I was a full term, IVF baby, born in 1995 and was reluctant to feed from birth. Within 24 hrs of going home, I returned to special care because I was only taking very small amounts of feed before stopping. Blood and urine tests were normal. My parents were told some babies are just ‘slow to feed’ and I was sent home. This was the first of numerous hospital admissions that were to follow. I failed to thrive alternating between chronic diarrhoea and severe constipation as well as frequent rashes and at these times I was not able to feed at all. Obviously I don’t remember anything from this time but my parents describe it as ‘ I was always full up’ and I never craved food or fluids. As I was weaned onto solids, this became more of a problem. Quite often I would regurgitate some undigested food that I had consumed hours earlier.
At ten months old I was admitted to hospital with a high fever and vomiting but investigations failed to find why. During this admission I caught Rotavirus, which made me very ill and at the age of one, I was the weight of a seven month-old baby. At 13-15 months following my MMR vaccination, I developed horrendous diarrhoea, fever and a rash, which was much worse than previous episodes. This continued for weeks and eventually I had a nasal gastric tube for food and fluids and was referred to Great Ormond Street Gastroenterology team. Initially investigations for an eating disorder were carried out including months with a feeding clinic, involving starvation tests. It was established that there was no psychological reason for my problems and I was referred back to GOSH Gastroenterology team. Following biopsies and other tests, I was diagnosed with gut motility problems and Eosinophilic Colitis.
As time went by, I continued to have frequent bouts of ill health, with symptoms including fevers, rashes, vomiting etc. Diarrhoea became less of a problem and was replaced by constipation, which got much worse resulting in me having to have strong laxatives. Following approximately 18 months of nasal gastric feeding, I was given a PEG Gastrostomy, which I still have. I’ve tried all kinds of elimination diets without success as well as many enteral feed formulas, which made me vomit. Eventually I established, that the best feed for me was Elemental 028, which I still have today. I never feel hungry and when I eat, I feel full very quickly. I have tried time after time to reduce or stop my PEG feed, but this has made no difference to my appetite or the amount I can eat or drink. I do however force myself to eat very small quantities throughout the day, even though it gives great discomfort, because I don’t ever want to give up hope that one day I may be able to eat normally.
At approximately 2-3yrs, it was discovered, that I have a duplex right kidney and ureteric reflux, which caused recurrent urinary tract infections, always resulting in a course of intravenous anti-biotics. Also, I sometimes presented with the symptoms of a UTI, but cultures came back negative. The UTI’S however settled a few years later with a prophylaxis dose of Trimethroprin. Furthermore, I experienced aches and pains in my legs and often seemed ‘clumsy’, bruising very easily. All kinds of boots and insteps were suggested and tried, but with no success.
By the age of 9, my fevers/vomiting had become so regular that they were now coming every 2 weeks. I was referred by a local consultant to an Immunologist at Great Ormond Street who quickly diagnosed me with one of the Periodic Fever Syndromes (PFAPA) and I was prescribed Colchicine, which had a dramatic positive effect in that it broke the two-week fever cycle. The other symptoms associated with the fevers remained the same (Chronic fatigue, joint/muscle pains, mouth ulcers and swollen glands). At this time I was also formally diagnosed with hypermobility and this is the reason for my clumsiness and joint problems.
At 10 yrs, I presented with symptoms of feeling very dizzy and unwell with right lower abdominal pain, which resulted in me being transferred to Great Ormond Street (Gastro) on two occasions from my local hospital. I was diagnosed with Visceral Hypergesia on my first transfer and I was told that it would settle down on its own. There was no obvious trigger for this…I was having a lovely day out when I began to feel extremely dizzy and then other symptoms followed. My condition deteriorated and I went through an absolutely horrendous time with pain, vomiting and weight loss (approx 30% of my body weight) and returned for a second time to Great Ormond Street. Following biopsies and a new regime of medication (azathioprine, montelukast and pentasa), I gradually improved prior to starting secondary school.
When I was 11 yrs, my health was knocked back again when I suffered persistent light-headiness, extreme pain and difficulty when voiding my bladder. This was accompanied by burning, stinging and a feeling of obstruction. Once again there did not seem to be a particular trigger for this although I had a peg change and biopsies taken from my bowel approximately 5 weeks earlier. My giddiness was so bad, I was not able to walk unaided and had to use a wheelchair when going out. Investigations at GOSH Urology were unable to find a reason for my bladder dysfunction and I was offered clean intermittent catherisation, which I turned down despite the intense pain as I felt the advantages were out-weighed by the disadvantages. More recently, I understand it has been recognised that there is a link between bladder problems and Eosinophilic bowel disease.
Early in 2009 (aged13 ) I had a routine peg change, colonoscopy, endoscopy and extensive biopsies at Great Ormond Street. I came out of theatre with severe, lower right side abdominal pain, which worsened with time. I was diagnosed with Visceral Hypergesia once again and was cared for at UCHL, as my care had been recently transferred there from Great Ormond Street. The procedure had a devastating impact on my gut function. I could neither eat nor drink orally and even at the rate of 10ml per hr by PEG, I experienced severe pain, nausea and chronic dry retching. My right lower abdominal pain was so intense, my legs would shake uncontrollably and even morphine did very little for my pain. During this time the dry retching was uncontrollable when the pain was unbearable or when any medication/feed/water was put down my PEG. Even though I was physically, mentally and emotionally exhausted, my determination gave me the strength not to give up. Even increasing my rate of feed by just 1ml/hr every day left me feeling nauseous and in pain, but I persevered with this over several months.
Four months later, I still hadn’t regained any of the 7 kilos that I had lost since the procedure. The pain, dry retching and nausea were still the same. Following a recommendation, my Gastro care came under Dr Nigel Meadows at the The Royal London Hospital, assisted by Neuro-Gastroenterologist Professor Quasim Aziz. Nigel Meadows along with his multi disciplinary team helped me and with much patience and understanding and I made some progress. They quickly suspected I had Ehlers-Danlos Syndrome, (the type which effects Gut Motility) and Postural Tachycardia Syndrome (POTS), which was the cause of my dizziness and low blood pressure. Dr Meadows prescribed Sodium Chloride Solution for this and I was soon able to stand and take a few steps, after being bed bound for months. I was later referred to Professor Rodney Grahame (Consultant Rheumatologist UCHL), who confirmed Ehlers-Danlos type 3, POTS and Autonomic Dysfunction. Although the Sodium Chloride has helped, my dizziness remains my most debilitating symptom along with Chronic Fatigue as it means I am unable to walk far without assistance, often requiring the use of a wheelchair.
I am now almost 16 years old and still only able to eat small amounts of food and I am on my feeding pump for 20 hrs per day. Stopping the feed still makes no difference whatsoever. Until 2009, I had always managed without anti-sickness medication but since that point, I have constantly felt nauseous and take Granisetron for this.
Although my life is complex and challenging, I am determined to view my life in a positive way. As I am a happy person and my outward appearance is normal, people often underestimate what I have to deal with or fail to understand the impact my conditions have on my life. Every day is a struggle, coping with nausea, chronic fatigue, light-headiness, pain and additionally coping with regular medications as well as dealing with a feeding pump. In fact, I have struggled to gain understanding throughout my entire life and it appears that to be believed, you have to have a confirmed diagnosis. To suffer with debilitating symptoms/conditions that hugely impacts on your life is heartbreaking but to feel disbelieved is soul-destroying. I feel to overcome this, doctors need to view a patient holistically, always keeping an open mind and never being too proud to involve other specialists who must interact with each other and share their knowledge for the benefit of the patient. Only by doing this, will there be any progress in understanding these types of complex conditions and progressing toward a cure or better treatment.
I do not want to dwell on my problems but just get on with living my life as best I can. Despite loosing vast amounts of time at school, I hope to achieve good results in my forthcoming GCSE’s as I have always had a passion to learn and enjoy school.
As I progress into my adult life, I hope that one day there will be worthwhile, successful research, and that one-day there will be a cure. For today, I am just going to smile and make the best out of every day.
At present, my medications are: Sodium Picasulphate, Sodium Chloride, Azathioprine, Montelukast, Granisetron, Omeprazole, Ibuprofen and Paracetamol.
Amy Butler November 2011
At ten months old I was admitted to hospital with a high fever and vomiting but investigations failed to find why. During this admission I caught Rotavirus, which made me very ill and at the age of one, I was the weight of a seven month-old baby. At 13-15 months following my MMR vaccination, I developed horrendous diarrhoea, fever and a rash, which was much worse than previous episodes. This continued for weeks and eventually I had a nasal gastric tube for food and fluids and was referred to Great Ormond Street Gastroenterology team. Initially investigations for an eating disorder were carried out including months with a feeding clinic, involving starvation tests. It was established that there was no psychological reason for my problems and I was referred back to GOSH Gastroenterology team. Following biopsies and other tests, I was diagnosed with gut motility problems and Eosinophilic Colitis.
As time went by, I continued to have frequent bouts of ill health, with symptoms including fevers, rashes, vomiting etc. Diarrhoea became less of a problem and was replaced by constipation, which got much worse resulting in me having to have strong laxatives. Following approximately 18 months of nasal gastric feeding, I was given a PEG Gastrostomy, which I still have. I’ve tried all kinds of elimination diets without success as well as many enteral feed formulas, which made me vomit. Eventually I established, that the best feed for me was Elemental 028, which I still have today. I never feel hungry and when I eat, I feel full very quickly. I have tried time after time to reduce or stop my PEG feed, but this has made no difference to my appetite or the amount I can eat or drink. I do however force myself to eat very small quantities throughout the day, even though it gives great discomfort, because I don’t ever want to give up hope that one day I may be able to eat normally.
At approximately 2-3yrs, it was discovered, that I have a duplex right kidney and ureteric reflux, which caused recurrent urinary tract infections, always resulting in a course of intravenous anti-biotics. Also, I sometimes presented with the symptoms of a UTI, but cultures came back negative. The UTI’S however settled a few years later with a prophylaxis dose of Trimethroprin. Furthermore, I experienced aches and pains in my legs and often seemed ‘clumsy’, bruising very easily. All kinds of boots and insteps were suggested and tried, but with no success.
By the age of 9, my fevers/vomiting had become so regular that they were now coming every 2 weeks. I was referred by a local consultant to an Immunologist at Great Ormond Street who quickly diagnosed me with one of the Periodic Fever Syndromes (PFAPA) and I was prescribed Colchicine, which had a dramatic positive effect in that it broke the two-week fever cycle. The other symptoms associated with the fevers remained the same (Chronic fatigue, joint/muscle pains, mouth ulcers and swollen glands). At this time I was also formally diagnosed with hypermobility and this is the reason for my clumsiness and joint problems.
At 10 yrs, I presented with symptoms of feeling very dizzy and unwell with right lower abdominal pain, which resulted in me being transferred to Great Ormond Street (Gastro) on two occasions from my local hospital. I was diagnosed with Visceral Hypergesia on my first transfer and I was told that it would settle down on its own. There was no obvious trigger for this…I was having a lovely day out when I began to feel extremely dizzy and then other symptoms followed. My condition deteriorated and I went through an absolutely horrendous time with pain, vomiting and weight loss (approx 30% of my body weight) and returned for a second time to Great Ormond Street. Following biopsies and a new regime of medication (azathioprine, montelukast and pentasa), I gradually improved prior to starting secondary school.
When I was 11 yrs, my health was knocked back again when I suffered persistent light-headiness, extreme pain and difficulty when voiding my bladder. This was accompanied by burning, stinging and a feeling of obstruction. Once again there did not seem to be a particular trigger for this although I had a peg change and biopsies taken from my bowel approximately 5 weeks earlier. My giddiness was so bad, I was not able to walk unaided and had to use a wheelchair when going out. Investigations at GOSH Urology were unable to find a reason for my bladder dysfunction and I was offered clean intermittent catherisation, which I turned down despite the intense pain as I felt the advantages were out-weighed by the disadvantages. More recently, I understand it has been recognised that there is a link between bladder problems and Eosinophilic bowel disease.
Early in 2009 (aged13 ) I had a routine peg change, colonoscopy, endoscopy and extensive biopsies at Great Ormond Street. I came out of theatre with severe, lower right side abdominal pain, which worsened with time. I was diagnosed with Visceral Hypergesia once again and was cared for at UCHL, as my care had been recently transferred there from Great Ormond Street. The procedure had a devastating impact on my gut function. I could neither eat nor drink orally and even at the rate of 10ml per hr by PEG, I experienced severe pain, nausea and chronic dry retching. My right lower abdominal pain was so intense, my legs would shake uncontrollably and even morphine did very little for my pain. During this time the dry retching was uncontrollable when the pain was unbearable or when any medication/feed/water was put down my PEG. Even though I was physically, mentally and emotionally exhausted, my determination gave me the strength not to give up. Even increasing my rate of feed by just 1ml/hr every day left me feeling nauseous and in pain, but I persevered with this over several months.
Four months later, I still hadn’t regained any of the 7 kilos that I had lost since the procedure. The pain, dry retching and nausea were still the same. Following a recommendation, my Gastro care came under Dr Nigel Meadows at the The Royal London Hospital, assisted by Neuro-Gastroenterologist Professor Quasim Aziz. Nigel Meadows along with his multi disciplinary team helped me and with much patience and understanding and I made some progress. They quickly suspected I had Ehlers-Danlos Syndrome, (the type which effects Gut Motility) and Postural Tachycardia Syndrome (POTS), which was the cause of my dizziness and low blood pressure. Dr Meadows prescribed Sodium Chloride Solution for this and I was soon able to stand and take a few steps, after being bed bound for months. I was later referred to Professor Rodney Grahame (Consultant Rheumatologist UCHL), who confirmed Ehlers-Danlos type 3, POTS and Autonomic Dysfunction. Although the Sodium Chloride has helped, my dizziness remains my most debilitating symptom along with Chronic Fatigue as it means I am unable to walk far without assistance, often requiring the use of a wheelchair.
I am now almost 16 years old and still only able to eat small amounts of food and I am on my feeding pump for 20 hrs per day. Stopping the feed still makes no difference whatsoever. Until 2009, I had always managed without anti-sickness medication but since that point, I have constantly felt nauseous and take Granisetron for this.
Although my life is complex and challenging, I am determined to view my life in a positive way. As I am a happy person and my outward appearance is normal, people often underestimate what I have to deal with or fail to understand the impact my conditions have on my life. Every day is a struggle, coping with nausea, chronic fatigue, light-headiness, pain and additionally coping with regular medications as well as dealing with a feeding pump. In fact, I have struggled to gain understanding throughout my entire life and it appears that to be believed, you have to have a confirmed diagnosis. To suffer with debilitating symptoms/conditions that hugely impacts on your life is heartbreaking but to feel disbelieved is soul-destroying. I feel to overcome this, doctors need to view a patient holistically, always keeping an open mind and never being too proud to involve other specialists who must interact with each other and share their knowledge for the benefit of the patient. Only by doing this, will there be any progress in understanding these types of complex conditions and progressing toward a cure or better treatment.
I do not want to dwell on my problems but just get on with living my life as best I can. Despite loosing vast amounts of time at school, I hope to achieve good results in my forthcoming GCSE’s as I have always had a passion to learn and enjoy school.
As I progress into my adult life, I hope that one day there will be worthwhile, successful research, and that one-day there will be a cure. For today, I am just going to smile and make the best out of every day.
At present, my medications are: Sodium Picasulphate, Sodium Chloride, Azathioprine, Montelukast, Granisetron, Omeprazole, Ibuprofen and Paracetamol.
Amy Butler November 2011
Amy's Story