A Year of Survival: Seeking Advice for Traveling with an Ostomy Bag

Thank you, warriors, for sharing your highs and lows along this journey we share.

Today is the 1-year anniversary of the assault on my body.

I had a routine, preventative colonoscopy. I am a single mom, a daughter, and a sister. It was the right thing to do.

My colon was pierced, and I sat in sepsis and peritonitis for a week. Doctors thought a cyst on my ovary was the cause. Six days later, I had a stroke and was put into a medically induced coma for six days. During that time, I was opened to deal with the ovarian cyst. Fecal matter I had been sitting in for a week spilled onto the floor. They finally noticed my pierced colon, and I was given a colostomy.

I can't express what it was like to wake up with a different body. I did not wake up from the coma well, and that is when my stroke was diagnosed. I have balance issues and have been left legally blind and permanently disabled because after nine hours of surgery, I could not be reattached, mostly thanks to sitting in sepsis for so long and adhesions.

 

Yet here I am. A journey of a million miles, tons of therapy (physical, speech, occupational, and psychotherapy).

 

I haven't left my house for more than three hours, and my social life is non-existent.

 

But on this anniversary, I am ready to flirt, travel, and swim.

My graduation is flying to Denver, Los Angeles, and Las Vegas.

All by myself.

 

I do worry about cabin pressure affecting my ostomy bag.

Any advice, friends?

Sorry for being so long-winded. I have just been holding a lot inside.

Best news? I have a Bordoodle puppy who will be trained to be my service animal, but Zipper is a pet first.

Oh Siousxee, first let me say that my heart goes out to you. You were medically wronged and that is an assault if ever I've heard of one, but you sound like one heck of a strong warrior. Regarding your flight, how long will it be? Your bag should be fine, just try to empty it before you take off if you're not comfortable emptying in the tiny plane bathroom. Avoid chewing gum as that will increase your gas output. Will Zipper be ready to fly with you?

 

Dear Sousxee, congratulations on your anniversary and upcoming graduation. You are going to be fine flying; air pressure will not affect your bag. You are a survivor. Have an amazing trip and pop back on and tell us about your adventures.

Hi Siouxsee, we ostomates are tough and resilient, more than the average person. Enjoy your vacation, and flying is the least of your worries.

Go enjoy yourself. No worries about cabin pressure. And why does everyone worry about leaks when you're at a different location on the globe? If you don't leak at home, why worry about leaks in a different city. 🤷‍♂️

Congratulations on getting out and tackling traveling. You will be fine. I did my first trip this past summer when my wife and I flew to Seattle to see our son. Flying is not a problem with an ostomy. You just want to follow the advice of avoiding things that produce gas and watching how much you eat. I emptied my bag on the airplane on my return flight. Awkward, but doable. I did recite a mantra while doing that. "No turbulence. No turbulence." :-)

I am always amazed at what some people do while having an ostomy. There is one fellow in my local group that has had his bag for 40 years and is a mountain climber. He even did Everest with his ileostomy. Proof you can still live a full life. Just do it. :-)

Daniel

Hello! My heart goes out to you, as I was a victim of this as well, so I can relate (perforated colon during a flexible sigmoidoscopy - peritonitis, sepsis, 5 days later woke up with a colostomy). I can't imagine a stroke on top of it - the doctors told me that it is common with this scenario, and I am so sorry you had to go through it. You are so incredibly strong! I haven't yet traveled, but I'm sure you will be just fine. Love that your service animal is a pet first. Enjoy your travels. The best is yet to come!

Hugs!

Siouxsee,

Bless you bigly - hugs.

When the bowel perforates, the ramifications are long-lived, so empathy here... There are a number of us here who have learned to come to terms and overcome challenges associated with the perforation of our intestines (both large and small bowel) - for bugs travel free-form throughout the body when this happens.

Siouxsee, "Hold faith with yourself" - we seem to be 'sent' what we alone (and with the grace of our friends) are able to cope with and learn from.

Hold your intention - as obviously you do in very many more ways than most of us (I have my sight and am grateful for some abilities I have to feel my way through life).

 

You WILL be enabled - just know that your faith in yourself has brought you this far - and, whilst you are open for a special person to share your life - never give up and continue with the focus and hope that you hold.

 

My best thoughts, wishes, and special hugs come to you from the hills in Mid Wales, UK... may your days be spent in the company of many loving beings... your own K9s and animal family have so much empathy - we are so lucky they serve us with such openness and devotion.

 

Virtual hug - thinking of you...

 

A candle's flame is more than a living light - it has warmth, and a very special scent, energy, and company... Please do keep company with the living flame of an open fire or a lighted candle if your circumstances allow this.

 

Hug,

Jayne.

 

PS

Celebrate the milestones - you and Zipper have so many horizons awaiting you - there are rewards you may dream of and never let them slide - for in holding aspiration dear to your heart, you and the rest of us manifest the life we create.

 

I wonder whether your puppy will be able to help with forward info as regards your stoma management - they have so much more sensitivity in their nose to detect stuff long before we ever get wind of it (pardon the pun).

(I know, for example, some dogs, whilst they are indeed helper dogs as regards mobility, etc., they also have specialist training to be able to forward detect epileptic fits, for example - so can prepare us for what scientifically calibrated monitors are unable to monitor by fine detection - K9s have amazing aptitude in so many areas).

Good luck - and power to your elbow.

 

Waves from a wet and windy hillside,

Jayne

Do you have an emergency bathroom card? Being able to pull that out and show it to someone makes life just a bit easier. Depending on the airline you’re flying requesting medical preboard ahead of time can help things go a little smoother. I don’t know the type of bag you have, but even if it’s not a ‘burp able’ version you can go in the lavatory and let some air out if you need to. If you’ve had surgery on any joints you’ll probably notice the barometric pressure there more than anything to do with your ostomy. Enjoy!!!!!!!

Yes,  The emergency 'bathroom card' is amazingly useful! .....

When you need a loo - but don't where to go in a busy unfamiliar place / bar etc - without having to explain your predicament for all to hear -  just flash the card:

It results in an immediate undertanding - and instant help.

The cards may be obtained from your appliance provider.

They are sized to fit in your wallet/card pocket and printed with a simple message which promotes immediate ACTION :

The holder of this card has a medical conditionand needs to use the toilet URGENTLY

 

If your pouch fills up- just burp it and spray some m9 in the potty. Don’t stress. You will have so much fun! I’m proud of your inventiveness!

G-Day Siousxee, I have been wondering how your trip went and if you can give us a rundown on how things went. You have been such a strong lady with all you have been through, so I know you were able to cope with it all. Looking forward to hearing from you. Regards, IGGIE

Ladybug (excuse me if I'm wrong about that). My son is non-binary, so I am sensitive.

I found not eating for 12 hours prior to traveling gave me confidence.

I'm trying my best to post to Iggy. But I had a stroke and can't figure out how...

I hope you soon get better Siouxsee, I will be thinking of you. Regards IGGIE