If you are scratching your head while reading the title, then please keep reading. If you are under the impression that ostomies are for the elderly, keep reading. If you didn’t know that there are different types of ostomies and reasons for having them, then keep reading. If you are educated on all of this info, but don’t know my story, then I hope you keep reading. My whole goal is to educate and spread awareness. Also, if you are a fellow ostomate, I hope you find this post encouraging and empowering.
In 2006, I selected to have surgery to save my life by making a stoma out of my colon and remove the Crohns Diseased portion of my intestines/Rectum/Anus. I was only twelve at the time, but had exhausted all other options of treatment. The damage as a result of Crohn’s left me with no choice but to make my Colostomy permanent. Others, depending on their unique case, may only need an ostomy for a short period of time to allow healing. If your Ileum is used to create the stoma ( part of your colon is removed and part or all of rectum kept), then it is called an Ileostomy. Typically, but not always; Colostomies are on the left of your abdomen and Ileostomies are placed on the right. Some medical conditions that may lead to an ostomy include : Crohn’s , Colitis, Cancer, Hirschprung’s Disease, Injury, bowel blockage, or perforated Diverticulitis.
Why did I name my Colostomy? Well, after chatting with others that have ostomies, I realized how common it was to come up with a name before surgery as a coping technique. I was young and looking for an outlet that would make it slightly less complicated to bring up in conversation. I honestly don’t know why I chose Fred, but it stuck. ( Literally. Pun intended.) Fred is a part of me and having it for almost ten years makes it second nature.
Speaking of second nature, I don’t think I have ever missed using the toilet like it was traditionally intended. I don’t have the urge to have a bowel movement. To me, it isn’t weird at all. Fred goes when Fred desires. I poop in a bag and can empty it into the toilet when it fills up or remove the bag, dispose of it, and replace it with a new one. Let me just say how convenient that is for me when it comes to road trips, concerts, and procedure/ surgery prep. Prior to my ostomy, I wore a pull up because I had no control of my bowels and I couldn’t make it to the bathroom no matter how hard I tried. I was a mess. My bag is my blessing.
Just because I have a Colostomy does not mean I am cured and don’t have complications. I cannot be “fixed” except by Jesus. I still have Crohn’s Disease, I still need treatment, and I still need closely monitored. My bag isn’t perfect, but it makes a huge difference in my life. Living with a bag attached to you can be challenging. I have had hernia repairs due to weakened stomach muscles from numerous surgeries, I have been asked if I was pregnant, I have been bullied, and I have been accused of hiding (stealing) things under my shirt. My tummy pooches out a little from all of the cutting that has occurred over time. Do I like that? No, no I don’t, however, there is no point in sulking about it. I cannot change it, so I work on accepting it and improving on things I can do. I even considered plastic surgery at some point because I wanted a flat belly. I have never wished Fred away, but I have found myself unsatisfied with the appearance left by unsuccessful corrective surgeries using mesh. These are definitely not pluses, but it goes to show that you truly cannot judge a book by its cover and that an ostomy is not just a once and done kind of deal. Usually, you cannot see someone’s ostomy unless they show you. I will gladly pull up my shirt and show off my bag , but I also conceal it when it is appropriate to do so. As a personal preference, I typically tuck my bag into my underwear and wear some type of clothing such as a high waisted tummy controller or a camisole depending on what is comfortable to me on the given day. This isn’t necessary, but I like to keep Fred close and flush to my skin for my own comfort and peace of mind. With age and experience I altered my style choices such as not wearing tight or fitted shirts. You wear what makes you happy. I don’t feel the need to give Fred a bigger spotlight than he already has. Making such subtle changes have hushed the accusations for the most part, but I’m the one who goes to bed and wakes up with an ostomy each day. I chose to accept it and embrace it. It doesn’t slip your mind, but shouldn’t be overwhelming your conscience either.
Be you and live your life without fearing your ostomy. You can still do things you did before surgery and even things you possibly couldn’t do! Check with your doctor/ surgeon on recovery time and weight limits. Make wise decisions involving your health. Have fun. Over the spread of ten years, I have been a cheerleader, played volleyball, went on multiple mission trips ( in the United States through World Changers), gone swimming, taken beach and camping trips, gone white water rafting, taken Zumba class, been on a zip- line, been a camp counselor, and many more cool things. Take a back up set of supplies with you everywhere and pack a second set of clothes in case of an emergency. It is as easy as that! Showering with an ostomy is left up to you. You can change the whole thing, part of it, or wait and change the appliance after you’ve bathed. This will depend on the frequency of your output and the duration of wear time with your specific type of bag and wafer. Water won’t hurt it.
Love yourself and so will others. Attitude is everything when it comes to body image and confidence. Know that your ostomy doesn’t make you, but that it adds to your individuality. If you have a positive (or negative) outlook, then others will feed off of what you are putting out. In all honesty, it takes time to adjust to having an ostomy or knowing someone with one. It is a learning experience like other changes in life. Go on dates. Don’t think that no one will love you or want to be close to you. If you are in a relationship with an ostomate, communicate about how you feel. Take chances.Wear a bikini. Take pictures. Be open and accept/ask questions. Don’t put yourself down. You are beautiful. Ostomies are not gross, they’re simply an alternate route for waste to exit the body. Have good hygiene and some Poopourri spray and you are set! Tadaaa! No one even has to know if that’s how you want it.
Network!! This is a big deal to me. I would not be who I am today without the advice and mentoring from ostomy nurses, ostomy patients, and camps such as Youth Rally and Oasis. Getting to know others that are going through similar situations makes the biggest difference. No one wants to feel like they are alone in their suffering. It is easy to say or assume that no one understands, but that just isn’t true. Find a pen – pal. Read people’s stories. Research different support groups or Facebook pages. When I was first diagnosed, I didn’t know anyone that knew what I had or what it even was. I didn’t start meeting or hearing of others like me until I was sent to the GI floor of the children’s hospital to be treated. Once that door opened, people started coming out of the woodworks. I was told about camp for kids and teens with Crohn’s and Colitis, I was introduced to Child Life Specialists, and camp for kids and teens with ostomies. Since then, I have come across many awesome stories and people that have had major impacts in my life. I have had the pleasure of being closely involved with four individuals and their journeys with Crohn’s and ostomy surgery. Each one was a learning experience and a blessing. I highly recommend getting connected with others. You can learn so much about them and yourself.
If you have read to the bottom of this post, thank you. This matter is so very important to me. I felt inspired after reading personal stories of others who are struggling or who are triumphant in their battle. No two stories are the same. If I said something to offend or upset you, please forgive me. That is never my intention. There is only so much sugar coating you can do. Poo is still poo and everyone does it one way or another. Feel free to share it, contact me, or let me know what you’d like me to write about next.
-Lacey