The hospital that night was a strange place is my fourth night so weird it's quiet on the flipside really busy. Footsteps up and Down the corridor, the rattles of the trolleys of instruments and drugs. Every now and again someone presses the buzzer. I have a drip in my arm so there's no walking away from illness for me. I am currently receiving three different IV antibiotics, IV steroids,IV fluids . On the last count I have had four cannulas inserted but I have bruises evidencing the 10+ attempts to cannulate me that have been made elsewhere. I have hidden small veins which are very hard to cannulate and some of my veins have started to collapse.
My hand where my drip is is really stinging and the pump keeps failing as I move around trying to get comfortable.
I'm also on a liquid only diet. Yesterday I was in nil by mouth so this is marginally better but not much! I can drink water I can drink fortisip which is a weird meal replacement drink it comes in a number of exotic flavour - bearing in mind this is a milkshake type thing I currently have a tropical flavour and a banana flavour. Who is ever heard of tropical flavoured milkshake
. I love eating eating I am real foodie I love to cook for the people I love to try new recipes I find cooking and eating a real pleasure and nurturing. From newborn infants we are taught that our lives routines revolve around mealtimes.when we have a baby one of the first thing we establish is a feeding routine, toddlers we placate and comfort with snacks and bribes. We fill lunchboxes for children with healthy nutritious food we are bombardedwith recipes in magazines newspapers and TV cooking programmes. And I can't eat!
I've seen every hour pass tonight. Really struggling to sleep with the drip, the noise, the horrid sheets and plastic mattress. I feel dirty and smell like a hospital
Apologies for typos- I have a drip in right hand so typing is ardourous but it helps to get it out of my head and into here. I'm not sure what the plan is currently. I have a date for my bowel resection operation in 8 weeks time but that's a long limbo to fill. I have a partial bowel obstruction and a perforation on my bowel. Both very serious conditions that need close monitoring. The drs change the goal posts every day the surgeon says one thing, registrar another, consultant another. They are all lovely and so dedicated but it is very frustrating being in bed, away from my gorgeous family with no firm plan in hand.
I am weeing in pots that are shaped like sombreros (Ar-wee-baa?) so they can measure my output and was wearing paper pants until my mum and sister came with emergency pants supplies :) my dignity is down the road somewhere
Saturday, 19 March 2016
Thursday, 17 March 2016
The CT scan and the gym
so after a huge palaver with a bed on a ward, no bed on a ward, witnessing a terse bed related stand off between nursing staff from different units I go back to the assessment unit and await a bed, and a CT. I'm promised my CT at 9pm. Eventually I'm told I have a bed, but not in the ward we were expecting. I was popped in my wheelchair again and off we trundled to my new bed. On the way up Vicky my fab nurse says " I don't really want to tell you where we're going.......... You're in the gym"
"Shut up!" I say ( in my defence I am a born and bred Bristolian) but no- there is a temporary ward set up in the physio rehab gym, 3 beds for 3 poor lost souls with no bed on a ward. So I get in bed with a view of the running machine, rowing machine and rehab walking bars. More about this later
At about 10.30 I get called down for my CT scan. I get dropped in the waiting room by the porter and left. It is a small waiting room, and it contains me in my wheelchair, a very dapper chap in his braces shirt and slacks in an ambulance trolley, another ahem less dapper chap on a hospital trolley and a little old guy in his dressing gown in a wheelchair like me. A bored looking nurse and 2 paramedics complete our party.
We sit in silence, occasionally catching each other's eyes and quickly looking back at the floor, the wall, our cuticles- ANYWHERE than in the eyes of another ill person. Suddenly there is a loud noise from the corner- dressing gown man lets out the loudest burp ever. We all, including him pretend it hasn't happened. Then trolley man starts calling for his nurse and she quickly erects a screen around his trolley ( please remember this waiting area is very small) it soon transpires quite quickly that he has had a bit of an accident and soiled his trolley. "Ribbit" says dressing gown man as he expels another huge belch. Oh bless trolley poo man but oh my days the small confined room, too many people and oh dear. We'll leave that there but it was unpleasant.
Soiled man goes in for scan, and is replaced by broken leg moaning man. Clearly he is in a lot of pain, he has a plaster cast on his lower leg which has been cut half off but he is in very vocal pain. Poo man comes out of scan, I go in. CT scans are weird. I'd already had to drink a jug of contrast stuff to light up my innards but when I got in the scanner they then gave me iv contract to light up the rest of me. So I am like a walking inside out Blackpool illuminations come ready brek kid hybrid. Now the iv contrast. How weird is that?! It feels warm and travels down your body warming as it goes. Luckily they warm you that when it hits your pubis area it feels like you are weeing yourself. Warm, spreading, and out of your control. Luckily CT is very quick and efficient so I was quickly scanned and popped back out into the waiting room where we are greeted with a loud low welcoming belch, and the sight of broken leg man in the foetal position on the floor having managed to fall or climb out of his chair. I am glad to leave the ct guys cajoling him back into his chair and I get pushed back to my gym home by the porter.
"Shut up!" I say ( in my defence I am a born and bred Bristolian) but no- there is a temporary ward set up in the physio rehab gym, 3 beds for 3 poor lost souls with no bed on a ward. So I get in bed with a view of the running machine, rowing machine and rehab walking bars. More about this later
At about 10.30 I get called down for my CT scan. I get dropped in the waiting room by the porter and left. It is a small waiting room, and it contains me in my wheelchair, a very dapper chap in his braces shirt and slacks in an ambulance trolley, another ahem less dapper chap on a hospital trolley and a little old guy in his dressing gown in a wheelchair like me. A bored looking nurse and 2 paramedics complete our party.
We sit in silence, occasionally catching each other's eyes and quickly looking back at the floor, the wall, our cuticles- ANYWHERE than in the eyes of another ill person. Suddenly there is a loud noise from the corner- dressing gown man lets out the loudest burp ever. We all, including him pretend it hasn't happened. Then trolley man starts calling for his nurse and she quickly erects a screen around his trolley ( please remember this waiting area is very small) it soon transpires quite quickly that he has had a bit of an accident and soiled his trolley. "Ribbit" says dressing gown man as he expels another huge belch. Oh bless trolley poo man but oh my days the small confined room, too many people and oh dear. We'll leave that there but it was unpleasant.
Soiled man goes in for scan, and is replaced by broken leg moaning man. Clearly he is in a lot of pain, he has a plaster cast on his lower leg which has been cut half off but he is in very vocal pain. Poo man comes out of scan, I go in. CT scans are weird. I'd already had to drink a jug of contrast stuff to light up my innards but when I got in the scanner they then gave me iv contract to light up the rest of me. So I am like a walking inside out Blackpool illuminations come ready brek kid hybrid. Now the iv contrast. How weird is that?! It feels warm and travels down your body warming as it goes. Luckily they warm you that when it hits your pubis area it feels like you are weeing yourself. Warm, spreading, and out of your control. Luckily CT is very quick and efficient so I was quickly scanned and popped back out into the waiting room where we are greeted with a loud low welcoming belch, and the sight of broken leg man in the foetal position on the floor having managed to fall or climb out of his chair. I am glad to leave the ct guys cajoling him back into his chair and I get pushed back to my gym home by the porter.
Wednesday, 16 March 2016
Hospital time
So here I am as an inpatient in the Bristol Royal infirmary..... Long story short, Monday was a good day- took the dogs out to abbots pool with my sister , it was a beautiful spring morning, we met an amorous retriever called Merlin and played musical dogs for 25 minutes after he decided he wanted a go in my car (and truth be told a go on my sisters dog Dora!) but that's another story! I felt a bit poorly with a sore ear and swollen glands that I was okay and it was beautiful day.
Tuesday morning I woke up with a terrible stomachache. I mentioned to Simon and cracked on with is your morning activities, took some buscopan and hope this will do the trick. Ironically I then had to take my cat (affectionally known as golden balls)to the vets to be castrated. On the way to the vets I was really struggling with stomach cramps but was determined to get him there as I already cancelled his appointment once due to my illness. Golden balls of dutifully delivered for his De- knackering I got back in the car and had to sit for a moment before I could drive home as my stomach was so painful. I drove very slowly home and come to the conclusion that I would need to utilise my painkillers when I got home as today was not a good day. I got home, took four codeine, curled up on the sofa with, as always my lovely furry nurse Fifi not very far from me. The pain however seem to be increasing and eventually I gave in and rang my mum and as I was in so much pain. Mum came down and we decided that a phone all to the GP would be a good idea. I rang the GP and asked for a call back with on-call doctor. I was told by the receptionist that the GP would call me back soon. The most unusual symptoms I had was that I wasn't hungry at all. I am always hungry I am a "good eater" and especially since I've been on the steroids, if you sit too close to me for too long I may eat you!!! Over the course of the morning my pain got stronger and stronger to spite my 4 codeine tablets. there was no sign of a call back from the GP so I rang 111. After reassuring call handler that no I wasn't bleeding from every orifice, trying to explain my condition and indeed my drug regime she decided that I need to speak to my GP. No shit Sherlock. Decided the 111 would put a report through to the GP hopefully to speed up the so far non-existent callback. But half an hour after this the pain dramatically increased there was still no sign of a phone call back so my mum decided to ring 999 My mother-in-law had arrived by now on standby for school run so I had two mums, no callback and off the scale pain. 999 decided that I needed, you couldn't make this up, a call back! So don't use the phone I'm waiting for a call from the GP!! The GP via 111 and ambulance service. Eventually I managed to speak to the GP who rang my Gastro team here at BRI and it was decided I needed to come in ASAP to the GP support unit which is housed in the same place as the been back clinic where is where are spent my previous three admissions at least it's familiar!
Once I'm settled my consultant Dr Dixon comes to see me -he is a marvellous chap and is very thorough in his explanations of what is happening and what his plan is. He decided that I needed a CT scan urgently to establish what was going on as this is now my fourth trip to hospital since Christmas. He then places my first of many cannulas and we start the merry-go-round of giving blood and receiving drugs. At this point it is about 4:30 PM
The BRI is currently on black alert and there are no beds at all. I then find out that there is a queue of 120 people waiting to be seen in A&E. We're not sure at this point if I will get my CT scan that evening or not however despite the lack of beds Dr Dixon decided that I will be admitted as we really need to work out what's going on and were not getting any better despite doubling my humira dosage and the oral steroids I've been on the last month.
To be continued- 4.30am and I've just been woken up for a blood test. In a vein in my foot as my arm veins have given up and collapsed and/or hidden. Ouch
Tuesday morning I woke up with a terrible stomachache. I mentioned to Simon and cracked on with is your morning activities, took some buscopan and hope this will do the trick. Ironically I then had to take my cat (affectionally known as golden balls)to the vets to be castrated. On the way to the vets I was really struggling with stomach cramps but was determined to get him there as I already cancelled his appointment once due to my illness. Golden balls of dutifully delivered for his De- knackering I got back in the car and had to sit for a moment before I could drive home as my stomach was so painful. I drove very slowly home and come to the conclusion that I would need to utilise my painkillers when I got home as today was not a good day. I got home, took four codeine, curled up on the sofa with, as always my lovely furry nurse Fifi not very far from me. The pain however seem to be increasing and eventually I gave in and rang my mum and as I was in so much pain. Mum came down and we decided that a phone all to the GP would be a good idea. I rang the GP and asked for a call back with on-call doctor. I was told by the receptionist that the GP would call me back soon. The most unusual symptoms I had was that I wasn't hungry at all. I am always hungry I am a "good eater" and especially since I've been on the steroids, if you sit too close to me for too long I may eat you!!! Over the course of the morning my pain got stronger and stronger to spite my 4 codeine tablets. there was no sign of a call back from the GP so I rang 111. After reassuring call handler that no I wasn't bleeding from every orifice, trying to explain my condition and indeed my drug regime she decided that I need to speak to my GP. No shit Sherlock. Decided the 111 would put a report through to the GP hopefully to speed up the so far non-existent callback. But half an hour after this the pain dramatically increased there was still no sign of a phone call back so my mum decided to ring 999 My mother-in-law had arrived by now on standby for school run so I had two mums, no callback and off the scale pain. 999 decided that I needed, you couldn't make this up, a call back! So don't use the phone I'm waiting for a call from the GP!! The GP via 111 and ambulance service. Eventually I managed to speak to the GP who rang my Gastro team here at BRI and it was decided I needed to come in ASAP to the GP support unit which is housed in the same place as the been back clinic where is where are spent my previous three admissions at least it's familiar!
Once I'm settled my consultant Dr Dixon comes to see me -he is a marvellous chap and is very thorough in his explanations of what is happening and what his plan is. He decided that I needed a CT scan urgently to establish what was going on as this is now my fourth trip to hospital since Christmas. He then places my first of many cannulas and we start the merry-go-round of giving blood and receiving drugs. At this point it is about 4:30 PM
The BRI is currently on black alert and there are no beds at all. I then find out that there is a queue of 120 people waiting to be seen in A&E. We're not sure at this point if I will get my CT scan that evening or not however despite the lack of beds Dr Dixon decided that I will be admitted as we really need to work out what's going on and were not getting any better despite doubling my humira dosage and the oral steroids I've been on the last month.
To be continued- 4.30am and I've just been woken up for a blood test. In a vein in my foot as my arm veins have given up and collapsed and/or hidden. Ouch
Thursday, 10 March 2016
Chronically Caz
Well its been a while, and I've been ILL! Finally it would appear my not too debilitating Crohns has muscled its way to the front of our lives and its stamping, howling and making its presence felt.
Since Christmas I have had x rays, 2 trips to A&E, 2 ambulances, 3 days in hospital and more drugs than Ive ever had before!
I had to finally admit defeat and accept a prescription for Prednisolone- a vile hateful drug that is very effective in treating inflammation, but brings with it a sackful of horrible side effects that make you wonder if its worth taking them in the first place. It is a steroid and causes facial bloating, known as "moon face" it also makes me shake, so I take other meds to counter act that. It also makes you hungry. Not just peckish, but ravenous beast hungry. "Don't sit next to me too still or I will eat you" hungry. Climbing through the cupboards eating the packed lunch fodder hungry. It also makes me sweat. and sweat, and sweat. My hair is falling out, my tongue is split painfully down the middle, I have spots, Im bloated. I have mood swings. I cry a lot. Im exhausted. So so tired. This is exaggerated by the two injections I administer into my stomach every other monday- they cause major fatigue, as well as the nice symmetrical bruising either side of my (bloated) stomach. I then take another drug to counter act the heartburn the other drugs cause, my usual anti depressant and codeine when the pain is really bad (daily).
Since Christmas I have had x rays, 2 trips to A&E, 2 ambulances, 3 days in hospital and more drugs than Ive ever had before!
I had to finally admit defeat and accept a prescription for Prednisolone- a vile hateful drug that is very effective in treating inflammation, but brings with it a sackful of horrible side effects that make you wonder if its worth taking them in the first place. It is a steroid and causes facial bloating, known as "moon face" it also makes me shake, so I take other meds to counter act that. It also makes you hungry. Not just peckish, but ravenous beast hungry. "Don't sit next to me too still or I will eat you" hungry. Climbing through the cupboards eating the packed lunch fodder hungry. It also makes me sweat. and sweat, and sweat. My hair is falling out, my tongue is split painfully down the middle, I have spots, Im bloated. I have mood swings. I cry a lot. Im exhausted. So so tired. This is exaggerated by the two injections I administer into my stomach every other monday- they cause major fatigue, as well as the nice symmetrical bruising either side of my (bloated) stomach. I then take another drug to counter act the heartburn the other drugs cause, my usual anti depressant and codeine when the pain is really bad (daily).
Hopefully however, this will be short term, as my consultant has decided that the time has come to refer me to the surgeon for a bowel resection operation. This involves surgically removing the diseased portion of my bowel and sewing it back up to make it good as new. This is an op that carries a fab success rate, with many people obtaining full remission for a number of years, being free of meds and well. It also carries the possibility of either a permanent or temporary stoma bag- something I should imagine would take a lot of adjusting to, but you just do. If i had a pound for every person that recoils and says "Ewwww I could NEVER inject myself" when they find out this is what I do I would be very rich. and actually, do you know what? you could. I have diabetic friends who inject a hell of a lot more often than my once a fortnight. you do what you have to.
So throughout this period of illness I have been battling my demons on a daily basis. Its hard to get up and out no matter how ill you feel, despite knowing deep down it will make you better. I can't remember the last time I ran (well, more on this in a second) but thankfully due to my little furry nurse Fiona the Jackapoo I have to get out every day with her.
The last few days I must admit have been hard. I have taken to my sofa, licking my wounds and feeling sorry for myself. Im fed up of being ill, Im fed up with being a burden on my family, I feel guilty watching my husband come home from work exhausted and then have to pick up the slack that I haven't managed. Yesterday my nearly80yearold Father in Law who has recently been bed bound with flu collected a prescription and delivered it to me. My sister had to rush to my house and call me an ambulance after I had a funny turn due to all my meds and I genuinely thought I was dying. Im fat, I can't eat healthily as most things that are considered healthy are like kryptonite to a crohns tummy (fruit, veg, fibre, wholemeal things)
Yet this morning when I woke up the sun was shining. Despite daring to eat some salad last night I was in not too bad pain. I got dressed into my running gear and thought to myself sometimes even getting into the gear is the hardest bit. I decided to take Fiona to my local woods and wore my trainers not my wellies as it is that little bit drier after the torrential rain we've had for what feels like about 3 years..............It was sunny, bright and cold. The woods is awash with birds, the stream is trickling, there are crocuses, daffodils, snowdrops and dogs of all varieties. Suddenly I found myself at the top of a downhill path. Come on, I said to myself, you've got this. JUST RUN. It doesn't have to be a half marathon, or a 10k, or a 5k. It has to be one foot in front of the other.
So like the great Forrest Gump before me, I just ran. Not far, not fast. But I ran. One foot in front of the other. One more step along the world I go. One step at a time. Because I can. Today is a good day, and I am well enough to have a little trot along the woods. Tomorrow may be a bad day and I might not be able to. But believe me, if I can, I will, because right here, right now, despite the being bloating, and balding, and bad tempered I feel inspired and nourished by one tiny run through the woods. So far I would say that has been the best prescription!
Thursday, 12 November 2015
Run away from illness
"In the hospital it is as quiet as a tomb. The nurse fights to find a vein in my right arm. We give up after five attempts. Would you faint if someone stuck a needle into your arm? I've got used to it - but I still shut my eyes.
The Gautama Buddha instructs me to walk away from illness. But he wasn't attached to a drip.
The drip stings
A lump swells up in my arm
Out comes the drip
An electric shock sparks up my arm
How can I walk away with a drip attached to me?
How am I going to walk away from this?"
Derek Jarman- Blue
Please be warned that this may be a brain dump type post..........
The above excerpt is from `Derek Jarmans fantastic work "Blue"
http://www.queerculturalcenter.org/Pages/Jarman/JarmanBlue.html
https://www.youtube.com/watch?v=3RoasUMmV9Y
I woke up with the lines "walk away from illness" on a loop in my head this morning after a particularly difficult appointment with my Crohns consultant yesterday. I studied Blue in depth many years ago when I was at performing arts college, and his lines about the waiting room always whirl around my head at every appointment
Here I am again in the waiting room. Hell on Earth is a waiting room. Here you know you are not in control of yourself, waiting for your name to be called: "712213". Here you have no name, confidentiality is nameless. Where is 666? Am I sitting opposite him/her?
Now obviously I would never be as crass as to compare my experiences of Crohns with Derek Jarmans terminal illness and ultimate death but there is a definite familiarity of the medical roundabout you find yourself on.
Since I was diagnosed in 2010 I have been on many different medications- sometimes the side effects are worse than the illness they are supposed to be helping. I started on steroids that made me a bit ragey and buggered my immune system. I then moved on to methotrexate which made my hair fall out and made me vomit. and vomit. and sleep. and have headaches.Then made me so depressed I ended up on meds for that. I then had 18 months of wonderful remission with no Crohns symptoms at all. Then it came back. I then went on Azathioprine which made me feel like I was having a stroke and gave me such a bad chest infection I ended up in A&E at 3am unable to stop coughing. I then went back onto methotrexate, but this time injections which apparently have less of a vomitty effect. But yay! I kept the headaches and the lunacy. So I came off that.
Im March this year I went to see my consultant in a major flare. He told me there and then I had a choice of Humira injections or Infliximab infusions- sort of chemo-esque delivered by a drip once a week. If I didn't choose I was to be admitted as an inpatient. I chose Humira- a medicine that is self injected once a fortnight after the loading doses given on a ward. When I went in for my second loading dose they had an extra gift for me while I was there: an iron infusion as I was by this point so anaemic the iron tablets weren't cutting it! SO a nice bag of iv iron it was- or the Guinness infusion as it looked so much like.
Ive now been on Humira for 7 months, which was fine until the seasons changed and I have had infection after infection after infection due to the immunosuppressant element. I have had tonsillitis, a chest infection, and cold upon cold upon cold. 2 weeks of mega antibiotics and have been unable during this time to take my Humira, so happy days! My Crohns has gone into full flare mode.
I went to see my consultant yesterday and was given two new medications- oh the excitement. Im back on steroids for a month and then he has given me a "bulking agent" to well, I'll leave you to figure what thats for...........
I am to leave off the Humira for another 3 weeks until I have cleared all these infections and then hopefully will be able to continue with it.
However there is an alternative...................Surgery.
It has been mentioned before by my consultant but this time it seems more of a choice than an eventual "one day" distant option. Now for the technical bit- My crohns is in my ileum- ileitis
http://www.ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease/types-of-crohns-disease.html
this means the surgery on offer would be an ileostomy
http://www.nhs.uk/conditions/ileostomy/Pages/Introduction.aspx
a huge thing for anyone to get their head round, albeit a temp ileostomy. They will take out the dodgy bit (12 cms in my case), give me a stoma for 6 months, and then reattach my innards with no inflammation. Surgery can work wonders- people can remain in remission for many many years after surgery, OR it can begin a game of cat and mouse where the inflammation moves along the intestine, requiring further surgeries.
What a great decision to have to make *sarcasm*
Yesterday I felt quite sorry for myself. I have a lot whirling round in my head- options, choices, decisions. Whilst dealing with the side effects of the various drugs and getting my head round the 20kg I have gained since diagnosis. On a positive note the consultant has suggested that I give up work for the forseeable. It is just not feasible to try and hold down a job when your toilet trips are in excess of 5 or 6 a day, and last on average 40 minutes. When the side effects of the drugs make you so ill, so tired, so grumpy. This is a good thing now I have got my head round the concept that I am not lazy and workshy, I am ill and need to look after me to be well enough to care for the family.
It also give me time to run, in the day. I tried it for the first time this morning- I dropped my daughter at school in my running kit armed with my garmin, my headphones and my playlist. And I ran. I ran just over 4km and I ran away from illness. Derek Jarman came with me in my head, walking away from illness. I thought of his drip as I ran with my three huge bruises on my inner arm from yesterdays blood tests. I thought of the poo sample I had to supply the hospital yesterday. Which poor bugger had to test that this morning! Id much rather be running than fiddling about with other peoples poo. Running won't cure my Crohns. Running won't change the side effects of the medication or my utter impotent rage I sometimes suffer at the unfairness of my diagnosis. But running helps to clear my head. I processed some of the info I'd been given. I thought about my options. I was thankful that I was running. I was thankful for the NHS. I was thankful for my husband and family. I was so so thankful for my husband and his unwavering support, his wonderful attitude toward my giving up work, thus leaving ALL the financial commitments to him.
Thank you running, for allowing me to revel in what my body CAN do, rather than bemoaning what it can't do, and focusing on the broken bits. I will run away from illness, me and Derek Jarman, as long as I can.
The Gautama Buddha instructs me to walk away from illness. But he wasn't attached to a drip.
The drip stings
A lump swells up in my arm
Out comes the drip
An electric shock sparks up my arm
How can I walk away with a drip attached to me?
How am I going to walk away from this?"
Derek Jarman- Blue
Please be warned that this may be a brain dump type post..........
The above excerpt is from `Derek Jarmans fantastic work "Blue"
http://www.queerculturalcenter.org/Pages/Jarman/JarmanBlue.html
https://www.youtube.com/watch?v=3RoasUMmV9Y
I woke up with the lines "walk away from illness" on a loop in my head this morning after a particularly difficult appointment with my Crohns consultant yesterday. I studied Blue in depth many years ago when I was at performing arts college, and his lines about the waiting room always whirl around my head at every appointment
Here I am again in the waiting room. Hell on Earth is a waiting room. Here you know you are not in control of yourself, waiting for your name to be called: "712213". Here you have no name, confidentiality is nameless. Where is 666? Am I sitting opposite him/her?
Now obviously I would never be as crass as to compare my experiences of Crohns with Derek Jarmans terminal illness and ultimate death but there is a definite familiarity of the medical roundabout you find yourself on.
Since I was diagnosed in 2010 I have been on many different medications- sometimes the side effects are worse than the illness they are supposed to be helping. I started on steroids that made me a bit ragey and buggered my immune system. I then moved on to methotrexate which made my hair fall out and made me vomit. and vomit. and sleep. and have headaches.Then made me so depressed I ended up on meds for that. I then had 18 months of wonderful remission with no Crohns symptoms at all. Then it came back. I then went on Azathioprine which made me feel like I was having a stroke and gave me such a bad chest infection I ended up in A&E at 3am unable to stop coughing. I then went back onto methotrexate, but this time injections which apparently have less of a vomitty effect. But yay! I kept the headaches and the lunacy. So I came off that.
Im March this year I went to see my consultant in a major flare. He told me there and then I had a choice of Humira injections or Infliximab infusions- sort of chemo-esque delivered by a drip once a week. If I didn't choose I was to be admitted as an inpatient. I chose Humira- a medicine that is self injected once a fortnight after the loading doses given on a ward. When I went in for my second loading dose they had an extra gift for me while I was there: an iron infusion as I was by this point so anaemic the iron tablets weren't cutting it! SO a nice bag of iv iron it was- or the Guinness infusion as it looked so much like.
Ive now been on Humira for 7 months, which was fine until the seasons changed and I have had infection after infection after infection due to the immunosuppressant element. I have had tonsillitis, a chest infection, and cold upon cold upon cold. 2 weeks of mega antibiotics and have been unable during this time to take my Humira, so happy days! My Crohns has gone into full flare mode.
I went to see my consultant yesterday and was given two new medications- oh the excitement. Im back on steroids for a month and then he has given me a "bulking agent" to well, I'll leave you to figure what thats for...........
I am to leave off the Humira for another 3 weeks until I have cleared all these infections and then hopefully will be able to continue with it.
However there is an alternative...................Surgery.
It has been mentioned before by my consultant but this time it seems more of a choice than an eventual "one day" distant option. Now for the technical bit- My crohns is in my ileum- ileitis
http://www.ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease/types-of-crohns-disease.html
this means the surgery on offer would be an ileostomy
http://www.nhs.uk/conditions/ileostomy/Pages/Introduction.aspx
a huge thing for anyone to get their head round, albeit a temp ileostomy. They will take out the dodgy bit (12 cms in my case), give me a stoma for 6 months, and then reattach my innards with no inflammation. Surgery can work wonders- people can remain in remission for many many years after surgery, OR it can begin a game of cat and mouse where the inflammation moves along the intestine, requiring further surgeries.
What a great decision to have to make *sarcasm*
Yesterday I felt quite sorry for myself. I have a lot whirling round in my head- options, choices, decisions. Whilst dealing with the side effects of the various drugs and getting my head round the 20kg I have gained since diagnosis. On a positive note the consultant has suggested that I give up work for the forseeable. It is just not feasible to try and hold down a job when your toilet trips are in excess of 5 or 6 a day, and last on average 40 minutes. When the side effects of the drugs make you so ill, so tired, so grumpy. This is a good thing now I have got my head round the concept that I am not lazy and workshy, I am ill and need to look after me to be well enough to care for the family.
It also give me time to run, in the day. I tried it for the first time this morning- I dropped my daughter at school in my running kit armed with my garmin, my headphones and my playlist. And I ran. I ran just over 4km and I ran away from illness. Derek Jarman came with me in my head, walking away from illness. I thought of his drip as I ran with my three huge bruises on my inner arm from yesterdays blood tests. I thought of the poo sample I had to supply the hospital yesterday. Which poor bugger had to test that this morning! Id much rather be running than fiddling about with other peoples poo. Running won't cure my Crohns. Running won't change the side effects of the medication or my utter impotent rage I sometimes suffer at the unfairness of my diagnosis. But running helps to clear my head. I processed some of the info I'd been given. I thought about my options. I was thankful that I was running. I was thankful for the NHS. I was thankful for my husband and family. I was so so thankful for my husband and his unwavering support, his wonderful attitude toward my giving up work, thus leaving ALL the financial commitments to him.
Thank you running, for allowing me to revel in what my body CAN do, rather than bemoaning what it can't do, and focusing on the broken bits. I will run away from illness, me and Derek Jarman, as long as I can.
Monday, 2 November 2015
The streak day 2
So it would appear that despite my better judgement I am Still Ill and after waking up (and STAYING UP) at 4am completely congested I dragged myself back to work for the first time in 2 weeks only to be sent promptly home by my manager. I promptly slept half the day on the sofa and was supposed to be going running with the Trundlers this evening but they all protested and said I shouldn't as Im still rough, and I DESPERATELY want and NEED to be better for the graduation of our first C25K ladies tomorrow eve. Anyway I was so determined to do my streak and not fail on day 2 that I got my running stuff on while it was just still light and treated myself to 1km. Up and down my garden LOL. Now luckily I have a large garden but I also have four amused children, 2 confused cats and no doubt some still sniggering neighbours.
The most interesting thing is just before I ventured out into the garden my son #1 (aged Nearly 12) said "You need to go and run in the street, Mum, not just the garden" "Why?" I asked him.
"Because when you go out and run you INSPIRE people. Thats what everyone always says when you post about running on Facebook, that you are an inspiration so you need to run out on the streets where people can see you"
I am absolutely gobsmacked. And ridiculously proud of my son for noticing what I do, and being so very supportive. And I'll tell you what. Im rather proud of me, too, for trotting up and down my garden, scaring my cats, slipping on manky apples, receiving a face full of cobwebs as I circled the rotary washing line for the 19th time and no doubt now having a street full of neighbours that finally have the proof they needed that I am, in fact, bonkers!
Sunday, 1 November 2015
The crying tree
Lets start at the beginning. A few years ago my husband wanted to do Parkrun-he'd read about it and rather fancied it after he'd done a 10k or two. He persuaded me to go along as he knew I was keen to start running but was apprehensive. Actually it was a fair few years ago as I know I was still smoking and I'm about to celebrate 3 years smoke free! Anyway I digress:
I can remember not being overly keen on this Parkrun lark- I'd read the website and been assured they were very friendly and inclusive but still I was scared. So scared that I snivelled delicately behind my (huge, non running) sunglasses the whole way there. When we arrived I'd sort of imagined that there would be some sort of nice "newbie" section. You know, like in aerobics "any new people. any injuries? Welcome, lovely to meet you, lets bugger this running lark and have a cuppa" - you know, that total flight of fantasy that meant No Running With The Proper Runners. However we arrived dead on starting time and before I even realised I was there everyone (who were all dressed like proper runners) took off like shit off a shovel up a quite frankly humongous hill. Very quickly I realised that I was being overtaken quite swiftly by the kids, buggy pushers and dog runners, people who are usually related to the back of the pack. I tried to keep up (remember its a proper shitter of a hill) and suddenly a lady was beside me. "Are you ok? Im the back marker and we're quite far from the back" Me: "wheeze, gasp, hiccup, sob" I swear to God at this point some of the lycra clad men were fair bounding back DOWN the shitting hill, barely a sweat on their lycra leggings (which to be fair will ALWAYS look weird on men). At this point I informed the back marker lady that I "couldn't do it" and to "carry on without me" like a dying soldier in the trenches and I limped my way back to the tree where all the belongings were, to wait for my husband with my (huge) sunglasses firmly back over my (still leaking) eyes. From this moment forth it became known as "The Crying Tree"- a name that has since been adopted by some of my running friends that have helped me to conquer my fear of that dreaded Parkrun.
Anyway I was thinking about the crying tree today. I have been quite poorly lately- Tonsillitis, a lingering cold, two lots of antibiotics and a trip to the out of hours GP yesterday where I got diagnosed with costochondritis (inflammation of the cartilage between the ribs from coughing) and I am sick of being ill. I missed my planned run at Tyntesfield this morning but then I realised that a few of my C25K pals were going out to do a 28 minute run at lunchtime. I decided to join them. I decided that actually its a BEAUTIFUL day (17 degrees on Nov 1st) and I want to blow away some cobwebs and possibly some germs, especially as I return to work tomorrow after 2 weeks off *sob*
We started to run and it was hard- my calves were hurting, my nose is blocked and my chest definitely isn't 100%. After about 10 mins I was thinking of stopping- Doubting Delores popped into my head "You're poorly, You're tired, it won't MATTER if you stop and wait for the others to finish, they'll understand, you can just wait, or walk" etc etc. Then I thought: If I stop and they carry on I will be PISSED OFF. I won't be able to join in the post run selfie, I won't have the smug pants, I will feel CRAP. In fact, I would be firmly under the metaphorical crying tree. I don't want to go back to the crying tree. The crying tree lives firmly in my running past. There will be no more crying trees on my runs.
In fact I enjoyed it so much I have decided to do a running streak for November. Now don't worry, thats not streak as in nudey rudey streak, its a streak of a number of runs in a row- Im am doing 30 days (the whole of Nov) and the only stipulation is each run is at least 1km (so no running down drive in trainers and dressing gown pretending that counts before diving back into bed feeling falsely smug!) I will record it here so I can brain dump all the feelings I have during these 30 days. Hopefully there will be no crying trees involved...........
I can remember not being overly keen on this Parkrun lark- I'd read the website and been assured they were very friendly and inclusive but still I was scared. So scared that I snivelled delicately behind my (huge, non running) sunglasses the whole way there. When we arrived I'd sort of imagined that there would be some sort of nice "newbie" section. You know, like in aerobics "any new people. any injuries? Welcome, lovely to meet you, lets bugger this running lark and have a cuppa" - you know, that total flight of fantasy that meant No Running With The Proper Runners. However we arrived dead on starting time and before I even realised I was there everyone (who were all dressed like proper runners) took off like shit off a shovel up a quite frankly humongous hill. Very quickly I realised that I was being overtaken quite swiftly by the kids, buggy pushers and dog runners, people who are usually related to the back of the pack. I tried to keep up (remember its a proper shitter of a hill) and suddenly a lady was beside me. "Are you ok? Im the back marker and we're quite far from the back" Me: "wheeze, gasp, hiccup, sob" I swear to God at this point some of the lycra clad men were fair bounding back DOWN the shitting hill, barely a sweat on their lycra leggings (which to be fair will ALWAYS look weird on men). At this point I informed the back marker lady that I "couldn't do it" and to "carry on without me" like a dying soldier in the trenches and I limped my way back to the tree where all the belongings were, to wait for my husband with my (huge) sunglasses firmly back over my (still leaking) eyes. From this moment forth it became known as "The Crying Tree"- a name that has since been adopted by some of my running friends that have helped me to conquer my fear of that dreaded Parkrun.
Anyway I was thinking about the crying tree today. I have been quite poorly lately- Tonsillitis, a lingering cold, two lots of antibiotics and a trip to the out of hours GP yesterday where I got diagnosed with costochondritis (inflammation of the cartilage between the ribs from coughing) and I am sick of being ill. I missed my planned run at Tyntesfield this morning but then I realised that a few of my C25K pals were going out to do a 28 minute run at lunchtime. I decided to join them. I decided that actually its a BEAUTIFUL day (17 degrees on Nov 1st) and I want to blow away some cobwebs and possibly some germs, especially as I return to work tomorrow after 2 weeks off *sob*
We started to run and it was hard- my calves were hurting, my nose is blocked and my chest definitely isn't 100%. After about 10 mins I was thinking of stopping- Doubting Delores popped into my head "You're poorly, You're tired, it won't MATTER if you stop and wait for the others to finish, they'll understand, you can just wait, or walk" etc etc. Then I thought: If I stop and they carry on I will be PISSED OFF. I won't be able to join in the post run selfie, I won't have the smug pants, I will feel CRAP. In fact, I would be firmly under the metaphorical crying tree. I don't want to go back to the crying tree. The crying tree lives firmly in my running past. There will be no more crying trees on my runs.
In fact I enjoyed it so much I have decided to do a running streak for November. Now don't worry, thats not streak as in nudey rudey streak, its a streak of a number of runs in a row- Im am doing 30 days (the whole of Nov) and the only stipulation is each run is at least 1km (so no running down drive in trainers and dressing gown pretending that counts before diving back into bed feeling falsely smug!) I will record it here so I can brain dump all the feelings I have during these 30 days. Hopefully there will be no crying trees involved...........
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