The IBS Experience
From the excruciating pain to the embarrassing bloating and desperate mad dashes to the bathroom, many who suffer from IBS often feel as though their whole life is dominated by this one debilitating diagnosis.
As intolerable as the extreme gastrointestinal symptoms can be, the worst part for many people is the traumatically unpredictable nature of the vicious flares, sometimes resulting in severe anxiety. They never know when a flare will hit, leaving some sufferers scared and unable to participate in everyday activities that those in good health take for granted.
For example, some may avoid leaving the house unless they know for sure that they will have easy access to a bathroom at their destination. This can make running even simple errands or travel difficult, if not out of the question. Some avoid sex due to shame and embarrassment, and those with diarrhea can find it necessary to wear diapers at night.
There are those who give up on relationships altogether, unable to find anyone they feel can understand or accept them and what they are going through. Attending school or holding down a stable job can be quite a challenge for those with IBS. How can you when you are constantly having to run to the restroom for sometimes up to an hour at a time, or feel like passing out from pain?
In search of an explanation that can give them even a glimmer of hope, people with IBS turn to doctors for help. Some are lucky enough to find compassionate and well-informed physicians who understand IBS well; however, this is not always the case. After several tests and failed attempts on various medications, a doctor may shrug their shoulders, provide some generic handouts, and tell them in one way or another that what they are going through is all in their head and it would be best if they try to calm down and learn to live with it. Frustration with conventional medicine can lead some to seek out alternative options, potentially spending hundreds or even thousands of dollars on visits with naturopaths who prescribe a number of supplements and expensive treatment programs.
Through all of this, those with IBS can find themselves back at square one, or maybe even worse than they started. Many with severe IBS report feeling helpless and depressed, even to the point of experiencing suicidal thoughts. Despite IBS being one of the most common gastrointestinal disorders, it continues to be fraught with stigma, only worsening the isolation and torment they feel.
Common IBS Symptoms For All Subtypes
While IBS subtypes present in different ways, there are some IBS symptoms that are very common regardless of the subtype. These include abdominal pain, abdominal bloating and distention, and bowel habit abnormalities.
Abdominal pain is an essential component of the IBS diagnosis, meaning that an IBS diagnosis cannot be made unless pain is present. Abdominal pain in IBS can be anywhere throughout the abdomen, though lower abdominal pain is most common.1 The pain is usually diffuse instead of sharp – for example, someone with IBS might use an outstretched hand if asked to describe the location of the pain.1 It’s also common for pain to be worsened by eating or related to defecation.1
Abdominal Bloating & Distention
While abdominal bloating and distention sound similar, they are not the same thing. Abdominal bloating is a subjective sensation, or in other words–the feeling of being bloated. On the other hand, distention is an objective finding, as you can actually measure changes in your abdomen’s circumference.1
Only half of IBS patients who feel like they’re bloated also experience measurable distention.1 While bloating and distention are common IBS symptoms, neither symptom is required for IBS to be diagnosed.1
Bowel Habit Abnormalities
Along with abdominal pain, bowel habit abnormalities are the other essential component of an IBS diagnosis. Common bowel habits in IBS might include an abnormal stool frequency (i.e. more than 3 bowel movements per day or less than 3 bowel movements per week) or changes in stool form or appearance such as constipation, diarrhea, or both.
IBS-D Symptoms (IBS with Diarrhea)
The IBS-D Experience
IBS-D refers to the IBS subtype with diarrhea as the primary abnormal stool pattern. Although the reported prevalence of IBS-D varies a lot depending on the individual study, about a third of patients with IBS fall into the IBS-D subtype. A meta-analysis in 2020 reported an IBS-D prevalence of about 28% when looking at studies using Rome III criteria and slightly higher at 32% using the most recent Rome IV criteria.2
Like the other IBS subtypes, IBS-D is known to cause significant decreases in overall quality of life (QOL). If you aren’t super familiar with this term, QOL is defined by the World Health Organization as “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns”.3 So when we are talking about factors that decrease QOL, we refer to the negative stuff that keeps us from living our best lives.
A 2019 study done in the United States looked at several ways in which IBS symptoms were affecting those with IBS-D, specifically. Over half of the 1,587 IBS-D participants reported that their gastrointestinal symptoms were extremely bothersome, with an additional 37% reporting that symptoms were at least somewhat bothersome to them. The most common symptoms reported were abdominal pain, loose watery stools, and cramping, followed by urgency and bloating.4
Bothersomeness of IBS-D Symptoms
Frequency of IBS-D Symptoms
Impact Of Symptoms
- Mental Health: While the physical symptoms of IBS-D clearly cause a huge hit to a person’s QOL, it’s the mental impact that can end up affecting QOL the most. A study on IBS-D and QOL found that the biggest differences in scores between IBS-D patients and healthy controls (a.k.a. people in the research study who weren’t plagued with IBS-D symptoms), were in the areas relating to emotional problems and social functioning.5 In a 2021 study, researchers found that around 37% of those with IBS-D suffer from anxiety and/or depression, which was significantly more than the healthy controls.6
- Cost: Compared to healthy controls, there was an additional loss of $2,486 per year for each employed person with IBS-D.5
- Productivity: 20% of IBS-D patients reported productivity losses at work.5
- Absenteeism: Those with IBS-D, on average, miss an additional 4 days of work per year compared to employees without IBS, with an average of 10 missed days per year.5
- Day to Day Life: Over a third of IBS-D patients report that their symptoms interfere with daily activities at least 10 days a month.7 See the charts below for more details on how IBS-D symptoms impact their lives and what they would be willing to give up to be symptom-free for even a month.
Impact on IBS-D Symptoms on Daily Living
What Would You Give Up for a Month to be Symptom Free for a Month? (IBS-D)
IBS-C Symptoms (IBS with Constipation)
The IBS-C Experience
IBS-C is the subtype characterized by frequent constipation. It’s associated with symptoms such as pain with bowel movements, less frequent bowel movements, hard/lumpy stools, stomach cramping, straining, etc.8
A European study looked at moderate and severe IBS-C patients and found that nearly all had abdominal pain and distention. Abdominal pain occurred about 6 out of 10 days on average. The most severe symptoms were dissatisfaction with bowel habits and interference with life in general.9
Those suffering from IBS-C report a high level of disruption in their day-to-day lives, with over 50% saying their symptoms are very bothersome and less than 1% saying that their symptoms do not bother them.10
Bothersomeness of IBS-C Symptoms
Impact Of Symptoms
- Mental Health: In addition to physical symptoms, people with IBS frequently deal with mental health struggles. One study showed that 38% of people with IBS-C suffer from depression and 40% from anxiety.6
- Cost: A couple of US studies estimated the medical cost of IBS-C to be about $3400-$3800 per year. 1112 A European study reported some pretty staggering numbers regarding health care costs related to IBS-C. It’s difficult to translate these numbers into US dollars because of the differences in health care systems and sick leave policies, but here are some stats from the study:
- 11-24% of patients had a hospitalization or ER visit that lasted 1.5-12 days
- 41-90% took prescription drugs
- 21-51% of employed patients took sick leave that lasted 12-64 days9
- Productivity: A UK study found that 82% of IBS-C patients experienced impaired work productivity9. This has been shown to happen at least 4 days a month9 and up to 8 days a month.9
- Absenteeism: Missing work or school due to IBS-C symptoms happens in about 42% of patients. The average IBS-C sufferer is missing about 1.7 days of work a month, with the top 5% reporting missing between 6-10 days of work/school in a month.4
- Day to Day Life: Studies have varying results when measuring how IBS symptoms influence everyday life. One study found that at least 34% of IBS-C patients report their symptoms interfering with daily activities at least 10 days a month.4 The charts below give a picture of how IBS-C symptoms impact their lives and what they would be willing to trade off to be symptom-free.
- Situations where there won’t be a bathroom
- Making plans
- Leaving the house
- Enjoying my daily activities
- Traveling more
- Reaching my full potential/being successful
- Spending more time with family/friends
- Concentrating on tasks
- Not normal
- Not like myself
Impact Of IBS Symptoms on Daily Living (IBS-C)
What Would You Give Up for a Month to be Symptom Free for a Month? (IBS-C)
IBS-M Symptoms (IBS with Mixed Bowel Habits)
The IBS-M Experience
IBS-M refers to the subtype where people have a significant amount of abnormal stools but with a mix of constipation and diarrhea instead of one main stool pattern. Compared to IBS-C and IBS-D, research specifically on IBS-M is very limited. This is partly due to the subtype reclassification that happened when the Rome III criteria was released in 2006, previously being grouped under a type called IBS-A (A, referring to alternating) and the inherent inconsistency between symptoms and stool types.14 Because of this, doctors are often confused about what should be done to help manage symptoms in people who suffer from this subtype.
Some studies have reported IBS-M to be the most common clinical subtype. However, the numbers vary significantly depending on the Rome criteria used, location, and other study methods. A recent meta-analysis found the prevalence of IBS-M to be around 34% using Rome III criteria, but only 26% using Rome IV.2
As far as symptoms go, those with IBS-M get the worst of both worlds, having to deal with all the issues that come along with both IBS-D and IBS-C. One of the very few studies looking at IBS-M found the most bothersome symptoms reported were irregular bowel habits, bloating, and abdominal pain.14 This study also found nausea to actually be more common in IBS-M compared to the other two subtypes, occurring 43% of the time in IBS-M, 24.6% in IBS-C and 26.2% in IBS-D.14
Most Bothersome Symptoms in IBS-M Patients
This same study found that those with IBS-M who were taking medication to manage symptoms reported longer flare lengths, a higher prevalence of stomach discomfort or pain after eating, and more severe bloating, incomplete bowel evacuation, and infrequent bowel movements.14It makes sense that having more severe symptoms would make you more likely to use meds; however, a significant number of the IBS-M subjects in this study reported that they would only go from one extreme stool pattern to the other after having taken medications. This led researchers to conclude that up to a third of patients diagnosed as IBS-M may actually be misclassified.14
Impact Of Symptoms
- Mental health: most studies have found that those with IBS-M are pretty similar to IBS-D and IBS-C when it comes to frequency and severity of mental health symptoms. 15 Prevalence of anxiety is reported to be around 37% in IBS-M, with prevalence of depression at 34%.6
- Flares: 85% of IBS-M flares tend to last less than 1 week, with 75% lasting less than 3 days.14
- Remissions: Most flare remissions tend to be short, with 84% lasting 1 week or less.14
Bowel Movement Patterns in IBS-M
Bowel Movement Frequency in IBS-M
IBS-U Symptoms (IBS with Unclassified Bowel Habits)
The IBS-U Experience
IBS-U refers to the group of people who didn’t quite meet the criteria for any of the other subtypes. While information is limited on IBS-M, there is even less data on those classified with IBS-U. Again, like with IBS-M, this is partially because IBS-U really wasn’t a subtype until the Rome III criteria came out in 2006. With that said, even in studies on IBS subtypes that used Rome III and IV criteria, many found the prevalence of those with IBS-U to be so small that they didn’t bother calculating the data they collected. Not to say that all these IBS subtypes researchers were being lazy, it’s that it is almost impossible to show statistical significance without a sufficient number of subjects.
So, what can we say about this rather neglected subtype?
Well, as far as prevalence goes when using Rome III criteria, IBS-U made up only 1.5% of all IBS patients in one recent meta-analysis. The prevalence increased to 12% when using Rome IV criteria.2 Quite the jump! But we probably should consider that there haven’t been many studies done using the Rome IV criteria, so this latter number will likely change a lot in the years to come.
What else? One study done in China in 2012 using Rome III criteria found that most IBS-U subjects were split either between having bowel movements less than 3 times per week or more than 3 times per day. This study also noticed that IBS-U patients didn’t report having as many issues with urgency or straining when having bowel movements compared to the other subtypes.16
Along the same lines, an IBS subtype study that looked more at the mental health side of things found that those diagnosed with IBS-U had significantly less anxiety and depression than the other subtypes and really didn’t differ significantly from healthy controls in this aspect. This could be because, by definition, those with IBS-U don’t have to cope with as many abnormal stools as the other subtypes. Still, it could also be due to not having enough subjects in these studies to show any statistical significance.
Related Symptoms & Conditions
- Mucus in stool
- Urgency with defecation
- Early satiety
- Post-meal feelings of fullness
- Pain above the belly button (epigastric pain)
- Migraines or headaches
- Unpleasant taste in mouth/bad breath
- Chronic fatigue syndrome
- Chest pain, palpitations
- Tiredness, fatigue, dizziness
- Chronic pelvic pain
- Hot flashes
- Increased urinary frequency/urgency, night-time urination (nocturia)
- Temporomandibular joint disorders
- Sleep problems
- Asthma, breathing difficulties, or cough
- Decreased sex drive
- Painful sexual intercourse (dyspareunia)
- Neck and back pain
- Muscle aches or soreness
IBS vs Other Functional Bowel Disorders
Adding to the struggle that is IBS, is that the condition falls under a category of bowel conditions called functional bowel disorders (FBDs). This may not seem like that big of a deal, but the reality is that FBDs fall on a spectrum rather than being neat and tidy separate entities.
This makes it possible for someone to qualify for an IBS diagnosis at one point in time, depending on the quantity, intensity, and severity of symptoms, and at another point in time, the same person may have symptom patterns more indicative of a totally different functional bowel disorder or IBS subtype.
In addition to IBS, other diseases categorized as FBDs include 17:
- Functional Constipation
- Functional Diarrhea
- Functional Abdominal Bloating/Distention
- Unspecified Functional Bowel Disorder (U-FBD)
- Opioid-Induced Constipation
The predominant symptom of abdominal pain is the main distinguishing factor between IBS and other FBDs. In saying this, people with FBDs can also experience pain to a degree as well; however, in such cases, abdominal pain is not the predominant symptom.
Changing from one FBD diagnosis to another may be due to response to therapy, the natural history of the condition, or both.17 Overall, this adds another layer of complexity and confusion to IBS. It’s important to keep in mind that an IBS diagnosis can be fluid, with symptoms potentially shifting to the extent of having an entirely different (but related) diagnosis over time.