Hello and thanks for reading! This is the first blog I've created with the main intention of perhaps highlighting digestive disorders and the affects they have on everyday life and also, providing any tips or help I can give to anyone with regards to such issues. I am NOT a doctor or expert in this field and can only speak from personal experience. The tips, recipes and ideas I provide work for ME but every person is different so they may not work for you too - if they backfire then...Oh ok you can hate me.
So a little bit about me. I am 29 years old and live in the UK. I love reading, writing, photography, dancing and punk music. I have a dashing boyfriend, Ned, who lives opposite me and we have been together for almost 2 years. I have worked as an embroiderer, a painter, a dancer, an actress, a promoter and a model.
Some background history...
I have always suffered from 'stomach aches' for as long as I can remember, most events as a teenager/ young adult I remember by having a bad stomach ache and I always put this down to stress/ not eating at the right times/ eating something stupid/ drinking too much alcohol and pretty much learned to live with it. I have been vegetraian for 20 years and became Vegan a few years ago for ethical reasons.
Up until June 2008 I was working as a model and undertaking promotional and supporting artist work, mostly in London and spending most evenings drinking with friends, shooting photographs, or involved with Animal Rights demonstrations. One summer's weekend whilst I was dogsitting for my Mother, my best friend 'Z' came over and we indulged in a few cans of Carlsberg (slight understatement there) and a bloody good catch up. We slugged all the beer, reheated some leftover chips from a takeaway the previous day (Yeah, I know.) And went to bed (seperately of course) slightly tipsy. Just as I was drifting off to sleep my chest began to REALLY hurt and I called my boyfriend (being the drama queen that I credit myself for) to tell him I felt like I was having a heart attack. He told me - quite rightly- that I'd probably smoked too many cigarettes and should go to sleep. So I did. For a while. I woke up in the early hours with the most horrendous pains in my left rib and upper stomach and was promptly sick, last nights dinner, totally undigested. Despite having copious amounts of lager the night before, this had not been a usual occurance for me (being sick after drinking) but aware that the previous few days I'd been so busy with modelling work I'd not had much of a chance to eat properly (hence the takeaway chips) so put it down as the 'hangover from hell' and spent the rest of the day pretty much in the bathroom and unable to even keep water down. This continued for the next few days so of course, realised it must have been the reheated chips - I don't make a habit of reheating food so I guessed this was a bit dumb of me. A week on, I was still feeling dreadful and my weight dropped to 6st 10lb (94lbs) so I went to the doctor, he gave me some PPIs (acid 'blockers') and said I'd be fine, it was probably gastritis or perhaps an ulcer so to return if things continued. By the time my Mum returned home, I was feeling a bit better and although only able to eat dry toast and crisps, had a bit more energy. Although I had stopped vomiting, anything other than snacky food (ie. Biscuits and crackers) made my stomach hurt like crazy and I also developed acid reflux. Previously, my diet had been rich in vegetables, soya proteins and wholegrains but my body continued to reject anything of this nature. By November, I had lost more weight and so returned to the doctor who again, prescribed PPIs and I was tested for H. Pylori - which came back negative, thus ruling out an ulcer. From November to April I lived on nothing but chips, crisps, biscuits and cups of tea and began to look dreadful. My skin was grey and pitted, I didn't have any energy and my clothes were hanging off my skeletal frame. People began questioning whether I had an eating disorder or was just stressed, but I knew it was more than that. I again returned to the doctor who took one look at me and referred me to a gastroenterologist who ordered a CT scan, a chest X ray and an endoscopy. The scan and X ray were unremarkable but the endoscopy revealed bile in my stomach and some irritation. Biospies were taken but again, were unremarkable. I was given new meds to speed up my gastric transit, which helped a little but were by no means a miracle cure. No further forward I, like every modern girl does, turned to google. Firstly I ruled out any allergies or intolerances and proceeded to look into gastrointestinal diseases and conditions. One name which continued to come up again and again was gastroparesis. This is a condition where the stomach is either fully or partially paralysed and therefore takes a very long time to empty. Since everytime I vomited the food remained undigested (often consumed 10 hours later) this seemed a possibility so I mentioned it to my gastroenterologist who ordered me a 'Gastric Emptying Study' (GES) which involved eating a meal with radioactive tracer and being scanned over a period of hours to see how long the meal took to exit the stomach into the small intestine. All I needed to do was wait for the results...
Unfortunately this was soon forgotten as I had an accident with a certain pony (my beloved 13hh New Forest, Dream) which resulted in a multiple fractured collar bone - most likely made worse by osteoporosis (I was diagnosed with this in 2003 following a period of anorexia nervosa which I am proud to say I made a full recovery from) I had surgery to pin it back together and, despite everything, began college to study for more A levels. The stomach pain did not go away and I was drinking only energy/ nutrient based drinks and vomiting between 20 and 50 times per day and beginning to feel faint on a regular basis. My weight dropped to 6 stone (84lbs) and my collar bone refused to heal. Finally I got the results from my GES which showed a delay in both solid and liquid emptying (liquids were worse) and was admitted to hospital for ng feeding. This was not a pleasant experience and I was in hospital, pretty much entirely on best rest, for 3 weeks. Because my weight was so low (BMI 15.2) it was feared that my body would not be able to cope with the change in nutrients so I was monitered continously for refeeding syndrome - the consequence of which is sudden death.
It became apparent that ng feeding was not working. Formula was pumped into my stomach 15 hours a day and was simply filling my stomach up until I was sick. A decision was made to bypass my stomach with an nj tube (basically a tube which went up my nose, through my stomach and into the small intestine.) Hooray, I thought, nothing in stomach = no more pain and vomiting. As my luck would have it, after an hour in endoscopy, during which I woke up during the procedure - utter hell, the tube refused to stay in my small intestine and just jumped back into my stomach everytime the endoscope was removed. With not a lot left to do (apparently) I was packed off home accused of having an eating disorder (wtf?) and told I would get a referral to a clinic. As soon as I got home I made a formal complaint to the hospital at which I was treated over the ludicrous assumption that because I was very thin and probably because I worked as a model, I had an eating disorder. This angered me so much because I have HAD an eating disorder in the past and this was NOTHING like one. I wanted to gain weight, I wanted to eat, I did eat, but pretty much everything left me in severe pain or came back up several hours later. A few emails passed between my consultant and I and I was referred to a specialist in London who dealt with stomach motility problems. Having missed so much college I was advised to withdraw and continued the battle of trying to build up my nutrition with the help of a dietician who advised a low fibre, low fat, low residue liquid / pureed diet. I tried numerous supplements - which either refused to stay down or gave me the most horrendous diarrhea and although I somehow managed to stop losing weight, it just wouldn't increase either and my energy levels remained very poor. Without my amazing boyfriend, family and friends I know I would have given up long ago but on good days I'm well enough to go out still and socialise, even though this often sets me back a few days - it's always worth it and reminds me I can still have a great time despite everything going on or to rephrase, not going on, in my stomach!
I had another gastroenterology appointment in May, at which I discovered the waiting list for the specialist in London was full for at least another year so I would have to wait until then and that the only other thing they could do for now was offer me a PEJ tube for nutrition (a tube through my stomach wall into my small intestine so that I could be fed artificially.)- Not the best solution since I intend to return to modelling when my health improves and there's very little work I could undertake with a great tube sticking out of my stomach! I had another GES a few weeks later which showed (to me) that things had got even worse, emptying wise, and there appeared to be a blockage in the antrum of my stomach - almost as if a gastric band had been put there. This was 3 weeks ago and I await the results! If you got this far, thanks so much for reading and I promise that's the longest post of mine you'll ever have to read!
Much love,
Ziggy.xxx
So a little bit about me. I am 29 years old and live in the UK. I love reading, writing, photography, dancing and punk music. I have a dashing boyfriend, Ned, who lives opposite me and we have been together for almost 2 years. I have worked as an embroiderer, a painter, a dancer, an actress, a promoter and a model.
Some background history...
I have always suffered from 'stomach aches' for as long as I can remember, most events as a teenager/ young adult I remember by having a bad stomach ache and I always put this down to stress/ not eating at the right times/ eating something stupid/ drinking too much alcohol and pretty much learned to live with it. I have been vegetraian for 20 years and became Vegan a few years ago for ethical reasons.
Up until June 2008 I was working as a model and undertaking promotional and supporting artist work, mostly in London and spending most evenings drinking with friends, shooting photographs, or involved with Animal Rights demonstrations. One summer's weekend whilst I was dogsitting for my Mother, my best friend 'Z' came over and we indulged in a few cans of Carlsberg (slight understatement there) and a bloody good catch up. We slugged all the beer, reheated some leftover chips from a takeaway the previous day (Yeah, I know.) And went to bed (seperately of course) slightly tipsy. Just as I was drifting off to sleep my chest began to REALLY hurt and I called my boyfriend (being the drama queen that I credit myself for) to tell him I felt like I was having a heart attack. He told me - quite rightly- that I'd probably smoked too many cigarettes and should go to sleep. So I did. For a while. I woke up in the early hours with the most horrendous pains in my left rib and upper stomach and was promptly sick, last nights dinner, totally undigested. Despite having copious amounts of lager the night before, this had not been a usual occurance for me (being sick after drinking) but aware that the previous few days I'd been so busy with modelling work I'd not had much of a chance to eat properly (hence the takeaway chips) so put it down as the 'hangover from hell' and spent the rest of the day pretty much in the bathroom and unable to even keep water down. This continued for the next few days so of course, realised it must have been the reheated chips - I don't make a habit of reheating food so I guessed this was a bit dumb of me. A week on, I was still feeling dreadful and my weight dropped to 6st 10lb (94lbs) so I went to the doctor, he gave me some PPIs (acid 'blockers') and said I'd be fine, it was probably gastritis or perhaps an ulcer so to return if things continued. By the time my Mum returned home, I was feeling a bit better and although only able to eat dry toast and crisps, had a bit more energy. Although I had stopped vomiting, anything other than snacky food (ie. Biscuits and crackers) made my stomach hurt like crazy and I also developed acid reflux. Previously, my diet had been rich in vegetables, soya proteins and wholegrains but my body continued to reject anything of this nature. By November, I had lost more weight and so returned to the doctor who again, prescribed PPIs and I was tested for H. Pylori - which came back negative, thus ruling out an ulcer. From November to April I lived on nothing but chips, crisps, biscuits and cups of tea and began to look dreadful. My skin was grey and pitted, I didn't have any energy and my clothes were hanging off my skeletal frame. People began questioning whether I had an eating disorder or was just stressed, but I knew it was more than that. I again returned to the doctor who took one look at me and referred me to a gastroenterologist who ordered a CT scan, a chest X ray and an endoscopy. The scan and X ray were unremarkable but the endoscopy revealed bile in my stomach and some irritation. Biospies were taken but again, were unremarkable. I was given new meds to speed up my gastric transit, which helped a little but were by no means a miracle cure. No further forward I, like every modern girl does, turned to google. Firstly I ruled out any allergies or intolerances and proceeded to look into gastrointestinal diseases and conditions. One name which continued to come up again and again was gastroparesis. This is a condition where the stomach is either fully or partially paralysed and therefore takes a very long time to empty. Since everytime I vomited the food remained undigested (often consumed 10 hours later) this seemed a possibility so I mentioned it to my gastroenterologist who ordered me a 'Gastric Emptying Study' (GES) which involved eating a meal with radioactive tracer and being scanned over a period of hours to see how long the meal took to exit the stomach into the small intestine. All I needed to do was wait for the results...
Unfortunately this was soon forgotten as I had an accident with a certain pony (my beloved 13hh New Forest, Dream) which resulted in a multiple fractured collar bone - most likely made worse by osteoporosis (I was diagnosed with this in 2003 following a period of anorexia nervosa which I am proud to say I made a full recovery from) I had surgery to pin it back together and, despite everything, began college to study for more A levels. The stomach pain did not go away and I was drinking only energy/ nutrient based drinks and vomiting between 20 and 50 times per day and beginning to feel faint on a regular basis. My weight dropped to 6 stone (84lbs) and my collar bone refused to heal. Finally I got the results from my GES which showed a delay in both solid and liquid emptying (liquids were worse) and was admitted to hospital for ng feeding. This was not a pleasant experience and I was in hospital, pretty much entirely on best rest, for 3 weeks. Because my weight was so low (BMI 15.2) it was feared that my body would not be able to cope with the change in nutrients so I was monitered continously for refeeding syndrome - the consequence of which is sudden death.
It became apparent that ng feeding was not working. Formula was pumped into my stomach 15 hours a day and was simply filling my stomach up until I was sick. A decision was made to bypass my stomach with an nj tube (basically a tube which went up my nose, through my stomach and into the small intestine.) Hooray, I thought, nothing in stomach = no more pain and vomiting. As my luck would have it, after an hour in endoscopy, during which I woke up during the procedure - utter hell, the tube refused to stay in my small intestine and just jumped back into my stomach everytime the endoscope was removed. With not a lot left to do (apparently) I was packed off home accused of having an eating disorder (wtf?) and told I would get a referral to a clinic. As soon as I got home I made a formal complaint to the hospital at which I was treated over the ludicrous assumption that because I was very thin and probably because I worked as a model, I had an eating disorder. This angered me so much because I have HAD an eating disorder in the past and this was NOTHING like one. I wanted to gain weight, I wanted to eat, I did eat, but pretty much everything left me in severe pain or came back up several hours later. A few emails passed between my consultant and I and I was referred to a specialist in London who dealt with stomach motility problems. Having missed so much college I was advised to withdraw and continued the battle of trying to build up my nutrition with the help of a dietician who advised a low fibre, low fat, low residue liquid / pureed diet. I tried numerous supplements - which either refused to stay down or gave me the most horrendous diarrhea and although I somehow managed to stop losing weight, it just wouldn't increase either and my energy levels remained very poor. Without my amazing boyfriend, family and friends I know I would have given up long ago but on good days I'm well enough to go out still and socialise, even though this often sets me back a few days - it's always worth it and reminds me I can still have a great time despite everything going on or to rephrase, not going on, in my stomach!
I had another gastroenterology appointment in May, at which I discovered the waiting list for the specialist in London was full for at least another year so I would have to wait until then and that the only other thing they could do for now was offer me a PEJ tube for nutrition (a tube through my stomach wall into my small intestine so that I could be fed artificially.)- Not the best solution since I intend to return to modelling when my health improves and there's very little work I could undertake with a great tube sticking out of my stomach! I had another GES a few weeks later which showed (to me) that things had got even worse, emptying wise, and there appeared to be a blockage in the antrum of my stomach - almost as if a gastric band had been put there. This was 3 weeks ago and I await the results! If you got this far, thanks so much for reading and I promise that's the longest post of mine you'll ever have to read!
Much love,
Ziggy.xxx
