Coping | IBD | Ostomy
My name is Brenna. I am almost ten years old. When I was seven, I woke up one day with stomachaches and bloody poop. After my doctor sent me to a pediatric gastroenterologist, he suggested a colonoscopy. That was the first time I had anesthesia, and it smelled really bad. That is how I was diagnosed with ulcerative colitis. I was put on steroids but first I had to learn how to swallow a pill, which was really hard for me. I puffed up like a balloon and my chubby face annoyed my sister more than me (which is weird). My doctors tried lots of different medicines (including some that went up my butt!) but none of them worked. Then we tried Remicade, which I didn’t like getting because the IV needle hurt my arm, but then we got a special cream to numb my skin. The Remicade worked for a little while but then didn’t. Then my mom had to give me shots in my butt, but that didn’t work either.
About four months after I first got sick, we started planning a surgery to remove my large intestine. I was really upset about that because my family had to cancel their vacation to London. I thought it was really nice of them to cancel their whole vacation because of me. (We got to go a year later.)
My first surgery was to take out my colon. My surgeon was really funny and played Lady Gaga in the operating room because he heard I liked her. I had mixed emotions about having surgery, because I was happy I wouldn’t have colitis anymore, but it was my first time having surgery and I felt scared and nervous.
A while after my first surgery, my stoma started prolapsing, which is when it comes sliding out of the space on your stomach. That really freaked me out and my mom had to make me a special stoma belt out of elastic to keep it in place.
I ended up having three surgeries all together, and now I have a J-pouch. Between my first and third surgeries, I had an ostomy bag which I emptied by myself (but my mom helped me change the wafer twice a week). I named my stoma Rosie and I decorated a special ostomy bag to wear at my 8th birthday party.
Today I’m happy I got the surgery because I don’t have ulcerative colitis anymore, but unfortunately my J-pouch gets infected and I have to take antibiotics. But now I am really good at taking pills so it doesn’t even matter that they are huge. Now I feel like the bravest girl in the world because I had three surgeries, and I know I can do anything when I put my mind to it.
Brenna,You’re a brave girl! You have a really good & positive outlook, which I believe is the most important when dealing with all these surgeries! Me and my mom used to call my stoma’rosebud’. That therapy dog looks like a good companion too!
Keep rocking girl,
Nora
Hi Brenna, WOW what a brave girl you are. I am so proud of you and how strong you are. I have Crohns disease and I have had alot of surgeries too. I also took that YUKKY medicine prednisone. I am going to have another surgery really soon. I have to have a colonoscopy first so the doctors can see where they need to take out the sick area. Now I wont be so scared this time because if you can do it and be brave, then so can I. I will see if the surgeon will play Lady GaGa for me too! 🙂 Thank you for sharing your story and helping people like us get through this together. I hope your feeling good now so you can enjoy your summer! Thank you again, Debbi in Oregon 🙂
Hey Brenna! I’m 18 and I have Ulcerative Colitis, but I was diagnosed a bit older than you at 14. I haven’t needed surgery so far and the thought of it scares me a little, so I’m definitely impressed by your bravery and resilience. I hope that if I ever need surgery that I have the same surgeon as you because I think it is super cool that he let you cho
*choose the music! Best wishes, and I hope you have a great summer!!
wow Brenna!
you are now officially the coolest 10 year old around! i have had my colon removed last year and i’m still waiting for my takedown. and i can tell you at 34 years i am not half as brave as you are. but i do have a little dog, so i will ask him for help.
thanks for posting this and i know your parents must be very proud of you! and yes, you can definitely do anything you put your mind to!
marie from germany
You are AWESOME! So sorry to hear you have had to deal with all of this, especially at such a young age. But it has made you an absolutely brave, strong, and beautiful girl! I have UC and have had a j-pouch for 8 years now (almost as long as you have been alive!) I know you have faced some tough times, but now you know you CAN DO ANYTHING! Awesome job. And I am with you…it sure seems that all the medicine we take have HUGE PILLS! Whew!
Thanks, everyone, for the supportive comments. Brenna was very proud and grateful when she heard all the wonderful things people had to say about her! And yes, we are VERY proud of her — she is amazing!Jennifer (Brenna’s mom)
Dear Brenna,
We are very proud of how you handled this adventure in your life. Life is never easy but, your positive attitude and love of your family and friends kept you cheery. Your sense of humor throughout was a delight to see. In grandpa and my eyes you are the bravest young lady we know. Hugs and kisses, Grandma Jocie and Grandpa David
Hey Brenna, your story sure sounds familiar. I first got sick when I was seven years old too, and at age eight I was diagnosed with Crohn’s disease. I had steroids which made my face puff up made it hard to sleep. At first I couldn’t swallow pills either, and I remember crying the first time I had to have a blood test, but just like you, I learned to be brave. I’m nearly 20 now, and I’m just about to have a big surgery and it’s a little scary, but hopefully I can be courageous like you.
You should be proud of your story, thanks for sharing it.
Love, Danni -New Zealand
p.s. Your ladybug pillow rocks.
Hi BrennaI am so happy to hear that you don’t have colitis anymore and it is clear that after all you have gone through you definitely can do anything you put your mind to!
My daughter is six and has colitis. Next week she will have the same surgery as you did. She is very brave as well. I will show her your picture and read her your story so she doesn’t fell alone. She has had to do all of the yucky things you had to when you had colitis too. She has had it since she was only three!
I wish you a life of health and happiness and thank you for sharing your story.
Sherry
Brenna: Even though I am not officially your Aunt I feel that I am since I have known you from the day you were born. You are a true inspiration to so many children and adults as well and I just wanted you to know how proud I am to be part of this incredible family. I only hope that I will be able to leave such a legacy to someone as you have with your incredible story. Love You Auntie Sharon
Brenna,
I have a five year old daughter named Ellie who was just diagnosed with IBD. Thank you for telling us your story! It helps our whole family, especially Ellie, to feel braver for what lies ahead. You are amazing!
Deanna
Deanna,So glad Brenna’s story was helpful — we love sharing it so that other kids know they are not alone! I hope Ellie feels better soon and wishing you strength on your journey.
Jennifer (Brenna’s mom)
I think you are beautiful and brave x