Briefly share your illness journey, what was the diagnosis, how long were you ill, and was the decision to have ostomy surgery yours or was there an emergency operation?
When I was 11 years old, I was misdiagnosed as being lactose intolerant. I underwent a colonoscopy to finally get some answers, only to end up with a perforation and told I had Crohn’s Disease. I was rushed into an emergency laparoscopic surgery. It didn’t fully correct the problem, so I went into surgery again. I woke up with an ostomy and was NOT happy. I began to accept my ostomy because it was giving me a better quality of life, but I still hated it. I remember crying in my bed and to my mom because it was such a big change in my life; especially since I was only 11 years old. I wanted to play, run and be active during summer time, but was told to do only the opposite. I couldn’t run, jump or play since I was still recovering.
When I started fifth grade I was told I could get my ostomy reversed. So, I underwent surgery yet again, but this time was more exciting since I thought I was finally going to be “normal” again.
I was living life and doing well up until the summer after my sophomore year of high school. My medication to put my Crohn’s into remission did not work anymore. My doctors took me off that medication, but I went a whole month without being on anything to control this awful disease. My disease, therefore, got ahead of me. At age of 16, I made the courageous decision to undergo another ostomy surgery. I wanted my quality of life back. I didn’t care about boyfriends or what my friends would say as long as I was able to go out in public and not have to worry about finding a bathroom. I am 18 now and have not regretted my decision to get my ostomy back. I have enjoyed being active, taking school trips, playing sports normally, and even attending school dances with zero worry about where a bathroom is. An ostomy might not be the sexiest medical device out there, but sure is a miraculous one. Thanks to my ostomy I now have my strength and quality of life back.
What was your biggest fear?
Not being able to be liked by a guy due to my ostomy.
Was there something you were worried you would not be able to do after your ostomy surgery?
Play softball and wear tight-fitted clothing.
Did those fears become a reality or were you surprised you could actually do what you were worried you couldn’t?
I was relieved when I found a solution to wearing tight clothing and having an ostomy. Honestly, just asking nurses post operation you find out many tips and tricks.
How has your ostomy changed you?
I am now myself again. I’m back at a healthy weight, have less to stress about health-wise, can eat whatever I want, and can go on with my life.
What helped you most during your recovery?
My family. Having a support system that is there for you 24/7 helps a lot. It’s not just physical pain and soreness you go through after ostomy surgery. You also go through a lot of emotional stress and anxiety because it is such a big change, especially if this is the first time anyone in your family has had to deal with this.
Did something help prepare you for your operation? If so, what was it?
I used to talk to a therapist when I was really sick. She helped me through some depression and anxiety due to being so afraid of going out in public because of my disease. She helped my come to realize that this was the best option for me and my quality of life. Also, my parents motivated me and put a good image in my head about what my life was going to be like after my operation, and in the end they were right.
Was there a specific WOC Nurse or a doctor who helped you that you’d like to thank?
I would like to thank the Rochester Gastroenterology department for their amazing care and support throughout my journey. Specifically, to Dr. William Faubion for being there for, not only me, but also my family through good and bad times with my health.