I was 15 when I was diagnosed with Crohn's, I am now 38; I am also transsexual (m to f) which will become of importance later on in my story!
I came down one morning at my parent's second house in Stratford-upon-Avon and my mother asked what I had in my mouth. I was surprised by this and said I had nothing in there. My mum was persistent and told me to go look in the mirror. To my horror, there was a golf-ball sized lump just above the bottom jaw on one side of my face. Inside my mouth was a long flap of skin adjoining the bottom of the gum which had become red and sore. This was causing the swelling. When I got home my mum booked me in at the dentists and a biopsy was taken. A short while later I was told I had Crohn's Disease.
Now I regard myself as fortunate because I was one of the lucky few who had an early diagnosis. My bowel problems started about 6 months after the mouth ulcer problems. I started defecating in my sleep and literally covering the bed in liquid poo. I would wake my mum up and sometimes it would happen 2 or even 3 times in the night. At the same time I started getting tummy pain in the bottom right of my abdomen. A dull achy pain that rarely went away. The diarrhea would remain a constant from then on, the pain would change and come and go.
I did my GCSE's and A-levels and went off to the University of Leeds, I was a bright kid and enjoyed my school work. Unfortunately I was also a hypochondriac and this along with my Crohn's made me a bit of a worried and tormented child. I went to boarding school for my sixth form and got bullied by the kids there. To them I was a loner, I was from the North (most of them were from the Home Counties) and I didn't go down the pub with the rest of them. The truth was that I was getting quite poorly by this stage and frequently messed the bed, although having a special relationship with Matron really helped.
I went off to University in Leeds and this is when things really went downhill. I was getting horrible gripey pains like someone was twisting my bowel in a 'Chinese Burn', the dull achy pain never went away and eating was really traumatic. I remember I used to roll around on the floor in agony after eating anything and started to miss more and more lectures. My life consisted of going to as many lectures as my illness would allow and spending the rest of the time in bed or in pain. Now I have had a vomiting phobia since I was about 11, and I NEVER vomited. I was beginning to feel nauseous and went to the loo several times only to bring up the most horrendous loud uncontrollable gas from deep inside my intestines. I had decided, finally, that enough was enough and I needed to get myself sorted out.
A relative of ours was a Radiographer and I was soon in a hospital clinic in Manchester with that large dreaded jug of pink chalky liquid called a Barium Meal. I managed about half a cup but the Radiographer came out and decided to have a look and see if he could see anything. It soon became apparent why I had managed so little of the drink, I had two narrow strictures in the terminal ileum. Behind each of these narrowings was a large bulge in the bowel where the contents were trying to squeeze through. I was referred to a Dr Crampton a gastroenterologist who in turn referred me to a surgeon, Mr Jones. I was told that surgery was rather urgent and a few weeks later I was in the Alexandra private hospital in Cheadle in Manchester; I was 21 by this point.
I woke up with an ileostomy, which was a shock to me. Apparently on opening me up things were worse than they had anticipated. There were several large abscesses and after removing the narrowed portion of bowel and the appendix it was decided that the bowel needed a rest to give it time to heal, hence the ileostomy. I didn't eat anything for ages, and was given a feed line in my neck to keep me nourished. Despite this I was still losing weight and when I was finally told I could eat something after about 4 weeks I went totally mad. This was when the consultant and myself made a big mistake. When I asked what I could have to eat, the consultant (stupidly in my opinion) replied, "anything on the menu". I ordered a large cooked breakfast and having not eaten for a month threw the lot down my throat without chewing properly. Shortly afterwards I started to get really bloated and as the hours passed I started to feel more bloated and sick. The consultant came and had a poke around in my stoma, pulling out a large piece of mushroom, declaring the mushrooms as causing the problem. Eventually after I relaxed a little I decided that the only solution was to make myself sick which I did by sticking my fingers down my throat. I leant over the loo in my private bathroom with 3 nurses all giving me moral support while I emptied my stomach and upper intestines of the offending mushrooms. To this day, 27 years later I still cannot eat them! After this episode, things gradually improved and I started to put on weight. The ileostomy was soon reversed and a week later I was back at home.
I had to drop a year at University and took nearly a full year to recover. I remember vividly the horrendous, burning diarrhea I had after returning home, I think my record was 28 toilet visits in one day. When I got back to Uni, my health had improved dramatically and I was able to complete my degree, I got a 2:1.
The next 15 or so years were relatively uneventful health-wise. I had left Uni and embarked on a sales career selling advertising, then fishing tackle for two different companies (I was and still am a keen fisher-person). I ended up as a Recruitment Consultant for about 3 years. I then had a bit of a mental breakdown and went into Nightclub Promotions before deciding to move back to Leeds and manage the Hall of Residence bar at the same Hall I had been a student for 2 years. This was a dream job for me but I did have a Crohn's relapse which I thought was a hernia. The pain was around my navel and I ended up in A&E, admitted into Leeds General Infirmary where they did some tests and told me my Crohn's was active again. Fortunately this was quickly calmed down with a course of steroids.
At the age of 30 my life changed dramatically. My relationship with my girlfriend was breaking down, and I was no longer in my 20's! I realised that my deep resentment and anguish about being male which I had had for as long as I can remember just would not go away. I also realised that I was working for an employer who would have to support me in my transition. This isn't a story about being transsexual but the long and the short of it was that I changed gender from male to female at age 30, and decided to start a new life in Somerset.
I had left behind all of my friends and moved in with my best friend in the town of Wincanton. Initially funding myself with ebay, I took on several jobs to help with the bills. About two years ago I registered with some recruitment agencies and told them the ONLY job I wanted was a driving job. I loved driving, having done a lot of it as a sales rep and it gave me the freedom to cope more easily with my illness. The first driving interview I had was with a veterinary supply company and I impressed them enough to be offered a job. I am still with the same company two years later and absolutely love the job and the company.
Last Summer (2011) I started to get different symptoms to the ones I was used to. I was getting really bad urges to go to the loo and then when I went, very little faeces were passed. This got worse and worse but surprisingly there was no pain. Because the symptoms were a bit alien, I thought that maybe I had IBS and that this might be what was causing the problems. Then I was delivering to a vets in Devon and I had some terrible mid stomach pain, so bad that I took up the offer of a lie down upstairs in their own quarters. Twice I got up to be sick, only for that horrendous loud gas to come up from deep down in my intestines. Exactly the same type of gas that I had had all those years ago while at Uni. I left after several hours and at my second last vets, I got the urge to belch again, so I ran into the vets, to the loo and threw up all over the floor!
That seemed to be an isolated incident because it didn't happen again and I though it was just 'one of those things'. Several months later however, my bowels just stopped; suddenly. From going to the loo about 10-12 times a day I couldn't go at all. Along with the not being able to go, came the most awful bloating. The bloating was only rarely eased by the occasional breaking of wind. After a couple of days of this I went to A&E at Yeovil Hospital. Three times I was admitted and three times after stays of between 4 and 7 days I was discharged after my bowels had started working again. I had all manner of tests, X-Rays, CT Scans, MRI scans, blood tests, Flexi-sigs, Colonoscopies etc. None of them seemed to show anything apart from a massive build up of faeces in my colon. One daft junior doctor even told me that I was constipated! (I have never had constipation in my life).
I think it was the third visit that I started throwing up poo. I had become so horrendously bloated that I thought the only way to ease it would be to make myself sick so I started thrusting my fingers right down my throat. It was bloody hard work, and quite often I just couldn't be sick. Sometimes I would get that horrendous deep intestinal gas followed by a bit of vomit at the end. The vomit was always orangey-brown in colour with only tiny food particles. I didn't realise it at the time but this was faecal vomiting. The vomit wasn't coming from my stomach but from my intestines. By the time I had arrived by ambulance the fourth time, my new surgeon had decided that unless he operated immediately my colon could burst and I could die.
I awoke from the operation with a colostomy bag and the surgeon telling me that he was 95% certain I had cancer! This was a massive shock. Apparently when they opened me up they had removed 5 litres of liquid poo from my intestines and on prodding around, the surgeon had found a large hard mass in my abdomen attached to my bladder. He had called another surgeon and between the two of them they had decided to take some biopsies and close me up again with just a colostomy to show for their troubles. I was told that I would have to wait for the biopsy results before they decided what to do next. If it was cancer as they strongly suspected I would have to go to London for a special operation to remove my bladder and the cancer. This would result in having a urostomy as well as my colostomy.
I started to do some research into suitable surgeons for this forthcoming large operation and decided that the surgeon who had done my genital reassignment should be involved. I told my intestinal surgeon Mr A about my plans and eventually he rang up Mr B in London. It turns out that the large hard mass that Mr A had found during my bowel operation was actually the result of my previous genital surgery by Mr B and was in fact quite normal! FFS, I had been terrified over the previous 3 weeks for nothing! Thankfully I didn't have cancer after all.
I recovered from the bowel operation quickly and was soon changing my colostomy bag like an expert. There was however one BIG problem, I was passing WAY too much stool into my bag. I was meant to passing under a litre of poo a day and some days I was passing over 7 litres! There was no way I was going to be let home until my bowel slowed down significantly. This took nearly 4 weeks! Clearly there was active Crohn's that needed to be treated and this was what was causing the large output. I asked for a white diet instead of the usual shite hospital food. I got beautiful steamed salmon or plaice with rice and mash; I ate loads and loads of this twice a day. I also had a TPN line fitted down in the anaesthetic room. I was awake for this procudure, which took about an hour but it needed to be aseptically clean. The line went in through my arm, and into a major artery nearly into my heart. I had this line for nearly two weeks and put on 15kgs! Towards the end of these two weeks I started being let out for about 6 hours at a time to go home and chill. After the line came out i was put on Infliximab infusions to treat the Crohn's and eventually I got out of hospital on 31st October last year.
A follow up MRI scan of my bowel showed what I had suspected all along. There was some narrowing of the small bowel around the terminal ileum which I had known about for a long time. Also right at the very distal part of my colon, just above my rectum was another section of thickened wall which had caused a stricture which I was convinced had caused all of my problems.
The plan was to go back to work on 3rd January after I had fully recovered from my surgery and had gotten used to living with a colostomy. I managed to keep this date and I have to say that my employers have been truly magnificent. My boss came to see me twice while I was in hospital. I thought he had come to see that I was really ill and not on the beach, fishing. In reality he stayed for 2 hours each time. I also received a large hamper from the company while I was convalescing at home. At no time did they try to hurry me back, in fact quite the reverse.
I have to take a large amount of supplies while I am out driving. A change of clothes is essential, as is a bag with my colostomy kit in. I have also discovered that a cleaning kit is necessary. I will sign off by telling you about an amusing accident I had last week. I get quite a lot of gas in my bag and have discovered that while stationery at traffic lights I can quickly release the gas from my bag by opening the velcro tab at the bottom while holding the end of the bag upwards. I have discovered that it is not a good idea, however, to try to release a little bubble of gas when the bag is otherwise filled with liquid poo. When I tried this on friday I immediately realised my mistake. It was by then too late as my hands and then the seat and the floor of the van turned a nasty orangey-brown colour. I have a prolapsing stoma and wear a small tin bowl over the stoma then a hernia belt over the top of that. Only a small part of the bag is visible underneath the belt. The poo was obviously at high pressure and came out like a fountain! It took two hours to clean up and even longer to get rid of the smell!
If you have read all of this thankyou and I hope it was interesting.
Emma xxx
I came down one morning at my parent's second house in Stratford-upon-Avon and my mother asked what I had in my mouth. I was surprised by this and said I had nothing in there. My mum was persistent and told me to go look in the mirror. To my horror, there was a golf-ball sized lump just above the bottom jaw on one side of my face. Inside my mouth was a long flap of skin adjoining the bottom of the gum which had become red and sore. This was causing the swelling. When I got home my mum booked me in at the dentists and a biopsy was taken. A short while later I was told I had Crohn's Disease.
Now I regard myself as fortunate because I was one of the lucky few who had an early diagnosis. My bowel problems started about 6 months after the mouth ulcer problems. I started defecating in my sleep and literally covering the bed in liquid poo. I would wake my mum up and sometimes it would happen 2 or even 3 times in the night. At the same time I started getting tummy pain in the bottom right of my abdomen. A dull achy pain that rarely went away. The diarrhea would remain a constant from then on, the pain would change and come and go.
I did my GCSE's and A-levels and went off to the University of Leeds, I was a bright kid and enjoyed my school work. Unfortunately I was also a hypochondriac and this along with my Crohn's made me a bit of a worried and tormented child. I went to boarding school for my sixth form and got bullied by the kids there. To them I was a loner, I was from the North (most of them were from the Home Counties) and I didn't go down the pub with the rest of them. The truth was that I was getting quite poorly by this stage and frequently messed the bed, although having a special relationship with Matron really helped.
I went off to University in Leeds and this is when things really went downhill. I was getting horrible gripey pains like someone was twisting my bowel in a 'Chinese Burn', the dull achy pain never went away and eating was really traumatic. I remember I used to roll around on the floor in agony after eating anything and started to miss more and more lectures. My life consisted of going to as many lectures as my illness would allow and spending the rest of the time in bed or in pain. Now I have had a vomiting phobia since I was about 11, and I NEVER vomited. I was beginning to feel nauseous and went to the loo several times only to bring up the most horrendous loud uncontrollable gas from deep inside my intestines. I had decided, finally, that enough was enough and I needed to get myself sorted out.
A relative of ours was a Radiographer and I was soon in a hospital clinic in Manchester with that large dreaded jug of pink chalky liquid called a Barium Meal. I managed about half a cup but the Radiographer came out and decided to have a look and see if he could see anything. It soon became apparent why I had managed so little of the drink, I had two narrow strictures in the terminal ileum. Behind each of these narrowings was a large bulge in the bowel where the contents were trying to squeeze through. I was referred to a Dr Crampton a gastroenterologist who in turn referred me to a surgeon, Mr Jones. I was told that surgery was rather urgent and a few weeks later I was in the Alexandra private hospital in Cheadle in Manchester; I was 21 by this point.
I woke up with an ileostomy, which was a shock to me. Apparently on opening me up things were worse than they had anticipated. There were several large abscesses and after removing the narrowed portion of bowel and the appendix it was decided that the bowel needed a rest to give it time to heal, hence the ileostomy. I didn't eat anything for ages, and was given a feed line in my neck to keep me nourished. Despite this I was still losing weight and when I was finally told I could eat something after about 4 weeks I went totally mad. This was when the consultant and myself made a big mistake. When I asked what I could have to eat, the consultant (stupidly in my opinion) replied, "anything on the menu". I ordered a large cooked breakfast and having not eaten for a month threw the lot down my throat without chewing properly. Shortly afterwards I started to get really bloated and as the hours passed I started to feel more bloated and sick. The consultant came and had a poke around in my stoma, pulling out a large piece of mushroom, declaring the mushrooms as causing the problem. Eventually after I relaxed a little I decided that the only solution was to make myself sick which I did by sticking my fingers down my throat. I leant over the loo in my private bathroom with 3 nurses all giving me moral support while I emptied my stomach and upper intestines of the offending mushrooms. To this day, 27 years later I still cannot eat them! After this episode, things gradually improved and I started to put on weight. The ileostomy was soon reversed and a week later I was back at home.
I had to drop a year at University and took nearly a full year to recover. I remember vividly the horrendous, burning diarrhea I had after returning home, I think my record was 28 toilet visits in one day. When I got back to Uni, my health had improved dramatically and I was able to complete my degree, I got a 2:1.
The next 15 or so years were relatively uneventful health-wise. I had left Uni and embarked on a sales career selling advertising, then fishing tackle for two different companies (I was and still am a keen fisher-person). I ended up as a Recruitment Consultant for about 3 years. I then had a bit of a mental breakdown and went into Nightclub Promotions before deciding to move back to Leeds and manage the Hall of Residence bar at the same Hall I had been a student for 2 years. This was a dream job for me but I did have a Crohn's relapse which I thought was a hernia. The pain was around my navel and I ended up in A&E, admitted into Leeds General Infirmary where they did some tests and told me my Crohn's was active again. Fortunately this was quickly calmed down with a course of steroids.
At the age of 30 my life changed dramatically. My relationship with my girlfriend was breaking down, and I was no longer in my 20's! I realised that my deep resentment and anguish about being male which I had had for as long as I can remember just would not go away. I also realised that I was working for an employer who would have to support me in my transition. This isn't a story about being transsexual but the long and the short of it was that I changed gender from male to female at age 30, and decided to start a new life in Somerset.
I had left behind all of my friends and moved in with my best friend in the town of Wincanton. Initially funding myself with ebay, I took on several jobs to help with the bills. About two years ago I registered with some recruitment agencies and told them the ONLY job I wanted was a driving job. I loved driving, having done a lot of it as a sales rep and it gave me the freedom to cope more easily with my illness. The first driving interview I had was with a veterinary supply company and I impressed them enough to be offered a job. I am still with the same company two years later and absolutely love the job and the company.
Last Summer (2011) I started to get different symptoms to the ones I was used to. I was getting really bad urges to go to the loo and then when I went, very little faeces were passed. This got worse and worse but surprisingly there was no pain. Because the symptoms were a bit alien, I thought that maybe I had IBS and that this might be what was causing the problems. Then I was delivering to a vets in Devon and I had some terrible mid stomach pain, so bad that I took up the offer of a lie down upstairs in their own quarters. Twice I got up to be sick, only for that horrendous loud gas to come up from deep down in my intestines. Exactly the same type of gas that I had had all those years ago while at Uni. I left after several hours and at my second last vets, I got the urge to belch again, so I ran into the vets, to the loo and threw up all over the floor!
That seemed to be an isolated incident because it didn't happen again and I though it was just 'one of those things'. Several months later however, my bowels just stopped; suddenly. From going to the loo about 10-12 times a day I couldn't go at all. Along with the not being able to go, came the most awful bloating. The bloating was only rarely eased by the occasional breaking of wind. After a couple of days of this I went to A&E at Yeovil Hospital. Three times I was admitted and three times after stays of between 4 and 7 days I was discharged after my bowels had started working again. I had all manner of tests, X-Rays, CT Scans, MRI scans, blood tests, Flexi-sigs, Colonoscopies etc. None of them seemed to show anything apart from a massive build up of faeces in my colon. One daft junior doctor even told me that I was constipated! (I have never had constipation in my life).
I think it was the third visit that I started throwing up poo. I had become so horrendously bloated that I thought the only way to ease it would be to make myself sick so I started thrusting my fingers right down my throat. It was bloody hard work, and quite often I just couldn't be sick. Sometimes I would get that horrendous deep intestinal gas followed by a bit of vomit at the end. The vomit was always orangey-brown in colour with only tiny food particles. I didn't realise it at the time but this was faecal vomiting. The vomit wasn't coming from my stomach but from my intestines. By the time I had arrived by ambulance the fourth time, my new surgeon had decided that unless he operated immediately my colon could burst and I could die.
I awoke from the operation with a colostomy bag and the surgeon telling me that he was 95% certain I had cancer! This was a massive shock. Apparently when they opened me up they had removed 5 litres of liquid poo from my intestines and on prodding around, the surgeon had found a large hard mass in my abdomen attached to my bladder. He had called another surgeon and between the two of them they had decided to take some biopsies and close me up again with just a colostomy to show for their troubles. I was told that I would have to wait for the biopsy results before they decided what to do next. If it was cancer as they strongly suspected I would have to go to London for a special operation to remove my bladder and the cancer. This would result in having a urostomy as well as my colostomy.
I started to do some research into suitable surgeons for this forthcoming large operation and decided that the surgeon who had done my genital reassignment should be involved. I told my intestinal surgeon Mr A about my plans and eventually he rang up Mr B in London. It turns out that the large hard mass that Mr A had found during my bowel operation was actually the result of my previous genital surgery by Mr B and was in fact quite normal! FFS, I had been terrified over the previous 3 weeks for nothing! Thankfully I didn't have cancer after all.
I recovered from the bowel operation quickly and was soon changing my colostomy bag like an expert. There was however one BIG problem, I was passing WAY too much stool into my bag. I was meant to passing under a litre of poo a day and some days I was passing over 7 litres! There was no way I was going to be let home until my bowel slowed down significantly. This took nearly 4 weeks! Clearly there was active Crohn's that needed to be treated and this was what was causing the large output. I asked for a white diet instead of the usual shite hospital food. I got beautiful steamed salmon or plaice with rice and mash; I ate loads and loads of this twice a day. I also had a TPN line fitted down in the anaesthetic room. I was awake for this procudure, which took about an hour but it needed to be aseptically clean. The line went in through my arm, and into a major artery nearly into my heart. I had this line for nearly two weeks and put on 15kgs! Towards the end of these two weeks I started being let out for about 6 hours at a time to go home and chill. After the line came out i was put on Infliximab infusions to treat the Crohn's and eventually I got out of hospital on 31st October last year.
A follow up MRI scan of my bowel showed what I had suspected all along. There was some narrowing of the small bowel around the terminal ileum which I had known about for a long time. Also right at the very distal part of my colon, just above my rectum was another section of thickened wall which had caused a stricture which I was convinced had caused all of my problems.
The plan was to go back to work on 3rd January after I had fully recovered from my surgery and had gotten used to living with a colostomy. I managed to keep this date and I have to say that my employers have been truly magnificent. My boss came to see me twice while I was in hospital. I thought he had come to see that I was really ill and not on the beach, fishing. In reality he stayed for 2 hours each time. I also received a large hamper from the company while I was convalescing at home. At no time did they try to hurry me back, in fact quite the reverse.
I have to take a large amount of supplies while I am out driving. A change of clothes is essential, as is a bag with my colostomy kit in. I have also discovered that a cleaning kit is necessary. I will sign off by telling you about an amusing accident I had last week. I get quite a lot of gas in my bag and have discovered that while stationery at traffic lights I can quickly release the gas from my bag by opening the velcro tab at the bottom while holding the end of the bag upwards. I have discovered that it is not a good idea, however, to try to release a little bubble of gas when the bag is otherwise filled with liquid poo. When I tried this on friday I immediately realised my mistake. It was by then too late as my hands and then the seat and the floor of the van turned a nasty orangey-brown colour. I have a prolapsing stoma and wear a small tin bowl over the stoma then a hernia belt over the top of that. Only a small part of the bag is visible underneath the belt. The poo was obviously at high pressure and came out like a fountain! It took two hours to clean up and even longer to get rid of the smell!
If you have read all of this thankyou and I hope it was interesting.
Emma xxx
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