Hi, My name is Sam and I’m an IBS Sufferer.  At least I think I am as I could also have B.A.M. or B.A.D. or Chrohns Disease or diverticulitis as certain tests aren’t 100% and others there are no tests for.  Either way, whatever the diagnosis, I have to manage my symptoms all by myself as I have never met a medical professional that could offer any kind of diagnosis, support or resolution.

How long have I been suffering?  A question I ask myself often.  The truth is I don’t know.  I remember as a child being given some chalky medicine everyday which was related to problems with eating.  No one can remember why.  Through teens into adulthood, I always had what I refer to as a fragile stomach.

I became pregnant with my first very handsome son and my stomach started rejecting food, as with any pregnancy but it seemed extreme.  My weight plummeted to below seven stone however, I went on to have a healthy baby and my symptoms once again subsided.

I was a young mum, studying business and finance at college part time with a full time job in accountancy.  At the time this seemed like a normal life to have.  My ambitions fuelled me and I was happy.  Well, almost happy, I had an underlying threat of stomach explosions which was starting to make me feel depressed. Inevitably I fell into a deep depression, something I feel guilty about as my son was only two at the time.  I was prescribed Temazepam and Diazepam (harsh antidepressants by todays standards) but somehow I summoned the strength to carry on as normal.  After six months of drug ‘therapy’ my medication was withdrawn and it was deemed a success.

Shortly after my depression had subsided, I was offered an opportunity to develop IT systems at the company I was working for and I was definitely ready for a challenge so I jumped at the chance.  My power dressing days were in full swing at this point and I took great pride in my appearance.  One morning I arrived at work in my latest slim fit trouser suit, took the jacket off and a male colleague asked ‘are you pregnant?’  I was mortified.  He went to tell me how huge my tummy was looking.  At that moment I received the first chink in my armoury.  From that day I would cover up my ‘gas baby’ with long shirts and big jackets as I’m sure women would do whilst trying to hide a pregnancy.

When my career in IT was really taking off I noticed my stomach was more sensitive in the mornings and I would visit the toilet at least three times before leaving the house.  Travelling to work became a worry, so I stopped eating breakfast so I wouldn’t encounter any problems on the commute.  I was still struggling with symptoms so I stopped having my morning cup of tea and my symptoms improved.  This went on for many years and despite not putting anything into my tummy before travelling, my symptoms were getting worse.

One day, I boarded the morning train to Birmingham and as soon as I sat down I felt excruciating pain in my abdomen.  It came on in a flash as if a knife had been inserted.  The pain was so bad it was difficult to hide it.  I had tears running down my face and I was doubled over.  No one asked what was wrong but I’m glad as I couldn’t breathe let alone speak.  This only lasted about a minute but it seemed like an eternity.  Once the pain abated I ran to the toilet on the train (you would have to be desperate to use them!) Imagine if I was in the car on the motorway!  This was the beginning of my travel anxiety.  I’m sure most sufferers have a similar story and know all too well the overwhelming anxiety that accompanies this condition.

I decided that the best way for me to live my life was to work from home.  Shutting myself away from the daily commute lottery made me a lot calmer and in turn my stomach settled down to an acceptable level.  I set up a web design company, got married and I was home for my son during his GCSE’s.  My husband and I decided to have a baby, another very handsome boy born by C section.  During the C section my bladder was damaged (a complication from the first C section) which resulted in intensive anti biotic treatment for three months.   I went on to have persistent urinary tract infections and ended up taking antibiotics for two years.  I told the doctor I was worried about taking so many antibiotics and she said its fine and not to worry.

When our son was two years old we moved to Shropshire and the UTI’s suddenly stopped replaced by more frequent episodes of exploding stomach.  I had read about gut flora and how antibiotics cause an imbalance so I started drinking actimel to try to restore some balance. This actually made me worse so I stopped having them.  I’d always been fine in the evening, my symptoms were generally up to 11am in the morning so I would limit food during the day and literally binge at night.  I started gaining weight and my heart sank when the scales read ten and half stones as I’d always been around eight and a half.  People were actually commenting on my arms and face being chubby.  I remember being in the changing rooms of a high street store with my mom trying on a dress.  I came out to show mom and she didn’t comment.  I asked her ‘Do I look fat in this?’, still no comment.  I went back into the cubicle and heard her telling the assistant that I’m not used to being so big.  I felt incredibly self conscious after that.

For the first time in my life I went on a diet.  I had tried exercising which was incredibly uncomfortable and no matter how many stomach crunches I did, I still looked pregnant.  I’ve always eaten healthily as I love vegetables, salad and fruit.  I cut the carbs and feasted on my favourite veg in as many creative ways I could conjure up.  What resulted was a bigger tummy and urgent diarrhoea on a daily basis sometimes up to six times per day.  I thought I must be intolerant to certain vegetables so I started a food diary.  What became apparent was on the days I had dairy, the diarrhoea was worse.  When I read up on dairy intolerance it seemed like the lactose (sugar) element was the issue and from that day I’ve been lactose free.  When I reflected on being lactose intolerant I remembered I hadn’t been able to stomach tea in the mornings which contains milk and the actimel drinks had escalated symptoms, it felt like a eureka moment and finally I was cured.

You don’t believe that right?  I shouldn’t have believed it either!  Although my symptoms weren’t as bad, I still had problems which seemed to get worse with every prescribed course of antibiotics for sinus infections.  It was becoming more commonplace for me to be incapacitated with an infection or some other illness than it was being well and functional.  Of course the comments kept coming to continually chip away at my confidence, ‘oh you’re always ill’……  I didn’t want to be ill and I didn’t need reminding that I was always ill but I felt like such a failure.  It’s not easy going from a great career to a virtual recluse not to mention the impact it was having on my family’s life.  If I went out of the house anywhere I would be sure to update my status on facebook so that I at least appeared to live a normal life.  I felt so lucky to live a few doors away from my sons school as the toilet was always a minute away, although there have been some close calls!  One the school run one day someone said I had the best social life on the planet.  I was so pleased to appear as if I was living a full life but in reality I was making every excuse not to leave the house.  My sister calls me Mrs Bucket which I find hilarious because although she gave me this nickname because she thinks I’m a snob, its so appropriate as I’m always working hard at keeping up appearances.  It would be the end of my world at the time if people found out about my embarrassing illness.

I went to my GP for help because I wasn’t coping with my illness.  I had once again fallen into a depression because of my unpredictable exploding stomach, feeling like life was too difficult to function normally but extremely aware that my family needed me.  On my first visit I was basically told to man up and take immodium everyday.  I left in tears.  In desperation I sent off a hair sample for food intolerance testing and received a long list back of all the foods I need to avoid, lactose being top of the list,  so I eliminated all the other foods too.  This had a slight impact but my symptoms were still present.  I read an article about Citalopram (my antidepressants) causing damage to the gut and resulting in diarrhoea and once again I thought I’d found the cause.  I went to my GP who may as well have laughed at me and told me that I’d be on anti depressants for life because it was my second episode.  He even drew me a fancy diagram to explain.  I accepted his professional opinion and continued taking the antidepressants.

My world suddenly came crashing down on me, something far worse than living with urgent diarrhoea, my father died unexpectedly.   Numbed by citalopram, I felt no emotions and hated myself for not being able to cry.  I was able to be strong for everyone in the family whilst I watched them being tortured with their pain.  To keep up appearances I fake cried at the sight of my fathers corpse in the chapel of rest but I was more worried about the location of the toilet than seeing my dead dad!   At the funeral directors my first question was, ‘is there a toilet at the crematorium?’.  I asked not to be in a funeral car incase I ‘needed to go’.

Ashamed of having no feelings I despised anti depressants and I’d convinced myself they were the cause of my debilitating symptoms; I went against my doctors advice and  started the withdrawal process and after four months I was off them completely.  I no longer felt the pain of depression however, it was rather devastating but it didn’t improve my stomach symptoms in the slightest, in fact it made them worse as I’d now developed anxiety about my symptoms which led to not working at all and feeling completely inadequate.

I moved to a new GP practice and started the diagnosis process all over again.  I had already been seeking help for the best part of ten years with zero progress so starting again was the only option.  A scan of my gall bladder revealed a large stone present and my consultant said that all my symptoms were related to this.  I was so relieved to finally get a diagnosis and a visual of something actually wrong. I went into hospital for surgery to remove my gall bladder (cholecystectomy) and the recovery went well.  I was looking forward to a life free of my disability and getting back to being me.

After the gall badder removal I experienced excruciating pains in my abdomen, a bit like that time on the train.  Piercing like a knife, I clutched my stomach and fell to my knees in agony.  Why was this happening?  The surgery was meant to be a cure.  This happened regularly throughout the day, sometimes it was mild but other times it was severe.  Whats even worse is that I would experience increasingly urgent diarrhoea that I had no control over.  I went back to my GP who wrote to my surgeon and he prescribed some powders that would diffuse the effects of the bile now leaking into my gut because I no longer have a gall bladder.  I wish I’d have been told this before the surgery.  Moreover, why did I have to suffer so badly for months on end whilst this information came to light?  Miraculously the powders worked, the pain subsided and I was able to make it to the toilet before an accident ensued.

Because of how bad my symptoms had got, the powders were a bit of relief.  I felt safer leaving the house although I would always have a change of clothes with me.  I felt like I was managing my symptoms for the first time in a long time but they were still in control of my life.  I had a myriad of tests for crohn’s disease, ulcerative colitis, stomach cancer, bowel cancer, in fact all the general stomach illnesses which all proved to be negative.  This is how desperate I was, I actually hoped I would get a diagnosis no matter what it was.  After testing was exhausted I was given the IBS label.  What kind of a bullshit diagnosis is that?  It’s basically saying we haven’t got a clue what is wrong with your stomach so we’ll call it IBS; we don’t know what causes it and we don’t know what to do about it, just ‘live with it’.

My sinus infections were getting worse so I was referred to an ear, nose and throat specialist.  I had an appointment before my self imposed venturing out of the house time of 11am (my way of ‘mismanaging’ my symptoms) as I thought I need to start leaving my comfort zone if I ever want to regain any confidence.  I drove to the hospital but as I was parking I felt a flash of pain across my stomach and an urgent need to use the toilet.  There were no parking spaces so I abandoned my car in a disabled bay, ignored the ticket booth and legged it to the toilet.  As the toilet was in sight I was sweating, dizzy and ready to pass out.  I didn’t make it I time.  Devastating. My emergency kit was the saviour that day.

After I saw my consultant, I returned to my car and broke down in tears, feeling faint and wanting to die.  I remember sitting in my car contemplating suicide and saying out loud, ‘Life is Shit!’.  This sent me into a manic fit of giggles, I must have looked like I was having a psychotic episode.  I thought about my sons and my husband and knew I couldn’t be so selfish as it would break them.  A determination rose inside me and I knew I had to dedicate and prioritise my time to getting my life back for the sake of my family.

This leads me to ‘The Bum Diaries’.

In October 2023, I started to notice a lot of blood in the toilet bowl when passing stools.  I was a lot of blood and the first time it happened I couldn’t even allow myself to process it.  The pain I suffered daily felt it should warrant bleeding and I thought let’s see how it goes.

The following week, it happened again, more than once.  I went to see my GP who immediately sent me for cancer screening.  This was carried out within two weeks and thankfully all tests came back clear except for my vitamin deficiencies.  I felt really lucky.

This spurred another referral to a gastroenterologist although I was told it would be a one year wait even for an urgent referral.  I waited.  The blood continued.