My Ostomy is Five Today!
Today, my ostomy turns five. It is really hard to believe when I think back to all I have been through before and after that particular surgery.
You see… the ileostomy I have now is my 2nd one. My first one was forced upon me when I was 16 years old. I had no idea what to expect, I just wanted to stop spiking 105 fevers, stop all of the procedures, put an end to the surgeries, home nurses and treatments, and just be a “normal” teenager.
My ostomy is... permanent??
That lasted for about a year until I realized that I would be spending the rest of my young life with this thing on my stomach. It was permanent. I don’t think that word permanent really stuck in my head until about a year following that surgery (my 3rd open operation since the age of 15.) When the fact that I would have to live with a bag FOREVER really stuck with me, I truly went out of my mind trying to figure out how to either reverse the clock, pretend this never happened to me, find a way to figure out an alternate solution, etc.
I want to focus more on the emotional things I was experiencing during this time. I think talking about how we all go through an evolutionary process when it comes to accepting something so life altering and drastic is so important.
I thought everyone knew my secret
As a high school/college aged student with an ostomy, I was very depressed. I spent so much energy hiding who I really was. I thought everyone automatically knew I had a bag of crap on my stomach and it was my job to make sure I debunked some of those thoughts that my peers and classmates had. Obviously, most people never even heard of the word ostomy, let alone would even jump to the conclusion that I had anything under my clothes but that is how my mind worked.
I think we are all over-sensitive to the things that bother us. It is only natural and normal to feel that way. During that time, I did see a therapist who was good to talk to. After a little while, he suggested I try antidepressants which never seemed to help me. I know they help a lot of people but in my mind, the only thing that was helping me was if somehow I could go back to a time when inflammatory bowel disease never entered my life, I still had all my organs, I didn’t have to worry about everything I put in my mouth, whether or not my clothes were covered in sh*t because of my appliance leaking, and I could stay at friends houses, and just BE. Just be free without anxiety consuming me. It is amazing how much you worry when you don’t trust your body but over the years I have learned that my worrying was exacerbated a lot because most of the people in my life had no idea about my secret. So, if something did happen, I couldn’t just honestly explain what was going on.
My decision for a continent ileostomy
From the ages of 19-24, I made the very unpopular decision (in my parents eyes) to live with a continent ileostomy (Kock pouch). This allowed me to not have to wear an appliance, like you do with a traditional brooke ileostomy. It was my only other option given my colon/large intestine, rectum and anus had been removed already. I went through five of these surgeries since they require a lot of revisions and even though it destroyed me to go through so many surgeries, I know I had to.
I had to for me.
When I was diagnosed with ulcerative colitis at the age of 13, I was immediately put on tons of medications that changed everything. Surgery was discussed within a year because of how severe my disease was and I ended up having a total colectomy within two years of being diagnosed. Complications occurred that my parents and I never expected. I went from being the picture of health to my life changing in the blink of an eye without one warning whatsoever.
I had no control over my life in anyway
Things were happening to my body that were just thrust upon me. I didn’t know how to handle it. I didn’t know what to do. But I do know myself very well and I will never ever forget how I was feeling during those crucial years of my life when I had my first ostomy.
They were torturous. I am not saying they will be terrible for everyone but they were for me, which was why I knew deep down in my soul that I had to do something.
Even though having multiple continent ileostomies (aka kock pouches) did not pan out the way I would have liked and hoped, it was the right thing for me. It is what allowed me to accept this ostomy that I live with now and will live with for the rest of my life.
I will say it again… I will be living with an ostomy for the rest of my life. I was 24 when I made the decision to give in to my fate, which was to be a permanent ostomate. I knew I did everything I possibly could and THAT is the only reason I am able to accept that this is the way it has to be. It is what was meant to be.
I'm comfortable with myself now
I share this because I have become someone who does post pictures of myself on social media with my ostomy showing, I do now feel comfortable wearing a bikini, and I am not as hyper sensitive if the bag shows a tiny bit when I am wearing normal clothes. I am not saying I don’t care but I care a lot less. I get messages asking me how I can do that, or people saying that they wish they could be brave and do something like that but they are too ashamed.
I am here to tell you that --- that was me not too long ago! There is nothing wrong with you. And if you never feel comfortable showing your ostomy to the world, who cares!? It is your body and your life. YOU decide what works best for you. If you only want the closest people in your life knowing what you go through, then all power to you. There is nothing that says you have to get to the point of sharing all parts of your IBD (Crohn’s Disease and ulcerative colitis). Maybe you just want to show a scar you have or stretch marks from prednisone but not your ostomy. Or maybe in 20 years you will come across someone who mentions that they have an ostomy to you (or knows someone who does) and it will give you the push to share a little bit about your story with that person.
Do what is best for you
All I will say is that it did take a load off my mind when I knew others had an idea about my situation. Having said that, I know it can cause more anxiety in some if you tell others and then are self conscious because you feel like all eyes are on your stomach.
Point being, feel things out. Do what is best for you. This is tough!!! No matter how you spin it. Living with IBD is so hard and having a life altering surgery or surgeries makes it that much harder. You have the right to do whatever makes you comfortable. We all do. We have been through enough.
Have you experienced joint pain as a symptom of Crohns or UC?