When IBS Attacks in Public: Life with Gut Health Issues

Life with IBS and Gut Health Issues

What I Want You To Know When IBS Attacks in Public

Suck it up and hold it“, he says, as we’re driving down Taiwan’s East Coast highway with nary a bathroom in sight for miles.

That spring of 2012 was a brutal year for me. I was a few years into my Axial Spondyloarthritis diagnosis and one year away from my fibromyalgia diagnosis, but the stomach and rectal pain started in 2001 well before I knew I was sick. I hadn’t told anyone about it although if people were looking for signs, they were there. I have plenty of bathroom mishap stories for the past 20 years. By the time I got my IBS diagnosis in 2013, I’d already been living with it for 11 years.

But when 2012 came along and brought everything to a head that spring, that was the first time I remember being angry at loved ones for showing no compassion or understanding. It’s not an easy thing to ‘suck it up and hold it’ when you’re living with gut health problems.

My parents were visiting us for the first time in Taiwan in 2012. Whenever anyone comes to visit, inevitably road trips become a part of life, but for the IBS patient, ‘road trip’ can be synonymous with hell.

That has never changed for me. What has changed is how I prep for those trips, but every IBS and IBD patient knows that there’s no way to avoid it when the urge strikes. We can prepare all we want and still be left in the most embarrassing of situations.

Still ashamed to this day by my sudden urges to go, I remember that day clearly because it was rough. My husband and my parents were not listening to me when I said that when I have to go, I HAVE TO GO. How do I make them understand that there’s no time to wait? There’s no way to hold it. When it comes, it comes. That’s reality with living with IBS.

I remember my dad saying some harsh things to me during and after that car ride while my husband showed no sympathy whatsoever. To their credit, they didn’t know what I was dealing with, but it’s not like I hadn’t had these things happen before. I chalked it up, once again, to people thinking I’m being a drama queen or a hypochondriac, which is something I’ve had to listen to for decades.

But why can’t we show sympathy and understanding when watching a loved one, or anyone for that matter, clutch their stomach in agony in the back seat of a car while said person is desperately running through every trick in the book to try and stop that tide from rolling in? That’s definitely not the time to joke about said person having a small bladder, by the way. I hear that one a lot too.

It’s estimated that 10-15% of the world population has IBS.

Source: https://aboutibs.org/

The Canadian Digestive Health Foundation shows that Canada has one of the highest prevalence of IBS in the world. 18% of Canadians live with digestive health issues and more than 70% of them indicate that their symptoms interfere with everyday life. Visit the website for more information.

So why aren’t more people aware of this? It’s not a small percentage of people who are living with IBS or IBD. It’s not like we haven’t heard these stories before. Growing up, I remember learning about several friends who were living with IBS and/or IBD in high school. My boyfriend in high school lived with Crohn’s. I remember visiting him many times while he recovered from his first bowel resection surgery. (IBS and IBD are not the same thing, by the way. But the similarities are there.)

Yet, to this day, very few people show that they understand it or that they’re aware of it.

By the time we made it to a bathroom that day, I’d already messed my pants. After that incident, which is one of dozens that I’ve had over the years, I swore I’d get to the bottom (pun intended) of what was going on with my gut. It turns out all that time I had IBS and had every classic symptom in the book. I still have no idea why it took so long to get a diagnosis given the extent of my health issues.

I’ve already mentioned I have fibromyalgia. 70% of fibromyalgia patients, for example, have IBS while 65% of IBS patients have fibromyalgia. Thus findings have shown that fibromyalgia and IBS frequently coexist.

READ:  Costochondritis: Chest Wall Pain with Arthritis and Fibromyalgia

I also have AS and guess what? IBS and AS go hand in hand. Lucky me.

Between 5 and 10% of cases of ankylosing spondylitis (AS) are associated with inflammatory bowel disease (IBD), either Crohn’s disease or ulcerative colitis. A much larger percentage of AS patients have subclinical gut inflammation manifested either by endoscopic findings or by histology.

Source: https://pubmed.ncbi.nlm.nih.gov/16777576/

In the years leading up to my diagnoses, I’ve gone behind bushes and done my business on road sides. Like every IBS and IBD patient, I’ve got plenty of horror tales of being stuck on public transportation with nowhere to ‘go’. I’ve also gotten caught while shopping and driving.

I vividly remember one incident when I was walking back to school in 2006 that was super embarrassing. I was less than two minutes from my school but knew I had to get up four flights of stairs to get to the bathroom. Impossible. Instead, I hit up a McDonald’s and ended up creating a mess in there as well as having to buy new clothes before heading back to class.

Lesson 1 in 2006: Pack an extra pair of undies and a pair of pants when you leave the house, just in case.

When I got my IBS diagnosis, I naively thought that everything would go away now that I knew what I was dealing with. Surely my doctors could help me improve my day to day life? Would it be possible to stop worrying about where all the bathrooms are in case my body decides it needs to explode on me?

Sadly, it was the beginning of a long and shameful journey that hasn’t stopped. IBS affects my daily life. When it hits, I usually have less than five minutes to find a bathroom.

To add to the stress, bathrooms in Taiwan are hard to find and equally as hard to access. Restaurants reserve bathrooms for patrons only. Supermarkets have bathrooms, but since our supermarkets are usually several stories, taking an elevator to another floor to get to a bathroom never allows for enough time. Public bathrooms are few and far between. I could be wrong, but I’ve yet to see ‘I can’t wait’ cards here in Taiwan.

It might amuse you to know that diarrhea was one of the first dozen words I learned in Chinese when I moved to China in 2003. The Chinese word for diarrhea translates to ‘hot belly‘ and let me assure you that screaming it tends to get some notice when you’re running around with your hands clamped to your belly while looking for the loo.

It’s stressful having an IBS attack and not being familiar with your surroundings, and then awkwardly having to ask an employee in Chinese where the bathrooms are or if I can jump the line. Restroom challenges are bad enough for people who experience restroom distress in Taiwan, even though there are more than a dozen categories of people who are affected by it.

Add a wheelchair to the mix and forget about it. Why bother to leave home? Taiwan has massive accessibility issues and these issues haven’t improved in the 15 years that I’ve been living on this island.

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On average, most adults experience acute bowel episodes at least once a year.

Whether you’re living with IBD, IBS, Celiac or other chronic medical disorders; whether you have an intestinal infection or you’re taking prescription or non prescription meds, or whether you run into problems with too much caffeine or foods that don’t agree with you, I can tell you that millions of people experience this regularly.

MySeveralWorlds.com

The list goes on, so why aren’t we talking about it?

We’re not talking about it because we’re not supposed to talk about it. It makes people uncomfortable.

While today’s topic still seems taboo, I’ve been working on this post for a while now and I’ve finally decided to publish it in hopes that it reaches other IBS and IBD patients who are likely facing this situation alone for the first time.

I’ve learned with my health issues that suffering in silence doesn’t help anyone. I need to be vocal otherwise people will never understand what it’s like. I’m talking about it for the first time here online and baring my bottom woes for all to see and it’s strangely cathartic. Perhaps someone reading this will nod their head in agreement at reading some of the things that have happened to me and know that they’re not alone.

Common symptoms of an IBS attack include:

  • diarrhea
  • chronic and crippling stomach pain
  • bloating
  • gas
  • constipation
  • mucus in stool
  • nausea
  • intestinal spasms
  • regurgitation

Having gut pain and diarrhea is no joke. It’s hard to live with and it’s embarrassing having to put your needs first, but it’s better than making a mess in your pants or having to hide behind a bush. Having no place to go just adds to the stress of living with Irritable Bowel Syndrome.

I wish more people would talk about their IBS and IBD symptoms so we can move forward with normalizing it and learn to treat people who need to use the bathroom with kindness and compassion.

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While it’s never easy to talk about, especially when it’s happening to you in the moment, it’s imperative that we speak up. Speaking up doesn’t just help us cope with our daily struggles with IBS. It empowers other IBS and IBD patients to speak up too. The more we talk about it, the less ’embarrassing and disgusting’ it becomes.

Additional resources:


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Post Author: Carrie Kellenberger

I'm a chronically ill Canadian who has been living in Asia since 2003. I moved from China to Taiwan in 2006. I'm an experienced businesswoman and have worked in many leadership positions in Asia. In addition to my own work, I've been writing professionally about Asia, travel and health advocacy since 2007, providing regular content to publishing companies and travel publications in Asia and North America. I started writing about my health journey in 2009 after being diagnosed with Ankylosing Spondylitis. In 2014, I was diagnosed with Fibromyalgia and ME/CFS, which came with other massive health issues. These diagnoses were the start of my journey as a health advocate and patient leader. Since then, My Several Worlds has been recognized worldwide as a top site for AS, fibromyalgia, and chronic illness by WEGO Health and Healthline.

6 thoughts on “When IBS Attacks in Public: Life with Gut Health Issues

    Sheryl Chan

    (July 3, 2021 - 2:16 pm)

    Thanks for sharing about these experiences, they need more awareness and empathy. I totally get the ‘can’t hold it it’. I had meds that did that to me once and literally just exploded in the carpark. Embarrassing. But my partner was very empathetic and helped me out. The worse part was the bathroom was literally 20 metres away but it was too late!

      Carrie Kellenberger

      (July 3, 2021 - 2:51 pm)

      Amazing that it can be SO close and yet so far! I have done ok this year since switching meds and keeping a firm hand on my diet, but you never know when things will change.

    Claire

    (July 3, 2021 - 4:47 pm)

    IBS definitely needs more awareness, but of the right kind. I think most people know what it is, but not how awful it is to deal with sometimes. I have flare-ups now and then and it makes me want to stay at home. Thankfully I was able to see a dietician and we worked out which high fodmap foods were causing a particular issue for me. It doesn’t solve the problem entirely, but helps a great deal.

      Carrie Kellenberger

      (July 12, 2021 - 3:01 pm)

      It seems to me that a great number of people don’t know the difference between IBS and IBD. All of it is under some sort of blanket ‘stomach problem’ thing.

      Yes, you’re right. Being on the right diet helps a lot, but that always strikes me as funny because people then question what you eat or make fun of what you eat.

      I know someone with IBD who rolls her eyes when I pass on something and I always think to myself that if anyone can understand, it should be her – but nope. It’s like they can only imagine it for themselves and can’t make allowances that diet and IB problems are different for everyone.

    Treva

    (July 5, 2021 - 12:35 pm)

    Nodding along with you. If I had evening plans with friends, I’d make sure not to eat dinner in hopes of avoiding an attack while out. Or if the plans were dinner, then I’d make sure to head home right after. Bus or car trip? Hike? Better not eat anything at all that day. Always scouting out the bathroom when I arrive at a place or avoiding places where I think there might not be one. Leaving parties early and trying to lightly say, “Oh, my stomach’s acting up again,” when it’s taking EVERYTHING I have not to be hunched over and moaning as another wave hits… It becomes just easier to stay home, but because we can’t talk about anything related to bowel movements, you can’t explain to people in the lurid detail needed to make them really understand WHY.

      Carrie Kellenberger

      (July 12, 2021 - 2:58 pm)

      Hi Treva! I was so happy to see your name pop up and then sad to see that you’ve had the same experiences as me. I wish we had talked about this together when we were both in Taiwan. Perhaps it would’ve made things easier on both of us.

      It’s such a frustrating aspect of life and it’s ridiculous that people feel they can’t talk about it. The point you made about leaving early and saying your stomach is acting up while you’re fighting with everything you have not to be hunched over and moaning really stuck out at me. I can’t tell you how many times that has happened to me. I can say that I’ve left John at events and called him after I got home and after the worst had passed. There’s no way you can go wandering through an event looking for the hubs to say ‘gonna be in the loo for the next hour or so’.

      Thanks so much for stopping by! Sending hugs to you and the fam.

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