Our Members

People living with IBS often feel isolated and alone, embarrassed to seek help or talk to anyone about their condition.  Many of our members have had several tough years living with IBS gradually starting to understand their triggers and learning how to manage their symptoms.  By sharing their stories here, they hope to help others who have just been diagnosed with IBS or those who are plucking up the confidence to talk to someone about how they are feeling and what they are experiencing.

People's Stories 

Thomas

Thomas

Charity Ambassador


Bear with me. For the purposes of this piece, I will be referring to ‘taking a poo’ as ‘going to the toilet’ to avoid having to write it out numerous times!

I was always a child who had to go to the toilet a lot which never really affected me until I reached secondary school. As with many sufferers of IBS, I would go to the toilet to relieve the pain of bad abdominal cramps.

Whenever the pain and discomfort (not to mention embarrassment) occurred, I would go at every opportunity possible to avoid being stuck in a classroom full of my teenage peers and potentially unsympathetic teachers (although this be may be unfair as I never informed anyone of my condition).

Looking back on it now, it’s obvious that I was giving myself a complex. I would dread any kind of social situation for fear of not knowing where the nearest toilet was. This anxiety was also a huge trigger for the cramps – the more I worried, the more pain I would have, and the more pain I had, the more I would worry. To this day, when arriving somewhere new, I scout out the nearest bathroom. It puts my mind at ease to know that if I have to go I know exactly where it is. I would always consider toilets almost as ‘safe havens’.

As you can imagine, all of this made for quite a quiet child and, whilst having a core group of friends, I became introverted. Despite this, I enjoyed performing onstage at my local theatre. Looking back on my time in musicals and plays, I don’t quite understand how the two managed to co-exist (my IBS and my performing), but they did and I believe I gained confidence through my acting and singing.

As I entered my late teens, I made a decision to start to understand and manage my IBS rather than let it dictate my life. Some triggers were obvious (anxiety, spice, sugar) but others developed over time as my body became less resistant to them. I soon discovered alcohol to be a significant trigger which, as an 18 year old at the time, seemed like the end of the world. However, with the stubborn attitude of my age, I resigned myself to drinking anyway and dealing with the consequences later, ie giving myself the day after as a recovery period. I hardly drink now as I associate alcohol with the pain it brings.

I continued acting and singing at college, then university which is where I came to decide that I didn’t want my IBS to hold me back. Now I live with the mantra that I will never allow my IBS to be an excuse or stop me doing what I want to do as I had done so many times as a child.

One of the most difficult things is being on stage in front of an audience and having to smile through the pain and discomfort, but I do because I’m stronger than my IBS and it can’t stop me!

One huge thing that has helped me was having peers who understood. I found that the older I got the easier it was to find friends who didn’t judge me for something that I couldn’t help, who were considerate towards my condition, and who even gave me space when I needed it; some of them even going through similar situations themselves.

The term IBS is itself often used as a ‘blanket term’ and sometimes slapped onto any indefinable problem a person may have with their gut, stomach, or bowels. I believe this is due to a lack of research and understanding of this non-life threatening but heavily life affecting condition.

As I continued through my twenties (developing my most recent trigger of caffeine), I found people in similar situations who could openly talk about everything concerning their bowels. It’s comforting to be able to have a grown up discussion about IBS with someone who is also experiencing it (of which there are many). ‘Toilet talk’ is still seen as quite taboo and embarrassing to the general public. Even having IBS myself and speaking openly about it like this I still cringe and can’t bring myself to write ‘taking a poo’ as if it is a ‘dirty’ or ‘unclean’ word. Unfortunately, though I have found people to confide in, there are countless others who have no one to turn to in comfort of their condition. This can make it incredibly difficult for people to cope with the various ways IBS can manifest itself (I haven’t even touched on issues with metabolism or body dysmorphia).

As a 27 year old, lucky enough to have a career in the band, Collabro, with three great guys who respect and don’t judge me, I’ve reached a point in my life where I’m comfortable discussing and even joking about my IBS, despite the pain it inflicts. I figured out a long time ago that, by making a joke of my condition, rather than feeling ashamed of it, I released its stranglehold on me mentally and, by being unabashedly open, my peers could be as comfortable dealing with it as I have become.

Unfortunately to a lot of people this may come across as crude and, in that instance, if people with IBS are to not feel ashamed to talk about their own bodies, changes must be made to raise awareness and better understanding of IBS.

Thomas Redgrave is an Ambassador for The IBS Network charity.

Sara

Sara

Member


In a ‘moment of madness’, I booked flights to New York (NY) to see my brother and his family. Readers might ask - why on earth would I consider such a lengthy trip, and what made me think that I could actually achieve this?

I’d had a few months of relatively calm health and achieved many of my small goals – this felt like the next step, albeit a big one. I wanted to do this but I was also strongly motivated to try and beat back what I called ‘my dragon at the door’. I was simply down to my last ounce of acceptance that the fears built up over the years of living with IBS-D would continue to rule my life.

My IBS-D symptoms started over 20 years ago when I was working and living in London in a stressful, but enjoyable job, advancing quickly up the career ladder, and enjoying city life. A difficult break-up of a long-term relationship, and increased pressure at work coincided with a few embarrassing incidents when I had near misses getting to the loo in time, and I then started to experience cramping and debilitating energy-sapping diarrhoea more frequently. I went to my doctor, convinced they would say it was ‘x’ and if I just did ‘y’ then all would be well.

The naivety of my initial response to these symptoms did little to prepare me for the next few years. Tests and more tests, getting sent away by doctors with the wrong medication (to treat constipation), seeing a homeopath (helpful but only short term), having internal examinations at the hospital. I felt I was going around in circles, bothering doctors who were too busy to treat what they saw as trivial and when the tests showed there was nothing life-threatening I was told it was “just IBS” and that was that. Live with it.

So, I did just that, and in the process, I slowly lost that hopeful, positive and confident young woman and became a frightened, insecure, doubtful and increasingly ill one. I carried on working, but London soon became more challenging than ever and I would dread the long commute. Any invitations to see people were refused and I withdrew more and more from my social circle. In the early days of my change in health, I had met a lovely, kind and gentle man, who I now lived with and it was a constant worry that I was letting him down. I could see the woman looking back at me in the mirror was no longer the outgoing, happy-go-lucky girl he had first fallen in love with.

Amazingly, he stuck with me, and is still here by my side to this day. This has played an integral part in my ability to achieve what I would have considered impossible five years ago. Because, I flew back into Heathrow from NY, having not only booked those flights, but actually boarded, transferred through busy traffic to my final destination, walked those NY streets and eaten out (!) and then completed the return journey. Right up until the last moment I thought I might back out, but somewhere inside I guess there is still a confident, outgoing girl just waiting to be acknowledged, and I thought it was time to reclaim her!

I’m writing this because I know what it’s like to fear the world, to withdraw so far you become agoraphobic and lose yourself. For several years I worked from home, rarely having to leave the house. I thought this was the answer and, for a while at least, it did give me some peace. But, it just made it easier to lead an increasing insular lifestyle and it fed my insecurities. When I lost that job and had to get back out into the workplace again, I really had to face some long-held fears. How would I cope with interviews, let alone going into an office every day? But it’s amazing what an incentive the need to pay the mortgage is.

Several years later, I now work for a local charity in the fundraising department. Stressful, full on at times, and not a job you can do without being totally honest with your boss about your limitations. One of the first things I had to do was be very clear that travelling long distances was not going to happen!

I am surrounded at work by inspirational, strong, adventurous women. My family are all high achievers either personally or professionally. I live a privileged life in a beautiful place. I have a loving, caring family and a good job. I want for nothing. But my IBS-D has continued to dominate my lifestyle. It has taken me several years to face one challenge at a time to try and retain a small amount of self respect. Travelling up to London on the train, going for car journeys any length more than a few hours, going to social occasions, sitting in meetings, all carried a big dose of fear for me. But one by one, I have made myself do these things.

So I looked at a flight to NY as a sort of therapy. By tackling what for me was a huge challenge, it would hopefully make the day to day challenges less frightening.

Just under three months before the journey, I was able to relax a little initially and plan ahead. The flight was nearly eight hours there, shorter on the way back. My brother would meet me at the airport, but the transfer into NY to his house was a big unpredictable worry. Whilst there, how would I cope with food, as often my guts would wrench and cramp just after eating. My mantra became, ‘what will be will be’ to a certain extent.

I found several things which helped:

I started a journal. Every day I would write down how I was feeling. It was repetitive and full of angst, but it meant I got it out of my head and onto paper. Close the journal, and resume daily life.

I learnt to meditate. 10 minutes each day taught me to breathe, centre, relax. It gave me techniques which I would call on during those moments when I wanted to run. There are a few online apps you can use – I found headspace.com excellent.

I made a friend of my fear. Fear is there to protect us and, on the whole it is just doing its job. It is saying “avoid that, don’t go there, stay safe, don’t upset the status quo, don’t venture…”. By befriending fear, I could step back and say, thanks very much fear and for walking alongside me, but it’s fine. Please relax, calm down and leave it to me.

I taught myself a ‘Tapping’ technique for those moments of high anxiety. Google this. It works!

I made something positive about the upcoming experience. I am currently teaching myself to make clothes. I set myself the goal of making a full length tweed coat to wear on my trip. Not only did I achieve this, I also made an oilskin flight bag to carry all my comfort-related paraphernalia en-route.

I gave myself lots of distractions for the journey – books, audio on my phone, crossword puzzles, and my trusty journal to write in.

So, why did I put myself through this?

Every person will have a different motivation, but when you are feeling at your lowest ebb, knowing that you may achieve something you once thought impossible is a massive confidence boost. I told only those closest to me that I was doing this. This removes the pressure you might put on yourself that, once you’ve told everyone, you then have to complete it. This gave me a ‘get-out’ clause if I felt I could not go through with it.

As the day approached, I started to become more unwell. I did not want to accept that it was my subconscious giving my guts the ‘danger’ signal, but it was very likely. I altered my diet to cut out foods that sometimes irritated me, such as dairy, fatty and processed foods and coffee.

The night before we left, my anxiety was sky high. We had a very early flight so would have to leave at my most gut-sensitive time of day. A night of burning, feverish, anguish threw every conceivable terrorising scenario at me. My guts wrenched and rumbled. My mind told me that I was a fool and my body reacted predictably.

But somehow, I knew now that I just had to do this. My brother would certainly have accepted it if I hadn’t got there, my husband would have told me it was fine… but I would very likely have had the full breakdown that had lingered and threatened to take me down over the years. I had to try.

At 4.30 am I started to get ready. Breaking it down into simple steps was really helpful. I have tried over the years to just skip food, but I cannot function and get dizzy if I don’t eat, so I knew I had to have something. I ate a few spoonfuls of my usual porridge with rice milk and had a cup of black tea. One hour later I took two Imodium Comfort, then got dressed.

Peace of mind is so important. The one thing I have always struggled with is the ‘what ifs’. I have learnt over the years to go through the ‘what’s the worst that can happen’ scenario and to accept that, at most, I will be embarrassed. If I couldn’t find a toilet in time, this would be beyond embarrassing. So, I wore incontinence pants to travel on this journey. Knowing I had this extra protection gave me a small comfort, and slowed down my heart rate during the periods of travelling when I knew there was no possibility of going to the loo. I know some people would not be bothered by doing this, but I found it so hard, to even go into the chemist to buy the pants, let alone put them on.

If you are considering travelling, by plane, train or boat, there will certainly be times en route when you will not have access to a toilet. Wearing this protection will comfort you, I promise. One thing I will add though, I did get searched at security and the woman asked me what I had under my trousers. I explained I had ‘extra pants’ and she was absolutely fine about it.

I was worried that the motion and acceleration of the flight, followed by the ascent would turn my stomach over, but when things are so far out of your control, you just have to go with it. Remarkably, I think your adrenalin in this situation works to help you. Coupled with the Imodium I had taken, I had no symptoms either during take-off or during the flight.

What followed were two days of me being in situations so far outside my little secure comfort zone but I somehow managed it. With the help of frequent prayers and more Imodium, not only did I have a relatively bowel-controlled few days, I very nearly relaxed!

Now I am home, I have felt a great sense of achievement. Yet, I am sad that what is easy for so many, is so very hard for those of us with IBS to do. This has not cured me. Today my stomach has been out of control. But, when half the struggle is mental, I know that my mind is fit and healthy. The ‘dragon at my door’ has gone away for now. And that gives me the confidence I need to continue to live the life I choose.

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