How IBS Impacts Quality of Life (13+ Real-Life Stories)

Every year April is designated as “IBS awareness month”. Many people who don’t have to live with digestive symptoms probably never think twice about it, while the 10% of the global population who lives with IBS are at least thankful that there is some awareness of what they know to be an extremely debilitating condition, which can have a huge impact on quality of life.

It’s sad because most people don’t really understand the impact that IBS can have on someone’s life.

Part of the problem is the name and general preconception in the public. Just hearing the word IBS or irritable bowel syndrome makes this condition seem trivial or as if it is just a minor irritation.

This couldn’t be further from the truth.

In the future, I think there needs to be a name change. We need to get rid of the stigma associated with the condition. I think this will help sufferers heal faster.

I think part of the reason the name IBS has stuck around is that there has been so much confusion from doctors and researchers about the actual causes of the disorder, so they just decided to slap a general name on it to label people with severe digestive issues, where they can’t prove the exact causes.

Anyway, IBS is a real disorder, and in this post, we are going to take you through the lives of over 13 people who have struggled with IBS to show you real-life examples of how much this digestive disease can impact someone’s quality of life.

I believe those who have lived with IBS deserve to be understood and should be given credit for making the best of their challenging circumstances.

After reading this article I hope you have a better understanding of people who struggle with this digestive disorder. If you know someone who is having a tough time, give them a hug and some encouragement!

First, What is IBS?

what is sibo

IBS or irritable bowel syndrome is the most common functional gastrointestinal disorder in the world affecting around 10-15% of the global population. In the United States alone, around 25 to 45 million people deal with this disorder. 1,2

People who suffer from IBS symptoms can experience symptoms to differing degrees, from moderate to severe/debilitating. The main symptoms people experience are pain, bloating, gas, diarrhea, constipation, cramps, brain fog, and fatigue.  

Below are some key points to know about IBS:

  • There are usually no structural abnormalities in people with IBS seen on diagnostic tests
  • There is no cure currently
  • We know that the disturbance of the interaction between the gut, brain, and nervous system is at the center of the disease
  • It has been proven that food poisoning can cause IBS in a portion of patients due to nerve damage, dysmotility, and small intestinal bacterial overgrowth
  • Stress does not cause IBS, although it can exacerbate symptoms because of the connection between the brain and the gut
  • IBS costs society a lot in terms of direct medical expenses and missed work. Estimated to be around 22 billion dollars annually
  • IBS is the most underfunded and researched GI disorder, but it impacts the most people!
  •  

Real Stories of How IBS Can Impact Lives

All of the following people have dealt with IBS and were kind enough to share their stories so that we can raise awareness for this condition in hopes of better understanding and treatments going forward.

Out of everyone who was willing to share (35 completed surveys) 85% said that IBS impacted their quality of life on a 7-10 level out of 10. We asked everyone a series of questions to get a better understanding of what it’s like to deal with IBS. Below are the 13 selected stories.

Josh

1. Where are you from?

San Diego, CA

2. How long have you dealt with the condition?

3-5 years

3. How much has IBS impacted your quality of life?

8-10

4. How has the disorder changed your life?

Coming down with IBS and SIBO caused me to miss a year of school, feel like I was infected, dramatically reduce my social life and confidence, causing symptoms of anxiety, depression, gas, diarrhea, constipation, fatigue and brain fog, as well as dramatically reducing the foods I could digest without causing symptoms.

5. What are the most frustrating symptoms you have experienced?

Gas, bloating, diarrhea, constipation, fatigue, anxiety/depression

6. What is the hardest psychological issue you have dealt with?

I would say the silent suffering and social isolation due to the symptoms that come with IBS. It’s really hard being around people when you are dealing with symptoms.

7. What is something positive that has come from your health issue?

Dealing with this illness has changed my life for the better overall. Even though it has made life challenging, I am more compassionate, grateful, motivated, purpose-driven, curious, and health conscious. It has forced me to figure life out on my own and helped me pursue my dreams and goals. I’m working to improve my health to the point where I am cured and help other people improve their lives naturally as well. I’m hopeful and excited for the future.

Samantha

1. Where are you from?

Leavenworth, WA

2. How long have you dealt with the condition?

10+ years

3. How much IBS impacted your quality of life?

10/10

4. How has the disorder changed your life?

It’s been increasingly difficult as I get older, my symptoms have progressively gotten worse and harder to deal with. It has affected my work and career, my inconsistency is a huge detriment. I have a hard time traveling or going to many events. I tend to stay home often. It has also really affected my thoughts and feelings about starting a family. I honestly don’t know how I will be able to go through pregnancy without severe pain and discomfort, which is distressing and a dark cloud over something I have always dreamed about.

5. What are the most frustrating symptoms you have experienced?

Nausea is seemingly always present at some level but the combination of that with the intestinal cramping is debilitating.

6. What is the hardest psychological issue you have dealt with?

The silent suffering and social isolation (the gut can’t be seen like a broken arm)

7. What is something positive that has come from your health issue?

I have really found the strength within myself to overcome obstacles in my life. It has also given me such appreciation for those days I feel great as they become fewer and fewer.

Joleen

1. Where are you from?

Des Moines, Iowa

2. How long have you been dealing with IBS?

1-3 years

3. How much has IBS impacted your quality of life?

6/10

4. How has the disorder changed your life?

More conscious of food choices.

5. What are the most frustrating symptoms you have experienced?

Bloating, gas, constant upset stomach. I was eating a healthy diet before I was diagnosed. So frustrating that my healthy food choices were making me so sick.

6. What is the hardest psychological issue dealing with the condition?

A lack of understanding from friends and family when avoiding certain foods or events.

7. What is something positive that has come from your health issue?

Feeling much better when I follow my gut-health plan.

Rebecca

1. Where are you from?

Michigan

2. How long have you been dealing with IBS?

1-3 years

3. How much has IBS impacted your quality of life?

6/10

4. How has the disorder changed your life?

I have to watch everything that I eat. It also determines where my family can go out to eat.

5. What are the most frustrating symptoms you have experienced?

Abdominal discomfort and gas for almost 2 1/2 years.

6. What is the hardest psychological issue dealing with the condition?

Silent suffering and social isolation (the gut can’t be seen like a broken arm)

7. What is something positive that has come from your health issue?

I lost a few pounds.

Trish

1. Where are you from?

Ohio

2. How long have you been dealing with IBS?

10+ years

3. How much has IBS impacted your quality of life?

10/10

4. How has the disorder changed your life?

I never realized how critical my ileocecal valve was until it was surgically removed. It took me years to figure out what was happening to my gut. SIBO and leaky gut cause my thyroid to be underactive, I have histamine related issues with skin itching, and more. The doctors are clueless. I have had to do all my own research and figure it all out myself.

5. What are the most frustrating symptoms you have experienced?

Malabsorption, skin itching from histamine release, diarrhea one day, constipation the next, GE reflux, gas, bloating, abdominal pain, brain fog, depression

6. What is the hardest psychological issue dealing with the condition?

A lack of understanding from friends and family when avoiding certain foods or events

7. What is something positive that has come from your health issue?

I can speak out on the issue and help others to become aware of what may be causing their own symptoms.

Mihoko

1. Where are you from?

Woodland Hills, CA

2. How long have you been dealing with IBS?

1-3 years

3. How much IBS impacted your quality of life?

8/10

4. How has the disorder changed your life?

The constant uncertain state of digestive issue deters from a zest for life. It affects work, personal, emotional well being daily.

5. What are the most frustrating symptoms you have experienced?

Massive gas and pain on the left side which numerous doctors and tests have not found a cause and they have given up on me.

6. What is the hardest psychological issue dealing with the condition?

Silent suffering and social isolation (the gut can’t be seen like a broken arm)

7. What is something positive that has come from your health issue?

This challenge made me aware of taking care of myself, and also the healing process is a blessing to be more spiritual. I am doing more meditation, yoga, exercise, mindful eating and being gentle to myself.

Rachna

1. Where are you from?

Florida

2. How long have you been dealing with IBS?

3-5 years

3. How much has IBS impacted your quality of life?

10/10

4. How has the disorder changed your life?

I don’t have much of a social life anymore since I avoid eating out. That means, doing a ton of cooking.

5. What are the most frustrating symptoms you have experienced?

Abdominal pain, sometimes foul-smelling flatulence.

6. What is the hardest psychological issue dealing with the condition?

Silent suffering and social isolation (the gut can’t be seen like a broken arm)

7. What is something positive that has come from your health issue?

After all the research I’ve had to do to figure out a solution for my gut issues, I’ve become quite a health nut along the way. I eat healthily and feed healthy meals to my family too. I’ve learned to appreciate and listen to my body.

Pat

1. Where are you from?

Connecticut

2. How long have you been dealing with IBS?

5-10 years

3. How much has IBSimpacted your quality of life?

6/10

4. How has the disorder changed your life?

I am limited with regard to eating out. Affects my social life but not as much over the last three months.

5. What are the most frustrating symptoms you have experienced?

Diarrhea

6. What is the hardest psychological issue dealing with the condition?

Psychological symptoms like brain fog, depression, and anxiety

7. What is something positive that has come from your health issue?

I’ve lost a lot of weight

Ellen

1. How long have you been dealing with IBS?

10+ years

2. How much has IBS impacted your quality of life?

10/10

3. How has the disorder changed your life?

I have largely lost my independence. To go to the Dr, my hubby has to wheelchair me.

4. What are the most frustrating symptoms you have experienced?

Pain

5. What is the hardest psychological issue dealing with the condition?

Dealing with conventional allopathic doctors

6. What is something positive that has come from your health issue?

Learning the mechanisms of the brain to the gut

Kara

1. Where are you from?

Sacramento, CA

2. How long have you been dealing with IBS?

3-5 years

3. How much has IBS impacted your quality of life?

10/10

4. How has the disorder changed your life?

Most of my focus now is on my health. Everything I do – how much sleep I get, the people I spend time with, my job, etc – it all affects my physical/ emotional wellbeing tremendously.

5. What are the most frustrating symptoms you have experienced?

Bloating, constipation, diarrhea, gas, abdominal pain

6. What is the hardest psychological issue dealing with the condition?

Feeling alone. Sounding like a broken record when I feel like I am talking about it too much (when it’s literally just my life).

7. What is something positive that has come from your health issue?

Extreme self-awareness and stronger intuition!

Eileene

1. Where are you from?

California

2. How long have you been dealing with IBS?

10+ years

3. How much has IBS impacted your quality of life?

5/10

4. How has the disorder changed your life?

I developed IBS after having a major surgery 20+ yrs ago. Since then, I’ve been on a journey to discover what affects my gut.

5. What are the most frustrating symptoms you have experienced?

I typically have diarrhea multiple times in the morning upon rising from bed. Also, when eating out at friend homes or in the community, I take the risk of people not knowing how uncomfortable IBS can be.

6. What is the hardest psychological issue dealing with the condition?

Silent suffering and social isolation (the gut can’t be seen like a broken arm)

7. What is something positive that has come from your health issue?

I have developed a new love for cooking from scratch, using the foods I know that I can safely consume. Through all of this, I’ve developed a reputation for my cooking. When I attend a potluck, I always make & take a huge main dish of something with protein that I know will agree with my stomach. I’ve also learned that it’s not worth the risk to eat prohibited foods. I’ve learned to be kind (and not inwardly resentful) when declining foods that I know will cause me digestive issues. I buy fresh organic ingredients as much as possible. It’s a blessing that gluten-free bread and pasta are now much more readily available. I’m also blessed that my husband doesn’t mind my dietary restrictions. I regularly cook foods for him that he can enjoy (but that I must avoid). I make sure when I do this to cook & eat within my individual health parameters.

Melinda

1. Where are you from?

Los Angeles

2. How long have you been dealing with IBS?

10+ years

3. How much has IBS impacted your quality of life?

8/10

4. How has the disorder changed your life?

It has impacted my life greatly. In my early 20s, I started noticing digestive disorders. I realized I was sensitive to various foods and my bathroom habits were inconsistent and unpredictable. Often, I would not go out socially – due to these issues. Back then, doctors said it was IBS due to stress. The issues continued and intensified over the years. I knew instinctively that certain foods would cause bloat and pain. I can only remember 1x in the past year that I didn’t bloat up for more than a day – I even remember what I wore that day, my pants fit so well! I became increasingly frustrated because I had such a restricted diet due to sensitivity, in addition to being plant-based (which I thought was a positive thing). At the same time, became more isolated and not motivated to go out or travel. Many days, I miss work or am late to my appointments because I don’t feel well or I feel my bathroom routine for the day is just too unpredictable, I never wanted to stray far from home. I’ve had many tests done, thankfully do not have Celiac or IBD, but alas, I have SIBO. I started to do some of my own research, more functional-based medicine. Through that, I heard the term SIBO. I asked my Gastroenterologist about it and he ordered the test. I’m in the midst of my first antibiotic treatment and been following the elimination phase of the Low FODMAP diet, crossing my fingers…Also within my research, I realize that my history of anxiety, mild depression, and brain-fog (since my late 20s/early 30s) are quite possibly related. Which in a way, is relieving to hear. I hope these symptoms, along with the physical, will fade away… I hope my story will help others to know they are not alone and there are treatments, supplements, etc. that can help. I understand it’s hard to explain to your loved ones, it can be embarrassing to be the “picky” eater. All too often, I would just succumb and accept ‘this is how I am, I just have to learn to deal.’ It doesn’t have to be that way, please know that. We are all learning and here to support each other. I hope in sharing our stories, we can feel more supported and encouraged to speak out.

5. What are the most frustrating symptoms you have experienced?

BLOATING, sensitive digestion (like I feel the food traveling through my intestines sometimes), unpredictable bowel habits – alternating from constipation to loose and the got to go now feeling! Reflux, the feeling of not fully emptying out, and frustration from all the food restrictions and sensitivities. Above all those, perhaps the related psychological symptoms of brain fog, anxiety, and mild depression

6. What is the hardest psychological issue dealing with the condition?

Silent suffering and social isolation (the gut can’t be seen like a broken arm)

7. What is something positive that has come from your health issue?

Though difficult to put into practice at times when dealing with these issues, it has strengthened my patience and perseverance. Also, my husband’s unconditional patience and support have and continue to really shine through! My husband and my dogs have always been great sources of comfort for me.

Carol

1. Where are you from?

Montana

2. How long have you been dealing with IBS?

3-5 years

3. How much has IBS impacted your quality of life?

10/10

4. How has the disorder changed your life?

I have to plan my meals so I will have several hours for my bloated stomach to go down before I leave the house

5. What are the most frustrating symptoms you have experienced?

Bloating and gas and a HUGE uptick in anxiety

6. What is the hardest psychological issue dealing with the condition?

Psychological symptoms like brain fog, depression, and anxiety

7. What is something positive that has come from your health issue?

I’m eating healthier foods

Total IBS & SIBO Survey Result Data

Aside from the stories above, we have compiled some data from 2 different surveys we have run at SIBO Survivor to get a measurement of different metrics 200+ people with IBS and/or SIBO experience. Below are the main results.

Impact on Quality of Life

You can see from the chart above that 85% of the people surveyed said that IBS impacts their quality of life dramatically or 7-10 on the range.

Most frustrating Symptoms

From the graph above, 24% said that gas and bloating was their most frustrating symptom and 47% said it was the combination of different symptoms that was most frustrating.

Length of Time With IBS

From the graph above, you can see that there is a pretty diverse range of times people have experienced IBS and SIBO. 25% said 10+ years, 25% for 1-3 years, 20% 3-5 years, and 17% 5-10 years. This shows that for some people the condition can be chronic and for others, it can be shorter term.

Hardest Psychological Aspects That Come With IBS

From the graph above, you can see that:

  • 27% of people said that the psychological symptoms like brain fog, depression, and anxiety were the hardest to cope with
  • 25% said the silent suffering and social isolation
  • 19% said that the lack of understanding from family and friends when avoiding certain foods or events was the toughest

 

Most Frustrating Parts of Medical Care

From the graph above:

  • 27% said they felt like their doctor did not have an understanding of both natural and conventional treatment methodologies
  • 11% said that they either felt their doctor didn’t care or take the time to understand their situation or nothing that they suggested had helped them
  • 11% said that they love their doctor and felt they were very helpful
  • In summary, you can see how frustrating it can be for IBS patients when navigating doctors appointments trying to find helpful and cost-effective care

IBS Sufferers Deserve Love, Understanding, and Treatment Advances

I hope that after reading a few stories from people who have dealt with IBS you have a better understanding of how this digestive disease can dramatically impact the lives of those who deal with it.

It can cause enormous amounts of suffering, social isolation, and severe digestive symptoms.

It can alter the course of someone’s life.

That’s why it’s so important to show love, support, and encouragement to anyone you know who is dealing with this digestive disorder. It’s not easy. If we can understand and care for people with IBS we can help them heal faster.

Lastly, there is hope for people who live with IBS. Scientists are starting to learn more about underlying causes and are working towards creating solutions to help cure this disorder.

Many people are also becoming more educated about their health and are finding ways to heal themselves or reduce symptoms through both conventional and natural medical approaches.

But, one thing is certain. IBS has been a stigmatized and underappreciated medical condition. Those who have dealt with IBS and SIBO symptoms deserve better. They deserve new treatment advances, better funding for research, and understanding from society.

Top Research Center You Can Donate To

research

The following are research centers that are committed to finding new treatments, cures, and technologies for IBS. If you care about helping people who struggle with this condition, please make a donation. Every dollar counts.

MAST Program at Cedars SinaiThe medically associated science and technology lab at Cedars Sinai Medical Center in Los Angeles is committed to finding cures for IBS and SIBO as well as other advancements in different GI and metabolic issues. The team is lead by Dr. Mark Pimentel who has been studying IBS for many years and has already discovered some life-changing treatments.

To donate, click on the link in the sidebar “make a gift” and select “Gastroenterology”.

William Chey Research Group at University of Michigan Dr. Chey at University of Michigan has been studying IBS for most of his career and now runs a research group at the University of Michigan looking at dietary and lifestyle interventions for IBS to pave the way toward evidence-based, life-changing nutritional and behavioral solutions, both for flares and to prevent and cure IBS.

To donate, click here to select the William Chey Research fund for IBS.

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