Tiny Pioneer

The Embarrassing Side to Digestive Disorders

Tiny

Did you know that there is a word to describe the phobia of having a bowel movement when other people are around, or are likely to be around?  If you are a naturally confident, uninhibited person with normal, healthy bowels, you have probably never imagined that there could be such a fear!  However, if you are a shy or socially anxious person – and especially if you suffer from a digestive disorder – it doubtless comes as no surprise to learn that inhibitions surrounding bowel movements can develop into real and serious issues. 

Many people would admit that they feel awkward emptying their bowels in situations where other people might know about it.  Ideally most of us try to cultivate a routine where we go to the toilet before or after work, so that we can have privacy and secrecy for the act.  While it’s acknowledged that everyone empties their bowels at one time or another, it is considered a requirement of polite society that you do it in your own home whenever possible.  I’ve found that in general men tend to be a bit more free and easy about it, but as a woman, there is often an unspoken rule that you must hold it in until you get home.  It would be considered a faux pas indeed for a female to poo in cubicle toilets at work; in her friend’s bathroom; in any place where she was known (e.g. her local pub); or in ANY public bathroom if someone she knew was in one of the other stalls.  Only a really confident, unapologetic, socially dominant sort of girl would generally feel comfortable doing anything like that.  Mere mortals are expected to wait until we get home, or do it very secretly. 

The problem is, for those of us affected by digestive disorders such as Irritable Bowel Syndrome (IBS), Inflammatory Bowel Disease (IBD), Crohn’s Disease, ulcerative colitis, Coeliac Disease and food intolerances – as well as conditions like adrenal disorder and hyperthyroid that may impact upon the guts – there are often times when we can neither hold our poo in, nor let it out quickly and discretely.  In these cases, unless we’re blessed with masses of self-esteem and swagger, going for a number two can become our number one source of worry.  When this develops into a full blown fear, it is known as parcopresis or ‘shy bowel’. 

At first it sounds comical – people being scared to go for a poo around others.  However, parcopresis ranges from a slight discomfort using public restrooms (something up to 35% of people experience to a degree) to a fear of even leaving the house or seeing people, lest the need to defecate arise.  Severe sufferers have been known to quit their jobs, stop socialising, avoid entering into relationships, or even contemplate suicide as a result of their parcopresis.  In 2013, a teenage girl actually died from a heart attack after going eight weeks without a bowel movement, such was the extent of her phobia.  To those who are affected by it, it really is no laughing matter.  There is a similar condition that relates to urinating around others – paruresis, or ‘shy bladder’.  While parcopresis seems to affect more women than men, paruresis affects more men than women.  This is thought to be due to that fact that in public restrooms men are expected to use urinals to empty their bladder and they may thus be in close proximity to other males while they do so. 

At this point in the initial draft of the post, I gave the entire backstory of my own IBS and parcopresis journey.  However, it started to resemble ‘The Tragic Chronicles of a Tiny Pioneer’, so I’ll endeavour to give the summarised version instead!  Basically, through a combination of poor diet, a naturally shy and anxious personality, and a period of extreme stress, I developed IBS-D in my early twenties.  (That means Irritable Bowel Syndrome with a leaning towards the diarrhoea end of the spectrum.)   I’d already been shy about having bowel movements around other people for several years – it seemed to become an issue sometime during secondary school.  In fact I declined to go on group holidays with friends in my late teens and chose not to go away to study at university, because I was too scared to deal with the communal bathroom situation.  There were other reasons why I didn’t much fancy living away from home as I studied as well, but that was by far the biggest factor in my decision.

When I got my first serious boyfriend, I would only use the toilet at his house if nobody else was in and I didn’t like staying overnight with him in hotels.  I think I’d have been even more inhibited, except for the fact that he was incredibly uninhibited about his own bowel movements and flatulence.  I still drank alcohol in those days, so that provided Dutch courage on occasions requiring overnight stays and, in any case, our relationship preceded my IBS, so my bathroom habits were more regular and within my control.  I was still very shy and secretive about it all, but because my bowel health was generally good, the emotional impact of having parcopresis was much reduced. 

Once I got IBS, things became much more serious for me.  Over the period of a few months, my tummy became so inflamed and irritated that I felt like I needed the toilet almost constantly.  I had bloating, flatulence, urgency, extremely loose stools and would use the toilet upwards of ten times a day some days.  It would have been unpleasant even if I’d felt able to go to the toilet wherever I was and whomever I was with, but for someone as shy as me, with the inferiority complex I already had, it was life-ruining.  Here are some of the ways it affected me:

  • I left a job I loved to take a low paid, working from home job.
  • I avoided eating out.
  • It significantly worsened my anxiety.
  • It significantly lowered my already rubbish self-esteem.
  • I avoided days out.
  • I hated staying overnight at subsequent partners’ houses and I avoided it whenever possible.
  • I avoided car sharing with friends and eventually whittled my social circle down until I had no friends at all. 
  • I gave up dance classes, because they were moved to a morning time and my symptoms were worse in a morning.
  • I avoided going out in the morning full stop. 
  • I frequently took Immodium if I had to leave the house.
  • I carried spare knickers, sanitary towels, tissues, body spray (to use as air freshener), essential oil (to drop in the toilet to create a film to capture the smell), intimate wipes and a flannel wherever I went. 
  • I avoided pursuing the sorts of careers I was more than qualified for, because they would have meant being out of the house.  This has cost me well in excess of £150,000 over the years.

I was in my second serious relationship when the IBS developed.  I told my partner virtually nothing about it and I never, ever felt able to use the toilet around him or tell him if I needed to use it.  Our dates were often stomach churning, bowel clenching affairs as I tried to hold in every trump and resist every urge to use the toilet.  Even if he was upstairs sleeping and I went to the downstairs bathroom, I still could not just relax and go.  I knew he prized ladylike behaviour and I was terrified that if he knew I was using the toilet, I’d be devalued in his eyes.  Almost laughably, I was TWO YEARS into my THIRD relationship before I could bring myself to use the phrase, “Please can you turn up the television/music while I go to the toilet?”    

In case you’re wondering why I needed to announce the need to poo and couldn’t just go secretly, I shall elaborate, though if you suffer with a digestive disorder yourself, the reasons are probably glaringly obvious...  When you have digestive issues, going for a bowel movement does not always involve a nice solid poo sliding out quickly and quietly.  Even now that my digestive health is very much better, my morning bowel movement can take up to ten minutes and it is rarely quiet and discreet.  When I eventually started to talk a little about my fear of using the bathroom, people were really nice about it, but they’d say things like, “Oh, I hate it too, but I just run the tap/spray nice perfume and nobody actually times how long you’re in there for!”  It would require a fire engine hose and would cause a water shortage were I to attempt to drown out the noise with tap sounds, I assure you.    

During the worst of my IBS, I had diarrhoea almost daily for five years with all the noises, smells and long periods of times in the bathroom that that implies.  I cannot convey accurately enough how horrifying it is (especially, I suspect, as a young woman) to feel like you are about to soil yourself in a public place and yet feel that using the toilet is not an option because you are among people you know, who may judge you.  I felt that to use the toilet when out with friends or at work would render me a disgusting and dirty person.  I felt that were anyone to hear me in there, or if anyone were to come into the ladies’ room when I was in a cubicle, that I would not be able to cope with the embarrassment that would cause – nor the possible bitching and criticism it would attract.  The nature of my problems meant it simply would not have been possible in a house, pub, office, work or restaurant environment to pop off unnoticed for a bathroom break.  My absence and the intrusive noises that replaced me would very definitely have been observed and it was this that caused me so much humiliation and distress that I felt giving up work and avoiding friends was the only solution.    

The reason that I wanted to write a blog about this is because those who have digestive issues are often so embarrassed by their symptoms that they are unable to talk about them and ask for the privacy they need when they want to use the bathroom.  On the other hand, those who have never had digestive issues may be completely unaware that they present so many emotional hang-ups.  For years before Tiny Pioneer came into existence, I knew that if I ever found relief from my IBS and crippling anxiety (gut health frequently has an impact on mental health) I would write about my experiences to try to help other people.  A few months ago I was sent this link to an article about a young woman who committed suicide because she developed a digestive problem from being on medication.  Although she had a family, a partner and a job, she felt so embarrassed and worthless because of her toilet troubles that she took her own life at the age of 23.  This really resonated with me, because I wasn’t very much different in age to her when I was experiencing the worst of my IBS.  I’d like to think I can offer hope and support to others through my story. 

If you are suffering with a digestive disorder and/or parcopresis, the first thing I want to reassure you of is that with dietary and lifestyle changes, some of your symptoms are highly likely to improve.  It may take you a while to figure out what those changes are and you will probably always have quite a sensitive digestion, but there is no reason to believe that you will be afflicted with daily diarrhoea, constipation, pain or flatulence for the rest of your life.  If you have any kind of gut complaint and you’re new to nutritional principles, my absolute number one recommendation is that you eliminate gluten, dairy, alcohol and sugar for a period of time and then Google ‘leaky gut’ and adopt a heal, seal and repopulate approach to your gut lining.  It took me years to figure out that maybe I should change my diet, but when I did, I could feel progress within days.  Over the years I made loads of mistakes and adjustments, but the fact I felt some progress so soon let me know that I was finally on the right tracks and this gave me hope and determination. 

Things like meditation, hypnosis and improving your self-esteem can have a place in dealing with digestive problems, but I pursued the ‘it’s all in your head’ angle for FAR too long before I changed my diet.  It doesn’t matter how relaxed and positive you are if you continue on a daily basis to aggravate the lining of your gastrointestinal tract with substances to which you are intolerant.  There are very few gut issues that will not respond positively to a truly healthy diet, free from common triggers, and a period of healing supplements.  I urge you again to Google ‘leaky gut’ and learn all that you can about how to heal yourself.  It is very much easier to lessen the impact of parcopresis when you don’t have constant diarrhoea! 

The second thing I want to reassure you of is that your life still has value.  Your digestive issues do not make you unlovable, un-dateable, useless or undeserving.  I eventually came to feel that having IBS was my most significant feature and that I was an inferior person that nobody would want to spend time with if they really knew me.  When I finally reached a point with my third partner where I felt able to use the toilet around him, I was so grateful to him that I set virtually no boundaries for how I was to be treated.  I felt that I was lucky to be with anyone at all and that how he actually behaved towards me was irrelevant, because nobody else could possibly want me.  At the time I was in my twenties, intelligent, pretty, caring, loyal and occasionally even quite funny!  I added loads of value to his life and yet I couldn’t see it.  I really often wish that I could go back in time and give the twenties Tiny a good shake!  However it might feel to you, your digestive problems are not the ONLY notable feature you have.  List your positive aspects and start to reiterate to yourself that you have a lot to offer the world! 

Thirdly, you are probably making your problem far bigger than it needs to be.  Unless you’re stuck in an incredibly bitchy and immature environment like a high school, people are generally nicer than you imagine and they’re generally less interested in you than you imagine.  When I started to talk about my hang-ups (and it was a gradual, often highly emotional process), my then partner assured me in the most graphic and emphatic terms how very little it would affect his feelings towards me if I were I to use the toilet at his house.  My next partner held the same view.  In other words, it was ME who was making my IBS into an issue, not my partners or family.  Had I had any friends left to confide in by the time I’d found enough courage to give full disclosure, I’m sure they would have felt exactly the same.  Although to me it still feels quite significant, my family and partners really don’t care how much time I spend in the toilet or how much noise I make in there (although I still always request television or music for bathroom trips when partners are present!). 

If you have a bowel disorder and/or parcopresis and have not confided in any of the significant people in your life, I really do urge you to choose the one you trust the most and tell them.  I know how excruciatingly embarrassing this can be – if we were the kind of people who could easily talk about our bowel movements, we wouldn’t have parcopresis in the first place.  I do promise though that the longer you try to resist using the toilet around your closest people and the more you will isolate and alienate yourself.  It took me many tearful conversations and several months to confide in my partner, but once I had told him, we were able to start working on it and after two years I was finally able to successfully use the bathroom in his house.  This opened up a whole world of having meals with him, going on drives with him and generally feeling more confident around him that would have remained closed to me otherwise.  And because he could see how very much it had affected me, he never teased me about it, betrayed my trust or made me feel inferior because of it.  Thanks to his patience and unwavering reassurance that he would still fancy me if I went for a poo, in my next relationship I got the whole process down to a mere three months! 

Whether it’s a partner, a parent, a best friend or a sibling, please make an investment in your own future freedom and confidence by telling someone.  You might have to tell them in stages, you might have to write it instead of speaking it, you might have to prepare a script to get you through it.  But your life will improve immeasurably if you have one ‘safe’ person.  And once you’ve got one safe person, you might be able to get another!  The first few conversations and toilet trips will be really hard, but it does get easier with practice.  Nobody who cares about me has ever made me feel embarrassed or inadequate for an IBS flare up, for needing to use the toilet at an inconvenient time, or for being so inhibited. 

Please bear in mind – and I really wish I could go back and tell my younger self this – that if somebody I care about hears me in the toilet and teases me or makes me feel ‘less than’ as a result, that says far more about them than it does about me.  I observe the rules of polite society by using a toilet when I need to defecate and by not breaking wind indiscriminately at inappropriate times or in inappropriate situations.  I also leave toilets clean, I use air freshener, I wash my hands when I’ve been and I never have intimate contact with anyone if I’m not ‘as clean as gold pants’ to quote the advert.  In short, I am a hygienic and polite person.  I also have lots of nice qualities that have nothing whatsoever to do with my bowels.  I’m sure you are just the same!  Therefore, if the worst should happen and the person you confide in does belittle you in any way, just remember that it is absolutely no sleight on you.  How people treat you is usually a reflection of them, not you. 

My IBS is loads better now that I eat well and take better care of myself, so that has significantly lessened the impact of my toilet fears.  My quality of life has improved immeasurably now that going to the supermarket, or for a meal, or to appointments is not wrought with fears of soiling myself or having to find safe toilets.  On a day to day basis, my tummy generally gives me very little trouble and I never could have believed seven or eight years ago that I’d come to enjoy such great gut health.  I am still affected by parcopresis, but it has certainly improved a lot.  If I made new friends now, I think in time I’d feel able to confide in them and find a way to become comfortable around them, which is something I certainly wasn’t able to do ten years ago. 

I hope that reading about my experiences will provide comfort and hope to any of you who are struggling with the emotional impact of digestive matters.  If you would like to confide in someone, but can’t find the way to do it, maybe you could email them a link to this post and allow it to do some of the explaining for you.  You may find the website www.shybowel.com a helpful resource – knowing there were other people who shared my worries really helped me to overcome some of my inhibitions!  If you look very carefully, you will find a post on the message board from me, although it is under a false name! 

Finally, in case you’ve got the impression from reading this that I’m really confident, brave or full of swagger; I assure you I’m not.  My self-esteem is most certainly a work in progress (I’m pretty sure I didn’t have any until about seven years ago when I made a concerted effort to start creating some!) and I’m naturally very submissive and quiet.  I’m not really risking anything socially by posting this in the public domain, as I live such an insular life that if anyone I know in the real world has a laugh about it, I won’t know anything about it anyway.  However, I felt so strongly during my IBS days that there had to be a reason for my experiences and there had to be some good come of them, that I’d have written and posted it in any case.  Trust me, if I can improve my gut health and ditch some of my toilet inhibitions, anyone can!  Your life has value and there is hope. 

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