Why patients with irritable bowel syndrome are angry at their doctors

I’ve had irritable bowel syndrome for 20 years, and I’m angry. About the pain, and the suffering, and the limited diet, and the huge impact that it has had on my life. But mostly, I’m angry at my doctors. No, they didn’t misdiagnose me. No, they didn’t harm me. No, they didn’t treat me like dirt. But they still made me angry.

Before we go any further, let’s get one thing straight: I know that IBS is difficult to treat. Try to help an IBS sufferer and you are presented with an unholy mess of anti-diarrheals, laxatives, fiber supplements and anti-spasmodics, and that’s before we even start arguing about which diets might be useful. So I don’t expect my doctor to cure me. I don’t expect a miracle.

I know that IBS patients are “heart sink” patients; that doctors dislike our visits because we’re so tough to help. I understand that it must be horrible to have patients who you don’t know how to cure, who are begging for relief you can’t provide. It’s not the physical treatment of my IBS that has made me angry. It’s the way that I have been treated as a person.

I have this deep, open wound in my heart, caused by two decades of suffering, and yet my doctors refuse to acknowledge it. I talk about my emotions, my despair, and I am dismissed. “We know IBS can be uncomfortable, but it isn’t really serious,” they tell me. “It’s not life-threatening, after all, it’s not cancer. You need to learn to live with it. Come back and see me if you get a new symptom, but otherwise it’s just IBS.”

I think about the jobs I’ve almost quit, and the hours spent sweating and shaking in a bathroom, and the nights I’ve spent crying myself to sleep. And I wonder where they’re getting their information from, these doctors, about the power of IBS; what textbooks and lectures they are relying on, what experts they are trusting so much more than they trust me.

I wonder if there are other patients they’re not listening to. Other sufferers who talk honestly and openly about their feelings and are told that their emotions are impossible, because a mildly malfunctioning gut couldn’t possibly cause such misery.

This is what makes me angry. I’m not asking for a solution, I’m not asking for a cure. I’m asking you to believe me, to trust me when I show you my wounded heart. I’m not a drama queen, or a hypochondriac; I’ve been ill for 20 years, and it has hurt me. Please believe me when I tell you that.

Your heart would be wounded too.

Sophie Lee runs the website IBS Tales and is the author of Sophie’s Story: My 20-Year Battle with Irritable Bowel Syndrome.

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  • http://makethislookawesome.blogspot.com/ PamC

    People do NOT understand gut pain. It quickly stops *everything* else. I can still function somewhat with a killer migraine. Even moderate gut pain can make it impossible to do anything. And severe gut pain? That can make you lose all bodily control. 

    They don’t get it. They really don’t. I don’t think they can. Unless you’ve experienced it, it’s *really* hard to imagine. 

    • Michael Blackmore

      This is a very sad story of unnecessary suffering. I have treated many patients with IBS in over 30 years of family practice in the UK.  It is never true to say that “nothing can be done” nor is it true to say that IBS is a difficult condition to treat.   One needs to consider the patient’s problem in the round.  In my view IBS is not wholly, or even mainly, a “disease” of the bowel.  Indeed one may question if it is a disease at all.  It is a response (of the bowel or more accurately the person) to circumstances and unless it is seen as such “treatment” is unlikely to be successful.  It is important to move the focus away from the bowel to the lifestyle and circumstances of the “sufferer”.  Once this is accepted, by both patient and physician, improvement is usual inmost cases.  Although rather unfashionable I found that a low dose of antidepressant (especially mianserin) was very helpful in many cases and usually achieved relief of symptoms after one to three weeks.  Once improvement had been achieved the vicious cycle of pain induced stress was broken and the hope and expectation of improvement established.  At this stage lifestyle issues could be addressed more fundamentally and the antidepressant slowly withdrawn over several weeks or even months.

      My advice to anyone who has had these unhappy experiences would be not to lose hope but to seek a sympathetic and experienced physician who has learned to understand that the heartsink patient is a manifestation of the doctor’s failure to understand the problem and not a failure of the patient to respond to the doctor’s treatment. It is not an easy task but achievable and rewarding to both doctor and patient alike.

  • Anonymous

    I think you need to get in touch with the other poster on this board who wrote a book on “how to be sick.” We all have chronic problems, and you either learn to live with them, or play the victim. Our society has a lot of victims nowadays…how do you think fibromyalgia came to fruition? It is the most ridiculous diagnosis I have ever seen. But, it gets you out of the doctors office.

    • http://www.howtobesick.com Toni Bernhard

      Thank you MuddyWaterz for mentioning my book, “How to Be Sick.” It’s helped a lot of people accept that some doctors are going to help us and some are not. To be angry about it just exacerbates people’s symptoms.

      Sophie: I hope you can  find a doctor who is honest with you about what he or she knows and doesn’t know. From what I’ve read, there may be several subsets to IBS as there are with other difficult illnesses to treat (Fibromyalgia, Chronic Fatigue Syndrome). You need a doctor who will work with you to try to identify the cause(s) of your particular symptoms. I’m so sorry that you haven’t found one yet.

    • http://pulse.yahoo.com/_UDJTUH45CFUC6LKCBLB6FGRDKU Diane

      you know muddy waterz, I really hope you are not a doctor. I have seen you post in a lot of places and I would never want you to be my doctor. You sound like the doc who looked at my calf pain (which had hurt for many weeks) misdiagnosed a DVT b/c it wasn’t swollen said, you are fine, (ie stop whining) and sent me on my way. Funny how I later showed up with a PE….. Even then, that was misdiagnosed as pneumonia at first b/c of vague “I can’t breathe symptoms”.-no fever, no cough. And this is a supposed ER doc who fills in as a “doc of the day” at our family practice. (He will NEVER see another family member again!) Finally a NP believed the leg pain on the 3rd visit and got the diagnosis right!

      You seem to think anyone who complains is sad, sappy and pitiful. Sure lots of folks have chronic problems. Yours seems to be chronic grumpiness.

  • Anonymous

    The problem with “irritable bowel syndrome’ is that as a diagnosis it is meaningless. It is an umbrella term which simply says: There is something wrong with your guts, but we don’t know what. The key is to understand what is ‘wrong’ in each individual case. It could be something as simple as a food intolerance, or something more complicated such as a parasitic infection. I know that in the U.S. infection with Blastocystis hominis is surprisingly commmon – and the symptoms are very much the same as the ones generally associated with IBS. Intestinal permeability is another possibility. The point is, you’ve got to identify the cause in each case rather than just treat everyone with the same blanket approach.

  • http://arnonkrongrad.com Arnon Krongrad, MD

    “Believe me.” These words speak for men with chronic prostatitis, too. See how one doctor, who had pain for 13 years, describes the dismissal he faced from his doctors and what it meant when “somebody actually believed me!” His condemnation starts at 12:33 on this video:  http://vimeo.com/12780460

  • Anonymous

    Has your Doc suggested removing grains, diary, and legumes from your diet?
    Probably not.

    I, too, suffered for nearly 20 years, with the initial symptoms beginning around the age of 9. (Funny, this is the same year the Gov started pushing high Carb/low Fat diets.) I can remember being curled up on the bathroom floor thinking I can’t live like this. For those who’ve never experienced the pain, I’ve described it as feeling like your body is “digesting shards of glass”.

    In those 20 years, I was “diagnosed” with a “parasite”, IBS, hemroids, depression, among a myriad of other “minor” health issues. The truth of the matter is that it was a simple problem – GLUTEN. Once I removed it from my diet, which is NOT that difficult, but does require that I cook all my meals, EVERY SYMPTOM DISAPPEARED.

    Unfortunately, there are too many industries currently benefiting ($$) from the havoc it produces.

    When I watch TV and all the ads associated with “IBS”, it sickens me to think how many people are suffering.
    Activa (A probiotic proven to be no better than “normal” yogurt),
    Nexium / Prilosec (GERD goes away quickly, and returns just as quickly when I consume gluten or corn products.),
    and Metamucil (Fiber is over-rated, remove the toxins and you won’t need it),
    for example,shouldn’t be needed by, what, 99.9% of the population, right?

    {If we’re that sick as a species, we’d have become extinct long ago.}

    So Drs reading this blog, please, please, PLEASE go to the simple solution before the meds. Food is medicine. A lifetime of thinking one must be chained to a pharmacy is no way to live.

  • Anonymous

    i’ve found that when people claim not to be something, they are frequently admitting exactly what they are.

    “I’m not a drama queen, or a hypochondriac”

  • http://www.facebook.com/people/Steven-Reznick/100000549195050 Steven Reznick

    I too suffer from irritable bowel syndrome. One day I woke up and decided it would not control my life. My loving and caring wife allowed me the latitude to fight through the discomfort and cancel plans at the last minute without feeling horrible and guilty about myself and my actions. My doctors had given me the reassurance that I did not have cancer or inflammatory bowel disease. I still get symptomatic from time to time but have been fortunate to not let the disease control me. I identified as many triggers as possible and avoid them when possible. I came to realize that the   drugs used to treat the symptoms often made me feel worse than the illness. I am convinced that IBS is a garbage pail diagnosis of many different malfunctions of the gut all resulting in distention, rapid transit, pain and the need to get to the bathroom for repetitive progressively looser explosive stools. My heart goes out to those with this malady but ultimately they must take control or else this disease will ruin their lives

  • http://pulse.yahoo.com/_W7EPKTQPPAKE763CYSAFGUIVMQ Jeffrey

    I’m really sorry you feel misunderstood and “mad” but get a grip. EVERY one has pain in their life in varying degrees be it illnesses visited upon them or unfortunate accidents and trauma of living life. Some choose to “live” with it and do the best they can and other’s “make a life” out of it by focusing on the suffering and feelings it creates including anger and depression. Your ability to cope and how you choose to deal with it in large part determines your course in life. There are hundreds of individuals with worse conditions and injuries (think Iraq and Afghanistan) than you—need look no further than to see individuals determined to achieve the best life they can with the cards they have been dealt–fairly or unfairly. 
    The only truths are: 1) Life is not fair  2) The only “choice” you have is to “choose” how to live and deal with what you have and are RIGHT now 3) Comparisons only create unhappiness because they almost always are based on perceptions. 
    I deal daily with patients screaming at me that they are “dying” from the pain in their sprained ankle or lacerated whatever. Yet they live in a country that allows them to get an MRI for their injury and have someone else pay for it, all the while complaining how little empathy they get while demanding pain medication. Try living in a country where the nearest doctor is 300 miles away by bus, one day a month. Those folks have the very same diseases and conditions; many worse and yet seem thankful to be alive and able to cope. There is no “blame” here, only anger over what you do or don’t have like everyone else. You’ve seen all the “doctors” for the last 20 years–try changing yourself first!…Seriously every doctor you have seen has mistreated you as a person??? Maybe what you really need is a psychiatrist.

    • http://twitter.com/NWLefty1 NWLefty

      What she is saying is that she’s angry that her doctors dismiss the reality of the incredible disability that is severe IBS.  It sounds like you are a case in point.  

      • http://pulse.yahoo.com/_W7EPKTQPPAKE763CYSAFGUIVMQ Jeffrey

        You havent read her direct quote:” It’s not the physical treatment of my IBS that has made me angry. It’s the way that I have been treated as a person.” So apparently some of the myriad of doctors at least acknowledged she has the disease and treated the physical symptoms–that’s not denying the reality of its existence nor its sequelae. There is a saying; “you are unique–just like everyone else”. Everyone wants someone to hold their hand and empathize–no argument there; but in our system thats what psychiatrists get paid to do; not internists/surgeons/ER Drs nor GI Drs. That doesn’t mean its right nor that there shouldn’t be a better way-that’s a system problem.

  • DrHellen

    I am sorry you have been having problems all these years.  Individuals that are telling you to “live with it”, have probably not experienced your type of pain.  I have posted a blog suggesting that when the body returns to immune homeostasis, the proper balance of inflammatory responsiveness,  When one achieves immune balance, one’s quality of life changes.  The best of luck.   http://drhellengreenblatt.info/blog/

  • Anonymous

    “I have this deep, open wound in my heart . . .I’m asking you to believe me, to trust me when I show you my wounded heart”

    This is the human condition. We ALL have these wounds and these needs.

    But to demand that these needs be fulfilled within the context of a doctor/patient relationship is misguided, and a recipe for disaster.

  • http://angryfemur.tumblr.com Andrea Lane

    I agree with you, Sophie. I suffered from IC (not the same as IBS, but also a painful condition that is difficult to treat) for a long time before I could find a health care practitioner who listened to me and really understood how much my condition affected my life. At one point, a gynecologist actually started yelling at me in her office. Not really the best way to treat a condition exacerbated by stress.

    Ultimately, I drastically modified my diet and started seeing an acupuncturist. My symptoms aren’t gone; they probably won’t ever be. But they’re much more manageable and I feel that I do have some recourse. I hope that you find the healing path that works for you.