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StomaLife: Keeping the wig-outs at bay

2/13/2023

4 Comments

 
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Image via johnhain of Pixabay
The ideology of working smarter, not harder, is diamond. In every field I’ve worked, when I discovered a more efficient way of doing things, without sacrificing accuracy, I did my best to present it and convince the higher-ups to implement it. Amazingly, I often countered resistance, not from upper management, but from those on the same level, or lower, than I.

Their reasoning?

“We’ve always done it this/that way...”

On the bright side, for the times my idea was accepted, once it was implemented, and folks got used to it, they appreciated the time and effort it saved them, especially in environments that required lots of tasking and hectic schedules.

Presently

​In June of 2022, I had surgery to remove cancer and have a stoma built into my abdomen.

Stoma (per Google):  An artificial opening made into a hollow organ, especially one on the surface of the body leading to the gut or trachea.

Colostomy (per Google): A surgical operation in which a piece of the colon is diverted to an artificial opening in the abdominal wall so as to bypass a damaged part of the colon.

My colostomy is non-reversible.
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United Ostomy Associations of America

BagTastrophes

Now that I’ve got one, seems I’m perpetually learning to navigate life in ways I’ve never had to before.
  • No pressing my abdomen against the sink when washing something.
  • Sleeping on my side or back. No more tummy-snoozing.
  • Carrying a stoma-supply pack with me whenever I leave the house, even on short trips.
  • Ensuring the stoma-supply pack is filled out with more than I think I’ll need.
  • Keeping a change of clothing with me.

I’ve started calling pouching system (stoma device) failures, BagTastrophes. 

Confidence in the pouching systems ostomates (folks with ostomies) use, is needed. Sadly, even the best of them, they can (and do) fail. All sorts of things can cause it. Damp skin, thick output, liquid output, or a defect in the system.

MUCH to my dismay, a third BagTastrophe occurred recently.  
Not all incidents are the worst of incidents, but all of them feel pretty epic at the time. I’ve read some horror stories, and seen some incidents shared on YouTube, about pouching system failures that made me cringe!

In general, if it’s a big failure and we’re a good distance from home, without a change of clothes or a nearby bathroom, equipped to handle the situation, it’s a big challenge to clean up and get a new pouching system in place. The ordeal is as emotionally taxing as it can be (for many) physically, at least that’s my experience. Mortified is a good description.

I can’t imagine how difficult stoma life must be for ostomates with poor eyesight or restricted mobility. My heart breaks for them.

I can usually see well enough (and even carry a magnetized mirror with me), to remove and replace a pouching system. They have to be placed very carefully to prevent injury to our stomas and reduce the risk of leakage.

Past that, there’s the cleanup. It can be a huge challenge because we have to hold one hand (with a cloth, paper towel, whatever we can grab that's clean) over our stomas. We use our free hand to wash, apply whatever products we might have to use (anti-sting skin-barrier spray or wipes, paste and sometimes a few other things. Then allow for our skin to dry before putting the new system in place.

The struggle is real for me, even at home. I can't help but wonder how folks who have limited hand-useage, or maybe even prosthetic hands, manage ostomy life.
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Image via StepIntoFuture of Pixabay
​This week’s bag-tastrophe taught me to ensure my portable stoma kit is carrying more supplies than I think I might need, and a change of clothing. Even if there’s a bathroom, where we can rinse things out, wearing them wet and having to step outside in frigid weather was just... Yeesh!!!

I’m thankful the bag-tastrophe wasn’t worse. It was more than bad enough, but still could have been worse. I’m also thankful my friend (who was driving me),  stayed as calm as a windless sea during the whole episode. That was an absolute blessing because the more anxious I feel, the more my gastrointestinal system reacts to the stress (not in good ways).

Seeing she wasn’t wigging out helped my stress to a minimum, allowing me to focus on getting myself cleaned up and sorted with a new pouch as fast as possible. 

I’m happy to report that I lived through one more thing I used to believe I’d just die over.
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Image via Rollstein of Pixabay

In the know

As is, I feel obligated to tell most folks I spend time with (that aren’t already aware) about my stoma. Things like...
  • It can make rude noises that I can’t always hear, nor do I have any control over it.
  • My pouch’s filter occasionally works, and it’s not always at a good time. 
  • We have to pull over at the nearest place with a restroom because I’m suddenly, and without warning, at maximum capacity.
  • Thank you but I have to decline. My tummy’s feeling wonky and I have to stick with safe food today.
  • Nope, I can’t spend the night, but when I get a van, I can camp in the driveway! (Vans are wonderful vehicles when folks with stomas need to be away from home for lengthy periods.)

That’s at least a few points of the heads-up speech some of us give when we feel the need to warn those we’re with, about what hanging out with us might entail.

Shook

​This post came about because I’m not quite past the shook feeling from the last incident. The memories and associated anxiety tend to linger. It happens every time.

Yup. I do realize the correct term is shaken but, shook is still the better description so I’m engaging artistic license.

​The culprit

​Before I had the colostomy, I didn’t have trouble with intestinal blockages, but that changed after surgery. Since then, I’ve had several episodes. Sometimes the blockages are due to food reactions. Others are prompted by intestinal inflammation, an aspect of the gastrointestinal disorder I was born with. 

They cause abdominal discomfort and output challenges due to gas pressure or sudden overfill in the pouching system. These cause the adhesive on the flange to pull away from the skin around the stoma, which allows for leakage.

​Remedies

Ostomates, and their loved ones, have access to a large compilation of online resources, where they can learn how to live with a stoma as well as discover products and services available to help them with the challenges they face.

I’ve listed a few below...
  • United Ostomy Associations of America
  • American Cancer Society
  • Stoma and Ostomy Support Group (Facebook)
  • Ostomy Inspire

Tiny violin?

​Thanks for making it this far! I didn’t mean for any of this to come across as complaining.

I felt the need to write it so I could do my part in helping raise awareness of the challenges ostomates sometimes face in public. Too, I want to be supportive of other ostomates (and their loved ones), who’re maybe new to stoma life and are maybe feeling alone or isolated in it.

This is my way of raising my hand, to let them know they’re not. As for me, I have the Lord Jesus Christ, who has comforted, encouraged and strengthened me through every bit of this journey and maintains with me moving forward.
Don’t you be afraid, for I am with you.
Don’t be dismayed, for I am your God.
I will strengthen you.
Yes, I will help you.
Yes, I will uphold you with the right hand of my righteousness.
Isaiah 41:10
World Messianic Bible Translation
If you'd like to have some input on this post, please click the button below to leave us a comment. We'd love to hear from you!

​My thanks for your visit today, and as always, for your support of the independent blogging community.

Shalom
Comment
4 Comments
C
2/13/2023 06:34:02 pm

Howdy. Me and my brain with God’s help I am trying to help come up with something.

Reply
Angelia
2/13/2023 08:44:26 pm

C,

Great to hear from you, but I think you need a nap, lol!

Reply
Vicki link
2/13/2023 09:12:18 pm

Angelia, this is a wonderful article, and I’m sure it will be helpful to so many who have to learn the skills needed with working stoma bags. I know it was such a dread in your life, and yet you’re doing so incredibly well with it. That should be reassuring to others faced with similar challenges.
You are a shining example.

Reply
Angelia
2/14/2023 04:49:01 pm

Hi V,

Thank you for visiting and commenting!

I hope it encourages the newbies, the families with littles who've had to have stomas. There are loads of babies with stomas, and many have lots of complications with the pouching systems and skin reactions to the adhesives.

Too, the general public. Hopefully, this will be one more bit of info available to help others be in the know about at least a little in the life of an ostomate. Better we let folks know about some of the challenges ahead of time, rather than surprising them in public with a BagTastrophe, lol.

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