Living With An Ostomy: An 18-Year-Old’s Perspective
By Steven Berit
I fainted the first time I lost a tooth. Not from the actual pain of the removal, but from the sight of the blood dripping from my mouth. I also fainted during a health talk in the sixth grade. Most people would call me “squeamish,” and I would agree. The sight of blood or even the mention of anything related to the human body can easily send me into a spiral of emotions typically resulting in me waking up in the nurse’s office. So, you can imagine my apprehension when the doctors first suggested the idea of me receiving a colectomy.
Hi, I’m Steven Berit. I’m eighteen years old and I am a senior in high school. I live in Pennsylvania with my mom, my dad, and my sister when she is home from college. I live a pretty “normal” life. I go to school, play football, and hang out with friends just like anyone else my age would do. The only difference between me and everyone else is that I have an ostomy bag and they don’t. This small detail isn’t even noticeable for most, but at first, it certainly was noticeable to me.
I was sixteen when I was first diagnosed with ulcerative colitis. The next year and a half would be full of trial and error, and with each passing day the errors stuck out more and more. Mesalamine, Remicade, Entyvio, and Xeljanz were just a few of the never-ending drugs that I was prescribed. The only thing that seemed to be working was steroids, but both my doctors and my acne-ridden face agreed that this was not a permanent solution. Finally, in July of 2019 while in my latest stint on the 5th floor of the Children’s Hospital of Philadelphia, I made the decision to say good-bye to my very inflamed, friend- my colon.
I don’t remember much of the first night following the surgery, but the next couple of days stick out in my mind vividly. Well, I mean I clearly remember the restless nights. As for the actual stoma itself, this took me some time before I had my first encounter with it eye-to-eye or eye-to-intestine in this case. The second night was one of the worst nights of my life. I guess the anesthesia had worn off and with it came the regret. Yes, that second night I thought I made the biggest mistake of my life. There I laid in a hospital bed way too small for my eighteen-year-old frame contemplating if I could ever recover from this setback in my life.
Well, the sun rose and with it time for my first bag change. I remember screaming- a lot. They told me that the stoma couldn’t feel pain, but what they failed to mention was that I could still feel the pain of my hair ripping off my body as they pulled the adhesive off my skin. Trust me your average eighteen-year-old boy has plenty of hair to go around, but your eighteen-year-old boy that has been steroids for the last year and change has more hair than one would openly like to admit. But, as the bag came off, I got my first glimpse of my future in the form of a beautiful, red stump known as my stoma.
The next couple of weeks would come and go with relatively little struggle, but as summer came to an end my biggest challenge approached- going to school. I tried every possible combination of tucking my bag into my pants until I came to the realization that no one cared. Either people didn’t take notice of the bag of stool attached to my body or they too were busy and caught up with their own lives to care about what secret I kept hidden behind my shirt. It was my first time since being diagnosed with UC where I felt “normal” at school. Which was odd because to most this was the least “normal” I had ever been.
No, my journey with my ostomy was not one I would describe as love at first sight. But it has grown on me over time. Yes, I still need my parents help to change my bag every three days, but the once shrieks of pain have now subsided into murmurs. I now go to school every day like a new person. I no longer have fears of finding where the nearest bathroom is or if I am going to be able to take a test for thirty minutes without a wave of urgency coming over me forcing me to drop everything and make a mad dash to the nearest restroom. Instead, most days go by without any thoughts of UC or stomas crossing my mind.
As I come closer every day to my reversal surgery in December, I begin to wonder if I would be able to live with this bag for the rest of my life, and after some thought, I honestly believe I would be able to. UC has taught me over the years that I can overcome anything and the ostomy bag was just the latest thing I had to overcome. If I can go from fainting over a loose tooth to conquering a disease that once bullied me then I can overcome any challenges that may come my way. The once terrifying ostomy bag has become a cherished friend of mine who I will never forget even when it is gone. I cried when I had my first tooth removed. I may also cry when I have my ostomy removed, but I think these tears will fall for a completely different reason.
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My 18-year old is going through the same thing you are right now! I’m wondering how you’re doing? I know december is coming up. I’m wishing you well! You sound like you’re handling this amazingly!
Hey Christy, sorry for the late response I have been incredibly busy with school, but thank you so much for your kind words. Overall I have been doing great, and have been keeping up with the busy lifestyle of a teenage boy. I hope your son is doing great, and if he needs someone to reach out to about any questions, feel free to refer him to me. Sometimes it can be great to talk to someone who has gone through a similar situation to you. Alright, I’ll finish up now, and I’ll make sure to keep you informed following my reversal. Thanks again, have a great day!
Steven,
I just came across your article (nicely written) and felt compelled to reply; especially given that you had referenced December as an important month.
My name is Mark Walker, I live in Atlanta, GA, I’m 64 and too had UC. Your story of UC is very similar to mine. This December marks a significant month for me as well. December will be my 40th year of living with an ostomy. In these past 40 years I got my FAA pilot’s license, learned how to SCUBA, graduated college (BA, MS), married, and now have two children in college; for starters.
The point being, I would not have seen January 1980 if not for the surgery; much less any of the above. There were no revision options for me; looking back, that turned out pretty good, all in all.
Good luck next month. Whatever happens, you’ve got a world of opportunity ahead of you. Make the most of it.
Cheers,
Mark C. Walker
Thank you so much for your encouragement, this community is one of the reasons why getting an ostomy is such a blessing and I am so thankful for it. I will keep your story in mind that regardless what the outcome of my reversal surgery is that it is up to me and nothing else to make the most of my situation, just like you did. I hope you enjoy your December and let this month be an important milestone for the both of us.
Hello Steven,
It’s 3 months since your scheduled reversal surgery and I was wondering how that has progressed.
I recently had a section of colon removed due to complications from diverticulitis. I have an ostomy that my doctor says will be reversed in 3 months. My experience with having the colostomy bag on my belly is unpleasant but not horrible as I thought it would be. At least you have someone to help you change the bag when needed. I live alone and have to perform the task myself. The hair is the biggest issue when changing. That and skin irritation from the adhesive.
Anyway, I’m interested to hear how the reversal and recovery has progressed.
Thanks for sharing your story!
Hello Douglas, thank you for your response. I understand the ups and downs of having an ostomy, but I hope that it all works out in the end. It has been three months since having my reversal and I am feeling better than I have in a long time. The reversal surgery itself can be difficult. It was the first time I ever had to have a catheter, and that took some getting used to. The first two days and nights were the toughest. I had a lot of pain and a few incidents. It took me about week before I was able to start eating and moving again, but then once I started, things quickly started to pick back up. Soon enough I was home and back to a normal routine. I was back in school within two weeks and living a normal life. Today, I still have some days where my urgency and frequency of bathroom visits are elevated, however most days go fine. Those days of having to change an ostomy bag seem so long ago now, and I am so fortunate and thankful to be back to a normal lifestyle. I wish the best for you, and please contact me if you have any further questions.
Thank you for giving me hope. I am so happy you are doing well. You are such an inspiration!
I’m so happy for you that everything is going well!! My 18-year old will be getting the reversal surgery as soon as the pandemic slows down. She was supposed to have the reversal this month but they canceled! We were definitely disappointed, but here you are 3-4 months after your surgery doing what sounds like well! We have worried about the recovery time! I’m glad to hear you were back to life in a few weeks. Thank you for sharing your story!
Thank you for your kind words. I understand the anxiety headed into the reversal surgery especially during this confusing time, but I know that everything will turn out just fine. Hang in there and she will be better in no time!
My 20 year old son ended up having 2 surgeries in the same week for a bowel obstruction. He is doing better but it is taking a while for the temporary ostomy to get the right output. Is that normal to take a while. He has to keep getting sodium and magnesium. He is also very weak.