Simon's story
1st November 2017

Simon started developing symptoms of IBS back in 1995, roughly nine months after his appendix was removed. Over the forthcoming years his symptoms intensified. He was only officially diagnosed with IBS by his GP/hospital consultant in 2013.

Living with IBS long-term

I live with IBS on a daily basis and have uncontrollable bouts whenever there is a flare up, often with no warning. My symptoms consist of a constant urge for a bowel movement, despite just emptying. On occasions and for no apparent reasoning, I awake in the morning and unbeknown to me the bowels have a plan in place that will require close proximity to the facilities. When this occurs, bowel movements of around 20 times a day can occur. As you can imagine, this leaves me exasperated, exhausted, uncomfortable and quite often, it feels as if my insides have gone! It can then take a few hours for me to regain any momentum and actually feel functional again, but it does not stop there. Just as I regain normality, the urge returns, “what again” I say to myself, “what’s left?” – probably not much toilet paper that’s for sure!

Travelling, planning events, or simple days out require organisation. You have to be prepared for an outburst, sometimes the planning pays off and you feel a sense of achievement that every eventuality which might have occurred has been covered. On other occasions, all the planning was not required as your bowels decided to behave! When this happens, seize the moment with tomfoolery and shenanigans as these moments are precariously infrequent. 

I keep humour involved and with a condition such as IBS, you need it.  Phraseology, often my own creativity is used to make the thought, destruction and motion of going, more bearable.  Phases such as ‘toilet time’, ‘I’ll be in my office’, ‘it’s the big ride at Alton Towers’ or even ‘trap one & two are fully functional’ are used. Humour is very important and dissociates the stigma of having IBS. Probably the best advice I can give is if IBS is affecting your life, then embrace it, be open and honest about having it and try not to hide from people both personally and professionally. After all, IBS is part of you and this makes you unique and quirky, and perhaps that’s the reason why people are drawn to you.   

To be transparent, my IBS is not horrendous every day. Sometimes, the symptoms don’t appear or I manage them rather than them managing me. Over a course of seven days, my IBS can be sporadic. I can have daily issues or one bowel movement a day, appearing to be normal, lasting for a whole week or even longer. When this happens, it feels like I have won the lottery and freedom prevails! However, in all seriousness, experiencing a few days of normal movement and no IBS can be liberating, making you feel that you are on top of your condition. When this happens, I embrace it with plenty of jubilation.

During periods of reduced IBS activity, I have subconscious thoughts of, “it will return” circulating. This is what IBS is all about, and I have to be prepared for this. 

Unfortunately, nothing really helps my IBS. I’ve tried various diets, medication and lifestyle changes that alleviate the symptoms for a few months, then the bowels know there has been a change, and they develop a cunning play to override this, then the IBS is back. It seems, for me, as if the medication or adjustments no longer work as the bowel becomes immune. For example, if you take too many tablets when you have a cold/flu instead of allowing your bodies’ immune system to fight the cause naturally, when you really need medication, its effectiveness is vastly reduced.

However, there is one treatment that never fails in extreme situations – Loperamide. This, I must stress, for me is my ‘total last resort’. While it can stop bowel movements instantly, lasting for a few hours, this does not reduce the internal functionality of the body. 

When I take Loperamide, it creates a temporary backlog that eventually needs to exit.  Normally, this happens when the medication has worn off, usually after four hours, then I know that I really do need some ‘toilet time’!  For me, it’s better out than in and the last time I took Loperamide was 18 months ago, so this is how ‘last resort’ it really is. 

Bringing out the ‘big guns’!

A normal day for me living with IBS is generally no different than a non-IBS sufferer, except consideration of the day’s bowel movements and locality of toilets are paramount. Has IBS affected my personal life?  Yes, but not continuously. You might be able to relate to this…… going on a date with IBS can be interesting (but let’s not go there). All I’ll say is that this is the time when I might bring out the ‘big guns’ - my Loperamide medication!

As well as treatment, being part of The IBS Network community where I can speak to experts as well as others who have similar symptoms has helped over the years too. People who don’t have IBS, often can’t relate to what I experience on a daily basis. It’s annoying when non-IBS sufferers say, “how can you have the need to go to the toilet again? You have just been!” My reply, “think of a time when you have had a stomach bug or a dodgy ‘mutton vindaloo’ (as in a Del Boy Curry from Only Fools and Horses) that urge to go for me is there all the time.”

On a final note, don’t let IBS depress you, cause you major life alterations or even stop you from activities you want to enjoy. It’s about planning and working with your IBS, allow it time and hopefully you will have occasions when it won’t be so bothersome. Friends, family and loved ones will understand as you are not IBS, IBS is just a part of you, that makes you the person you are today.

Yes, IBS sufferers and I am one of them, wish this condition would just disappear, perhaps one day it will but until it does, laugh with it, make the best out of situations and on some occasions you might be able to use it to your advantage. ‘Embrace the loo seat!’