Welcome to November my lovely monsters and thank you so much to everyone who has sent super sweet messages of late - I really really appreciate every single one and they make each day so much brighter!
So, what's been happening? Well, not a great deal let me tell you. Half term was a bit of a wash out due to generally feeling crappy and the such like and the bad news is that my boyfriend and I have split up due to reasons I'm not going to go on about on here but it ended on good terms I'm happy to say.
I finally got my admission date which is Monday 8th November which is in 4 days time; trying not to get worked up about it and look at the positives - finally being able to get on with my life, gaining weight, health and energy. Perhaps a little ahead of myself I packed up all my teeny kiddy size clothes and my size 4 jeans yesterday in the positive hope that I won't be wearing them for much longer. I also chucked out all my depressing food journals in the hope that I'll no longer have to worry about getting enough calories and nutrition in each day to keep ticking over. I consequently have plenty of space in my closet for new clothes which, fingers crossed, I'll be buying plenty of, in adult sizes, soon enough. Out with the old and in with the new!
Missed a couple of days of college this week due to total fatigue and weakness (lost another couple of lbs, taking my BMI down to 15.2kg/m so I think this is the reason) but am hoping I'll make it in tomorrow and can collect enough homework to keep me busy and out of mischief in hospital next week.
The plan for the weekend is just to have as much fun as possible to keep me going throughout the following week. I'm taking my laptop with me so all being well, I'll keep in touch with you all and respond to emails etc. Nothing I hate more than boredom so please keep me busy!
I also want to give a special mention to my best friend Z who has been bloody fantastic of late and has kept me grinning in the toughest of times, I love you girl!
Take care everyone and see you all soon.
xxxxx
Thursday, 4 November 2010
Saturday, 23 October 2010
Update
Had one of the bestest days yesterday; my first day of half term! I woke up at 5am (body clock just won't adjust to lie in mode) and felt surprisingly good. I spent most of the morning looking into 'closed landscape' photography and then met my Mum for coffee in our local cafe. I managed to eat some biscuits and yoghurt at lunchtime and then met Ned for a quick pint and a catch up. At 3.30pm Z picked me up and we drove into Gloucester to see Monty Robert's Horsemanship show which was absolutely amazing. It made me so sad to see some of the fears horses have developed due to mishandling my humans but incrediable to see how Monty relieved them of their fears using gentle and trustworthy methods. It was truly elating to see how the world and people are changing, to become more compassionate and understanding to our equals. Truly amazing. We got home just after midnight which is probably the latest I have stayed up intentionally for months!
Still heard nothing from the hospital so the waiting continues. I've lost a teeny bit of weight the past few weeks but nothing drastic (well, no moreso than it already is at least) and am just getting in what I can at the moment - good days and bad days.
Thanks to those of you who have offered continual and constant support - you know who you are and when things are better, I'm having a big party - and you're all invited.
Nolite te bastardes carborundorum.
All my love,
Zigz. xxxxx
Still heard nothing from the hospital so the waiting continues. I've lost a teeny bit of weight the past few weeks but nothing drastic (well, no moreso than it already is at least) and am just getting in what I can at the moment - good days and bad days.
Thanks to those of you who have offered continual and constant support - you know who you are and when things are better, I'm having a big party - and you're all invited.
Nolite te bastardes carborundorum.
All my love,
Zigz. xxxxx
TAG: When I'm at my best
TAG: When I'm At My Best
Do this tag as well!
I wear (clothes): Lolita dress (black, red and white) over knee chunky socks and New Rock boots
I wear (perfume): Karma by Lush
I wear (make-up): Black and white eyeshadow, lots of eyeliner, thick mascara, lots of blusher. Dark plum lipstick
I style my hair: in two top bunches with ribbons to match my dress
I listen to: David Bowie - Young Americans
I create: Lots and lots of photographs
I think about: The present, the future and my fantastic friends
I talk to: Mummy, Ned, Z, Les and whoever else will listen
I spend time with: a glass of wine in my hand
I eat: Chocolate
I drink: Carlsberg, white wine or Jack Daniels
I read: any autobiography
I watch: University Challenge
I sleep: 10 hours
I play: My bass guitar- badly
To really treat myself: Spending time with the horses then an evening gossiping and drinking with my best friend followed by a cosy bottle of wine with my boyfriend
Saturday, 16 October 2010
Mid October Update
Hellowa! Just a quick update because I don't really have very much to say (as hard as you may find that to believe!)
I had an appointment with my consultant on Monday and he showed me the letter from Professor Epstein in London and we talked about his recommendations to feed via NJ tube. Apparently I'll be in hospital about a week so that the necessary rate (60-90ml per hour) can be achieved then I'll be sent home with directions on how to feed at home. The aim is to get the rate high enough so that I only need to feed over a 12 hour period which shouldn't disrupt my life too much. I'm currently waiting for a bed in Gloucester Royal and the necessary tubing to be ordered so it could be anyday.
College this week has been pretty manic in order to reach the assignment deadline (which was yesterday) fortunately managed to get all my work in on time but as usual (being a work perfectionist) I still felt I could have done more but have learnt to know when to stop. I also had a tutorial yesterday with my personal tutor who said I should be aiming for a distinction in this subject - it makes me feel good to aim high. In the afternoon I presented my work to the tutors and class which was pretty nerve wracking - I always get anxious when speaking in class but managed to hide it pretty well. My tutors said that the images are rather 'flat' and I'm let down by my technical ability - I'm the first to hold my hands up and say "I don't know what the 'eck I'm doing" so this was a totally fair point and something I REALLY need to work on. I've been focusing greatly on the creative element rather than the technical so I need to shift focus a little. So, plan for this weekend - learn some technical blip blop and put it into practice!! I've got 3 days off now so need to use them productively!
My stomach is really not behaving itself at the moment - it really seems to hate me. I've absolutely HAD IT with liquid supplements so am surviving soley on biscuits and crisps which, if I only eat a little at a time, seems to go ok. The key seems to be to not allow myself to get too hungry so I eat more than a couple of bites because I know if I do, I'm in the danger zone and may as well wipe out the day.
Plenty of things to look forward to at the moment, going to see Dream tomorrow,Z is taking me to see Monty Roberts next Friday (coincides nicely with a day off college) and the following week is half term - highly likely I'll be spending it in hospital but I'd rather than than miss college (yes, really!) Feeling far more positive about the tube now and can't wait for my energy levels to improve - I tried to run yesterday as I was late for college and almost collapsed into the road. Safe to say I won't be trying that again! I'll leave you with the amusing image of little me, with an enormous bag of books trying to run - I wish I could have seen it myself!
Until next time, take care of yourselves my lovelies and feel free to message me anytime!
xxxxxxxxx
I had an appointment with my consultant on Monday and he showed me the letter from Professor Epstein in London and we talked about his recommendations to feed via NJ tube. Apparently I'll be in hospital about a week so that the necessary rate (60-90ml per hour) can be achieved then I'll be sent home with directions on how to feed at home. The aim is to get the rate high enough so that I only need to feed over a 12 hour period which shouldn't disrupt my life too much. I'm currently waiting for a bed in Gloucester Royal and the necessary tubing to be ordered so it could be anyday.
College this week has been pretty manic in order to reach the assignment deadline (which was yesterday) fortunately managed to get all my work in on time but as usual (being a work perfectionist) I still felt I could have done more but have learnt to know when to stop. I also had a tutorial yesterday with my personal tutor who said I should be aiming for a distinction in this subject - it makes me feel good to aim high. In the afternoon I presented my work to the tutors and class which was pretty nerve wracking - I always get anxious when speaking in class but managed to hide it pretty well. My tutors said that the images are rather 'flat' and I'm let down by my technical ability - I'm the first to hold my hands up and say "I don't know what the 'eck I'm doing" so this was a totally fair point and something I REALLY need to work on. I've been focusing greatly on the creative element rather than the technical so I need to shift focus a little. So, plan for this weekend - learn some technical blip blop and put it into practice!! I've got 3 days off now so need to use them productively!
My stomach is really not behaving itself at the moment - it really seems to hate me. I've absolutely HAD IT with liquid supplements so am surviving soley on biscuits and crisps which, if I only eat a little at a time, seems to go ok. The key seems to be to not allow myself to get too hungry so I eat more than a couple of bites because I know if I do, I'm in the danger zone and may as well wipe out the day.
Plenty of things to look forward to at the moment, going to see Dream tomorrow,Z is taking me to see Monty Roberts next Friday (coincides nicely with a day off college) and the following week is half term - highly likely I'll be spending it in hospital but I'd rather than than miss college (yes, really!) Feeling far more positive about the tube now and can't wait for my energy levels to improve - I tried to run yesterday as I was late for college and almost collapsed into the road. Safe to say I won't be trying that again! I'll leave you with the amusing image of little me, with an enormous bag of books trying to run - I wish I could have seen it myself!
Until next time, take care of yourselves my lovelies and feel free to message me anytime!
xxxxxxxxx
Saturday, 2 October 2010
October already!
Hellowa and Happy October!
Just a quick update since I'm really tired today and trying very hard to get on with some work though not feeling particularly motivated today despite deadlines looming.
Unfortunately I missed some college this week due to poorliness which made me feel really rather miserable; I love being at college since it makes me forget about all the evil health issues which are going on right now and even seems to improve my appetite a little, so taking a few days off was pretty crap. Felt ok enough to go in yesterday and found I had an enormous amount to catch up on so that's how I plan to spend the weekend - pretty much chained to my desk!
I have a gastroenterology appointment a week Monday when we are going to discuss the options of NJ tube feeding; I have to admit, the closer it comes, the more nervous I feel. I know it's something that needs to happen but I'm scared- more about the insertion itself than anything else. Because last time it didn't work in endoscopy and I was barely sedated they are going to try again with 'different equipment' - I'm obviously unsure what this entails but I'll have the opportunity to ask at my appointment I guess. All the same, I'm trying not to think about it too much or I'll drive myself mad.
I've also been thinking recently about how this illness has affected everybody around me; my family, my boyfriend and friends. I think I've allowed myself to become so consumed by my own stomach (now there's a thought) that I haven't really thought about anyone else. Of course I've appreciated their support throughout and expressed it but this is the first time I've thought about how they must feel. It's made me wake up a little I must admit and realised I've probably become a bit of a slave to gastroparesis; I need to take control. It doesn't have to be my main source of conversation and although it's always going to play a part in what I can or can't do it doesn't have to change who I am and make me a weak and boring person. I guess I just need to regroup and take others into consideration a little more when I prattle on about how crap I'm feeling. Gastroparesis is not the centre of the universe. And neither am I.
Just a quick update since I'm really tired today and trying very hard to get on with some work though not feeling particularly motivated today despite deadlines looming.
Unfortunately I missed some college this week due to poorliness which made me feel really rather miserable; I love being at college since it makes me forget about all the evil health issues which are going on right now and even seems to improve my appetite a little, so taking a few days off was pretty crap. Felt ok enough to go in yesterday and found I had an enormous amount to catch up on so that's how I plan to spend the weekend - pretty much chained to my desk!
I have a gastroenterology appointment a week Monday when we are going to discuss the options of NJ tube feeding; I have to admit, the closer it comes, the more nervous I feel. I know it's something that needs to happen but I'm scared- more about the insertion itself than anything else. Because last time it didn't work in endoscopy and I was barely sedated they are going to try again with 'different equipment' - I'm obviously unsure what this entails but I'll have the opportunity to ask at my appointment I guess. All the same, I'm trying not to think about it too much or I'll drive myself mad.
I've also been thinking recently about how this illness has affected everybody around me; my family, my boyfriend and friends. I think I've allowed myself to become so consumed by my own stomach (now there's a thought) that I haven't really thought about anyone else. Of course I've appreciated their support throughout and expressed it but this is the first time I've thought about how they must feel. It's made me wake up a little I must admit and realised I've probably become a bit of a slave to gastroparesis; I need to take control. It doesn't have to be my main source of conversation and although it's always going to play a part in what I can or can't do it doesn't have to change who I am and make me a weak and boring person. I guess I just need to regroup and take others into consideration a little more when I prattle on about how crap I'm feeling. Gastroparesis is not the centre of the universe. And neither am I.
A photograph from this week (a portrait of Ned)
Friday, 24 September 2010
September update
Hello again and sorry for the delay, had a very busy few weeks as just started colllege but I'll try to update weekly after today.
I started college 2 weeks ago and fortunately have been well enough to make it in for all 6 sessions, I'm really hoping this is a continuing trend as things are going really well. There's some amazing people in my group and the lessons have been great; both theoretical and practical. We did a fashion shoot last Friday in The Forest of Dean and had the opportunity to work with the new intake of make up artists - some of which were petty damn good, especially since they're just starting out. I'm posting a pic of my friend Zoe which I took on the day!
I also had some news from my consultant last week who has spoken to Professor Epstein in London regarding my treatment plan. It has been decided that we'll give NJ feeding another go before trying a PEJ. I'm not particularly keen to get an NJ, since it's really obvious and screams "hey look! There's something wrong with me!" but hopefully it won't be for long and will work so I can get a permanent tube in. I'm currently awaiting an appointment to discuss then they'll go ahead and fit the tube. I'm hoping it won't involve long in hospital as I really can't afford to miss any college. In the meantime I'm still ingesting pureed food, chocolate and discovered small amounts of yoghurt and ice cream are staying down pretty well with 60mg domperidone, 40mg Omeprazole and Erythromycin.
I'm also posting a self portrait I took entitled 'Broken Ballerina' - perhaps a little shocking but I hope you like it.
Take care everyone,
Zigz. xxx
Friday, 3 September 2010
Results, holiday and college
Eeeks! I can't believe it's so long since I updated. It's currently 4am and I'm at my Mum's house and can't sleep so thought now would be a good time to note down recent happenings.
I had my gastroenterology appointment a few weeks ago which revealed my liquid emptying is currently T1/2 109 minutes (about half an hour longer than the last one = not great) but even worse, my solid half emptying time is 330 minutes which means it takes 11 hours for my stomach to empty a small bland meal whilst taking all my motility drugs. My consultant told me that The Primary Health Trust now may well fund a speed up in getting to see Professor Epstein/ perhaps getting the gastric pacemaker (personal jury is still out on this one since I've not as yet heard many success stories)but we will have to wait and see. I'm off to the hospital Monday for a barium meal to highlight the possible narrowing in my stomach which I'm REALLY looking forward to (ahem). My biggest worry is that 'm not going to get down/ keep down all the necessary barium and complete the test but I'm trying to stay positive on that one.
On to more cheerful matters, I went on holiday on the 20th to St. Ives with my boyfriend and had the most amazing time. We stayed in a tiny cottage by the sea and spent the week relaxing and drinking (thank GOD I can still do that.) Had a few poorly days/ incidences whilst away and not a great amount of energy but it was so lovely to get away. I timed the week so that I could take my Erythromycin (I tend to take it for 2 weeks - during which time it stops working after around 8 -10 days then stop for a fortnight, by which time it (usually) works again)which helped so I was able to enjoy a few treats whilst away which was great. I kind of had it in my head that I was going to gain weight, especially with all the wine/ beer/ jack daniels consumed, but it wasn't to be BUT I didn't lose any either so am thankful for that.
Not long after I returned I went to college for the introduction to my Photography National Diploma at Gloucester college. We spent the day photographing each other outside with a view to learning about posing and facial expression and I had my first insight to studio lighting techniques - which I loved. I enrol properly on Monday (straight after my Barium meal) which I hope goes smoothly and I can get the necessary funding and financial support. I just know I'm going to LOVE this course and I really can't wait to start. The rest of my group seem fantastic and I really need a focus right now. The day after I was too tired to even get out of bed and had shocking muscle pains in my legs/ back but it was worth it. I'm timetabled to be in Tuesdays, Thursdays and Fridays so hopefully that will give me enough resting time to keep going.
I had my gastroenterology appointment a few weeks ago which revealed my liquid emptying is currently T1/2 109 minutes (about half an hour longer than the last one = not great) but even worse, my solid half emptying time is 330 minutes which means it takes 11 hours for my stomach to empty a small bland meal whilst taking all my motility drugs. My consultant told me that The Primary Health Trust now may well fund a speed up in getting to see Professor Epstein/ perhaps getting the gastric pacemaker (personal jury is still out on this one since I've not as yet heard many success stories)but we will have to wait and see. I'm off to the hospital Monday for a barium meal to highlight the possible narrowing in my stomach which I'm REALLY looking forward to (ahem). My biggest worry is that 'm not going to get down/ keep down all the necessary barium and complete the test but I'm trying to stay positive on that one.
On to more cheerful matters, I went on holiday on the 20th to St. Ives with my boyfriend and had the most amazing time. We stayed in a tiny cottage by the sea and spent the week relaxing and drinking (thank GOD I can still do that.) Had a few poorly days/ incidences whilst away and not a great amount of energy but it was so lovely to get away. I timed the week so that I could take my Erythromycin (I tend to take it for 2 weeks - during which time it stops working after around 8 -10 days then stop for a fortnight, by which time it (usually) works again)which helped so I was able to enjoy a few treats whilst away which was great. I kind of had it in my head that I was going to gain weight, especially with all the wine/ beer/ jack daniels consumed, but it wasn't to be BUT I didn't lose any either so am thankful for that.
Not long after I returned I went to college for the introduction to my Photography National Diploma at Gloucester college. We spent the day photographing each other outside with a view to learning about posing and facial expression and I had my first insight to studio lighting techniques - which I loved. I enrol properly on Monday (straight after my Barium meal) which I hope goes smoothly and I can get the necessary funding and financial support. I just know I'm going to LOVE this course and I really can't wait to start. The rest of my group seem fantastic and I really need a focus right now. The day after I was too tired to even get out of bed and had shocking muscle pains in my legs/ back but it was worth it. I'm timetabled to be in Tuesdays, Thursdays and Fridays so hopefully that will give me enough resting time to keep going.
Tuesday, 3 August 2010
Tofu spaghetti puree
This is a quick yummy recipe which tastes much better than it looks - makes about 4 servings with 12g of protein in each and freezes well. You can either add standard pasta (noodles) and liquidize (or, as I pefer to say liquify - is that even a word?!) Or use baby pasta shapes depending on what kind of tummy day you're having - don't use 'real' pasta even if it's tiny, as baby pasta is specicially formulated for easy digestion)
Exercise caution if you have uncontrolled GERD
Ingredients
* 400g of silken tofu
* 500g jar of pre made pasta sauce - caution with herbs!!!!
* 1 sachet protein supplement/ savoury complan
* 100g spaghetti (Cow and Gate's 'My first spaghetti' recommended)
Method
Mash up the silken tofu with a fork and add to liquidiser with the jar of pasta sauce and sachet of protein powder/ complan. Spin until completely smooth. If the sauce contains herbs, seive it through a fine mesh to remove them.
OVERCOOK the spaghetti until really soft and mix with the tofu mixture. Heat gently - don't boil it. You can either liquidise again or eat as it is if you can tolerate tiny pasta shapes.
Exercise caution if you have uncontrolled GERD
Ingredients
* 400g of silken tofu
* 500g jar of pre made pasta sauce - caution with herbs!!!!
* 1 sachet protein supplement/ savoury complan
* 100g spaghetti (Cow and Gate's 'My first spaghetti' recommended)
Method
Mash up the silken tofu with a fork and add to liquidiser with the jar of pasta sauce and sachet of protein powder/ complan. Spin until completely smooth. If the sauce contains herbs, seive it through a fine mesh to remove them.
OVERCOOK the spaghetti until really soft and mix with the tofu mixture. Heat gently - don't boil it. You can either liquidise again or eat as it is if you can tolerate tiny pasta shapes.
Update
Hello my lovelies!
I meant to update this about 2 weeks ago but kept forgetting and oh, I don't know but here we are.
I decided to change my college options; rather than returning to study Chemistry, Biology and Photography A levels, I made the decision to take an extended diploma in photography instead. My main reason for this is health wise I'm really not sure if I can handle the pressure of Chemistry again (I needed to get an A first sitting) and since there hasn't really been any health improvements since last year I wasn't sure if I'd be able to make every single class 5 days a week. The course is so fast moving that missing just one lesson is a hell of a lot of work missed. Also I've become so sick of hospitals the lure of working in medicine has almost entirely vanished so I decided to focus on my other love, photography which is only 12- 18 hours per week which is going to allow me a lot more rest time and a lot less pressure (I hope.)
I had my interview a couple of weeks ago and the main concern was that I may not get the necessary funding due to having to quit the course last year (due to spending too much time in hospital) but thankfully I received a letter on Friday saying I had been accepted. Hooray! I'm really looking forward to starting in mid September. Woo woo woo!
Health wise, things are still rather crap and over the past few weeks I seem to have completely lost my appetite for anything and as well as the usual stomach ache, throwing up etc. (Which to be fair, I've got more under control over the past 5 months thanks to my dietician) I seem to have developed another 'bathroom' problem which is pointing to a possible malabsorption issue. I went to see a new dietician last Thursday and after the depressing news that I'd lost another kg she suggested that I may do better on a semi elemental diet (pre digested feed) which apparently tastes so foul it's unlikely I'd get it down orally so we may be looking at ng feeding again - just what I need to start college with - a bloody tube taped to my face. There's no guarantee that will work due to emptying issues but I am seeing my consultant on Monday so hopefully he can come up with some sort of plan. To be honest I think I would rather go with the PEJ option and allow my stomach to be bypassed completely and have the added bonus that it will be concealed by my clothing. I guess we'll see what my consultant thinks.
On a more positive note my best friend has just moved into a new flat just down the road from me and we had a 'mini housewarming' party after taking the horses out on Sunday. We indulged in a substantial amount of lager and had a bloody good catch up - been so long since we had a proper get together, it was awesome!!! It's always great to just chill out and talk 'normal stuff'. The pic at the top of the page is me hiding in the airing cupboard! Seeing Iz's new flat has inspired me to sort my own mess pit out so that's what I shall be doing this week and hopefully post the photographic evidence!
I meant to update this about 2 weeks ago but kept forgetting and oh, I don't know but here we are.
I decided to change my college options; rather than returning to study Chemistry, Biology and Photography A levels, I made the decision to take an extended diploma in photography instead. My main reason for this is health wise I'm really not sure if I can handle the pressure of Chemistry again (I needed to get an A first sitting) and since there hasn't really been any health improvements since last year I wasn't sure if I'd be able to make every single class 5 days a week. The course is so fast moving that missing just one lesson is a hell of a lot of work missed. Also I've become so sick of hospitals the lure of working in medicine has almost entirely vanished so I decided to focus on my other love, photography which is only 12- 18 hours per week which is going to allow me a lot more rest time and a lot less pressure (I hope.)
I had my interview a couple of weeks ago and the main concern was that I may not get the necessary funding due to having to quit the course last year (due to spending too much time in hospital) but thankfully I received a letter on Friday saying I had been accepted. Hooray! I'm really looking forward to starting in mid September. Woo woo woo!
Health wise, things are still rather crap and over the past few weeks I seem to have completely lost my appetite for anything and as well as the usual stomach ache, throwing up etc. (Which to be fair, I've got more under control over the past 5 months thanks to my dietician) I seem to have developed another 'bathroom' problem which is pointing to a possible malabsorption issue. I went to see a new dietician last Thursday and after the depressing news that I'd lost another kg she suggested that I may do better on a semi elemental diet (pre digested feed) which apparently tastes so foul it's unlikely I'd get it down orally so we may be looking at ng feeding again - just what I need to start college with - a bloody tube taped to my face. There's no guarantee that will work due to emptying issues but I am seeing my consultant on Monday so hopefully he can come up with some sort of plan. To be honest I think I would rather go with the PEJ option and allow my stomach to be bypassed completely and have the added bonus that it will be concealed by my clothing. I guess we'll see what my consultant thinks.
On a more positive note my best friend has just moved into a new flat just down the road from me and we had a 'mini housewarming' party after taking the horses out on Sunday. We indulged in a substantial amount of lager and had a bloody good catch up - been so long since we had a proper get together, it was awesome!!! It's always great to just chill out and talk 'normal stuff'. The pic at the top of the page is me hiding in the airing cupboard! Seeing Iz's new flat has inspired me to sort my own mess pit out so that's what I shall be doing this week and hopefully post the photographic evidence!
Saturday, 12 June 2010
Bringing you up to June 2010
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
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