Irritable Bowel Syndrome from Patients' Perspectives
“I am terrified that I'm going to go to the bathroom in my pants. Every time I go out with friends, I wait to see them pull up in my driveway, then I rush to the bathroom and try to completely empty myself before going out to the car. After a few years of this habit, my friends are now getting pretty irritated with me for always being so late. Despite these efforts, the second I'm in the car, I feel like I'm going to explode - like I'm going to get diarrhea. I try to focus on other things…talking with my friends, fiddling with the radio, but I can't get the thought out of my mind. I feel cramped and bloated, and like I'm going to lose control of my bowels at any moment. Ultimately, I usually have to ask my friend to pull over at the nearest gas station or restaurant so that I can run to the bathroom. Once I get there, nothing much really happens and I sometimes don't even have to go at all. Even when I feel ok, I still sit down on the toilet and try to empty myself because I am terrified of getting into the car and embarking on the drive again. If I ever did poop in my pants, I don't think I could live with the shame I would feel.“
“I absolutely hate going anywhere that I'm not familiar with. Needless to say, this really restricts each day because doing anything spontaneous is close to impossible. There is only one thing on my mind at all times: where are the bathrooms? I generally feel ok in any place that is familiar to me - I know where I can run to if I really need to go, relief will be within reach. But, what if I go somewhere and I can't easily locate a bathroom? What if I really need to use one, but I can't find it fast enough? What if then I have an accident in my pants? So, usually it takes a lot to convince me to go to any place new. I am usually terrified before I go…my mind filled with a lot of “what if“ questions about what this new place will be like and what is going to happen there. I'm always careful to bring a spare pair of underwear with me in my purse and a bottle of water that I can pretend that I've spilled on myself if the worst happens. When I get to my new destination, I usually demand that we either valet the car or I'm dropped off while my companion parks. The reason: I want to get inside as fast as possible and survey the area for all the bathrooms. Only then can I calm down and begin to feel somewhat safe.“
It is unknown what causes IBS and currently there is no cure. IBS appears to be due to a combination of different factors - such as having more reactive and sensitive intestines, diet, and general stress level. In addition, current research seems to indicate that one's perceptions and reactions to the bodily sensations themselves may also cause more intense and frequent IBS symptoms.
Although people with IBS have real episodes of gastro-intestinal distress, recent research seems to indicate that the more these unpleasant bodily sensations are feared, the more they are actually likely to occur. Like many physical conditions, how we react to our bodily distress or sensations can have a big effect on subsequent symptoms. Sensations or situations that have previously been associated with IBS attacks may also become feared and avoided. Sometimes, people may fear the IBS sensations so much that they may have a panic attack or their functioning may become so limited due to fear of developing IBS symptoms in particular situations that they may develop agoraphobia.
IBS is a medical disorder characterized by intestinal problems. It is more likely to develop in those under age 35 and it appears to run in families. IBS also appears to be more common in those who suffer from panic disorder.
Some symptoms of IBS include: abdominal pain, gas, cramps, constipation, and diarrhea. Although some individual's IBS symptoms are characterized by constipation or diarrhea, it is not uncommon for people to alternate between having bouts of constipation and diarrhea. Symptoms tend to wax and wane, and, although some people tend to have some symptoms that are more characteristic of their attacks, a different constellation of symptoms can be present in each attack.
For some, IBS symptoms are nothing more than a minor irritation, but for others it can severely limit their functioning. Most people are able to get adequate control over their symptoms through a combination of medications, diet, and methods to reduce stress.
Although there are many things about IBS that are still unknown, it is clear that individuals who find means to reduce their stress usually experience a reduction in their IBS symptoms. It is not clear why this effect happens, but it may be because stress affects the movement of the intestines or stress influences the way people perceive the pain or sensations in their intestines.
This response is not unique - as many medical and physical problems are known to be exacerbated by stress. Current research appears to indicate that IBS is a medical problem that can be exacerbated by one's reactions to the IBS symptoms themselves. Anxiety responses and our “fight/flight“ fear system is known to produce intense physical sensations. Therefore, if you have anxiety or fear about certain IBS symptoms, this likely has the frustrating effect of exacerbating the very IBS symptoms you fear. Typically, not only the sensations but also the situations/places associated with IBS attacks have the ability to elicit even more IBS sensations.
IBS should first be diagnosed by a medical doctor; tests are usually given to exclude other medical problems before the diagnosis of IBS is given. Medical doctors then typically prescribe some changes in diet or medications to help alleviate the physical symptoms. As previously described, general methods to reduce life stress are also very helpful in alleviating symptoms. Cognitive-Behavioral Therapy (CBT) is a type of treatment that has been scientifically validated as being very beneficial for relieving general stress. In CBT, individuals examine the way they perceive and cope with stressful events as well as learn general relaxation techniques.
In addition, although general CBT techniques are likely to help with lowering overall stress level (and, thus, improve IBS symptoms), amendments to traditional CBT are currently being investigated as being especially effective in treating IBS. This type of treatment will be described below. It is thought to be of particular benefit to those who are very anxious about their IBS symptoms and who limit or change their daily routine in any way to accommodate the IBS.
The new treatment being developed for IBS (Craske & DeCola) is very similar to a CBT treatment that has already been found to be very effective for panic disorder. IBS has many similarities to panic disorder, and, indeed, the two disorders often co-occur.
The focus of CBT for IBS involves learning how to change one's reactions to internal physical sensations. By reducing one's anxiety or fear response to these symptoms, the sensations are more likely to subside and to appear less frequently. Treatment usually begins with first monitoring the sensations themselves so it is clearer what sensations are strongest in IBS attacks, where they tend to occur, what thoughts are present during attacks, behaviors in response to the sensations (e.g., running to the bathroom), etc.
While gaining more information about the IBS attacks, “attentional training“ is also taught. In attentional training, an individual learns to have better control over the tendency to hyper-focus on disturbing physical sensations, and learns how to be able to redirect attention to other things (rather than having exclusive focus on bodily sensations). This technique can often help people to moderate the intensity of the sensations that they experience.
In addition, thoughts that people have during IBS attacks tend to further exacerbate the fear response - thereby, increasing the IBS symptoms. For example, fearful thoughts such as “if I don't go to the bathroom immediately, I'll have an accident“ will escalate one's physiological fear response and increase the IBS sensations themselves. In particular, there is a tendency to over-estimate the risk of the worst case scenario happening (“If I have symptoms in a strange place, I'm sure I won't be able to find a bathroom in time and will poop my pants“) and catastrophize the consequences (“Everyone at the meeting will know if I pass gas, I'll never be able to show my face there again“). Therefore, IBS sufferers are taught how to analyze their thoughts and how to realistically examine them.
Finally, techniques are taught where IBS sufferers learn that although the sensations are uncomfortable they can be tolerated and managed. This is typically taught through a series of “interoceptive exposures“ - which is a fancy term for intentionally having the feared sensations and learning how to cope with them better, tolerate them more, and disprove the fearful thoughts associated with these sensations (e.g., “if I have this sensation, I need to go to the bathroom immediately or else“). These types of exposures are conducted in a very gradual way - beginning with the types of sensations least feared and working toward the most feared sensations.
After the interoceptive exposures have been mastered, individuals are then taught how to gradually reintroduce themselves to the situations that have been avoided due to fear of having IBS symptoms or not being able to cope with the symptoms if they developed in a particular place or context (e.g., the beach, going to crowded places, standing in lines, etc.). In addition, an assessment is made of “safety signals“ or things that a person usually needs to have with them or things that they feel they need to do to help them feel safer in these feared situations (e.g., scanning each new place immediately for bathrooms, going to places only with very trusted friends, carrying water bottles with them, etc.). Gradually, the IBS sufferer is taught how to eliminate these “safety signals“ and still function and cope with their sensations in these situations.