I reached out into a bloggers group online to see if I could collaborate with anyone, so we could share different experiences. Leelo got in touch with me wanting to be a part of it, so here it is. Q&A with Leelo!
My name is Felicia, but I go by Leelo. I live in New York State in the US. I’ve been sick my entire life – I couldn’t even breast feed as a baby. My entire childhood, my mom tried to get a diagnosis but none of my doctors would give me proper testing. I was diagnosed with GERD and IBS, and told it was all in my head. My mom helped me with elimination diets for years. I tried lactose free, gluten free, FODMAP… nothing seemed to help.
I developed an eating disorder when I was 16 due to being unable to control my symptoms. My belly would bloat and I wouldn’t know why… I’d have “attacks” that wouldn’t let me leave the bathroom for days… I’d get what I called “salami burps” that would last for days… I’d faint for no reason… I would get physically sick with no triggers… I would bleed and have no reason for it… this went on for 24 years.
I was finally diagnosed with Ulcerative Colitis and Ileitis in 2015 when I was 25 years old. Six months after diagnosis, I required emergency surgery to remove my colon. One year later, it was made permanent.
Why do you have a stoma? I have an autoimmune disease, IBD, it was attacking my colon. I tried different medication, steroids, a type of chemotherapy (remicade), but nothing worked. It got to point where I was going to die. IBD can kill. It can lead to cancer. I was told I was being prepped for emergency surgery. “You’re going to lose your colon.” – Yay!
How long did it take you to recover from your sugery? Its tricky, my recovery wasn’t typical. My surgery was an emergency with a lot of complictions, infections, I needed a feeding tube. I was in hospital for a month after surgery. Recovery should be 1-2 weeks maximum. I had every complication. I couldnt walk, and my hair was falling out.
What foods do you tend to avoid? There is a list of foods that can cause problems. Whole nuts are difficult to digest properly. Foods with skin ie. apples, corn, raw vegetables i have to cook or peel. Anything that is difficult to digest for a person without a stoma would not work well for me.
Can you sleep on your belly? Yes! I have a stoma sheild, which protects my stoma.
Does your stoma move? Yes, its part of my intestine so naturally, they move! They expand and contract. My intestine doesnt realise its outside my body so it carries on moving.
Does it smell? The stoma itself no. The output, depending what i eat, can. I use deoderizer which reduces the smell. it doesnt smell any worse than a regular persons ‘output’. But you can’t smell it through the bag.
Does it hurt? No. I have a hernia which hurts when it is pushed out. If i have a blockage or partial blockage, that hurts. When I have a blockage, I normally drink coca cola which helps it pass.
Can you feel your stoma? The stoma doesnt actually have any nerve endings, so I can touch it, pinch it or even cut it and I wouldnt feel it.
Why is your stoma so long? People think my stoma is prolapsed. Stomas tend to be around 3cm long, but mine is around 4 1/2-5cm long. My surgeon did it on purpose to avoid leakage problems.
Have you named your stoma, if so, what is it called? Stella Von Toots.
Is it permanent? Yes, mine is. I did want it reversed originally. I found out I had active IBD in the stump they kept for the reverse, so they couldn’t do the reversal and I kept Stella.
How has it changed your life? Wow. Well a lot of people before surgery will go to support groups, or go online and speak to people to talk about how miserbale IBD makes them. After surgery and recovery, you dont hear from them. Unless im having an issue im quiet. Its changed my life for the better. I had the wrong diagnosis for so many years. I couldnt eat a lot of food, I couldnt drink a lot of drinks. I was housebound, I couldnt excercise. I was miserable before surgery. Now 2 years out of getting Stella, im competely healed with exception of complications, abscesses and my hernia. My life has flipped. I still have inflammation, nausea and ileitus. But I can manage this now. I picked up a new hobby and now I can make teddy bears which I couldnt do before surgery. Stella has made my life so much better.
Thanks for taking part Leelo!
Check out Leelo’s YouTube Channel here!