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The First Time I Looked At My Ostomy

My ostomy is something I’ve rarely spoken about here and part of the reason why is because I had it during the “dark days” that I wrote about yesterday. I’m almost embarrassed about some of the reactions I had toward my ostomy because they were not reactions that an advocate of IBD should have. How can I preach acceptance and confidence when I didn’t feel that way myself? 

I’ll tell you how:

Acceptance Is A Journey

Back then I wasn’t where I am today. Acceptance is a journey and we all start somewhere. It is not a straight line and sometimes you might move backwards a few times and then move forward again. When I had my surgeries I didn’t talk about my disease; I was embarrassed of it and of myself. I did not have other friends with IBD, smart phones did not yet exist, and social media was limited. I dealt with my Crohn’s disease all alone and without support in my life or positive examples of life with an ostomy I was left to draw my own conclusions.

To be completely honest my mindset back then was, “I’d rather die than have that surgery!” I wasn’t even close to accepting my Crohn’s disease; I lived trying to hide it and feeling embarrassed and controlled by it.

Going Through the Motions

To cope with what I was faced with I turned into a robot and I just went through the motions without really feeling anything. What could I do about it anyway? My colon had to come out so I had to do this. I didn’t have time to feel anything because my surgery was not planned and this all happened in a matter of days. In no time Barb, my ostomy nurse, came to show me examples of ostomy bags and how to change them and left some for me to play around with. I remember thinking that I really wished I could talk to someone in person who had an ostomy to see what their life was like. My doctors could only tell me so much but I wanted someone who actually lived it. That night I went to bed with a dot drawn on my abdomen marking where my stoma would be located. I still felt robotic – not able to feel much 

On a stretcher in the recovery area of the hospital. I have an NG tube in and a PICC line
Blurry picture taken on a cellular flip phone after surgery.

about it at all.

After surgery it took me two days to even look at my ostomy. Part of that was because surgery was really hard on me because of how sick I was going into it. I had to get more blood transfusions before the surgery because my levels still were not up to normal. 

Disgust

The other reason that I didn’t look at my ostomy was because I was scared. Not scared of what it was or how it worked, but scared about how I would look. My priorities were all in the wrong place and I was upset that I had a scar and upset about things like the clothes I would be able to wear or not wear. I thought I was gross, I thought people would think I was gross, and I thought that no one would ever want to date me or have sex with me because they would think it was disgusting. I felt so much disgust over my ostomy that I couldn’t even look at it until I was forced to. The first time I looked at my ileostomy was when Barb came in to 

do my first bag change with me and I had to look at it. 

I looked at it because I had to; because she was standing right there trying to teach me how to change a bag. I looked at it with hatred, fear, and anger. 

Ownership

But that was just the first time I looked at my ostomy and actually within seconds my thoughts began to shift. I took an immediate ownership over it and wanted to know all about how to change the bag and care for it. In fact, after the first time the nurse changed it I would do it all by myself because I didn’t want help. I enjoyed the way my stoma moved and would make my mom watch it (which she found to be really gross but I would laugh) because I thought it was really cool. 

Love? Acceptance?

I only had my ostomy for a couple months which was shorter than I was supposed to have it. I wound up in emergency surgery because adhesions were strangling my small intestine and created a blockage that caused bilious vomiting and very severe pain. During that emergency surgery my surgeon decided to do my takedown surgery so I wouldn’t have to go through another major operation again in a few weeks for it. 

Maybe I would have loved my ostomy more if we had a good relationship but it was a little jerk to me. In the beginning my output was so frequent that I had to set an alarm every hour at night to empty it or the bag would burst open. I never seemed to get down how to keep the bag flat and it was always puffy and full of gas. I had issues from the start which caused a lot of negative thinking about it. I never even took a picture of me with my bag or a picture of my stoma (which was actually quite a nice stoma if I do say so!). That is my biggest regret, that I never got a picture of it and that time in my life. Unfortunately it just never crossed my mind and I was so sick at the time that taking a picture wasn’t the first thing on my mind. Also this was before the days when we had a camera with us at all times because of smart phones. I would have actually had to have a real camera with me and I just didn’t.

I never did accept my ostomy and I think that knowing it was only temporary kept me from learning to accept it because I knew that soon it would be gone. I’m sure if I had it longer that eventually I would come to peace with living with one or at least I hope I would. I don’t know what the future has in store for me and maybe one day I will have an ostomy again. My old GI sure loved to tell me that my J-Pouch won’t last forever because of my Crohn’s (gee thanks?!). I don’t know if I’ll need one again but if there is a next time I am definitely more prepared and have a lot more support in my life. 

Sara

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