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Digestive Health and Diseases

What It’s Like Living With a Digestive Disorder

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Amber Autumn

Founder, Eats and Exercise by Amber

How does GERD impact your day-to-day life?

Spontaneity and my conditions simply don’t mix. There are no last-minute brunch plans or snoozing the alarm for me or getting up and just “getting out of the house” — morning time is the most important time for me and managing my IBS-C. I wake up two hours earlier than whatever time I need to leave the house just so I can take my medications, wait the 30 minutes I’m supposed to, eat, and do what I like to refer to as “my routine,” which is me going to the bathroom as many times as I can so I don’t have an issue when I am at work or trying to live my life. Sometimes that means waking up at 3:30 a.m. when there are flights to catch or sunrise hikes to do, and a daily 4:30 a.m. alarm since I teach high school and have to be at work early.

My brain doesn’t turn off. There has been a constant monologue inside my head over matters in regards to my IBS and GERD for the last two decades. “Will this make me sick?” “Did I eat enough vegetables today?” “Why am I so bloated and distended?” “Am I flaring or will this be gone by tomorrow?” “I have such bad heartburn; do I need more medication?”

What are some misconceptions about GERD?

People don’t understand how debilitating and disheartening having IBS can actually be. People think that it’s “just a stomach ache” or some “heartburn” that can be alleviated with over-the-counter medications. Despite taking good care of myself and taking my prescription medications, there have been times where I have been hospitalized for both of my disorders that most people just write off as no big deal.  Having pain so bad that you feel like you might pass out or the discomfort of your stomach being distended to the size of a watermelon is not “no big deal.” It’s frustrating how irate my IBS can be and how sometimes I have to live my life around my intestines. And don’t get me started on the laundry list of foods I don’t eat because they are triggers for my IBS or GERD.  People think I am being “picky” or “annoying” when I won’t eat certain foods, but in reality, I’m just trying to do what’s best for my body and keep myself as healthy as possible.

What is some advice you’d offer to those just diagnosed with GERD and to individuals concerned that they may have GERD?

You have IBS, but it doesn’t have to have you. A diagnosis does not have to dictate your life. Don’t let it limit you. I made that mistake and will never ever allow that again. Just plan ahead as much as you can, and always be prepared for a flare-up or issue to occur. I brought magnesium citrate with me on my honeymoon just in case I had a flare-up and needed to treat myself.

Be your own best advocate, find out what works for your body best, and do it even if other don’t agree or understand. Never apologize for putting your health first. People who don’t support you in your journey don’t belong with you for the ride. In the beginning, it will be hard and frustrating trying to determine triggers, track everything in a journal, be patient, and eliminate foods/drinks/ingredients that cause you symptoms. You are not alone — there are tons of people who struggle, too. Finding people with symptoms similar to yours can be comforting and can offer support during times of flares. I’m always an email away for anyone who follows my blog: https://www.eatsandexercisebyamber.com/ or Instagram account @eatsandexercisebyamber

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Claudia

What advice would you give to someone newly diagnosed with GERD?

My best advice to people newly diagnosed with IBS/GERD is that they educate themselves as much as possible. They should identify exactly what foods, lifestyle, and habits alter symptoms and make the corrections immediately so that it does not become chronic and unmanageable. Consistency in medical treatments plays a very important role as well as the check-ups with your gastroenterologist and/or primary doctor to report on how symptoms have progressed and if they’ve noticed anything new.

The bad habits and the lack of prevention are two things that we must avoid at all costs.

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Erin

How does IBS impact your day-to-day life?

I have been very lucky to have had my symptoms greatly reduced over the last 10 years. From ages 17 to 22, I had extremely severe IBS with constipation that led to excruciating abdominal pain. And while I still have IBS-C, my symptoms are mild most of the time. I still have a few foods that I have to avoid and occasionally end up in the bathroom for a good 45 minutes with abdominal cramps. I chose a profession that does not have a lot of time constraints and is fairly low stress (I’m a registered dietitian in an acute care hospital), which helps with my IBS symptoms.

What are some misconceptions about IBS?

I think that the biggest misconception is that everyone’s symptoms are mild or only pose a mild inconvenience to daily life. All four years of college, I had severe symptoms which did not only involve severe abdominal pain, but also severe social isolation. I was barely able to eat for the last two years of college and was in so much pain that I was never able to experience the typical college life of going out with friends, going to parties, or even going out for coffee after class.

What is some advice you’d offer to those just diagnosed with IBS and to individuals concerned that they might have IBS?

For people who think they might have IBS, my biggest recommendation is don’t self-medicate! This usually leads to a lot of false positives. For example, if you have diarrhea or belly pain shortly after eating a food, you might try to eliminate that food, but then find you have similar symptoms with another food and eliminate that one. Before you know it, you have eliminated entire food groups. That’s what happened to me. I stopped eating high fat foods, then fruits and vegetables, then anything spicy, anything cooked with dairy, anything that was cooked outside of my house, etc. Before I knew it, I was only able to eat five or six foods and was still having problems with abdominal pain.

It’s true some foods can make symptoms of IBS worse, like dairy, fatty foods, or foods high in simple sugars; however, if you find yourself eliminating large groups of foods without symptom relief, food is likely not the main culprit.

I also recommend not joining chat rooms with non-experts or self-proclaimed patient experts. Irritable Bowel Syndrome is more understood now than 15 years ago when I started to have symptoms, but there are still plenty of myths and people who want to sell you something. I found chatrooms where people claimed to have their IBS symptoms eliminated after finding that they had parasites or drank a juice from some island that had a fruit that is found nowhere else. Look for information from experts, like the articles available at iffgd.org.

Finally, find a knowledgeable GI doctor that you trust. Not all GI doctors are created equal. Ask your doctor what they typically do to help their IBS patients, what kinds of success rate they have, and about other providers they know if you should need a different type of treatment. Never settle for a doctor that makes you feel unheard or dismisses your symptoms.

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Luiz

How does GERD impact your day-to-day life?

I was often having heartburn and could not enjoy having a meal without the pain that comes from heartburn. I also used to wake up in the middle of the night choking on the acid coming up my throat. This interrupts a good night of sleep, and the burning sensation that comes with it does not feel good at all.

What are some misconceptions about GERD?

To me, it was the fact that I thought I only had bad heartburn, so I thought this would go away soon, but it never did. GERD was so bad for me that I was borderline being diagnosed with eosinophilic esophagitis. I had a growing polyp that was almost blocking the junction between my esophagus and stomach. After taking medication, the polyp disappeared, and my esophagus became healthy.

What is some advice you’d offer to those just diagnosed with GERD and to individuals concerned that they may have GERD?

The most important advice is to seek medical advice. Once you learn how extensive the problem is, medication is available, and you can live a normal life without pain.

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