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

Joy Podcast Interview Transcription For 2/9/2022

Intro  (0:00)

• Ostomate sister, artist and today’s guest, Joy!

• Met her on Instagram and connected there!

• Best place to find this community! Just search #ostomy on there!

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!