Blogging One Photo at a Time


I often take photos with the idea of blogging a thought or experience. Seems I’ve been doing this for a couple of years and not posting anything here. Maybe life is just like that for me. I go with fits and starts. I’m actually a stellar starter.

Sometimes I’ve been completely immersed in the support of people who are facing ostomy surgery and don’t know what to expect. I’ve enjoyed being a healthy active inspiration to those who are sick. I was once very fearful not knowing what life would be like living with an ostomy and thought my life would be changed forever.

My life has been forever altered now that I have an ileostomy,  but along with the disruptive reminders of my limitations have been unexpected moments of tenderness and the powerful strength in resilience.

I’ve had countless quiet pensive times when I reflected on the decision to have the reversal of my JPouch and have a permanent ileostomy. All I can tell you is that the freedom from the daily agony and fear of the toilet was the best decision I made. It’s also one that I feel very protective over when people ask me innocent questions like, “did you try probiotics?” or some well intended inquiry into what could have been done.

Each time I’m given suggestions about what I could do to improve my health,  it tosses me into a defensive emotional place. Sometimes I feel sorry for myself. Sometimes I feel very empowered with how far I’ve come. Sometimes I’d rather not think about it at all.

When I do share my medical condition with people, I’m always delighted when they tell me they had no idea. I’m also routinely discouraged by people thinking they can help improve my colon health when I don’t have one. A colon. It’s been completely removed. Anyway – this post isn’t about frustration, it’s more about reflection after two years of no writing. I’ve documented much of my life in photos and routinely snap shots of things that represent emotion.

It’s tough to remember misery in hindsight. Especially when it’s sprinkled with fantastic days of wellness. Anyone with a chronic illness that has times of remission can relate to this. People with an illness that doesn’t show on the outside also knows how discouraging it is to be unwell and misunderstood.

So I’m gathering my photos and putting them into a writing challenge. To get back to posting regularly, I’ve decided the photos will be my topics. Typically they evoke a feeling or memory – each one of these does. It’s organic and free flowing but in somewhat chronological order from the last time I posted here.

Roses were Day 1 that I wrote about yesterday. I wonder if it will take me another two years to write about each of these photos. I’m constantly inspired and routinely struggling.

With gratitude for good days and a healthy sense of reality about the future, I will begin. Here’s the list so far:

  1. Roses – CHECK!
  2. I Miss Vegetables
  3. Fetal Position
  4. Counting
  5. Painting and the Art of Healing
  6. Did You Do Your Best Today?
  7. Human Body Coloring Book
  8. Go Big or Go Home
  9. Dock Jump
  10. Does This Pie Scare You?
  11. Meditation Malas and Healing Beads
  12. Iced Coffee
  13. Hello Spring
  14. The K Line Train and How to Keep Moving
  15. My Mum is My Strength
  16. Are You Feeling Trapped?
  17. Pain Chart
  18. IV Nurses and Other Bedside Visions
  19. The View from my Hospital Bed
  20. Hospital 2.0
  21. What’s on Your Shelf?
  22. Uranus Gas
  23. Uncertain Selfie
  24. Rest and Recovery
  25. Reflections From My Desk
  26. Wonderwoman Nail Polish and Power Stances
  27. Mother Mary in My Accessories Drawer
  28. Pebble Path to Cross
  29. From Soup to the ER
  30. Hearst out the Passenger Window
  31. Ice Cream with No Regrets
  32. How do you Measure Up?
  33. Beets at the Picnic
  34. Bleak Chair at Dusk
  35. Brick Walls
  36. My Hubs and Humor
  37. Defeated; a Self Portrait
  38. Grey Days
  39. Be Nice
  40. It’s Perfectly OK
  41. Showing Up
  42. WonderWoman Mother’s Day
  43. Sister Stash
  44. Room Service
  45. Stand Together
  46. Staying Connected with Snapchat
  47. Painting Even When You’re No Good
  48. Life & Love in Handmade Quilts
  49. Golf and WHITE SHORTS
  50. White Shorts 2.0!
  51. Swimming – Even Diving!
  52. White Pants!
  53. Collections and Reflections
  54. Tray of Treasures
  55. Swim Skirts and Bikinis Tops
  56. Milkshakes
  57. Heart to Heart
  58. Anniversary and the Fitted Dress
  59. Dog Days and Daughters
  60. Home is Where We Gather
  61. Saturday Dog Sketching
  62. Neighborhood Craft Day Q&A
  63. Road Trip Packing List
  64. Backup Wardrobe
  65. When in Doubt – Double Up
  66. Weekend in Mexico

Having an Ostomy – Not a Bed of Roses


Before I had my ostomy surgery, I reached out to find someone living with an ostomy, in hopes that I could get a better grasp on what it would be like. How would affect my day to day life? I wanted to know how it would feel. I reached out to a woman who had an ostomy and asked her what it was like. She replied simply, “well, it’s not a bed of roses.

This was before the internet. Before endless personal accounts and endless oversharing (like this blog 😉 ) before Google and all it’s horrifying detail and resourceful splendor.

Imagine a life without the vast resources of the Web. A time when the Information Superhighway wasn’t at my fingertips on my smartphone in the Chipoltle lunch line. I actually think it was a blessing for me because I am an image surfer. If I had Googled “images of ostomy bags” it would have been game over for me. I fainted the first time my bag was taken off and my stoma exposed. Just a little too freaky ahead of time. I’m fine now folks, but let me just say that there’s a reason we don’t have an easy view of our exiting excrement. So do yourself a favor and maybe don’t.

Everyone’s body is different and I can assure you that your own will feel and look completely different than what you see on an unnecessary search mission. Baby steps.

Also, beware of the negative posts from people who are in the midst of the challenges, or are experiencing poor outcomes or side effects. Complications are a part of this journey and no two people walk the same path. It can be enlightening, but also, it can be daunting. I try to give an honest account of what I’ve been through and sometimes it’s just really tough. Then there are days where for about 5 seconds I don’t think about my ostomy. The truth is, I can tell you it is always on my mind. That said, it doesn’t mean the awareness is negative, I am quite proud of my progress. You can be too. 

Back to my point about the days before the Internet. It was back when you had to attend support groups to get information about how to function and feel good about yourself with an ostomy. Most of the time in the early stages, you’re not even up for that. Heading out of the house feels overwhelming. I imagined I’d never wear regular clothing again, never feel confident with intimacy, live a restricted life. I imagined wearing overalls and a lot of time at home.

Now my life is limitless and I no longer feel the burden and fear I once did with this very challenging life altering surgery. The truth is,”it’s not a bed of roses”, but the other truth is, it takes time to believe you will feel o.k. again and hearing other people’s stories can really help.

So that’s my motivation – to help people who are facing the challenges of living life with an ostomy feel good about themselves and a future filled with as much adventure as they can imagine.

I just got home from a trip staying with friends. This type of simple visit used to feel very overwhelming for me. I used to dread not being home with my comforts, equipment and routines if something went wrong. What if I have a problem with my appliance and I have to manage and maneuver a change outside of my comfort zone? (it has more often than not)  What if I have to share a bathroom? (usually do) What if I forget something? (I always do) What if there is a natural disaster? (I always plan for it) What if I have a medical emergency? (it’s happened more than once)

“What ifs” can keep you from doing anything – and everything. So I prepare for the worst and expect the best. I’ve had both and it’s just as simple and as complicated as that.