My first stoma was the easiest. I was sick for three years with Ulcerative Colitis and would always joke that the next step would be a bag. I guess I never really thought it would happen.
But when a surgeon walked up to my hospital bed and said, “We will be taking your bowel out”, leaving me in tears, my new reality began. When I used to say that I could end up with a bag, I didn’t really understand what it meant because like I said, I never really thought it would happen to me.
After my first surgery, I had an epidural and couldn’t feel my stomach for a few days. When the epidural was removed, I remember asking if everyone could leave me alone and give me some time to just get used to the bag touching the side of my leg, and feeling the weight of it as it filled up. I believe this was a really important time for me; it allowed me to accept my situation.
Once I’d recovered from surgery, I remember feeling amazing because I wasn’t in any pain and wasn’t running to the toilet every few minutes; I literally went about 30 times a day previously. I was so happy within myself, but very shy and embarrassed about having it. Of course I told my friends, but I wasn’t really open about it with new people. I was so worried that no guy would ever love me or accept me with it.
I was so adamant that I didn’t want another operation and told all the doctors of my decision at every check-up. This was until about a year later when I met a guy who I thought I liked, and I thought liked me back. I eventually showed him because I thought it was safe to do so. It didn’t go to plan.
He didn’t understand why I would want a bag hanging off me, when I had the option of getting it removed. I believe his exact words were, “Having a scar is better than having a bag.” He wasn’t interested in me after that, which made me feel more insecure and embarrassed about my situation. So much so, that I ended up changing my mind and decided to make an appointment with a colorectal surgeon.
So a little over 18 months on from having my first stoma, it was reversed and I was given a J-pouch. This decision resulted in more difficulties than I ever thought would be possible.
First, I had fevers that would come and go, and which doctors couldn’t explain.
Second, my bottom hadn’t been used in over 18 months. The muscles would cramp up every time I went to the toilet, and the skin around that area was so sensitive that toilet paper was worse than sandpaper. I would cry and cry every time I went to the toilet.
Third, I never fully recovered and less than four months later ended up in hospital again - quite unwell, and leaking poo from my vagina. I knew I was unwell and that I may have to have some type of surgery, but not in a million years did I think I would ever have to get the bag back.
Then one afternoon, a bunch of doctors came to my bed, pulled the curtain around me and said, “You’ve got a tunnel from your J-pouch going to your vagina; we’ve made arrangements, you’ll be transferred to Brisbane where you will get an ileostomy again.”
This time it was just me, by myself and I have never cried so much in my life.
My second stoma was by far the worst. Even though I knew what I was in for and that it wouldn’t be so bad, and was looking forward to feeling good again, I still felt devastated. I remember thinking that I’d missed my chance to find someone to love me; I was too sick in those four months to go out and meet someone, and that scared me the most.
“A scar is better than a bag”.
This time with the bag I wasn’t as shy, and didn’t feel embarrassed. I actually took a photo of it and decided to raise money for Crohn’s and Colitis Australia, and plastered the photo all over Facebook and Instagram. The cat was out of the bag, everyone knew!
I was comfortable in my skin, so guess what happened? I met a guy, who wasn’t afraid of what I told or showed him; he actually loved me more because of what I had been through, and how I still managed to be so positive and happy about life. We ended up dating, and a few months later I was told the tunnel had been fixed and that I would be booked in to get it reserved again. It didn’t seem to matter as much this time because I’d found someone who loved me for me and had told me that once the bag was removed, that it wouldn’t change the way he felt about me. This was one of the nicest things anyone has ever said to me.
So, off I went down to Brisbane to have my loop ileostomy reversed - my fourth surgery.
I remember thinking “yay, I can’t believe all of this is behind me and I can finally move on.” Life was great for the following nine months or so. I was healthy and happy, but soon realised that the only reason why I was still dating him was because he loved me even though I’d had the bag. That reason alone wasn’t a good enough reason to stay.
Not long after that I got sick again. I went to the toilet and lost a lot of blood, and knew immediately that something wasn’t right. So back to hospital I went. When I was sitting in bed waiting for my flexi sigmoidoscopy, my doctor asked me if any poo was leaking from my vagina, and I very proudly said no. No more than five minutes later, I went to the toilet and my nightmare was confirmed.
I was devastated and started to cry hysterically. Once I’d been wheeled into the procedure room I told the doctor what had just happened. I was so upset, that they quickly put me to sleep. The last thing I remember was just crying and crying, but feeling more and sleepy. I woke up, and knew my fate - that I would be having my fifth surgery, and would be getting the bag back yet again.
So now I have had five surgeries; three more than I would have had, had I not listened to a silly boy. With hopefully only one more surgery in the future, I can finally say I don’t care about having a bag, nor about finding someone to love me; I honestly couldn’t care less. If the next guy I meet can’t deal with me having a bag, then screw him!
I hope people who do have a colostomy bag or anything similar in their lives don’t believe they are incapable of being loved.
I am here to tell you that you will find someone, and they will love you for who you are as a person not what you look like.
You deserve only the best, and it’s coming.
Do you have a colostomy bag? How have you found dating?