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About Crohn's Disease

Things People with IBS Are Tired of Hearing

When I received my initial diagnosis of irritable bowel syndrome (IBS) almost 10 years ago, I naively thought that all my digestive issues would be a thing of the past. Now that the doctors knew what these unrelenting symptoms were, surely they could fix me.

Fourteen-year-old me was wrong. It was only the beginning of a very long and emotional journey. Conditions like IBS affect eating habits, daily life, and social agendas.

I’ve come to terms with the fact that suffering in silence with a digestive condition is counterproductive. While I previously tried to hide it from everyone but my mother, I now talk about my health on the internet, baring all for the world to see.

And it’s strangely therapeutic.

But when you share your story, you’re also privy to some weird and wonderful comments in return. As it turns out, everyone else has an opinion on it too.

Let’s talk about the 12 things that everyone with IBS is tired of hearing.

Because they’re definitely more of an expert than the various gastroenterologists I’ve seen, right? Whether or not they think this pearl of wisdom is helpful, it’s tricky to know if I should roll my eyes or accept that they’re trying to be sympathetic.

There’s always that one person who feels the need to add their card to the pile when I acknowledge or talk about my IBS. Their stomach pain is so much more painful than mine apparently. And if I try to top that, watch out! Oh, how I wish it were only a temporary bad stomach.

When I air out my digestive issues, it’s natural to expect a few responses. However, there’s usually someone who indulges a little too much. And 90 minutes later, I’d probably be able to pass a quiz on their entire GI history.

I know they’re trying to empathize, but IBS isn’t something a person just “gets once.” For starters, people only get diagnosed because they’ve had symptoms for months, or longer. If only IBS reared its ugly head just the once and then disappeared altogether. My problems would be solved.

The wonderful thing about invisible conditions like IBS is that I probably do look fine on the outside. And I suppose it’s a compliment that I look like my normal self when there’s so much inner turmoil going on. But if someone had a broken leg, people generally wouldn’t tell them to suck it up and walk on it. Just because IBS can’t be seen it doesn’t mean it’s not there.

what can you eat

Usually delivered in tandem with a heavy sigh and a roll of the eyes. I understand it’s frustrating that I have dietary requirements, but it doesn’t help to make me feel awkward about them too. It’s already bad enough I’ve had to give up chocolate, cheese, milk, dairy, butter. But look, I’m still here, walking and talking — so I must be able to eat SOMETHING.

you just need

Yes, good food and exercise can help ease symptoms. But in some cases, they can also exacerbate them. So it’s a little unsympathetic to assume everyone is the same and that the solution is so simple. When someone tells me this, I understand they’re only trying to help. But it’s slightly frustrating to assume I’m not already trying.

Surely everyone’s aware that even Her Majesty the Queen goes for a number two? Although it’s not the most pleasant thing in the world to go through, I’d appreciate a bit more of a dignified response. But this sort of comment makes a person feel embarrassed for opening up.

rubbish

That’s what I tell myself too when I’m sitting on the toilet for the seventh time that morning. I don’t believe in this malarkey, either! If only IBS were a myth — it would solve all my problems.

in your head

We’ve all heard the phrase “mind over matter,” and to some extent it’s true. With IBS, worrying about symptoms flaring up invariably means that symptoms do flare up because of the anxiety. I can’t win! But saying it’s all in my head? That’s insensitive and downright inconsiderate.

you were better

I thought I was finally at the tail end of my symptoms, and then, oops, there I go again. It’s back to the IBS grind. What I’d like people who don’t have IBS to understand: I’m tired of being controlled by my digestive system, but I can’t help it. I’ll probably never be 100 percent better, but I’m doing my best. It’s frustrating, but I can work around it.

won't hurt you

Say I have 10 cats, and someone allergic to cats comes over to visit. Would getting rid of nine of the cats mean that person doesn’t have an allergic reaction? (No.) If I could eat that creamy, melted-in-the-middle, warm chocolate pudding, I would. But I can’t.

Admittedly, it’s difficult to know the right thing to say to someone who suffers from IBS, because from an outsider’s perspective it can be frustrating to not know how to help. I remember my mother being in tears because she felt powerless to help me. It can be tricky to know what will be the most helpful thing to say.

But please rest assured, sometimes I and others like me just need a sympathetic ear (and a toilet close by). Your support means more than you know.

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About Crohn's Disease

An Invisable Disease

Crohn’s and colitis are considered invisible illnesses because the diseases aren’t visible on the outside. So, while someone may look fine, their intestines may be inflamed and ulcerated, they may be in excruciating pain, and their immune system is essentially attacking itself.

Because Crohn’s and Colitis are invisible disabilities, some passengers may feel that they will be judged by asking a member of staff for help or having to spend time trying to explain their symptoms.

Imagine suffering from debilitating chronic pain. Every step you take causes discomfort, and it’s perpetually at the forefront of your mind. The internal battle you’re fighting takes mental and physical energy and just going through daily tasks can be debilitating. However, those looking at you may have no indication you’re suffering, let alone that you have a chronic disease. You suffer from an invisible illness.

WHAT IS AN INVISIBLE ILLNESS?

An invisible illness is one that does not exhibit externally visible signs or symptoms. Those with invisible illnesses and disabilities may have symptoms such as pain, fatigue, dizziness, weakness, or mental health disorders. Many of these conditions deeply impact the people suffering, but show no obvious signs to an outside observer.

By 2020, the US Department of Health and Human Services estimates that 157 million Americans will be afflicted with a chronic illness and the US Census Bureau estimates 96% of chronic illnesses are invisible. Invisible illnesses disproportionately impact women and many are not yet well understood by health care providers or the general public. This lack of understanding inevitably contributes to feelings of isolation and hopelessness for those suffering from such conditions.

CHALLENGES OF LIVING WITH AN INVISIBLE ILLNESS

In addition to the various symptoms of a chronic and invisible illness, people suffering from these illnesses can also experience frustration, guilt, exhaustion, and embarrassment.

For those diagnosed with an illness at a young age, the common stereotype that younger populations are supposed to be healthy makes it especially difficult. For those diagnosed later in life, many feel guilty they are unable to more actively participate in the lives of their families and be active with their children and grandchildren.

Invisible illnesses impact people in all aspects of their lives, personally and professionally. They can severely impact the ability to routinely work and may lead to social isolation and depression.

COMMON MISCONCEPTIONS

Nearly all of those experiencing an invisible illness have to deal with common misconceptions regarding their condition. Here are just a few of those most frequently dealt with.

  • The way a person looks reflects how they’re feeling physically. Someone may look healthy, but that doesn’t mean they are.
  • Invisible illnesses are ‘all in the person’s head.’ Keeping stress at a minimum may reduce symptoms of a chronic illness, but it doesn’t mean the root cause of the disease is psychological.
  • Resting up will make people feel better. Just as people not suffering from chronic or invisible illness are unable to bank sleep (rest for a long period of time in order to recoup or “make-up” sleep or to expend extra energy), neither are those with chronic illnesses. The same amount of rest leading up to different events, on different days, may not yield the same results, as symptoms ebb and flow, often unpredictably.
  • If a person suffering from a chronic illness is enjoying themselves, they must feel ok. Don’t assume a person who’s enjoying themselves, laughing, and participating in activities is symptom-free. Many people have learned to cope with their symptoms to participate in important events and activities, but that does not mean they are feeling well.
  • Stress reduction techniques are a cure for chronic pain and illness. While these techniques may assist with symptom relief, they are not a cure-all.
  • Being home all day is a dream lifestyle. Being home all day, but in constant pain and suffering from an invisible illness does not make for a dream lifestyle, regardless of location. Many people are often couch-bound or bed-bound due to extreme pain. They also experience boredom, as not being able to actively participate in the world around them can be frustrating and disappointing.
  • Those in chronic pain are ‘drug seekers’. People in chronic pain are often misunderstood and mistreated by the medical community. They get labeled as “drug seekers” in emergency rooms and, as a result, are denied much-needed pain medication.

HOW TO SUPPORT OTHERS WITH INVISIBLE ILLNESSES

If you know someone with an invisible illness, there are several things you can do to support them. It’s important to remember everyone wants to enjoy life and no one wants to be a burden; however, people suffering from chronic and invisible illnesses do appreciate your support and understanding.

  • Accept you are powerless to make them better. Your love and understanding are what they need.
  • Take time to talk to them and learn about their illness. Ask questions about symptoms and treatments, and be patient. The more you learn, the better you’ll be able to understand and show empathy.
  • Be with them when they need it and give them space when they want it. Many chronic illnesses become socially isolating, as people are house-bound or lose companions due to the lack of understanding around invisible illnesses. Being around and access may be one of the best support methods available.
  • Try not to get frustrated. One of the biggest challenges associated with invisible illnesses is you get sick and then you continue to get sick, the cycle does not stop. At times, this may get frustrating to caregivers and it’s important for them to realize it’s normal for people suffering this way to be emotionally needy, distant, angry, or sad.
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Crohns Disease and bad weather

We know that Crohn’s disease can equal big gastrointestinal problems, but we don’t fully know what causes this condition. Genetics and the environment are thought to play roles, along with your body’s unique response to bacteria in your intestines. Another theory is a possible link between Crohn’s and the weather or climate where you live.

Researchers at Massachusetts General Hospital, who collected information on 175,912 women 15 to 30 years old, found that the incidence of Crohn’s disease increased significantly among those living in more northern latitudes. This was especially true for women in the older age range.

Experts aren’t sure what it is about Crohn’s and weather that could cause more cases up north, but one possible explanation is that there’s less sunlight or UVB radiation exposure in these areas, which in turn means that your body makes less vitamin D and doesn’t get as strong an immunity boost as it does in sunnier climes.

Another theory relates to health issues delineated by geography. “Generally areas farther from the equator are more developed countries, with lower incidences of gastrointestinal infections and parasites,” says Ghassan T. Wahbeh, MD, director of the Inflammatory Bowel Disease Program at Seattle Children’s Hospital and an associate professor of pediatrics and gastroenterology at the University of Washington School of Medicine. The theory is that in warmer areas closer to the equator, exposure to common GI bugs may mean the immune system is better able to fight off Crohn’s, “ in contrast to the unexposed gut immune system in cleaner environments,” he says.

Crohn’s and Weather: Putting the Forecast in Your Favor

Just as there’s no “one size fits all” nutrition plan for managing Crohn’s, there’s no ideal Crohn’s climate or geographic region that can rule out Crohn’s flares for everyone. Visit the online Crohn’s Forum, for example, and you’ll see that people’s experiences vary wildly, with some describing worse symptoms in winter and others saying summer heat causes them problems.

Individual experiences aside, however, there are some important warm weather Crohn’s tips to keep in mind, whether you live in the sun year-round or are planning a vacation escape.

“Staying in warmer climates mandates proper hydration, more so for patients with active disease and symptoms who are at risk of dehydration,” says Dr. Wahbeh. Kidney stones can also be a concern for people with inflammatory bowel disease and another reason to stay on top of your beverage consumption. On average, you should be drinking 80 or more ounces every day to stay hydrated.

Keep in mind that whether you’re experiencing bouts of diarrhea from Crohn’s disease or excessive sweating because of warm or hot weather, you’ll need to drink more water. Fever and vomiting can also contribute to dehydration. Signs to watch out for include dry mouth or mucous membranes, little or no urine or urine that’s dark yellow in color, a lack of tears, sunken eyes, and lethargy. There’s also the risk for coma in very serious cases.

People with an inflammatory bowel disease also have a greater than normal risk for skin cancer, according to Wahbeh. Experts aren’t certain how much of the risk is due to the disease itself and how much can be attributed to the side effects of the medications used to treat it. However, there’s no doubt that you should religiously apply a broad spectrum sunscreen and double up on sun protection by wearing wide-brimmed hats, sunglasses, and even clothing that can block UVA and UVB rays.

Living with Crohn’s disease has its challenges, but taking into account Crohn’s and weather factors, as well as following warm weather Crohn’s tips, living and playing in hot weather is certainly possible and perhaps even more pleasurable.

Wrap up stay safe and warm its going to be along 2021

all the best

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Still Tired liveing with crohns

When my Crohn’s disease is active, my fatigue can be debilitating. Sometimes I’m forced to stop answering phone calls because I literally don’t have the energy to construct sentences. I don’t allow myself to drive because it doesn’t feel safe. I’m basically unable to do anything except the bare minimum, and when I come out on the other side I feel like I’ve been in the deepest fog.

How can I be so tired?

After experiencing fatigue like this on and off for quite a while, I began to wonder how I could possibly be SO tired. I was ‘sleeping’ ten to twelve hours a night and taking a nap during the day. What more could my body possibly want? I wasn’t working. I wasn’t moving much. In fact, I wasn’t using any more strength than necessary, and yet, it still felt like too much.

Anyone with IBD knows that when you’re sick, it often feels like more than just stool emptying from your bowels. It feels like life is emptying out too.

Fatigue and mental health

I found the fatigue contributed to my anxiety and depression, affecting my mental health too. It seemed like I was trapped in this awful cycle and all I could do is come up for air between episodes.

During that time, I took prescription sleep medication, I worked with a sleep doctor, and underwent multiple normal sleep studies. I even followed suggestions on reducing screen time, creating sleep hygiene and more, but no matter what, I felt exhausted all of the time.

Sleep versus rest

This was when I learned the difference between being asleep, and getting rest. Being in bed, tossing and turning, waking up during the night – they all impact our ability to achieve deep sleep cycles characterized by faster breathing, a faster pulse, and rapid eye movements, or REM. There were times that my body may have been unconscious, but it most certainly wasn’t at rest.

It became clear to me that I had to learn how to dedicate time to conscious rest when I was awake. To be honest, this felt awkward and like something I was embarrassed about. Have you ever sat down to do something like this?

Changes I made

There were three changes I made that over time have significantly impacted my levels of fatigue, and I’d really like to offer them as suggestions to anyone who is struggling.

  1. Scrolling through social media, even while laying in bed, doesn’t count as resting. When you brain is actively thinking about things you want, need, or are missing out on, it impacts your body’s ability to rest. Schedule in some breaks to put your phone down.
  2. Guided imagery and meditation are real things that relax your mind AND your body. I rely on the Calm app, but there are others out there as well which offer you these services right from your phone. Quieting your brain quiets your body in a real, lasting way.
  3. Aromatherapy – certain scents are tied to physical relaxation. Whether you purchase a linen spray, light a candle, burn incense or diffuse essential oils, or take a bath with bubbles or salts or bombs, aromatherapy draws upon the healing powers of the leaves, flowers, stems, bark, roots or petals of plants to stimulate the natural healing action of both your body and your mind.
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