Guest Post: Let’s Work Together to Manage IBS

April 10, 2016

IBS Impact is pleased to welcome a guest blogger this week for IBS Awareness Month. We thank him for his time and important insights.

Jon S. has IBS and lives in the United Kingdom. He has a degree in biochemistry and now works as an analyst in the tech sector. In his spare time, Jon follows developments in the science behind, and treatments for, IBS. He shares this knowledge via his blog (patientj.wordpress.com) and via support to IBS sufferers on Health Unlocked.

For many sufferers, despite the international Rome diagnostic criteria in existence since 1991, (see page 889, section C1 at link) IBS still feels like a diagnosis of exclusion: we have a series of digestive problems but blood or other tests rule out anything more ‘serious’. Many of us initially don’t understand the concept of functional disorders like IBS or how they are real but do not show up on currently available tests. As a result, we find ourselves placed in what appears to be a catch-all umbrella term for unexplained bowel symptoms: irritable bowel syndrome. This situation is far from ideal: it can make patients feel their condition isn’t being taken seriously, and frustrated when alternative diagnoses aren’t considered, or even known about.

The good news is that more is being understood about IBS every year, and the Internet and social media are useful ways for sufferers to learn more about their illness and discover alternative treatments or problems their own doctors might not know about. But we’re still a long way off fully applying this learning in the clinical environment. Although the updated Rome IV is due out next month, many other diagnostic tools aren’t available in the clinical setting yet, we still don’t know what some of the causes are, and because of the way medicines are licensed and approved, it may take time for some experimental treatments to be available for use. It’s also clear that not all frontline doctors are fully abreast of even the more recent treatments for IBS.

So, in the meantime, what can be done to help improve the treatment and management of IBS? I believe there are changes we can make as patients, clinicians and institutionally that will benefit everyone. However, these changes require humility and the willingness to want to improve to have the best chances of success.

Patients

First of all, we as patients need to understand and accept that there isn’t a silver bullet for IBS. Medical and scientific professions don’t understand all the causes for IBS, and even when we do have evidence of a trigger, we don’t necessarily understand the underlying biochemical and physiological reasons for how the triggers give rise to symptoms, or even how to treat it.

For this reason, treatment of IBS is a process of trial and error. And often error. It can take several months or years to discover the right treatment, or combination of treatments, to combat an individual’s symptoms. And as there is no magic pill, we also need to look at our own lifestyles and accept that these, too, could be contributing to our problems. Some patients find that poor diet and/or endemic stress and anxiety in general or triggered by life events can exacerbate IBS. This isn’t always the case, and isn’t necessarily easy to change, but in my experience it is one of the things sufferers are reluctant to address.

We should also be alive to the fact that we might not be able to treat IBS at all. A significant proportion of patients (20-25 percent) will find no improvement through managing their stress and altering their diet. And even if this is possible, for many it will still require the long-term management of our symptoms, making life as tolerable as possible, but not necessarily clearing it up altogether. In this way, IBS is a silent disability, but something we can hope to change over time through things like IBS Awareness Month and political campaigning.

And we can also do lots to understand our symptoms, too. In the UK, pages like the NHS Choices’ website, the IBS Network and NICE Clinical Guidelines provide good starting points on IBS management and clinical best practice, the majority of which will be applicable regardless of which country you live in. This doesn’t mean we shouldn’t trust our doctors. Believe it or not, the majority of the time the doctor is probably right: it is IBS as opposed to anything more serious. However, I feel that sometimes we feel let down by the medical profession when they don’t seem to support us, or when the treatments don’t work. We can only overcome this by understanding more about our condition and working with our doctors to explore our symptoms more.

 

Doctors

As in any profession there are excellent doctors and some pretty bad ones and then the whole range of skills and competencies in between. Indeed, partly because I have several friends who are doctors, I have a considerable amount of appreciation for the profession. And I think that anyone who has worked in a high-pressure environment where the policies, procedures and technologies are constantly changing can appreciate how difficult it must be for the average family doctor to amass and apply a growing and shifting body of knowledge and best practice.

All the same, I hear too many stories of patients who feel like their doctor doesn’t care or understand, or people who’ve reached their wit’s end because nothing appears to be working. I feel these are both cases where doctors have failed: if doctors have lost their desire to care for people, they have failed their patients; if they have lost their passion to solve medical problems, then they have failed themselves.

That said, I think there are a few things that doctors can do to better support their patients. To start with, how would you adapt your approach if you considered IBS more a symptom than a diagnosis? Would this make you more willing to look at differential diagnoses or change how you give advice?

Moving on, there are a range of treatments available but not every treatment will work for every patient. After I’d seen four different GPs, only the last one explained that they’d like me to try one drug first and then if that didn’t work we could review later and either change dose or drug. But why had it taken four doctors before one said “this drug might not work but I want to start you on the drug with the fewest side effects…”? We’d like you to work with us but it sometimes sounds like we’re being given a cream for a rash that will go away in a couple of weeks.

Work with your patients to try and help us understand the underlying cause(s) of our IBS and the current research understanding of what it is and what can be done to help us. Clinical standards will vary from country to country but I suspect, Rome criteria aside, most will advocate at least some blood tests to rule out other disorders. Some patients would benefit (or just like to know) what any tests looked for and found; it may also help very anxious patients understand why you are ruling out more life-threatening conditions. If tests aren’t indicated or helpful, which criteria or considerations are being used and why?

We appreciate that you’re busy but please be patient with us and take some time to explore our own theories of what might be behind our IBS. One of the most frustrating things for sufferers is to be told that such-and-such a condition is unlikely, but then do no tests to prove or disprove that. I accept that some diagnostic tests are too dangerous or expensive but for an enigmatic illness like IBS, any number of things could be causing the symptoms and we need your help to find out. We need more patient-scientists but that is only possible with the support of more-knowledgeable professionals. We have more time on our hands to explore our symptoms and we want to get to the bottom of them (if you’ll pardon the pun). I’m not saying that every wacky thing out there on the Internet should be given credence but talk us through your reasoning, explore alternative diagnoses, and agree on a strategy with us to help rule other factors in or out and pursue treatment.

Finally, please update yourselves on the latest clinical guidelines as well. I have heard stories about, and experienced, doctors who have not conducted appropriate tests or advised vastly outdated treatments. And if you are still at a loss, please consider sending us to a specialist, especially if together we have tried several treatments and tests and are still none the wiser.

 

Institutions

Ultimately, institutional changes will have the biggest impact on patients and doctors alike.

First of all, we need more cost-effective ways to help patients manage their IBS. Is it sensible to use up a doctor’s time for routine management of an IBS case? In the UK, the IBS Network advocates the training of specialist nurses in the NHS to support IBS sufferers, a suggestion that would no doubt benefit sufferers in other countries as well.

I would go one step further and give pharmacists a greater role in managing IBS, too. Pharmacists will already be aware of the various drugs licensed for treating the condition and their contraindications; they may even spot how a patient’s existing cocktail of drugs might be contributing to or causing IBS symptoms. In other words they seem ideally placed to work with patients to discover the most suitable drug(s) to treat their symptoms. We would also provide them with additional training to know when to recommend a dietician or alternative therapies.

I would also like to see institutions loosen the treatment guidelines for IBS. For instance, in the UK, the NICE advice is a useful starting point for managing and diagnosing IBS in patients but it potentially stops clinicians from using their scientific and medical judgement to request alternative tests or try out certain treatments with their patients (with the patient’s consent of course). We don’t know what causes IBS so provided a drug is safe to give and is being given for a clinical purpose, what is wrong with doctors being able to prescribe something to see if it helps a patient?

In short, there are several ways we can improve the diagnosis, management and treatment of IBS. Things start with small changes in how we as patients approach our discussions with doctors, and doctors’ willingness to engage in a conversation with patients. These will go someway to improving the approach to managing IBS. However, both patients and doctors are likely to be held back unless there are some concomitant institutional changes made as well. Policy changes aren’t always easy, and there can sometimes be reluctance in various quarters to implement change. But, at the end of the day, a condition that affects up to 20 percent of the population needs better solutions to manage limited resources in the best way possible for both patients and practitioners alike.

 

 

 


Guest Post from New Zealand for IBS Awareness Month: We Should Be Able to Talk About This

April 22, 2015

IBS Impact is pleased to welcome a guest blogger this week. Jay Thompson-Munn is now self-employed as a graphic designer and virtual assistant, after transitioning from high-level administrative employment in order to accommodate her IBS and other health conditions which commonly overlap with IBS. She also has several family members with IBS and/or other GI conditions. Jay blogs on various interests at A Jay in the Life and is the administrator of a new New Zealand-specific IBS group on Facebook, IBS Support NZ, to which she welcomes members. She wrote this post specifically for IBS Impact for IBS Awareness Month 2015. We thank her for sharing her perspectives with readers.

I’ve had digestive issues for as long as I can remember. My Mum and her sisters have some form of IBS or gluten and/or wheat intolerance. Yet, oddly it seems to only affect the women in my family. They all experience fairly similar symptoms to me: cramping, chronic constipation or diarrhea, and an aversion to fatty foods, but issues with dairy and/or gluten are the most common for us. Yet none of us have coeliac disease or an actual gluten/dairy allergy, just intolerances. No one on Mum’s side of the family would ever eat “white bread”, (including things like croissants, scones etc.) unless it was a special occasion. We always had grainy breads, or if we were skint, wholemeal – as it’s a bit less tough on the intestines.

I think it helps a lot, having family members who suffer from the same issues. But I guess I always thought it was “normal” to have this happen. Awful as it is, that it happens to so many of us. It’s great to be able to talk to relatives about it knowing they have been through a similar experience and really understand. I think it’s like that with any illness though. But of course it really is very different for every individual.

I’m always the person that gets an “upset stomach” while travelling. People often say I have a “sensitive stomach”. It seems to get off-kilter bacteria-wise very easily and I rely on bottled water even when just visiting Australia! Yet tap water is fine in New Zealand. Over the years, I’ve picked up a couple of different types of bacterial food poisoning (in 2009 I managed to contract campylobacter and was sick for over a month) I understand this can exacerbate gut issues.

I have had to rearrange my life around IBS. One of the reasons I now work from home is that IBS can be a particularly big issue for me in the morning. I often need to be very near a toilet when I’m having a bad-gut day/week. Another reason is that it’s actually hard for me to get up early enough to allow for time for breakfast and to use the toilet before leaving for work – I get a sense of urgency with bowel motions (particularly if I drink coffee, which I no longer do) and it’s a very real concern. It can be incredibly uncomfortable/painful/stressful if I can’t get to a toilet fast enough. That has improved now that I’ve mostly cut gluten out of my diet. But it was pretty hard to dash off to the loo while at work in the morning, from a meeting etc.

I started to feel guilty about spending so much of my salaried time in the bathroom. That is not a nice feeling. Even now, the first thing I do when in a new place is figure out where the bathroom is. I was recently diagnosed with Generalised Anxiety Disorder (GAD) and a big part of this was the stress around finding or being near a toilet when I needed to be, or having to ask strangers where the bathrooms are, or wondering if I was “breaking the rules” using a disabled toilet.

I also have a few other chronic illnesses, one of which is Endometriosis – which often brings its friend IBS along with it. I’ve had to deal with a combination of chronic constipation or chronic diarrhea for a long time. While I have experienced dreadful pains from either or both of these conditions, I’ve had such violent diarrhea and cramps that my body gets so exhausted from the physical stress it’s under, that in the midst of this, I passed out on the bathroom floor. Just what I want my husband to come home to! It’s horrible.

Luckily I have health insurance (these medical woes are so expensive to deal with!), so I was able to see a gastroenterologist through a referral. He recommended seeing a nutritionist, and mentioned the low FODMAP eating plan – where you eliminate all FODMAPs for 6-8 weeks and slowly reintroduce them to see which are causing you issues. I have been following the low FODMAP lifestyle for nearly 2 years now, it has been very successful for me. There is still not a heap of personal experiences with FODMAPs online and still a lot of foods untested for FODMAP levels etc. But it’s certainly making itself known around the health communities. A lot of people are asking questions about it. And I talk about it, a lot! I will happily explain it to anyone who is willing to listen.

On that note, I feel IBS and the treatment methods are not talked about enough. I recently came across a brilliant hash tag on Twitter (started by inflammatory bowel disease (IBD) blogger Sam Cleasby of “So Bad Ass”) #StopPooBeingTaboo – I genuinely think that if we discussed this more often and more openly, people would have relief from their symptoms faster. They would realise it’s VERY common and they absolutely do not need to suffer alone. For example, I have only just recently learned, after 27 years on this planet, that there isn’t really such a thing as a “bowel”! It’s a term used to describe the digestive tract, usually incorporating the small and large intestines. The large intestine is also the colon. These things make up your bowel. I did NOT know this. My research led me to believe the small bowel was the large intestine. No gastroenterologist, GP, or doctor of any form has EVER bothered to show me a diagram (except the Bristol stool chart… but that’s another story) or model of the organs and explain how they work and what actually happens physiologically with IBS.

In terms of treating my IBS, I tend to prefer the natural approach (I was on a lot of heavy painkillers for a long time for Endo and I just don’t want to take pills if I don’t need to) – things that have worked best for me are: regular exercise (yoga is particularly good at massaging the digestive organs), limiting my gluten intake and adhering to the low FODMAP diet, peppermint oil, loads of peppermint tea, ginger tea, cutting back on caffeine and working from home. I have also very recently started drinking Kombucha tea, though there isn’t any conclusive proof this works, it has been used as a digestive aid in many countries for hundreds of years. And I’m currently experimenting with eating more probiotic-fermented foods to increase the positive gut flora.

As for where I go to find information about IBS, how to treat it, what it is etc. I generally take to the Internet for info. I was never really pointed in the direction of resources, to be honest. I have done a lot of sleuthing on my own to find out. I ask doctors very specific questions, often. I look at forums, chat to others, read blogs etc. and a lot of sufferers who talk about their IBS experience online are still too scared/ashamed to use their real name. I think that’s sad. We should be able to talk about this. It’s a bodily function we have very little control over. I have listed some hopefully useful resources below:

Support group:
I was told there isn’t an active NZ wide support network, so I made one! I have created this group on Facebook – I hope to start a website soon!

Monash University FODMAP app:
This is a little on the expensive side for an app, but I have found it endlessly useful while adhering to the low FODMAP diet. It has filters for your specific sensitivities and recipes. I use it at least once a day! It was well worth spending money on.

(Note from IBS Impact. The price of the Monash University app varies by country and currency. IBS Impact receives no funding for the link to Monash’s materials or their sale, but regards them as highly reputable and scientifically accurate, as the original academic research center to develop the low-FODMAP approach. It is our understanding that proceeds are used to continue low-FODMAP research and testing of foods.  As with all of the information on this blog, our main website and social media, it is provided in the interest of reputable public awareness and advocacy, and assisting blog readers dealing with IBS to make informed choices for themselves or their families.)


Guest Post: I Know Why People Can’t Tell I Have IBS. (Becoming More Present At Work)

May 5, 2014

This week’s guest blogger is Marcy Epstein, PhD. She has IBS and other disabilities and wrote this article especially for IBS Impact. For over 25 years, she has held varied positions as an educator, national public speaker, published author of five books and numerous articles, editor, publisher, disability scholar and advocate. She received her PhD in English Language and Literature with a post-doctoral specialization in disability research and rehabilitative psychology from the University of Michigan–Ann Arbor/U.S. Dept. of Education NIDRR Fellowship for Advanced Research and is currently Principal Consultant at Ann Arbor Educational Associates, working with individuals, groups and organizations in Southeast Michigan to support lifelong learning in children and adults, literacy, diversity, educational accessibility and equity. One particular interest of hers is “the complex roles that stress and trauma play in literacy and learning.” All of her diverse personal and professional experiences give her unique perspectives on living and working with IBS that we thank her for sharing with our readers. Dr. Epstein can be contacted directly at http://annarboreducationa.wix.com/home

 

 

 

irritableowl

I had intended a French epigram for which I wouldn’t need to beg the reader’s pardon, and yet the cartoon above really says more about the interior of many people with Irritable Bowel Syndrome (IBS) than a thousand bon mots. It is not just that there really is not an extant body for humor for Irritable Bowel Syndrome. It takes a lot of work to make IBS funny. I like the cartoon because it is pithy and punny: people rarely tell when we have IBS, unless we tell them. Worse, rarely do we feel we can tell them. Worse still, we fantasize about telling them off. Ergo, irritable owls. Ergo, this introduction.

I have always wondered how, despite displaying to them what feels to me like an obviously disturbed interior, other people never guess that I have IBS. They excuse my body’s irritability with social and moral irritability: to them, I am moody or even dark, disappointed in love or work, driven senseless by the elder or the younger, or even menopausal. When I fart like foul bagpipes, they politely blame the dog. If I disappear into the bathroom for an hour, someone will kindly attribute literariness to me, observing once that I was likely off reading Babette’s Feast on the pot (au contraire!) Incredible, I hoot inwardly. How can they not notice?

Fifteen years after diagnosis with IBS, getting used to the invisibility as much as the next cussing owl, I am considerably more pleasant and serious about our condition. IBS is complex, with very limited definition medically and legally as a chronic or conditional disability. It is represented in a constellation of symptoms felt in the core of our bodies, affecting every one of our functions, not particularly visible but not invisible either, if you know how to look for it. IBS is a bit like our owl that haunts and sleeps periodically. Painful, potentially isolating, potentially threatening, IBS can seem predatory on daily lives and relationships.

Our condition joins colitis, Crohn’s Disease, and other gastrointestinal and motility disorders in both the degree of pain and discomfort we experience and in the sensitive nature of sharing our discomfort. Would we talk about our bowels if they weren’t a clear source of pathos for us?

Once upon a time, I couldn’t care less about my insides. I was one of the Iron Guts, coated with extra hot sauce and beer. Things changed for me quickly after I broke my neck in 1997, incurring some spinal cord compression with a host of neurological symptoms from tingling pain, weakness, anxiety, to irritable bowel syndrome. I wrote in my essay for Deep: Real Life with Spinal Cord Injury (U. Michigan: 2006) that I barely understood my own disability until I lay in my own uncontrollable filth in an Israeli hospital, waiting for a stranger to see and respond to my distress. In the first years after injury, as I began teaching, my ailments were pretty obvious, but again, mostly because people interpreted cues other than my condition, qualities more dignifying of me, I supposed, but misleading. I looked like a banged up car with my labored gait, smelly collar, and furrowed brow. I could fall to tears and/or lose continence at any moment. Transitions to and from my office took hours, and I couldn’t distinguish if I was too anxious or too neurogenic or simply constipated from stress. I came to see all of these as interrelated, but I couldn’t see the relationship itself.

Here was the rub: my IBS was invisible to myself. For two years I fought the diagnosis, simply because it seemed like the easy way out for my doctors to tell me I was too anxious or hypochondriac. A syndrome isn’t exactly locatable or treatable. I wanted direction: take this pill, rest for two days, avoid hot sauce and beer. My physician explained the syndrome, smiling through the pronunciation of the words, as though IBS weren’t real, really, but just something to explain what he could not otherwise explain.

In my particular case, how to handle this “syndrome,” IBS, when I am at work was subsumed into treatment for my anxiety. I stayed in the environment of work because I had to survive, and, like you, I require purpose. But I had to switch gears in my profession as a college professor, to accept that my condition—a mix of privileged and disabled—was not going to be a popular issue with me or with my colleagues. As my gut suffered, so went the rest of me: I needed surgery after surgery, my immunity to illness and to self-blame plunged, and my work ethic bowed under pressure. Teaching felt more Herculean than ever, physically and emotionally. As my career slowly suffered from my mood, weight fluctuations, anxiety, and physical discomfort, I lost certain necessary ways of working with others and gained other intrepid ways to think intestinally. It slowly dawned on me that the syndrome I was resisting was real, indeed realer than our culture is prepared to encounter. So it was no surprise to me that I didn’t want to encounter myself either. I wanted to meet the world, not my own insides. Between IBS and several hernias, I really wanted my insides to stay inside, and the outside world to stay outside.

Bowels are definitive of organic life, yet anything that suggests evacuation of our waste seems adversely indicated in civilized society. The more advanced our world becomes, the more alienated we grow from our own insides. So to speak of our irritable bowels—with our families, communities, or workplace—represents a challenge to sensitivity. The reinforced invisibility of IBS—that we both don’t show our condition nor do people acknowledge any sign of it– means that there is nothing for people to stare at or ponder or pity. The syndrome is minutely visible, the real conjecture from the swollen curves of our bellies or maybe how we hold our bodies as we manage pain. I wonder if the sensitivity works both ways, not just to oppress us but to preserve us within our culture of work: I’m not sure I would like it if people knew every time I were having a shutdown of my system or just having the experience of pain. Not only would I feel too visible as an object of people’s discomfort about bowels, but also it could slow down my productivity. There would be the exhaustion of bowel distress and its explanation.

But I do not kid myself that I am completely invisible with my IBS and remember that the effects of IBS are being felt indirectly in the social construction of my work. My condition may be invisible, but my behavior around the condition is perfectly visible. My peers cannot be that thick as not to miss me for the twenty minutes I am writing in the restroom. They may substitute a reason, but I am not at my desk. The drained, anguished look like we’ve just had something terrible at lunch sticks out a bit more at three, four, and five o’clock. The pharmacopia of anti-spasmodics and Maalox on my dresser and in my bathroom pretty much tells guests that something’s amiss in the mesentery.

IBS shapes my work life even as it disrupts it. You see, like most people with IBS, I keep working with the great majority of my symptoms. When I can finally leave my own bathroom, I get to my first appointment. When I have spasms and bloating, I breathe carefully through the pain, visualize with humor that I am still with the majority, if I count the billions of microorganisms inside. I take sick days off when I cannot think because of the pain and exhaustion.

Leong et al (2003; reprinted in JAMA/Archives of Internal Medicine) produced a retrospective analysis of administrative claims data dating back roughly twenty years: “Results of the 1993 US householder survey² indicated that patients with IBS missed about 3 times as many days from work or school annually as people with no evidence of a functional GI disorder (mean, 13.4 vs 4.9 days; P = .001). More patients with IBS (11.3%) reported that they were often too sick to work or to attend school compared with those without IBS (4.2%).² More recent survey data (1999) indicate that the actual number of missed or shortened workdays due to IBS has increased even higher since the early 1990s.”¹¹

This research bodes ill for the IBS community in a world of work that is perfecting the worker, with employers in search of employees who never miss a day of work, who can remain all day in classrooms, factory floors, or offices, whose use of short- or long-term disability is most unlikely. In short, the truth about how IBS affects us can imperil our employability.

Assuming you are working (since paid or unpaid, most of us are raising children, volunteering, holding down one job or another), there is the second dimension of IBS and working that is more germane to my experience, and that is how to endure at work, building a balance between the perfectionism of the worker and the imperfection of a major body system. One term that Leong et al use that may help represent the experience of many people working while managing IBS is absenteeism v. “presenteeism”. Presenteeism is a powerful term. It suggests presence but with consideration, the problem not of staying away from work but of staying with it.

In that spirit, I conclude this writing with a practical list to help dispel the stigma attached to IBS and build instead a presence as productive survivalists, a presenteeism that isn’t posed as an HR problem as much as a possibility.

1. Consider shared spaces. Nina Pan wrote earlier this month in this blog that “[h]aving IBS is often an isolating experience, and some people with IBS who have ‘come out of the closet’ have found that the stress of hiding and worrying about who knew and how much they knew actually triggered worse symptoms. No, not everyone will ‘get it’ and that can be hurtful or tiring, but people without IBS will never learn to understand unless we are willing to tell them. Some of them will help you and it may be the people you least expect.” If you are invisible at your place of employ, start creating some incremental visibility. Identify a co-worker and create a “mind-body friendship” with them, one informed by what is going on in your body, good days and bad. If you are already visible, create positive contexts for interactions around your IBS, supportive notes or even some apropos humor to relieve the strain, so to speak.

2. Talk with colleagues more, complain less. This can be tricky, given how exhausting and painful IBS can be at times, but embrace the principle of professionalism of deflecting intense attention to IBS outbursts (except in medical emergencies). If you are in a difficult place with your IBS, deflect as much drama as you can. Instead, choose a time of calm in which to draw others into an understanding of what is happening for you, including the incident that recently occurred.

3. Protect your rights. If IBS disrupts major functions at work, and you can document this with your physician, then navigate the stormy channels of disability rights carefully. For example, disclose your functional accommodations at hiring, not the interview. I have not seen bowel motility work often as an icebreaker for employment. Make certain the accommodations you request are tailored to your IBS rather than the IBS of psychiatric history. Be reasonable and friendly, and you will not only expand your legal status but those of our allies. Most employers need IBS education, and unfortunately, without your education of them, your rights may be as inaccessible as the bathroom in the next building.

4. Take care of yourself at work. This principle cannot be overemphasized. Respecting yourself at work breeds respect from others. Caring for yourself at work sends the message that the shared space of work is rich with real life and that you are capable of embracing your work purpose, with a bit of help or understanding here and there. I cannot prescribe what caring for yourself at work means for you. For me, it means a locked drawer with medications, water bottle, honey candies, a picture of my dog, a pacifying note from a kind student, a book to read at lunch, and a bit of mad money. I used to keep extra undies in there, but nothing too sexy.

5. Use online support from the IBS community. Some days, people are just not going to get it. Join the Facebook IBS presence and other chat rooms for people struggling at work, and again, avoid the obvious pitfall of complaining about co-workers or workplace policies. Stick with communicating about your condition and state of mind, but be careful about demonstrating any incompetency relating to your work responsibilities, anything that might be inflammatory enough to risk job security. That said, you are not alone. When colleagues don’t suffice, find people of like minds and gastrointestinal tracts.

Since we have ended IBS Awareness Month, it would be good to tell our peers soon that we are alongside them at work and perhaps also to deepen our own awareness of IBS. Let’s not disappear because our month is over. I offer these next and last two ideas as radical forms of presenteeism, meant for those who feel the tug in their guts of not being fully present at work because we aren’t making ourselves visible:

6. Offer your workplace (using your HR as appropriate) training on Presenteeism. Think broadly about how IBS shares issues particular to your line of work with other conditions such as Crohn’s Disease, pregnancy, hypoglycemia, or diabetes. Publicize IBS Awareness Month. It is unwise to promote employer micro-micromanagement into how we account for our work-product while present at work each hour of each day (nothing like being responsible for the erosion of labor rights), but talking about how to adapt your workplace toward maximum efficiency and satisfaction (emphasizing employee self-regulation) can make you a model of excellence with IBS, not despite it.

7. Think of yourself differently while functioning with IBS. Unlike other potentially disabling conditions, IBS can strike hard at our bodies, minds, and paychecks. Socially invisible, our condition may be somewhat reified as an odd complaint. However, I would argue that a significant component of our complaint is not nervous, spastic, or such. Our complaint as we manage IBS at work is that we are little understood and yet caught up in a labor environment generally unsympathetic to imperfect workers. Forget the owl. See yourself as the canary in the proverbial mineshaft, but don’t pass out from social and professional toxicity. We with IBS indicate at work the oft-immeasurable properties of understanding of difference, teamwork, and adaptability. We feel it in our guts. Don’t deny the canary’s delicacy or subdue yourself to employment perfectionism. Instead, sing or fly. Remember Maya Angelou’s words from “I Know Why the Caged Bird Sings”:

The free bird thinks of another breeze
and the trade winds soft through the sighing trees
and the fat worms waiting on a dawn-bright lawn
and he names the sky his own.

Though watch out for those fatty worms.

Full text of “The Economic Consequences of Irritable Bowel Syndrome” is available at http://archinte.jamanetwork.com/article.aspx?articleid=215426#METHODS

 


Guest Post : IBS- A Canadian Perspective, Tapping into Key Resources

May 24, 2013

 Blogger Lyndin Kane of Running From the Runs returns this week with a post for her fellow Canadians with IBS, which was written especially for IBS Impact. Readers from all over the world, also see her popular guest post from April 8, 2013 for IBS Awareness Month, which was reposted from her own blog with her kind permission. We thank her once again for contributing her work and knowledge to this blog and to the cause of IBS awareness, support and services in Canada and beyond.

According to the Canadian Digestive Health Foundation, as many as 5 million Canadians now suffer from IBS, whether or not they have officially received a diagnosis from their doctor.  Similar to the United States and the United Kingdom, irritable bowel syndrome is a growing problem in society that affects not only the sufferers, but their family, their friends and even their place of employment.  As a Canadian who has been officially diagnosed with IBS for over 10 years, I have made my way through the maze of the Canadian health care system, specifically in Nova Scotia.  When I first came forward with my concerns, my doctor was very dismissive and it was not until my mother attended an appointment with me that my GP took me seriously.  Following this, I underwent the usual stool tests, blood work, barium enemas (first day of university!) and colonoscopies before receiving the IBS verdict.  At the time, there was not much offered to me in the way of support, a few books, a diet high in fibre and seeking psychological help were all strongly encouraged.

Luckily, things seem to be changing for the better.  More progress needs to be made; however, more and more resources are becoming available to Canadians.  Upon completing research as to what types of resources are offered in Canada, I have identified a few key options that go beyond the traditional fact sheet:

Canadian Digestive Health Foundation (CDHF): This organization offers various videos and slideshows that cover basic information relating to IBS. In addition to this, fact sheets and testimonials from IBS sufferers are presented on the website.What is perhaps the most useful tool is a free app for the iPhone and iPad called Gi BodyGuard This app is designed to create a profile of you and your symptoms and allows you to track your bowel movements, your level of pain in certain areas (ex. abdomen, rectum etc.), your food intake, medication and other symptoms.  This app could be particularly helpful when working with your doctor or dietitian.

Gastrointestinal Society (formerly the Canadian Society of Intestinal Research):  similar to CDHF, badgut.org  offers fact sheets, videos and articles relating to managing IBS as well as current research about the condition.  In addition to their newsletter, Inside Tract, this organization will mail pamphlets free-of-charge to individuals and groups upon request.

Capital District Health Authority (Nova Scotia):The province’s largest health authority, through the Nutrition Education Clinic at both the Dartmouth General Hospital and the Queen Elizabeth II Hospital in Halifax, offer an Irritable Bowel Syndrome Program. Patients must be referred by their doctor in order to access the program which is scheduled once or twice a month. IBS sufferers have the opportunity to meet first in a group setting (1.5-2 hours) and then one-on-one to learn from both a nutritionist and other sufferers as to what to eat when you have IBS.

IBS Support Canada:  Founded by volunteer and IBS sufferer, Belinda Sutton, this organization offers the opportunity to speak to others with the same condition on a monthly basis either in-person or over the phone.

Can’t Wait: Created by the Crohn’s and Colitis Foundation of Canada, the Can’t Wait website and app are there for you during that moment where you are desperately searching for a washroom.  The app uses your phone’s GPS to determine your location and the closest washroom.  If using the website, just plug in your address and street name and the site will generate a list of options for you.

We have focused on the resources available from Canadian providers, however, if there are any other resources you find particularly useful, please provide the information below in the comments section and help us to continue to support each other as we struggle with this health condition.

Written by Lyndin Kane of Halifax, Nova Scotia, freelance writer and author of Running from the Runs, a health and wellness blog dedicated to irritable bowel syndrome and the often uncomfortable, always humorous, effect it can have on daily life. 

Follow her on Twitter @Rnningfrmtherns


Guest Post for IBS Awareness Month: Stigma and Chronic Illness

April 15, 2013

This week’s guest blogger is Tiffany Taft, PsyD. of Oak Park Behavioral Medicine, LLC. and Northwestern University Feinberg School of Medicine. Dr. Taft and her partner in private practice, Stephanie Horgan, LCSW, work with adults and children with a range of chronic medical conditions, with a special interest and expertise in gastrointestinal disorders like IBS and IBD. Dr. Taft and Ms. Horgan also share blogging at “Mind Your Body.” Thank you to Dr. Taft for volunteering to write for IBS Impact about her ongoing research interest of stigma, how it relates to the need for greater IBS awareness, and what readers can do to further that cause. To participate in some current research studies for IBS involving Dr. Taft or her colleagues, see the Northwestern Center for Psychosocial Research in GI.

“What did you do this time to get sick?”  “You’re just too stressed out, get a grip.”  “How can your symptoms be that bad when there’s nothing medically wrong with you?”

How many people living with IBS have heard some version of these statements at some point in their life?  While not unique to IBS, chronic illness stigma is a pervasive and complex problem that impacts millions of people every day.  You may have heard the term stigma before, which originated in ancient Greece to refer to bodily signs to expose something unusual or bad about the moral status of a person.  In 1963, the sociologist Erving Goffman expanded the concept of stigma to include:

An individual possesses an undesired differentness from what [people] had anticipated…we believe the person with a stigma is not quite human…we may perceive his defensive response to his situation as a direct expression of his deficit and a justification of the way we treat him.”*

The effects of stigma on patient outcomes are widely documented, with the most research being done with those living with mental illness or HIV/AIDS.  From these studies, we know that stigma can do the following:

  • Increase the risk of an illness to relapse.
  • Decrease the likelihood that a person will take their medication as prescribed.
  • Increase feelings of anxiety or depression.
  • Decrease a person’s quality of life.
  • Increase feelings of social withdrawal and isolation.

So what makes an illness more likely to be stigmatized?  Perhaps surprisingly, an illness that is invisible or concealable is more likely to be stigmatized than one that is more obvious to others.  The more disruptive the symptoms are, the more likely a condition is to be stigmatized.  A disease that has periods of relapse and remission is more likely to be viewed negatively by others.  The origin of the condition, whether it was present at birth, the result of an accident, or seems to be under the person’s control also contributes to stigma.  Finally, the aesthetic qualities of the illness contribute to stigma.

Based on this list, it makes sense that people with IBS feel stigmatized.  IBS is an invisible illness that usually has periods where symptoms aren’t too severe and other times when they can be downright disabling.  The discussion of bowel symptoms like diarrhea, constipation, gas and bloating are generally not welcome in regular conversation, or are met with ridicule.  And because IBS is not well understood, and lacks an underlying obvious organic cause (there are no ulcers in the colon, for example) there is an implication that the symptoms aren’t real, or really as bad as the person says.

In 2009, I published the first study to systematically evaluate stigma perceptions in people living with IBS.  We started the project by interviewing several patients and asking them what their interactions had been like with friends, family, co-workers, and their physicians.  We found that 57% of people we interviewed reported feeling some degree of stigma toward their IBS, and that the greatest sources of stigma came from friends, co-workers and employers.  Themes that were endorsed included that the public has very little knowledge about IBS, the illness is not taken seriously, there’s an implication that symptoms are “all in their head” and self-inflicted.  Logically, many of our study participants were hesitant to tell others that they had IBS for fear of negative reactions.

To follow up with this, I compared the stigma experiences of patients with IBS to those with Inflammatory Bowel Disease (IBD), such as Crohn’s Disease or Ulcerative Colitis.  Participants with IBS reported significantly more stigma, especially from health care providers, with 27% of IBS patients saying they experienced moderate to high levels of stigma compared to 8% of those with IBD.  The finding that people with IBS experience stigma from health care providers is important; anecdotally, I can attest to hearing many stories from my clients with IBS who are frustrated by their interactions with physicians, and with some we work to undo the damage done by the “all in your head” insinuation they’ve received for years.  More recent studies repeatedly show that a positive physician-patient relationship is very important in the successful treatment of IBS, but patients report that their expectations often aren’t met.

So, that’s great, Dr. Taft.  What can be done?  Unfortunately stigma is a tough nut to crack, but thanks to the hard work that’s been done in other areas like mental health and HIV we know what can help reduce the effects of stigma.  One of the best remedies for stigma is increasing awareness, which normalizes a condition and brings it into regular conversation.  Patient advocacy organizations, like IBS Impact, make an enormous difference in spearheading awareness campaigns and educating the public about the condition.   Other things that you can do include:

  • Learn and share the facts about IBS and about people who have IBS, especially if you hear or read something that is untrue.
  • Listen to the concerns of the people whose attitudes you want to change.  What are their feelings about IBS?  Do they have any fears?  Misinformation?
  • Assert yourself.  Be frank with the person and use “I” language, such as “I felt really hurt when you implied I did something to cause my IBS.”
  • Generate conversations about the stigma of IBS on a regular basis.  Be creative in doing so, like using Facebook or Twitter to spread the word about IBS stigma.
  • Use humor.  This can dispel some of the tension that comes with confrontation and can also disarm a person who is reacting negatively.  For some, this comes more naturally than others.  If this is a strength you have, use it!

I would like to thank Nina Pan of IBS Impact for having me as a guest blogger for IBS Awareness Month.  If you have any questions, feel free to email me at ttaft@opbmed.com.  You can also follow us on Facebook (facebook.com/opbmed) and Twitter @OPBMed.

*Goffman, E. Stigma: Notes on the Management of Spoiled Identity. Simon & Schuster, Inc. 1963

Dr. Tiffany Taft is a licensed clinical psychologist and is a leading expert on the psychological and social issues of chronic digestive illnesses.  She is co-director of Oak Park Behavioral Medicine LLC, a private practice near Chicago, where she works with children and adults with chronic medical conditions.  Dr. Taft is also an Assistant Professor at Northwestern University Feinberg School of Medicine, where she worked in the division of gastroenterology’s Center for Psychosocial Research in GI for 8 years. She has published several articles on psychosocial issues for people living with chronic digestive conditions and was part of a landmark clinical trial for Cognitive-Behavioral Therapy (CBT) as a treatment of IBS.


Guest Post for IBS Awareness Month: A Lesson Learned From A Young Person With IBS

April 8, 2013

Last week, fellow blogger and person with irritable bowel syndrome,  Lyndin Kane of Halifax, Nova Scotia, Canada, posted on her blog, Running From the Runs, about an encounter she had with a young student with IBS that caused her to reconsider her approach to her own IBS as well. This experience and Lyndin’s conclusion appeared so fitting for IBS Awareness Month and the goal of greater openness that IBS Impact was founded to encourage that we are reposting it here with Lyndin’s permission. Please visit her blog, and also look for additional work by Lyndin, written especially for IBS Impact, in the near future.

IBS Awareness Month

 Last week I participated in the Forum for Young Canadians for a second year in a row.  As I learned last year, it is an awesome program where Canada’s brightest students gather to learn about politics and government.  One could say that I learned a lot about these topics throughout my week, but some of my personal lessons-learned were from one-on-one interaction with my students.

There is one moment that stands out for me both as an IBS sufferer, advocate and blogger and I feel compelled to share it with you.  A student came up to me one morning just prior to the start of our jam-packed day.  She was very upset and visibly stressed – the reason?  She has IBS and was worried that walking to the day’s activities would trigger an unwelcome washroom visit.  We were able to find a solution for her through a taxi, which allowed her to attend the sessions but not have the additional worry about whether or not she could make it without visiting the loo.  The problem was, I automatically asked the following question: “would you like me to tell the group that you are running behind and will meet us there”?  Her response was to let the group know what was happening.

Shame on me.  As soon as she responded I felt both ashamed of myself and overwhelmingly proud of her.  For all my talk about being honest and not hiding my illness, my automatic response was to create a lie so that everyone would think she was tardy instead.  At almost half my age, my student did not feel the need to hide behind excuses; she recognizes that this is her reality and she faces it head-on.  I found her to be extremely inspiring.  She has achieved at a very young age what I can only hope to accomplish through working diligently via this blog and through my social interactions, the difference being that the truth came naturally to her and I have learned over the years that this condition is something to hide.

Given that this is IBS Awareness Month, for those of you who suffer with IBS, learn from her example, by exuding confidence and not apologizing or making excuses for something you cannot control.

Written by Lyndin Kane of Halifax, Nova Scotia, freelance writer and author of Running from the Runs, a health and wellness blog dedicated to irritable bowel syndrome and the often uncomfortable, always humorous, effect it can have on daily life. 

Follow her on Twitter @Rnningfrmtherns