The Truth Behind The Smiles

I will continue my story.........please pop back and read the next section.


Updated 9th July 2006


A few people in blogging land have asked me what Crohn's disease is. After much thought I have decided to write my history of Crohn's here. I have to say, the only medeical knowledge I have is what I have learnt along the way. If you are reading this and recognise any symptoms, don't take it you have Crohn's....visit your own doctor. Every person who has Crohn's is different, everyone's symptoms are different and everyone's problems relating to Crohn's and what comes with it are different.

A word of warning, this will be written by ME, no holds barred. So if you are squeamish, or don't like bad language or a silly sense of humour, look away now. Go read someone else's blog that is all roses and white picket fences.

I hope you enjoy the journey as much as I will enjoy replaying it in my mind.

Stay for the ride I'm sure it will be fun.


Whisky (aka G&T)
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I think the day I realised that there was something wrong with me, was the day a family member asked me if I was sniffing glue. It might seem like rather an abrupt question, but the change in me had been that dramatic, I guess it was one of the easiest conclusions to come to.
After all I was showing a lot of the symptoms. Lack of self worth, weight loss, lack of appetite, only wanting seclusion, and having the ability to sleep for twelve or thirteen hours at a time.

My answer of course was a strong and resounding NO!

I wasn’t battling with an addiction, I wasn’t reliant on any form of drugs, alcohol or at the time nicotine, I didn’t have anorexia or bulimia, but I did have a problem.

For the previous two years or so I had been blighted with acne, so much so, that one day a friend came to see me, and I was too embarrassed to say hello due to my spots. The spots came from the fact that all I could eat were biscuits, chocolate, burgers and sweets. Being brought up in a public house made things a little easier. The freezer was always jam packed with chips and burgers, and it was easy for me to help myself. I ate only what my body craved, anything else would be difficult to eat, making me gag, or feel sick, and always result in endless trips to the toilet.

Numerous doctors visits had put this down to being a “normal teenager”, and that soon I would grow out of it. Luckily my parents knew me better, they were determined to find the answers. So much so, that my problems were at one point blamed on the fact that I had an “overprotective mother”.

Eventually my spots disappeared, I managed to change from an ugly ducking to a reasonably graceful swan. Although being only five foot two I probably resembled a cygnet more. I found myself a boyfriend, a place in drama college, and tried to put my “teenage acne and eating fads” behind me.

I threw myself into my dream world. Who could ask for more! Eight hours singing, dancing, acting, set building and design, wearing costumes, and above all being someone else.
I was the same as most of the other students. I ate junk, I started smoking, I shared jokes. For the first year it was all fine. The second year was more difficult, more scripts to learn, more plays to write. I was juggling a three year Diploma, with writing a musical with a friend, and singing as one half of a duet. As well as Shakespeare and Pinter, there was nightly visits from my now serious boyfriend. In amongst gaining my credentials I was falling in love.

When it came to the third year, I got engaged, I turned eighteen, my friend and I had been given the green light to produce the musical we had written at the college along with the full use of the college facilities, stage, costumes, lighting etc, I was playing Grandma Mouse in a touring pantomime, and then, one by one my dreams crumbled.


The college theatre was burnt down, putting a complete stop on any further productions including our musical. My lecturers were querying why I wasn’t in all of my classes and asked my parents about it at an open evening. My Mum’s reply was “if she isn’t there check the toilets”.

Can you imagine a human size mouse, padded up to the nines trying to squeeze into a toilet cubicle. That was me. Two or three times in the morning before I left for college. Six or seven times throughout the day, although luckily never in the middle of a performance! And then a further five or six times at night.

I was one exhausted Grandma mouse, but this Mouse wasn’t going to give up without a fight.

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Luckily I was still covered by my parents health care plan and I went to see a private specialist. Thinking back on it now he was more like a wizard. He filled me with potions and lotions, and put me on magic tables that tilted and turned while he took x-rays. I had the dreaded colonoscopy without any anaesthetic, and even after being subjected the pain of that, we still had no conclusive results. In fact, he put it down to the stress of getting married, even though my wedding was well under control, and still over a year away.

After endless visits to my GP, he agreed to send me to see a gastroenterologist at our local hospital to conduct more tests. Initially I didn’t see the consultant himself, but one of his registrars. The outcome of my first visit, was that as I had a mild base metal allergy on my skin. (Which luckily meant I could only wear gold). I had to avoid eating or drinking anything that had come into contact with metal.

You should try it…..it’s fun!

I couldn’t eat or drink anything that had come out of a tin or can, been cooked in a saucepan. I wasn’t allowed to eat using a metal knife and fork, they had to be plastic. I already had a limited choice of food due to both my trips to the toilet and my sickly nauseous ness, and this left me eating a diet of white bread, and the odd tomato.

I went for my second fitting of my wedding dress, and the assistant said she would have to change the measurements again as I had lost weight. This is what some brides strive for. They work hard, diet hard and exercise hard to lose weight for their big day. I was getting to the point where I ate three mars bars a day just to keep my weight up!.

By this time I had left college, and was working as a receptionist for a car hire company. It involved two bus trips and a five minute walk there, and the same back. Most nights I rang my soon to be hubby to come and collect me. I was normally exhausted, and also too scared to make the journey on my own in case I got caught short without a toilet. On the nights he didn’t collect me, I would get off the bus in town, and treat myself to one piece of chicken from KFC. It was my way of thanking my body for letting me get half way home.

Soon a friend who worked in town was dropping me off before she parked. It meant a five minute walk across the city centre. Some days I would be ok, get the bus to work, and make it to the toilet as soon as I got there. Other days I would walk across town, and jump in a taxi, knowing I wasn’t going to last the bus journey.

Being the receptionist I was supposed to be “the face of the company” whenever they had visitors. Sometimes, they were greeted by me opening the door to let them in, and then me running out to the ladies. I’m sure they thought I was mad.

Each morning though, I was aware that the time between my “pitt stops” as I grew to call them, was growing shorter. Often I would walk down the stairs and open the back door to leave, only to have to bolt back up them and lock the toilet door.

I knew where every toilet was on the bus route to work, in town, and in the building at work. I counted every mile, I counted every bus stop, every passenger getting on the bus. I counted every step as I got off the bus. I timed the opening and closing of the lift doors at work. I daredn’t count the steps as I knew I wouldn’t get to the top.

From the reception to the rest room at work there was a long corridor, and then the sales office. I knew that the carpet tiles on that corridor were a pace each, and that there were thirty tiles. That meant thirty steps plus the fifteen across the sales office floor to the rest room and the coffee machine. Sit down. Sip coffee. Those fourty five steps seemed endless on the return journey. Would I make it to reception and then on through the doors and into the toilet.

Thankfully I always did. But the cold sweats thinking I wouldn’t remain in my memory even now.

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Through all of this my soon to be hubby was as supportive as he could be. Neither of us really knew what we were letting ourselves in for. But he was always there for me. I can still remember the year he made me a Christmas card. He had found the biggest cardboard box he could find, had covered it in red crepe paper, and had written I Love You in curly wurly chocolate bars. Every girls dream!

He also had a mischievous streak in him. Once Christmas I made the mistake of saying I was jealous that he had helped my Mum to put Christmas decorations up in the pub, but that my bedroom had none. A couple of days later I walked in to my bedroom only to find that “someone” had blue tacked every pair of knickers I had to the ceiling of my bedroom. It was an old building, the ceilings were high, and I was so embarrassed when every morning I had to point out to my Dad which pair of knickers I wanted that day. He would pull them down one by one until they were all gone. I never complained about Christmas decorations, or the lack of them again!

Hubby to be did all he could to help with my food fads as well. One time we trawled around country pubs for hours on end. Looking at menu’s or driving away if they were too full. I was so fussy about what I could eat that we ended up driving home. He went hungry, and I munched on yet another tomato and slice of bread.

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I have to mention as well, that during this time I was working full time, still as a receptionist, and singing with a band on the weekend evenings. I was lead vocalist to a five piece band called Outer Limits, and we had a whale of a time. We did songs ranging from Crystal Gayle to Europe, had a brilliant two hour set, and we got along like a house on fire!

We played to varied audiences throughout the west midlands. I had two favourite places. One of which always got us to sing the queens anthem at the end of the evening, and no I didn’t know the words! The other, had what we called in “the business” as traffic lights in the room. As the venue was a small club in a small village, the sound had to be below a certain level. At the back of the room there were three lights. Green, Yellow and Red. At our lowest volumes we hit green which was fine, during the last set we went to yellow which was a bit dodgy. But if the drummer got carried away on the last two songs we would hit red. And guess what…….it turned the power off!! You then had to wait two minutes for the power to return so we could continue. It was fun seing how far we could push the volume.

After a year or so we had a slight fall out with the drummer. I can’t remember what it was a bout now, but we (the rest of the band and our “manager”) took it upon ourselves to advertise for a new drummer. Of course our current drummer and his father saw the ad and it happened to be one of the nights we were performing at the “traffic light” club.

He had threatened to ruin the whole night by blasting away on the drums and therefore ruining the sets as we would have no power. I took him to one side. I politely advised him that I was the one who was going to be stood at the front of a very small stage. I was the one who was going to be stood at the front of a very small stage, in front of his precious drum kit wearing four inch high stiletto’s. I couldn’t be held responsible if say I got carried away whilst dancing to Simply The Best and my four inch high heel got caught in his bass drum. Not only would it rip it to shreds it would also bring the rest of his precious drum kit rattling around his ears as he grovelled on the floor.

Needless to say, he behaved himself, we completed the set, and got a new drummer a week later.

We did well. We were popular, we got repeat bookings, and new bookings, and were even offered to do a tour of some German air force bases. It would be just the six of us. The five piece band and our manager. Hubby was all for it! He was our roady. Every show we did he was there, helping to carry stuff in and out, helping to set things up, set sound levels, get us drinks, and give us the thumbs up or down relating to our performances. One night I forgot my favourite shoes. The four inch heels, and because I was so unused to any other shoes whilst singing I kicked off my replacement pair and sang barefoot. Hubby disappeared for a while, and then returned halfway through a song and placed my beloved shoes in front of me on the stage. He had driven all the way across town, collected my shoes and driven back with them………..My Angel.

Anyway, we couldn’t do the German tour as the bass player’s girlfriend wouldn’t allow him to leave the country, bummer!

Slowly, we disbanded. The timing was right. I could no longer complete a complete set without needing the toilet, and I decided that my health, soon to be hubby and career needed to come first.

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My wedding day was fun to say the least. I can remember being woken up by my Mum at about 9am. The sun was shining, and considering all the Saturdays so far in that month it had rained heavily I was relieved it was dry.

We had breakfast, when I say we, there was my Mum and Dad, my sister, her hubby and my nephew and neice. Soon the two other bridesmaids arrived, and my hairdresser and long term friend came to make me look beautiful.

My sister at one point came running up to me with an envelope, It was addressed to me and was a beautiful card from hubby to be. I still have it somewhere, I must dig it out and re read it.

My make up looked lovely, I did it myself, my hair looked amazing, and the headress fitted a treat. I was sat in my dressing gown, shaking. Would I make it through the day without needing “to go”. Remember, by now I was going up to fifteen times a day, spending up to half an hour a time on the loo. Let’s just say it wasn’t a normaly colour anymore….I was losing blood too. Worse case scenario….how the hell would I fit in a toilet cubicle in my amazing dress and manage on my own!!

Mum, Sis and Hair friend put me at my ease, and soon it was time…..the dress was held in position ready for me to drop my dressing gown and step into it. Dad was hiding in the living room, having not seen me in my full glory yet.

I stepped into it, I was zipped and buttoned in and …………….panic!!

I had lost so much weight, my boobs were non existant and my dress hung and gaped in a really awkward place.

Mum and Dad to the rescue. Dad was given instructions on where to go and what to buy. He was back within half an hour and my rescue kit was in place. He had driven into town, gone to a haberdashery store, and bought the biggest pair of foam shoulder pads he could find. Mum shoved them in the right place, reshipped me…..and it was perfect!

With lots of help I made it downstairs, we were leaving from the pub so all of my friends and pub regulars could see me. Most of the men were looking at the car, which was amazing too. Then the nerves really hit me, I was hungry and scared.
I resorted to my favourite emergency snack in times of need. A slice of white bread plain, and Dad and me had a brandy to calm our nerves.

That was it…we were off, waving all the way down the road.

The funny thing was, that’s when the nerves disappeared as well. I was still a little worried about being caught short for a toilet, but marrying hubby….not a worry at all.

We pulled up at the church and yet another panic. We weren’t early….but the photographer had been late and hubby to be and his brothers and Dad were still posing for photo’s. Hubby to be saw me in the car, and turned around really quickly so he didn’t see me. The driver had things under control, we took a short detour and parked up for about fifteen minutes a few streets away.

I will always remember we were parked outside some houses. One woman looked out and gave me the biggest smile ever. She waved me off as we started on our journey for the second time….and I felt so proud.

Eventually I made it down the aisle. I started crying as my Sister pulled down my veil, and I carried on all the way down it. Linked arms with my Dad, looking at hubby to be grinning at me, I couldn’t stop snivelling!

We were married. Man and wife in sickness and in health. Oh boy was that going to be so true.

The reception was beautiful. A small reception meal first. Roast beef and Yorkshire puddings. Speeches, including Mr Bleach saying he was glad his brother was marrying me and that I was marrying him. We still tease him about it now. But it helped make the day special.

We took a detour on the way to the nightime reception and hotel. Hubby’s nan was poorly and hadn’t been able to come to the wedding, so we went to see her at her house. We stood at the side of her bed, and she looked so proud of her grandson, and said I looked like an angel. Another moment I will never forget.

Finally at the hotel we had a few minutes to ourself in our bedroom. Hubby gave me a big hug, pulled back and said whats going on…..I’d forgotten the shoulder pads, my boobs were rock hard!! I said hang on a minute, and pulled them out one by one. He was gob smacked and had a laugh. Soon it was back to the reception. We greeted, chatted, danced, drank, hardly saw each other all night, didn’t get any of our own wedding cake, and fell into bed exhausted.

The most wonderful day of my life was over in a flash…..but I had my memories, and no accidents!!

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We were lucky, and spent our honeymoon in Portugal. A family friend was babysitting a villa over there, so all we had to do was pay for our flights. It was one of our best holidays ever. Uncle Jim and Shirley treated us like royalty. They took us from place to place, fed us, looked after us, and Uncle Jim taught me the true way to drink gin :)

My tablets kept me going while we were away, but there was a shock in store for me a week after we got home.

Remember, we had never lived together, the only mans shirt I had ironed was my Dad’s, and living in the pub I was used to cooking for eighteen rather than two. But everything that happened over the next few years has done nothing but bring us closer.

I had been back at work a week, suntanned, and still in honeymoon mode, I was called in to the Managers office. I was made redundant. Married three weeks and not having a mortgage, I was shocked.

Luckily hubby put out his feelers and I had a new job within about a week. I had gone from receptionist at a car hire company, to admin clerk at a car dealership. Best of all, I could spend my lunch breaks right next to the toilet in the drive through petrol station.

Some days I was lucky and managed to make it to the chip shop for lunch. I think this was about the time I was diagnosed with having Crohn’s. I remember having a colonoscopy. I did insist that they sedated me, the first one remember I was wide awake for…..and there was no way I was going to go through that pain again.

I can vividly remember hearing Dr L say he had found something and was taking a sample of it for biopsy, I felt a small tug inside, and was in panic mode for two weeks.

We had settled into our little house, and hubby was in the process of decorating our bedroom so we were sleeping in the front bedroom. I can still remember this dream to this day. I dreamt the biopsy results came back. I heard them tell me it was Cancer, and that I needed to say my goodbyes. In my dream I was looking at hubby, I told him I couldn’t say goodbye, not to him, not to my soul mate. The tears started rolling down my face in my dream. I woke up. The tears were streaming down my face awake as well.

I mentioned it to hubby a few years later, and he was awake. He knew what I was dreaming about, and he knew I was crying. He though it best to let me drift off to sleep rather than make me more upset by cuddling me. He was right.

The day of the diagnoses came. I knew it was one of the three C’s. Cancer, Collitis, or Crohn’s. I asked Dr L to tell me three times I think. Are you sure, are you certain. Thank God…..it was Crohn’s.

I was put on steroids, and various other tablets to help with the dioareahh, and for a while it worked.

By now I had moved jobs again, and was working for a glazing company. I spent nearly three years there, and it was the longest walk to the toilets ever. I moved on again, having found new freedom after passing my driving test. I worked for a contract car hire company in the contracts office, and absolutely loved it.

I went for a regular check up with the gastro one day, and was shocked when he told me I needed a fortnights hospital stay on strict bedrest. Work was fine, my boss knew someone with Crohn’s and although I hadn’t told her, she had worked it out. And boy, when they said bed rest, did they mean it. I was even told off for going to the toilet. Was I going to use a bed pan. NO WAY.

If only I had known what was just around the corner.

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After a few tears, a few sleepless nights and a lot of time to think I finally left the hospital and returned to work. I felt refreshed, and healthy for a change.

Soon after I was made redundant, but managed to get an internal transfer within the company, but based about thirty miles away from home. It was fine, luckily the direct route involved using the quietest motorway there is in the UK.

I settled in well and loved the job. New people who soon became friends, and more responsibility. I can’t go into too much detail, but there was one person there who I disliked. In fact I would go as far as to say to this day I still hate him. If ever I saw him walking down the street I would not like to be held responsible for my actions……anyway I digress.

Ma In Law took me to the ballet one night, and it was the start of what has so far been a twelve year journey. I had been uncomfortable in an awkward place for a few weeks. There was a small lump right at the base of my back, and an internal pain in my bum cheek that wouldn’t go away.

I got on the coach at the start of the journey, and suddenly felt a release of pressure, and a wet sensation. Whatever it was had burst! I kept quiet until we got to the theatre, I ran into the toilets, and padded myself up with wads of toilet roll, managed to sit through the ballet, although I can’t remember to this day what it was about, and got myself home.

I remember waking hubby up, and asking him to help me put some sort of a dressing on it. That went on for a few weeks.

The doctor said it was my Crohn’s and gave me some steroid foam to be inserted (this is where it may get gruesome) up my back passage. I soon noticed that whenever I did this, the discharge from the small hole on my lower back increased. I had worked out for myself now that the lump in my bum cheek and the small hole were connected.

The lump in my bum cheek had gone from feeling like a bruise, to the size of a grape, then the size of a plum, and finally the size of a grapefruit! When I lay in bed it throbbed, then there would be a sudden sense of relief and one of the most weirdest feelings I have ever had. It’s almost as if there is something alive inside you. A worm slowly crawling from one place to another. I know now it was the main abscess, which was the lump in my bum cheek, tracking, creating a fistula and linking itself with the smaller hole on my back.

I was soon to learn that the abscess in my bum cheek was being fed from my back passage, and trying to find a way out of my body. It grew, tracked some more, refilled, tracked again. My body was like an underground world. From one lump to another. Of course every time I went to the toilet, which by now was ten to fifteen times a day, it was agonising. Whatever I was passing was feeding into the main abscess and into each track, and fistula it had created. This in turn created an infection.

I was in pain, I couldn’t sit, I didn’t want to eat as it meant I would have to go to the toilet. I was continually having to have hot baths and change the dressings on my back. Then a small, tiny, almost invisible hole appeared on my bum cheek. Again pressure release. I dressed it, the doctor checked it and said everything was ok, and said I was ok to go on my holiday. A week on a canal boat with hubby would be just what I needed. Time out to relax, and heal.

It turned into a living nightmare.

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I can’t really remember much about this holiday. You’ll understand why later. I have vague images of feeding ducks from the window inside the boat, of setting up the bed in the living room every night so I didn’t disturb hubby. Of covering it in towels in case of leakages from the darned holes.


I can remember hubby checking the wounds one night after I had had a shower, and saying it was bigger. It’s gone from the size of a five pence piece to the size of a fifty pence Piece. That was scary. But not as scary as what was about to happen.

Poor hubby, he was driving the boat, mooring the boat up, feeding me, filling us up with fuel and water. He hardly got a break. One night we moored up by a pub and he decided to pop off for a pint or two. I can remember lying on the sofa and feeling really really strange.


Thinking a dressing change was needed I stood up. Bad idea. The next thing I knew, there was an immense feeling of release of pressure from my bumps and lumps, and some sort of liquid running down my legs.

Sorry guys…..I did say it could get gruesome, this is the really bad bit.
I was scared, I was alone. I didn’t know what to do. My dressings, and clothes were soaked through. I managed to get into the tiny bathroom and sort of hovver over the toilet. Then I started to feel sick, so I headed into the bedroom and grabbed the small plastic waste paper basket from in there. Then another almighty release of pressure and this time the poison was gushing…..and I mean gushing from my wounds.

I stood there with the bin positioned under my butt and could do nothing but cry, shake, and watch it slowly fill up.

Hubby got back about then……and it was panic stations.

We decided to sleep as best we could that night, and hubby would drive the boat back to where we had hired it from, then drive us home and call out the doctor.
It took most of the next day, I can’t remember the journey on the boat, but I can remember lying in the back of the car, feeling sick, having to change the dressings every hour or so.

We got home. I lay on the sofa wrapped in two duvets and till shivering, I can remember Sis In Law coming round and making me eat some toast. The doctor came, I was to be admitted straight away. I can’t even remember how I got to the hospital. I can’t remember the next five days.

I didn’t know what had happened until I regained consciousness.