Moans and Crohn's
Well, well, well. I appear to be writing something on LJ after a gap of many months (Sep 2010, I think, was the last time).
I returned to the UK and work after my luvverly career break (Oct 2009 - Sept 2010), which was spent here and over in Spain with mah hunneh in more or less equal proportions (http://madcatwoman.livejournal.com/104070.html). We went to Madrid, Buenasbodas (his parents' village), Talavera de la Reina (of Napoleonic War fame), Seville, Granada, Valencia, Murcia (and Alicante, of course), ate fantastic food, spent too much money and generally had a grand time.
Throughout the year I was plagued off and on with stomach troubles, which I put down to fantastic food and my generally dodgy guts, as I was diagnosed with IBS in 1999 or thereabouts. I just hunkered down for a few days, dosed up on Loperamide and ate simple stuff, before embarking on the next adventure. One thing I noticed was that each time the symptoms were the same. Dreadful stomach aches, followed by cramps, sweats and the runs, but with IBS, who knows...
I started back at work at the beginning of October 2010, and within ten days I was off sick for a few days with exactly the same thing. Blamed IBS, work did a stress assessment (yeah, I was stressed - new job, new office, new routine...), and back to the coal face. End of October, the same damn thing. Then since 20th November, I've been off sick continuously.
This time it was far worse than ever before. Diarrhoea/cramps every day, worse in the afternoons, and hours in the loo. Not much of an appetite, but I kept trying to keep eating properly through it. Went to my doc and got sick notes and more Loperamide, and we agreed that IBS can be a sod, but she wasn't surprised that I was depressed and stressed etc.
In January, after the worst Christmas on record, health-wise, She referred me to gastro-enterology at Leeds General Infirmary for investigations, and I eventually got an appointment for an initial consultation to take place in early March.
Feb 28th 2011 found me in St James Hospital gastro-surgical with suspected gall-bladder problems, after being admitted from the doctor's surgery. Poor Floren suddenly had to cope with taxis to visit me and fending for himself at home with barely any English. Fortunately a friend of ours is a native Spanish-speaker and lives in Leeds, so she was able to help out quite a bit when not away on business. But I digress.
Several tests later (ultrasound, x-rays, CT scan etc.) and my gall-bladder was declared to be still a thing of beauty, but my bowels were acting suspiciously and further investigations would be needed. Crohn's was mentioned as a possibility and I was put on steroids, intravenously at first and then 40mg of Prednisolone daily. Got allowed to eat a soft diet only and developed a bit of an appetite eventually. Apparently there was some narrowing of the small intestine and some funny goings-on in the terminal ileum too. I was sprung from St Jimmy's just over two weeks later as they couldn't get an appointment for me to have a colonoscopy soon enough to justify keeping me in hospital and it was deemed a better idea to send me home to be ill in my own surroundings, with a bag o' steroids and stuff. I was assured that I didn't need surgery and would be referred to the tender care of the medical gastroenterology team at LGI.
Ten days later and I was in LGI with atrial fibrillation and a dangerously low electrolyte balance - admitted again from the surgery after my doc nearly had a fit when he took my pulse, varying as it did between 60 and 172 bpm and all points in between. They did a heart trace thingy at the surgery, but then it was time to play in the nice ambulance again. Various electrolyte substances bunged into me quick-smart and two days later I was out and feeling pretty reasonable. Took myself shopping at Sainsburys and fell over in the car park, but what the heck!
April came and I was getting progressively weaker. Still suffering daily with diarrhoea and losing weight as I had no idea what I could/should eat, and had no damn appetite anyway. Wearing faecal incontinence nappies 24 hours a day, and unable to get off the floor unaided if I fell (which I did relatively often), and frequently unable to get off the loo unaided either, as I had no strength in my arms and legs. Being malnourished was part of it, but things were not helped by still being on 40mg of Prednisolone a day, which causes muscle tone loss in the arms and thighs. My hair was breaking and coming out rather more than usual, and the skin on my legs was getting sore as my ankles and legs were swelling with steroid-induced fluid retention. Couldn't get into the car to drive and could only get into the passenger seat if Floren or someone was on hand to lift my feet in for me, as I couldn't lift them off the floor.
On 26th April I finally had my colonoscopy! The procedure itself was fascinating (I could see the monitor for half of the show), and I was given Entonox to inhale rather than a sedative, so I was up and out of there far faster with no side-effects. The radiologist (or whatever) said that there were definite signs of Crohn's inflammation but I would have to wait for the 16 biopsies to come back before the consultant could make a definite diagnosis. Within three days of the colonoscopy, the diarrhoea had stopped in its tracks, the steroids had kicked in more definitely and I developed the appetite of an adolescent boy with the munchies. Unfortunately I was still restricted to low fat, low fibre, low residue foods. Think "white food" and that's more or less it. Chicken, white bread, soya milk in case of lactose intolerance, and the occasional prawn or bit of white fish with no batter or nice stuff. Strictly no fibrous veg (carrots and spuds ok if peeled and boiled to buggery), no salads, no raw veg, no friut with pips or skins, nothing with seeds in. Nothing fried and no red meat etc. In short, nothing that could be regarded as hard to get through the narrowed bits of my bowels and which might cause an obstruction needing surgery and removal of bits of tubing. I discovered Snackajacks caramel rice cakes and the dubious joys of Crackerbread... Managed to ditch the nappies, though! Result!
Four weeks later I saw a chap from the gastro-surgical (!) team, who said that the biopsies were inconclusive, that I would be referred to the medical gastroenterology team (which was good, because that was supposed to have happened earlier), and I was told to start reducing my steroids immediately because of the damage they were doing to me (skin slippage on my legs and leaking wounds needing dressing from the practice nurse...grim! among other things).
I had been off the steroids for about two weeks when I finally got to see someone from the medical gastro team. He apologised profusely for my having fallen through the cracks in the system and acknowledged that I should have been seen far sooner. He prescribed Pentasa (some kind of anti-inflammatory) and Azathioprine which is an immuno-suppressant drug, designed to knock seven shades of shit out of my immune system, as Crohn's is an auto-immune disease where your body turns on itself, or so I understand. Oh yes, and go back on the steroids while we get you stable again... Ok, you da boss... But, carte blanche to start investigating other foods at last, though no salads or raw veg, please
So, two weeks later (today), I had to go to the clinic at LGI because I was having such bad side-effects from the new drugs. Severe headaches, nausea, loss of appetite and, above all, diarrhoea again!!!! The nurses told me last Friday to stop both the Pentasa and the Azathioprine, and within two days I felt right as ninepence, with an appetite and all. Prawns and fish sticks seem to be my latest fads - just yummy!!
I saw a very young doctor, who seemed a bit clueless (and not very interested) who has decide that Pentasa isn't much use for Crohn's (so why are we all given it at some point?), and put me back on the Azathioprine again. Steroids to be reduced gradually as per previous instructions etc.
Various posts on the Crohn's forums (fora?) about Azathioprine say that it can have the side effects of nausea, headaches and diarrhoea. My money is on this being the bugbear and the Pentasa (while vile to take) being largely innocent. We shall see, as I start back on Aza tomorrow.
To say that I am fed-up is an understatement. I still can't drive or get in and out of the car or a taxi without help. I have barely any social life as I can't go out with any confidence and would have problems using the loo at friends' houses (can't manage stairs at all, and without my high-seated loo surround with bars on, I can't get off the loo either), so am pathetically grateful when anyone visits, which happens very rarely. My forays into the outside world are to the hospital or the health centre, although at one point I managed to go to the supermarket with Floren about three or four times. Whoopy-fuckin'- do!
Floren is out at his English classes every day from 8.30 to around 13.30, then lunch, then siesta, then homework and then that's the day done, effectively. I don't begrudge him his classes, they're vital, and he's made new friends through them, too, by going on the various trips they do on Saturdays (York, Saltaire etc.), and he's learning well and is much happier to be doing something that will benefit us both in the future.
I also know that without the help of this lovely, patient and caring man I could so easily have died on a couple of occasions at least, through not being able to move enough to get help or even reach the phone. Dave said he would leave me if I ever became disabled. Floren says that this is just part of life, that it is what it is, and he's here to help me and love me.
I prefer his approach.
I returned to the UK and work after my luvverly career break (Oct 2009 - Sept 2010), which was spent here and over in Spain with mah hunneh in more or less equal proportions (http://madcatwoman.livejournal.com/104070.html). We went to Madrid, Buenasbodas (his parents' village), Talavera de la Reina (of Napoleonic War fame), Seville, Granada, Valencia, Murcia (and Alicante, of course), ate fantastic food, spent too much money and generally had a grand time.
Throughout the year I was plagued off and on with stomach troubles, which I put down to fantastic food and my generally dodgy guts, as I was diagnosed with IBS in 1999 or thereabouts. I just hunkered down for a few days, dosed up on Loperamide and ate simple stuff, before embarking on the next adventure. One thing I noticed was that each time the symptoms were the same. Dreadful stomach aches, followed by cramps, sweats and the runs, but with IBS, who knows...
I started back at work at the beginning of October 2010, and within ten days I was off sick for a few days with exactly the same thing. Blamed IBS, work did a stress assessment (yeah, I was stressed - new job, new office, new routine...), and back to the coal face. End of October, the same damn thing. Then since 20th November, I've been off sick continuously.
This time it was far worse than ever before. Diarrhoea/cramps every day, worse in the afternoons, and hours in the loo. Not much of an appetite, but I kept trying to keep eating properly through it. Went to my doc and got sick notes and more Loperamide, and we agreed that IBS can be a sod, but she wasn't surprised that I was depressed and stressed etc.
In January, after the worst Christmas on record, health-wise, She referred me to gastro-enterology at Leeds General Infirmary for investigations, and I eventually got an appointment for an initial consultation to take place in early March.
Feb 28th 2011 found me in St James Hospital gastro-surgical with suspected gall-bladder problems, after being admitted from the doctor's surgery. Poor Floren suddenly had to cope with taxis to visit me and fending for himself at home with barely any English. Fortunately a friend of ours is a native Spanish-speaker and lives in Leeds, so she was able to help out quite a bit when not away on business. But I digress.
Several tests later (ultrasound, x-rays, CT scan etc.) and my gall-bladder was declared to be still a thing of beauty, but my bowels were acting suspiciously and further investigations would be needed. Crohn's was mentioned as a possibility and I was put on steroids, intravenously at first and then 40mg of Prednisolone daily. Got allowed to eat a soft diet only and developed a bit of an appetite eventually. Apparently there was some narrowing of the small intestine and some funny goings-on in the terminal ileum too. I was sprung from St Jimmy's just over two weeks later as they couldn't get an appointment for me to have a colonoscopy soon enough to justify keeping me in hospital and it was deemed a better idea to send me home to be ill in my own surroundings, with a bag o' steroids and stuff. I was assured that I didn't need surgery and would be referred to the tender care of the medical gastroenterology team at LGI.
Ten days later and I was in LGI with atrial fibrillation and a dangerously low electrolyte balance - admitted again from the surgery after my doc nearly had a fit when he took my pulse, varying as it did between 60 and 172 bpm and all points in between. They did a heart trace thingy at the surgery, but then it was time to play in the nice ambulance again. Various electrolyte substances bunged into me quick-smart and two days later I was out and feeling pretty reasonable. Took myself shopping at Sainsburys and fell over in the car park, but what the heck!
April came and I was getting progressively weaker. Still suffering daily with diarrhoea and losing weight as I had no idea what I could/should eat, and had no damn appetite anyway. Wearing faecal incontinence nappies 24 hours a day, and unable to get off the floor unaided if I fell (which I did relatively often), and frequently unable to get off the loo unaided either, as I had no strength in my arms and legs. Being malnourished was part of it, but things were not helped by still being on 40mg of Prednisolone a day, which causes muscle tone loss in the arms and thighs. My hair was breaking and coming out rather more than usual, and the skin on my legs was getting sore as my ankles and legs were swelling with steroid-induced fluid retention. Couldn't get into the car to drive and could only get into the passenger seat if Floren or someone was on hand to lift my feet in for me, as I couldn't lift them off the floor.
On 26th April I finally had my colonoscopy! The procedure itself was fascinating (I could see the monitor for half of the show), and I was given Entonox to inhale rather than a sedative, so I was up and out of there far faster with no side-effects. The radiologist (or whatever) said that there were definite signs of Crohn's inflammation but I would have to wait for the 16 biopsies to come back before the consultant could make a definite diagnosis. Within three days of the colonoscopy, the diarrhoea had stopped in its tracks, the steroids had kicked in more definitely and I developed the appetite of an adolescent boy with the munchies. Unfortunately I was still restricted to low fat, low fibre, low residue foods. Think "white food" and that's more or less it. Chicken, white bread, soya milk in case of lactose intolerance, and the occasional prawn or bit of white fish with no batter or nice stuff. Strictly no fibrous veg (carrots and spuds ok if peeled and boiled to buggery), no salads, no raw veg, no friut with pips or skins, nothing with seeds in. Nothing fried and no red meat etc. In short, nothing that could be regarded as hard to get through the narrowed bits of my bowels and which might cause an obstruction needing surgery and removal of bits of tubing. I discovered Snackajacks caramel rice cakes and the dubious joys of Crackerbread... Managed to ditch the nappies, though! Result!
Four weeks later I saw a chap from the gastro-surgical (!) team, who said that the biopsies were inconclusive, that I would be referred to the medical gastroenterology team (which was good, because that was supposed to have happened earlier), and I was told to start reducing my steroids immediately because of the damage they were doing to me (skin slippage on my legs and leaking wounds needing dressing from the practice nurse...grim! among other things).
I had been off the steroids for about two weeks when I finally got to see someone from the medical gastro team. He apologised profusely for my having fallen through the cracks in the system and acknowledged that I should have been seen far sooner. He prescribed Pentasa (some kind of anti-inflammatory) and Azathioprine which is an immuno-suppressant drug, designed to knock seven shades of shit out of my immune system, as Crohn's is an auto-immune disease where your body turns on itself, or so I understand. Oh yes, and go back on the steroids while we get you stable again... Ok, you da boss... But, carte blanche to start investigating other foods at last, though no salads or raw veg, please
So, two weeks later (today), I had to go to the clinic at LGI because I was having such bad side-effects from the new drugs. Severe headaches, nausea, loss of appetite and, above all, diarrhoea again!!!! The nurses told me last Friday to stop both the Pentasa and the Azathioprine, and within two days I felt right as ninepence, with an appetite and all. Prawns and fish sticks seem to be my latest fads - just yummy!!
I saw a very young doctor, who seemed a bit clueless (and not very interested) who has decide that Pentasa isn't much use for Crohn's (so why are we all given it at some point?), and put me back on the Azathioprine again. Steroids to be reduced gradually as per previous instructions etc.
Various posts on the Crohn's forums (fora?) about Azathioprine say that it can have the side effects of nausea, headaches and diarrhoea. My money is on this being the bugbear and the Pentasa (while vile to take) being largely innocent. We shall see, as I start back on Aza tomorrow.
To say that I am fed-up is an understatement. I still can't drive or get in and out of the car or a taxi without help. I have barely any social life as I can't go out with any confidence and would have problems using the loo at friends' houses (can't manage stairs at all, and without my high-seated loo surround with bars on, I can't get off the loo either), so am pathetically grateful when anyone visits, which happens very rarely. My forays into the outside world are to the hospital or the health centre, although at one point I managed to go to the supermarket with Floren about three or four times. Whoopy-fuckin'- do!
Floren is out at his English classes every day from 8.30 to around 13.30, then lunch, then siesta, then homework and then that's the day done, effectively. I don't begrudge him his classes, they're vital, and he's made new friends through them, too, by going on the various trips they do on Saturdays (York, Saltaire etc.), and he's learning well and is much happier to be doing something that will benefit us both in the future.
I also know that without the help of this lovely, patient and caring man I could so easily have died on a couple of occasions at least, through not being able to move enough to get help or even reach the phone. Dave said he would leave me if I ever became disabled. Floren says that this is just part of life, that it is what it is, and he's here to help me and love me.
I prefer his approach.