Tuesday 22 March 2016

PICC lines and pink shrimps

Monday pm: so,after a terrible weekend where all my veins failed so I had no access in (drugs) or out (bloods) today I finally got a PICC line fitted. This is port that goes in a vein in your arm directly into your chest that they can put iv in, and take blood out. It can stay in situ for a year and is painless once in.
Prior to having this though I have been unable to have my iv drugs and have deteriorated rapidly. Yesterday I reached the stage where I couldn't even tolerate Fortisip- the enteral meal replacement I've been supposed to be having as it was so painful and was coming straight out, almost instantly.
I had numerous attempts to cannulate me and was sore, dehydrated, and very unhappy, woozy on morphine and so weak.
 I was very nervous about the PICC being placed- it involves ultrasound, local anaesthetic, a scapel and feeding 49cm of tube up a vein into your chest. Not my fave way to spend a Monday afternoon. Adding to the stress was my awful condition, my low mood and the anticipation of waiting all day for the PICC Man to arrive ( I was number 6 on a list of 6) my husband stayed with me all day and was fab at keeping me calm throughout the long awaited and thankfully relatively painless procedure when it happened.

I feel now like the sun has come out a bit! I just had (loads) of blood taken and didn't feel a THING. I have a couple of tubes hanging out of my arm but it's so much more comfy than a failing cannula and dozens of cannulation attempts. My lowest ebb was 11.45 last night when an anaesthetist, complete with ultrasound machine , couldn't find my vein to cannulate me, and there was blood dripping out of another failed attempt on the floor, the bed, her, me.......a low point.

Tuesday  2.15pm
What a change! Now I have the PICC fitted and am getting the correct drugs I have perked up 100 fold. My blood tests are normal indicating the infection and inflammation is lowering and going. It has been decided we will aim for my op date of 18th may with a view to weaning me off the steroids and getting as well as I can for the op in the meantime, thus dramatically I creasing my chances of laparoscopic surgery, quicker recovery and no stoma bag.

I am now allowed to eat. After 6 days of not eating this is a Very Big Thing. My legend of a sister bought me in some home made macaroni cheese last night (when we still weren't entirely sure if I was allowed to eat- I may have been slightly economical with relaying the drs words) and it was like an elixir of all the deities sitting in my tummy and restoring me to my happy well fed self! Even cornelius carbonara would not have tasted that good.
I will remain on a low residue diet until my op- low residue is any food that doesn't leave a residue in you and can be digested easily. It is odd as it goes against all our conditioned ideas of "healthy eating" as I am having to eat white not wholemeal, processed white carbs, no fibre, no skins, nuts, seeds. Things the gut doesn't have to work to hard to process. I will be working with a dietician to establish this and sort out the calories I need etc to get me in "peak condition" for the surgery (peak condition makes me think I should enter Crufts while I'm at it)

I am now exhausted by the small exercise of eating a white bread, plain chicken sandwich but I never ever realised it would taste THAT GOOD.............

Ps: re reading the title there is a reason behind the pink shrimps. On day 5 of not eating, in an act of reckless rebellion I removed from the packet and licked one pink shrimp sweet. It was the most delicious lick of a sweet that ever existed. And all the better as it was forbidden

Sunday 20 March 2016

Bed sores, bleach and bad days

i had oramorph for breakfast. I would have preferred a bacon roll but after a relatively settled night after they took out my painful cannula, I took off my horrid TED stockings (rebel) I read my book, fell asleep and slept almost quite well........
Then I woke up. In pain. Ow. So oramorph and two cannula attempts it was. No success with cannula but I have a bed sore on my elbow for ultimate granny chic (beat that, hipsters). Slept again. More cannula attempts, drugs given orally as I have no veins left to cannulate.
My Dr came and has called on call Dr who I am awaiting. Punctuation Caz. Not Dr who.
Feel bloody awful. Fed up of being cheerful. Wish I'd lingered over my last supper toast a bit more -5 days ago.
Today I'm all about the smells. Nice nurse smelt of apples and had a really nice snake print hair clip I concentrated on as she tried to cannulate me. Another one smelt of citrus. Then Bleach Man cleaned my room and I thought I'd gone to a swimming pool. I've had my eyes shut most of today so I guess that's what's heightened the smell thing. Also the reassuring probing of gloved hands trying to find my veins was a comfort when your hurting and scared.
I'm still allowed my beloved black coffee and can no longer taste if they've added sugar or not (I don't take it)
When on oramorph this morning I created myself a guardian angel - needless to say he was made out of food. This is the rambling of opiates so bear with. He is called cornelius carbonara and is made mostly of Italian food. He has a bay leaf wreath in his spaghetti hair. A pizza face with black olive eyes, and prawn nose and red pepper lips. Pepperoni red cheeks. Big baguette arms with calamari bangles. A spun sugar white gown and huge white wings. Chi-chi gold sandals.

When I get out of here I think I might eat him.

Saturday 19 March 2016

The hospital at night

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





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.

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

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).


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!