just below my waist on the right side. While I drug-induced and leaving the hospital to go home, the nurse explained how to change out and apply a new appliance. When the drugs wore off, I had no idea what she said. Thankfully, a good friend had listened and helped me.

This was not my favorite part of life. The first two weeks with my new, little friend were not friendly. Unfortunately, I had a Home Health nurse who knew less than I did. My ostomy was concave so the barrier – the thing that sticks to your skin and the bag attaches to – kept popping off. She kept giving me flat barriers when I needed concave ones, but I didn’t know that. Take a moment to consider the results of that – they are very ugly and stinky. For that first couple of weeks, I was sure I would never be able to leave the house again because even my Home Health nurse couldn’t seem to figure out what to do. Even though no one could see my appliance, the prospect of being in public with poo uncontrollably being spit out onto my abdomen was rather repulsive and frightening. Particularly when you have no idea how to fix the problem.

One weekend, I was having constant problems multiple times in the day and night, and by Sunday, I only had one new barrier and one new pouch left. I knew that it would not last the day. I called Home Health – nothing. I called my Doctor – nothing. I finally left a message for my surgeon and she called back. She told me to go to the wound clinic at the hospital. I got in the car, praying desperately to be able to make it that far (35 miles) without any uncontained excreting taking place. I made it. That nurse was my heroic, superwoman, answer-to-prayer. She got me all fixed, showed me what to do, and gave me some extra supplies to get through until I could get more.

After that, my little friend and I made peace with each other. It was a whole new experience to walk around with a little bag that would randomly blow up with air (gas in case you wondered) and you would have to go to the bathroom to ‘burp’ it! If not, you would have a lump growing under your clothing that others might find distracting! Or when my little friend’s activity was noisy. It’s sort of hard to explain that you have no control.

Because of those first two weeks, I had a constant worry in the first 3 months about having blowouts. You always take extra supplies with you along with a change of clothing. Because, those blowouts are messy and stinky. You also need wipes and basically a suitcase full of emergency supplies to take with you everywhere you go!!!

While I didn’t want my little friend, I was also grateful. The Ileostomy meant I was alive. Mine was temporary, but I was ready to adjust to it being permanent. I knew that if this was what the Doctor decided was best, I would and could do it and live a great life.

Then came the reversal. This was an entirely separate adventure with all the same problems as the first one! I’ll talk about it some other time.

There are people all around you who have ostomies. There are those around you who are also dealing with other hidden things – skin diseases, chronic pain, cancer, and more. For them, whatever they are dealing with is a life-changer. In the case of an ostomy, it is also a part of being alive. I discovered lots of YouTube videos with brave people showing what the stoma looks like and exactly how to care for it and manage your ostomy appliance. I admired and appreciated what they did. It helped me know that I could live with this.

I’m so grateful to be alive. I have been cancer free for 2.5 years now and, while living with permanent bodily changes, am doing well. I try hard not to complain because – I am alive! I appreciate all of you out there who are dealing with this. Someday, the battle against cancer will be won. In the meantime – we are survivors!

4 thoughts on “My Ileostomy Adventure

  1. So interesting!! As a Home Health nurse I wish you would have had a better experience! Helping with ostomies is one of my favorite things! Glad to hear you are now cancer free!

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