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
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