Ostomy Life

Having Ulcerative Colitis and leading to a bag in your mid 20’s with guest Joy Wilde

By LeeAnne Hayden February 9, 2022

You can find all episodes on Apple Podcast, Google Podcast, Spotify, or watch on YouTube

Joy Podcast Interview Transcription For 2/9/2022

Intro (0:00)

How It Started For Joy (1:11)

Diagnosed of ulcer colitis just shy of 21
Shows some symptoms of IBS a few years prior, but IBS wasn’t really a thing back then.
Any kind of gut complaint the doctors just wouldn’t really know.
Experienced a great amount of stress leading up to my 21st birthday and started bleeding.
Doctors did a colonoscopy and found that I had Panelcerticolitus (LeeAnne can you check spelling on this. I can’t figure it out.)
- Didn’t know why or what to do for me.
Graduated from college, moved to Alaska and started taking Azecul.
- Not many medications at the time to take for this.
- Sulfa drugs, steroid or the Azecul.
- Did a bunch of research on steroids and found they weren’t really useful.
- Seemed to help chronic flare up go away, but would come back after weaned off.
Chronic Ulcer Colitis was more bloated with me at first.
- Once diagnosed with it, it turned into having to use the bathroom every 45 minutes.
- So I was very exhausted and didn’t sleep much.
- Had a spastic colon, so even if I did not have to go to the bathroom, I felt like I had to all the time.
- Not very fun when you are in your early 20’s with this.

What Happened After Moving To Alaska? (4:13)

Started on the new drugs for everything.
Tried different diets.
- Raw foods, macrobiotics, tried specific carbohydrate diets and had some luck with.
- But I find that with gut issues, what works for one person doesn’t always work for another. So individual.
Played around a lot with diets, exercise, meditation, sleep, and I think that all of that really got me on my health journey.
- Became really interested in foods and cleanses and taking care of myself.
- Didn’t cure my Ulcer Colitis but sparked that interest I have in health and wellness.
At 25 learned about BCIR (Barnett Continent Intestinal Reservoir)
- Make a pouch out of your small intestine on the inside.
- Like an ileostomy on the inside.
- Didn’t like the idea of having an Ostomy bag, so I opted to try this.
- Had htat surgery in 2002 when I was 25.
- 6 months later I was one of 25% that experienced all of the problems.
  - So inflamed constantly and would sleep under my desks at lunch breaks because I was just so tired.
- On antibiotics all the time for 2 years straight and the doctors just didn’t know how to fix it.
Ended up having 4 surgeries in 2 years.
- One of them being my Ostomy Surgery.

Post Ostomy Surgery (10:00)

LIfe has been AMAZING since this surgery!
I am able to workout, I feel good, I can eat whatever I want and not have to worry about what is in it to give me a flare up.
There was such a thick layer of stress running in the background of where your exit strategy is if you have to use the bathroom.
- I had less than 30 seconds notice.
But ALL of a sudden, I had freedom.
DId go through Antibiotic poisoning. Too much for too long.
- Had golf ball size notuals in my legs, bruising, swelling in my feet, and having a hard time walking.
- After getting off these antibiotics and getting my external Ostomy, the nodules and everything just went away.
- My body started to finally heal.
All while still in my 20’s…. 2004 was the Ostomy surgery.

Life with Her Ostomy, Grace, 17 Years Later (13:49)

Got married and did all that.
Then divorced.
Became a crossfit coach.
I became an aerial fitness instructor.
Ashtanga Yoga Teacher for a while
Rock Climber
This hasn’t stopped me from doing anything anyone else can do.
Have a better experience of life because of it.
Once I got over the body image stuff, I became purposeful about learning how to love my body and really appreciate it and what it can do for me.
- Took me a bit longer to get here because I still did not feel sexy enough with my bag.
- But I felt like I started to really heal more when I saw more people showing their bags on social media.
- Beautiful, sexy people out there who have them that I did not know about!
Even my experience with the Flu is so different.
- I feel a little under the weather, but I don’t have that gut wrenching pain and cramps and nausea.
- Much less of an ordeal than foks with colons.

Body Image (18:01)

Yoga, Meditation, seeing other people love their bodies even in ostomies on social media.
What you can do to get over that part.
- Happened late in the game for me.
- Didn’t have a lot of body image issues until after my divorce because I just didn’t think anyone would want someone with a bag.
Joined a Sex, Love and Relationship coaching program.
- More ot og and do a deep dive into my subconscious and my feelings of worthiness, deservingness and self love.
- Very intense program that was a little over a year.
- A lot of breathwork.
- How to breathe through the discomfort.
- Very profound for me as certain meditations and breathing techniques that I ended up doing that brought so much grief and rage having my body betrayed me. Why me. Anger, rage, grief.
- Things I never really let myself grieve that loss in my life.
- This was an amazing experience and after that I all of a sudden had a connection to my pelvis again.
Going through that I felt reconnected and it really empowered me to bring on this love for my body.
My self love became an adoration and deep respect and caring for my own body that surpasses any time of self love.

Dating Life (22:24)

I always made it very apparent that I had an Ostomy.
All of the men I dated since being divorced, they absolutely don’t care!
Long term relationship now.
- Been together almost 3 years
- His mother had an Ostomy as well!

Closing (24:56)

What is one thing you would love to leave our listeners with?

I would love to see people who have to have ostomies view it as not I HAVE to have an ostomy, but I GET to have an ostomy!
It really is a second chance at life and treat it like a beautiful accessory!
It’s just this beautiful thing you get to wear outside of your body and is this amazing extension of what you are!