It's taken me flippin' ages to work out how to sign into my blog so now I've finally cracked it, I will write the update before I'm signed out and completely forget again!
Just over a month ago I was admitted back into hospital to trial NJ feeding rather than using my JEJ. I finally got the tube placed on the third day and for once, it wasn't a traumatic experience! I was given 7g of Midazolam which was, this time, enough to sedate me. A very high dose apparently and weighing only 37kg the nurses and endoscopist were somewhat shocked as to how much was required for me to shut up enough to get the mouthpiece in :-) The placement took less than 2 hours and I began feeding again that night starting at 10ml/hr. I was obviously high risk of refeeding syndrome again due to my BMI of 15 but amzingly (and largely thanks to 3 days of Pabrinex) all was well. My blood pressure did drop to 81/50 a few times during my stay but on the whole things went well and I left boasting a 2kg gain - after only 2 weeks!
I also saw the pain nurse during my admission and discussed my stomach spasms, intestinal pain and dislocations, and was prescribed Oramorph as required and MST twice a day (along with my usual Codeine and Paracetamol - interestingly I'm not allowed a full dose of Paracetamol due to being under 50kg; I've never weighed over 50kg in my life so all this time I'v been 'overdosing' so I now administer them separately, rather than in Solpadol form)
Unfortunately not long after arriving home I had a week long vomiting session whereupon I began vomiting up my feed - which could only mean one thing - tube displacement! I went for an Xray on Tuesday this week, after using my JEJ for very slow rate feeding and medications all weekend) and it was confirmed that the tube was in my stomach. Fortunately they managed to fit me in yesterday as an outpatient and despite a 2 hour wait, the tube was replaced. Not quite such a comfortable experience this time, especially during the re routing through my nose but I was only given 6g Midazolam and I think the extra gram made all the difference.
Fortunately my vomiting has calmed down this week and I've been managing to get on with work as well as nursing a couple of very poorly guinea pigs, both of which are now, thankfully on the mend and I hope this continues.
As for a long term plan (NJ tube not being a long term option) I'm unsure what's going to happen; I still have my JEJ which is constantly infected and reacts to essentially nothing and is highly granulated and painful. It would seem it was the tube causing the problems, rather than my intestines, as I am tolerating 45ml an hour via NJ - which is very good news. I'd happily stick with the NJ since it's a LOT less painful, but I guess I'll have to wait and see. I have expressed to my surgeon the fact that I'm in no hurry for a permanent tube again due to the total disaster of the last, which has now been in situ for 3 years (and incidentally never changed, despite there only being 1cm let inside my body and this particular tube is only recommended for 6 months use before replaced!)
I'm off to see Professor Epstein in 2 weeks so I will be sure to post an update on that. I hope the outcome with be positive.
Friday, 23 May 2014
Saturday, 12 April 2014
Change of plan
Well it looks like everything has changed again and I'm not convinced it's for the better....
I had a phone call from my GP at the end of last week informing me I had another infection in my tube site (since my tube has been infected the entire time I've had it, this was hardly a surprise) and that my blood test had shown hyponatremia (low sodium) I have been feeling very faint and even more unwell than usual of late so this sheds some light on why. Her thinking was that this has been 'simply' caused by malnutrition as a result of not getting enough nutrition in, which again, would make sense,
I went to see my surgeon on Tuesday at my local hospital, with a view to discussing the tube change. I was hoping to have my current freka jejunostomy tube changed to a low profile 'button' style of tube - with a bumper to allow me to bathe and clean the tube without risking it falling out - I currently hold the tube in place with an adhesive dressing, which is less than ideal where water is involved! His immediate concern was the intestinal pain I have been experiencing which has prevented me from raising my rate from 15ml/hr of late, and was quick to point out that simply changing one tube to another is highly unlikely to rectify this - which has been in my thoughts all along. Basically we need to find out if it's the tube site causing the problems - or my intestines (I have been diagnosed with intestinal dysmotility, but the extent of this is unknown.) The least invasive way to discover this is by going back to an NJ tube, thus not relying on the tube site. If NJ feeding proves successful, by which, I can increase the rate back to a more substantial rate then it means the problem is the tube site - not my intestines. In terms of further action, well, an NJ tube is only a temporary solution due to the fact these block easily, need replacing regularly and can create ENT problems of their own. It's possible that a new J tube can be sited somewhere else in my intestine, or a PEG- J tube. (Gastro tube with jejunal extension, I was originally warned against this due to my frequent vomiting which is likely to 'flip' the extension back in to the stomach and render it useless until fixed. My team hardly work at the speed of light so I'd be likely waiting months for anyone to bother even thinking about sorting it out) The worst case scenario is that NJ tube feeding is unsuccessful and I cannot tolerate a higher rate but we'll cross that bridge if we come to it.
My surgeon went off to email my consultant of his plans and I've not heard anything of yet. I'm not too happy about the change of plan but right now I don't really care what happens - well, I do. I just know I can't pick and choose right now as something desperately needs to be done soon - it's not about what I want at the moment, it's a question of essential need. With a BMI of under 16, I'm back in the high risk category of refeeding syndrome which will no doubt mean a hospital impatient stay rather than an outpatient placement. Again, less than ideal but I just need to look to the future and get whatever needs doing over with and hopefully have a more favourable plan once I feel better and am out of the risky underweight range.
Been feeling extremely nauseous and been vomiting a fair bit of late although I have managed to struggle on with work. If I can't work, my mood becomes extremely low and I need to keep my spirits up as much as possible at the moment so despite the fact it may not be the best idea, I'm carrying on regardless!
I had a phone call from my GP at the end of last week informing me I had another infection in my tube site (since my tube has been infected the entire time I've had it, this was hardly a surprise) and that my blood test had shown hyponatremia (low sodium) I have been feeling very faint and even more unwell than usual of late so this sheds some light on why. Her thinking was that this has been 'simply' caused by malnutrition as a result of not getting enough nutrition in, which again, would make sense,
I went to see my surgeon on Tuesday at my local hospital, with a view to discussing the tube change. I was hoping to have my current freka jejunostomy tube changed to a low profile 'button' style of tube - with a bumper to allow me to bathe and clean the tube without risking it falling out - I currently hold the tube in place with an adhesive dressing, which is less than ideal where water is involved! His immediate concern was the intestinal pain I have been experiencing which has prevented me from raising my rate from 15ml/hr of late, and was quick to point out that simply changing one tube to another is highly unlikely to rectify this - which has been in my thoughts all along. Basically we need to find out if it's the tube site causing the problems - or my intestines (I have been diagnosed with intestinal dysmotility, but the extent of this is unknown.) The least invasive way to discover this is by going back to an NJ tube, thus not relying on the tube site. If NJ feeding proves successful, by which, I can increase the rate back to a more substantial rate then it means the problem is the tube site - not my intestines. In terms of further action, well, an NJ tube is only a temporary solution due to the fact these block easily, need replacing regularly and can create ENT problems of their own. It's possible that a new J tube can be sited somewhere else in my intestine, or a PEG- J tube. (Gastro tube with jejunal extension, I was originally warned against this due to my frequent vomiting which is likely to 'flip' the extension back in to the stomach and render it useless until fixed. My team hardly work at the speed of light so I'd be likely waiting months for anyone to bother even thinking about sorting it out) The worst case scenario is that NJ tube feeding is unsuccessful and I cannot tolerate a higher rate but we'll cross that bridge if we come to it.
My surgeon went off to email my consultant of his plans and I've not heard anything of yet. I'm not too happy about the change of plan but right now I don't really care what happens - well, I do. I just know I can't pick and choose right now as something desperately needs to be done soon - it's not about what I want at the moment, it's a question of essential need. With a BMI of under 16, I'm back in the high risk category of refeeding syndrome which will no doubt mean a hospital impatient stay rather than an outpatient placement. Again, less than ideal but I just need to look to the future and get whatever needs doing over with and hopefully have a more favourable plan once I feel better and am out of the risky underweight range.
Been feeling extremely nauseous and been vomiting a fair bit of late although I have managed to struggle on with work. If I can't work, my mood becomes extremely low and I need to keep my spirits up as much as possible at the moment so despite the fact it may not be the best idea, I'm carrying on regardless!
Saturday, 29 March 2014
I hast returned - March 2014
Well hello!
Long time, no blog! I found my blog by accident and decided I would pick up where I left off. The reasons for abandoning it were mainly due to now running a business, which I'll tell you about shortly and the fact things have been so monotonous, I haven't had much to update. However, this post I shall do my utmost to bring you up to date with my current life.
My last post was at the end of 2012 following another hospital admission due to severe jejunostomy pain and dehydration, it was only a week or two after coming home I was straight back in and had the delights of another week on the gastrointestinal ward including my birthday. Lucky lucky me. I got home just in time for Christmas, spent the day in bed - which is pretty much exactly what I did for the next few months. I was totally housebound from December to March and could barely get out of bed or sit up, my muscles became so wasted that everything was a struggle and quite frankly I turned into a despondent misery!
In March 2013, everything changed. I decided to get a pet for company and settled on guinea pigs. I actually went out of the house, the first time in months to collect them (only a couple of miles away by car) and slowly built my strength up enough to sit in the lounge with them. As a result of this, I began sewing tunnels and toys for them which it turned out, I wasn't half bad at. So, just for a bit of pocket money I put a few items I made on Ebay. They all sold in the first day so I began making more and more then 'Ziggy's Piggies' Pet furniture was born. A year on, and many thousands of orders later, I cannot believe the success. I work from home and rest when I can, making it the perfect job for me and best of all, I love it! Plus I'm now financially independant!
It hasn't all been plain sailing however. The ongoing problems with my J tube have continued and it has now been infected for more than 2 years and total agony. i saw my nutritional nurse in January who stated the tube needs replacing ASAP - there's only a few cm left inside me and the granulation tissue is excessive. It's now the end of March and I'm still living with my manky tube (no surprise there) I have an appointment with the surgeon who inserted the tube (and will consequently doing the switch) on the 8th April so I'm hoping not to have to wait too much longer after that, but I'm not holding my breath! I also have a very long awaited appointment with the Pain Clinic at the beginning of May and I'm hoping it can lead to me getting at least some of my intestinal/stomach and joint pain under control. I'm currently relying on Solpadol, Tramadol and Ibuprofen which to be honest, aren't doing a busting lot. The pain continues to be very restrictive and I now use my wheelchair full time when outside, which isn't very often - perhaps once every couple of months or less at the moment.
My weight has dropped again, albeit very slowly, due to feed intolerance, despite switching to elemental feed and my BMI is now 15.4kg/m2 which is less than great and back down to my pre tube weight. I'm not sure if it's down to malnutrition but I've been getting very dizzy due to low blood pressure and on many occasions during the day am feeling my heart flutter and race. Perhaps my latest bloods will throw some light on that and it can be remedied quickly.
The biggest news, keeping with the subject of appointments is that after 6 years, I finally have an appointment with Prof Epstein at The Royal Free in London. I've heard great things about him and his team so keeping my fingers crossed for my meeting with him in June. I'm not entirely sure what suggestions, if any, he will make but am trying to keep as open a mind as possible; although having been fobbed off as many times as I have, that's not the easiest thing to do in such circumstances!
I think, in a nutshell, that's the current lay of the land so from here on, hopefully I can be more extensive in my posts and have good news to share!
All my love and thank you so much for reading xx
Long time, no blog! I found my blog by accident and decided I would pick up where I left off. The reasons for abandoning it were mainly due to now running a business, which I'll tell you about shortly and the fact things have been so monotonous, I haven't had much to update. However, this post I shall do my utmost to bring you up to date with my current life.
My last post was at the end of 2012 following another hospital admission due to severe jejunostomy pain and dehydration, it was only a week or two after coming home I was straight back in and had the delights of another week on the gastrointestinal ward including my birthday. Lucky lucky me. I got home just in time for Christmas, spent the day in bed - which is pretty much exactly what I did for the next few months. I was totally housebound from December to March and could barely get out of bed or sit up, my muscles became so wasted that everything was a struggle and quite frankly I turned into a despondent misery!
In March 2013, everything changed. I decided to get a pet for company and settled on guinea pigs. I actually went out of the house, the first time in months to collect them (only a couple of miles away by car) and slowly built my strength up enough to sit in the lounge with them. As a result of this, I began sewing tunnels and toys for them which it turned out, I wasn't half bad at. So, just for a bit of pocket money I put a few items I made on Ebay. They all sold in the first day so I began making more and more then 'Ziggy's Piggies' Pet furniture was born. A year on, and many thousands of orders later, I cannot believe the success. I work from home and rest when I can, making it the perfect job for me and best of all, I love it! Plus I'm now financially independant!
It hasn't all been plain sailing however. The ongoing problems with my J tube have continued and it has now been infected for more than 2 years and total agony. i saw my nutritional nurse in January who stated the tube needs replacing ASAP - there's only a few cm left inside me and the granulation tissue is excessive. It's now the end of March and I'm still living with my manky tube (no surprise there) I have an appointment with the surgeon who inserted the tube (and will consequently doing the switch) on the 8th April so I'm hoping not to have to wait too much longer after that, but I'm not holding my breath! I also have a very long awaited appointment with the Pain Clinic at the beginning of May and I'm hoping it can lead to me getting at least some of my intestinal/stomach and joint pain under control. I'm currently relying on Solpadol, Tramadol and Ibuprofen which to be honest, aren't doing a busting lot. The pain continues to be very restrictive and I now use my wheelchair full time when outside, which isn't very often - perhaps once every couple of months or less at the moment.
My weight has dropped again, albeit very slowly, due to feed intolerance, despite switching to elemental feed and my BMI is now 15.4kg/m2 which is less than great and back down to my pre tube weight. I'm not sure if it's down to malnutrition but I've been getting very dizzy due to low blood pressure and on many occasions during the day am feeling my heart flutter and race. Perhaps my latest bloods will throw some light on that and it can be remedied quickly.
The biggest news, keeping with the subject of appointments is that after 6 years, I finally have an appointment with Prof Epstein at The Royal Free in London. I've heard great things about him and his team so keeping my fingers crossed for my meeting with him in June. I'm not entirely sure what suggestions, if any, he will make but am trying to keep as open a mind as possible; although having been fobbed off as many times as I have, that's not the easiest thing to do in such circumstances!
I think, in a nutshell, that's the current lay of the land so from here on, hopefully I can be more extensive in my posts and have good news to share!
All my love and thank you so much for reading xx
Tuesday, 13 November 2012
Winter 2012
Hi everyone! This is a very overdue update which is probably going to take me quite a while to write so I've set aside the whole week to write it. As you've probably guessed, my energy levels are so low at the moment, it's a case of writing a couple of lines and then taking a rest before carrying on so that's precisely what I plan to do and hopefully I'll get there in the end.
August saw the event of my Wedding in Crear, Scotland. Despite the not so promising weather forecast, it turned out to be a beautiful day; sunshine, pure blue skies and a sparkly sea! As cliched as it sounds, the day could not have been more perfect. We married on a secluded beach at lunchtime with just the florist and photographer as our witnesses, then spent the rest of the day sat outside our cottage in the sunshine chatting, laughing and indulging in a few cheeky sips of champagne! We spent 4 days up in Arghyll and on our return moved into our marital home, a beautiful 3 bedroom cottage with lovely views, a log fire and almost total seclusion.
It wasn't long however until my luck turned again and I ended up with what was suggested to be an intestinal abcess, following 3 infections in two months. Again, the pain was shocking and my tract was draining far far too much scuzz to I was admitted to hospital in the early hours, only to be discharged when it stopped 'leaking'.
Having had one infection after another, the CFS, the joint pain, and not being able to tolerate my feed at more than 50ml per hour has seen a dramatic decrease in my energy and strength which has deteriorated very rapidly over the past 6 months. Reading last years' blog entries brought home brought home how degenerative this evil illness is, I thought my activities were limited before and now I can only hope to see that level of energy return. It just goes to show that you never do know what you've got 'til it's gone. Every night I hope that the next day will bring just a little more energy with it, to make me able to do a little more but it would seem at the moment, I'm pure out of luck. I remain in hope though and have learnt about 'pacing and switching' which I am determined to focus on in the hope it could offer me a little more of my life back. My main trouble seems to be totally overdoing things, taking an activity too far which can take days or weeks to recover from.
A few weeks ago my feed and water tolerance went down to zero over the course of a few days. In dangerous fear of dehydration I had an emergency appointment with my GP who sent me to hospital for tests. Fortunately Peritonitis was quickly ruled out and x rays showed the tube was still placed correctly. I was placed on complete system rest for 7 days, nil by mouth and tube and iv fluids and meds. It seemed like a very long stay largely brightened by a few visitors which as always, were a total delight! Finally I was allowed to restart my feed and water at 10mls per hour and I managed to increase it enough to convince them to let me come home with the promise that I would rest like crazy, do no exercise and return if things went downhill again. To my horror on getting home I'd hit six and a half stone again and was covered in huge bruises (I went through 6 cannulas as my veins kept collapsing) and could barely stand. I've had to put my wedding ring on a chain around my neck because my fingers are so thin now they won't stay on. At the time of typing this I've been in bed for over a week and still feel no improvement of energy and believe it's largely due to CFS. Now, I KNOW I was overdoing things before my admission, I was spending a couple of hours at the field each day only to come home and get straight into bed for the rest of the day but surely that can't be the only reason? I just don't know. I feel so miserable right now and see no end in sight, there are things I should be doing; working, looking after my pony...But just brushing my hair is wearing me out at the moment. My whole body aches and shakes, I can't control my body temperature for jack, I have a constant headache, limbs made of lead, I've lost my voice, and that's before I even start on my gastroparesis...I know that things won't always be like this but it's very difficult to report to friends that I still feel "the same" when asked, when I wish I could answer "Loads better thanks!"
I suppose the only thing that will get me through this is understanding and support. I'm very lucky on this score and I do have some truly amazing friends both in 'real life' and online who do understand chronic illness. One of the hardest parts of this is dealing with the frustration of not being 'better yet', Yes, it's hard enough for me, it must be exceedingly annoying for an onlooker waiting in the wings with plans that I simply just can't join in with right now.
I guess things will all sort out in the end....Please bear with me, I'm doing all I can. Even though sometimes it seems all I can do is lie in bed. When I feel a little better, you'll be the first to know.
This has taken a little longer than I planned to write and now we're into the second week. I'm sure there's plenty I've missed out but I'd just like to stick this up really rather than spend another week on it, then again, by that time things may have changed completely, I may be dashing about like a loon, partying, and have to scrap the whole damn post....
I remain in hope!
Thanks for stopping by and all the lovely messages and comments I receive from my online friends, via this page, facebook and inspire. They mean everything to me and as always if I can help anyone in a similar situation in any way, I'm only a message away.
Z. xxx
August saw the event of my Wedding in Crear, Scotland. Despite the not so promising weather forecast, it turned out to be a beautiful day; sunshine, pure blue skies and a sparkly sea! As cliched as it sounds, the day could not have been more perfect. We married on a secluded beach at lunchtime with just the florist and photographer as our witnesses, then spent the rest of the day sat outside our cottage in the sunshine chatting, laughing and indulging in a few cheeky sips of champagne! We spent 4 days up in Arghyll and on our return moved into our marital home, a beautiful 3 bedroom cottage with lovely views, a log fire and almost total seclusion.
It wasn't long however until my luck turned again and I ended up with what was suggested to be an intestinal abcess, following 3 infections in two months. Again, the pain was shocking and my tract was draining far far too much scuzz to I was admitted to hospital in the early hours, only to be discharged when it stopped 'leaking'.
Having had one infection after another, the CFS, the joint pain, and not being able to tolerate my feed at more than 50ml per hour has seen a dramatic decrease in my energy and strength which has deteriorated very rapidly over the past 6 months. Reading last years' blog entries brought home brought home how degenerative this evil illness is, I thought my activities were limited before and now I can only hope to see that level of energy return. It just goes to show that you never do know what you've got 'til it's gone. Every night I hope that the next day will bring just a little more energy with it, to make me able to do a little more but it would seem at the moment, I'm pure out of luck. I remain in hope though and have learnt about 'pacing and switching' which I am determined to focus on in the hope it could offer me a little more of my life back. My main trouble seems to be totally overdoing things, taking an activity too far which can take days or weeks to recover from.
A few weeks ago my feed and water tolerance went down to zero over the course of a few days. In dangerous fear of dehydration I had an emergency appointment with my GP who sent me to hospital for tests. Fortunately Peritonitis was quickly ruled out and x rays showed the tube was still placed correctly. I was placed on complete system rest for 7 days, nil by mouth and tube and iv fluids and meds. It seemed like a very long stay largely brightened by a few visitors which as always, were a total delight! Finally I was allowed to restart my feed and water at 10mls per hour and I managed to increase it enough to convince them to let me come home with the promise that I would rest like crazy, do no exercise and return if things went downhill again. To my horror on getting home I'd hit six and a half stone again and was covered in huge bruises (I went through 6 cannulas as my veins kept collapsing) and could barely stand. I've had to put my wedding ring on a chain around my neck because my fingers are so thin now they won't stay on. At the time of typing this I've been in bed for over a week and still feel no improvement of energy and believe it's largely due to CFS. Now, I KNOW I was overdoing things before my admission, I was spending a couple of hours at the field each day only to come home and get straight into bed for the rest of the day but surely that can't be the only reason? I just don't know. I feel so miserable right now and see no end in sight, there are things I should be doing; working, looking after my pony...But just brushing my hair is wearing me out at the moment. My whole body aches and shakes, I can't control my body temperature for jack, I have a constant headache, limbs made of lead, I've lost my voice, and that's before I even start on my gastroparesis...I know that things won't always be like this but it's very difficult to report to friends that I still feel "the same" when asked, when I wish I could answer "Loads better thanks!"
I suppose the only thing that will get me through this is understanding and support. I'm very lucky on this score and I do have some truly amazing friends both in 'real life' and online who do understand chronic illness. One of the hardest parts of this is dealing with the frustration of not being 'better yet', Yes, it's hard enough for me, it must be exceedingly annoying for an onlooker waiting in the wings with plans that I simply just can't join in with right now.
I guess things will all sort out in the end....Please bear with me, I'm doing all I can. Even though sometimes it seems all I can do is lie in bed. When I feel a little better, you'll be the first to know.
This has taken a little longer than I planned to write and now we're into the second week. I'm sure there's plenty I've missed out but I'd just like to stick this up really rather than spend another week on it, then again, by that time things may have changed completely, I may be dashing about like a loon, partying, and have to scrap the whole damn post....
I remain in hope!
Thanks for stopping by and all the lovely messages and comments I receive from my online friends, via this page, facebook and inspire. They mean everything to me and as always if I can help anyone in a similar situation in any way, I'm only a message away.
Z. xxx
Tuesday, 24 April 2012
Latest Update
High time I updated this almost abandoned blog! If I still have any readers left, thank you for returning and I'll try to keep this as concise and as positive as possible.
In January I had an appointment with a geneticist from Cambridge who travelled to my local hospital to meet and discuss the proposed diagnosis of Ehlers Danlos Syndrome. After an hour of assessment he agreed with my GP that I have this disorder, hypermobility type which has been the cause of my painful knee and shoulder joints and formed a link to my Gastroparesis. He recommended I try to strengthen the muscles around my joints in order to prevent future dislocations and pain, easier said than done, but I have been trying my best! His suggestion for the chronic lack of energy which I have been experiencing tenfold since my tube infection in December is most likely due to CFS (Chronic Fatigue Syndrome) but with no current treatment, this is not a particularly helpful diagnosis. Things have been very up and down over the past four months, both physically and mentally. Some days I don't feel too bad and if I 'save' up energy, I am able to do a few 'normal' things even though I feel wiped out for several days afterwards, I am determined to try and live as well as possible. Other days are a terrible struggle, I am sleeping anywhere between 12 and 20 hours a day and much of my awake time feel somewhat shaky, weak and nauseas. I am still working although currently experiencing a gastroparesis flare which has seen me take a couple of weeks of work which has led to my mood deteriorating somewhat, it's very difficult not being able to go to work since it leads to feelings of failure which doesn't sit very well with me. Despite this I am managing to go to the field once a day to look after my pony which is something which brightens my day somewhat!
I had an appointment with my gastroenterologist yesterday. The great news is, I weighed in at 46kg which is a HUGE improvement and now puts my BMI at 18.7 (A healthy weight at long last!!!) as opposed to 15 which it stood at before I got my J tube. He has prescribed some new meds to help with my ongoing nausea and possibly assist with my gastric emptying. He has also made another referral to Professor Epstein in London for the gastric pacemaker, he seems to think I would be a good candidate for it but as I think I've mentioned before, I have heard mixed responses to this ranging from success to no improvement whatsoever. It's quite a big surgery and I am very unsure about it at the moment but knowing what the NHS are like, I don't think I need to rush any sort of decision about it for a fair few months at least! Tube feeding is going well and I am feeding at 70ml/hr during the day and hydrating with sterile water at 50ml/hr overnight.
On to more positive matters, I have finally booked my wedding for mid August which will be an extremely low key affair on a beach in Scotland, just Dave and I and a couple of witnesses which we will meet just before the wedding. Some people have pointed out to me that I don't seem as excited or 'bridezilla' about it as perhaps I should, but although (unsurprisingly!) I am absolutely thrilled to be getting married, anybody who has lived, or currently lives with a chronic illness will know and understand, it is very difficult to make plans and moreover look forward to things, not knowing how one will feel from one day to the next, let alone in a few months time. Being overly excited often, in my experience, leads to disappointment which I could really do without right now so I prefer to be realistic and take things day to day, week to week. I am just hoping that I will feel OK when the time comes, at least enough to enjoy the ceremony and a small celebration afterwards.
I think that just about wraps everything up for now. Oh, not quite! Just wanted to give my friend Nat a quick mention who is currently really struggling with her GP and in hospital, you can check out her amazing blog at http://helpme-minx.blogspot.co.uk/ She has been a massive source of help and inspiration to me and many others so please, drop by and give her some support!
Much love.
Ziggy. xxxxx
Thursday, 8 December 2011
December 2011
Hi everyone, I am so so sorry for the lack of updates lately, I've been meaning to write one but everytime I've started writing a post I've got sidetracked and when I went to continue it, it was already out of date. I'm going to try to make this as brief as possible so this time I may actually finish it!
Tube feeding has been going really well and I'm currently boasting a 4kg weight gain since my tube was inserted in August and although this is fantastic, there have of course, been a few set backs.
I came off my elemental oral diet mid way through September after my GP told me that the nhs would no longer fund my peptamen since I am now tube fed, this wasn't so much of a problem since I am getting all the nutrients I need through my tube but I missed having something to sip on with some 'substance' so began on purees and soft foods with varying success and have been feeling very sick this past week and just sipping clear liquids, better than nothing though!
I have had non stop problems with the stitches which hold my bumper in place constantly tearing out. When I went to the hospital for the seventh time to get them replaced I was unfortunate enough to see a A&E consultant who we will call Dr Shitface for reference. He refused to believe it was difficult to see my surgeon/consultant and also refused to restitch the bumper saying there was no way the tube would come out then reluctantly glued the bumper to my skin - well, surprise surprise, it had come away within hours and I had to use half a roll of tape to hold the tube in. Things became worse as the constant friction of the tube moving in and out constantly produced a great load of granulation tissue. Still no appointment. Finally last week the pain became too much to bear and after taking more than 2 hours to get out of bed, every movement set me screaming as though a serrated knife was being shoved in my stomach, I went to A&E where I was told I had a severe infection and prescribed antibiotics. Two days later the pain was worse and 4 inches of the tube had come out so I stopped feeding and went back to the hospital. By the time I was seen, the infection had got even worse and my stomach was swollen and stretched around the tube site and spewing blood and pus (lush) The doctor was shocked and while he was deciding what to do the rest of the tube popped out. It was all I could do to stop myself from sobbing; I waited so long for the tube to be put in and in a split second it had gone. He called a surgeon who suggested he tried to reinsert it before it closed up but as soon as he tried to push it past the swollen and infected granulation tissue I screamed and flew down the bed. I can honestly say that is the worst pain I have ever experienced, far worse than my shattered clavicle or the following surgery. The only option was to book an emergency surgery which happened in the next hour and when I woke up, to my absolute delight, I had a new tube!! Talk about relieved! I was sent home the next day with antibiotics and fortunately am feeling much better now!
To jump back a few months, I went to see my GP with regards to the pains in my knees and ankles which for the past few years I have put down to malnutrition. I couldn't understand though why they were getting worse the more healthy I became. he looked at my joints and realised they are hypermobile; I have always been very bendy, which had aided my dancing majorly and I always saw it as a positive thing until what he continued to tell me...He looked at my other joints, my skin and discussed my stomach issues and told me it was almost definate that I had Ehlers Danlos Syndrome (hypermobility type) which explained my gastroparesis and pain. I was referred to a rheumatologist who, as I was warned was useless and told me I had flat feet and sent me off to get physiotherapy, another bone density scan and orthotics. Thank goodness for an online friend, Nat, who was more than helpful and told me about a private specialist in London who I intend to save up to go and see, this will take a while and my physio doesn't even start for another two months so in the meantime I'm just going for damage limitation. I can't walk long distances due to pain and fatigue but I do have a micro sports wheelchair which we have taken with us on a couple of day trips, just in case. I've only had to use it once but it did mean we could spent a few more hours out rather than going home early as usual. Sometimes I cannot believe how much my life has changed but fortunately the people around me haven't, my friends are all as brilliant as they ever were and don't treat me any differently to before!
My mind is starting to drift away now so I will finish and post this now before it gets abandoned again. Thank you so much for reading and again, I am so sorry for the silence.
Hope everyone is good and groovy.
Much love,
Me. xxxx
Monday, 29 August 2011
One week from surgery!
Heya! I'm so sorry I've not updated before, I ran out of mobile broadband credit so had to wait until today to get online to update!
My surgery was a week ago today and fortunately I was in theatre within an hour of arriving at the hospital and my fiance was allowed to walk down to theatre with me which settled my nerves a little. The surgery itself took around 2 hours and I was taken to the ward quite swiftly afterwards and unbelievably they let Dave take me outside in a wheelchair less than an hour after I woke up! I was given morphine in recovery which wore off after a few hours wherupon the nurses tried to mamage the pain with a combination of paracetamol, codeine and ibuprofen which were partially successful but still didn't allow me to get a wink of sleep that night. I had my usual post anaesthetic problem of not being able to urinate so needed a catheter fitted but when I finally managed to wee by myself I could go home! I stayed at my Mum's house for a few nights then felt well enough to come home and even invite some friends over on Friday night. I only managed to drink some lemonade and stay up until 9pm but it was a good start! I took my first trip out with my pump in a bag on Saturday for coffee and then managed to go shopping yesterday! I bought a few girly treats (new underwear and pyjamas!) to celebrate being out and about and even stopped for a drink on the way home! High on progress and getting cocky I decided to walk upto the stables to see Dream, which wasn't the greatest idea I've ever come up with; it took me an hour to struggle there and back and when I got home I had to get straight to bed as the pain was eeeeeevil!!!!
I wasn't deterred though as today I went to see Izzy jump her mare at a nearby horseshow and had a lovely morning and went to see my Mum afterwards and we went for an ice lolly! I'm not really consuming much besides the tube feed (1000ml Nutrison energy @ 50ml per hour (day rate) and 35ml/ hour night rate) Totalling 1500 calories. I'm managed 1 - 2 bottles of peptamen per day and aside from that just clear liquids and boiled sweets, all of which are staying down. It's amazing!!!!!! Aside from the tube pain and tiredness due to the Tramacet I'm taking, I haven't felt this good for years, literally! My head feels so much clearer now the brain fog has gone and I feel like I'm really taking interest in things again, clothes, make up, career, getting out and about,- all the things a 30 year old should be thinking about - not lists of food I can and can't eat, my calorie intake, a pain scale, spending most of my time curled up in a painful ball or throwing up in the loo!
I hope this goes out to everyone that things WILL get better, maybe not in the way you'd like but in a way that you can get a handle on your life and start to live again, bit by bit.
All the best my lovelies.
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