Category Archives: Tube Feeding

A trip to Edinburgh’s Royal Infirmary

Saturday evening I’m lying on my favourite sofa propped up by a mountains of cushions all set to have a quiet evening with the love of my life.  It’s 8pm and I turn and look at Steve, don’t feel too good, I say.  I can feel my tummy erupting like a volcano, gurgling and burbling .  I slowly ease myself of the sofa and head to the bathroom.  MADE IT JUST IN TIME.  Boy it wasn’t pleasant, I know no-one passes perfume, but the aroma was the stench of the septic tank when the pipe was ran over by the farmer and it leaked into the back field, believe me that day wasn’t pleasant either.  Although it was minus the tummy pain and all that came my way over the coming week.

From 8pm till 10pm the running to the loo got more frequent, yes my lanreotide is half way through, and I get diarrhoea, but it hasn’t been this bad for a long time.  I was exhausted.  I dropped off to sleep.  An hour or so later I woke up, feeling freezing, the pain in my tummy so bad I felt I couldn’t move.  I remember whimpering like a baby, and thinking to myself get a grip woman.  I just couldn’t.  I looked over at Steve.  He said While you were sleeping I had to run to the loo too, we both must have a bug.  I managed to get myself to the bathroom again, it was fleeing out.  oh no, here comes the sickness.  The first thing I could grab was granddaughter, Alexandra’s Potty.  I opened my mouth, no effort; out came the most horrendous vile and obscene volume of brown sickness.  Once it started I could not stop.  I began to sweat.  The next thing I remember Steve picking me up in the hall, all I had on by this time was pants and a cami vest.    Back on the sofa at last.  I felt safe.  I had the potty by my side.  Thank goodness it has a lid.  My head is banging, pain in my stomach, thumping in my chest; palpations like I have never had before.  I drifted back to sleep.

I suddenly wake, Its roughly 2am.  I have this crushing pain in my chest.  Feel like Im going to suffocate.  The pain moves to my shoulder.  To be honest, I don’t know if its two seconds, two minutes or ten minutes later.  All I know is I’ve never had pain like it and its frightening and very very lonely.  I thought I was going to meet my Maker. I lay quiet and let it pass.  My tummy was so sore, fortunately I had a pad on, one less thing to worry about than waking up on the toilet floor and poor Steve trying to deal with that too.

Before I know it its 7am.  I say to Steve, You need to call a Doctor, I really don’t feel well.  Steve called 111, spoke to the advisors, they decided the paramedics needed to come.  The ambulance came quickly.  The paramedics were super.  I can’t remember too much about them, but what I can and what Steve tells me, they were kind, caring, super efficient and very professional.  The one thing I do remember is I felt in so much pain and so sick I couldn’t hold the gas in air to my mouth, the paramedic  gently placed it and held my hand and told me I could press the button to release the gas for pain relief.

 

 

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I believe A & E was busy but with being brought in by ambulance in total agony, having a temperature on 40.9, having low blood sugar, I was very irritable and confused and that was all before routine blood tests,  I got treated and seen right away in immediate care.

For me the day came and went, my voice was Steve.  They took blood.  I had elevated white cell count, elevated neutrophils, high troponin, low potassium, low magnesium, abnormal ECG.  I needed to be admitted to a ward and to a room of my own.   Within minutes of the results the bags of potassium and magnesium were intravenously going into me.  A nice big dose of IV morphine to keep the pain at bay, an intramuscular injection for sickness.  An IV dose of hydrocortisone steroid replacement.  With ECGs every 3 hours.    They got me settled in a bed and ready for transfer to a single room.  Steve drove home for some personal things for me and came back, he is such a support, he goes that extra mile for me all the time; what a star.  He is my shining light.  When I woke up and he wasn’t there what an empty feeling I had inside me, then I just closed my eyes thought about him and once again it felt like we were together.

The staff had a lot to do to get me comfortable, once I was all settled in a bed at the Medical assessment ward, they got me moved to the appropriate ward.  I was moved to ward 207.  Where they were prepared for me, had my single room sorted and its a ward that is used to patients with artificial feeding which is great.  207 is Edinburgh Royal Infirmary’s busiest ward.  I spent one whole week in the ward.  My next blog post will be my weeks experience.

 

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Bye Lavita you have been a lifesaver

Its the start of the weekend I’m in my own home and boy am I glad to be so.  A few weeks ago I was in hospital with yet another infection.   It started of I wasn’t feeling too good, said to my nurse I felt horrid, my tummy began to swell, my temp rose, the leakage that came out of around my peg site increased, the smell began to get really offensive.  My energy became non existent.  I visited my GP, within 2 hours I was in hospital.  Before I knew it connected to IV drip and on IV antibiotics.  I was feeling absolutely awful, could hardly put one foot in front of the other.  The familiar face of SPB came to my bed.  He is the surgeon that put my gastrostomy tube in two years ago.  Lavita has been a lifesaver and fed me on demand.  After blood tests, X-rays, scans and careful discussion with the surgeon and the wonderful dieticians Bev and Marion it was decided it was time to change the tube.

 

 

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Im not going to lie, I was bloody nervous at the thought of getting lavita taken out and another tube put in.  The nurse came to tell me that I was getting my tube changed later that day.  just after lunch I could hear a familiar Irish mans voice outside my bedroom.  A few minutes later the doctor popped his head round the door, remember me Elizabeth? He said.  How could I forget.  He was the doctor that took out my jej extension.  I have faith in him.  My nervousness left me and I felt calm.  How could I forget, I replied.  He changed my gastrostomy tube.  I’m not saying it was plain sailing.   Mainly due to the infection,  I had a lot of tummy pain and there was quite a lot of discharge and blood. There was a lot of tugging and pulling.  The burning gastric acid from my stomach was trickling down my skin, it hurt like hell.  He mopped it up very quickly.  The saliva was running down my gums, yet my lips and mouth felt dry.  We agreed that a larger circumference tube would go in this time, in the hope that there will be less leakage.    We have moved up a size and a half and its fitted perfectly.    I was in hospital for 5 days, and got well looked after, support from dieticians, nursing staff, and doctors fantastic.

Its took me a while to get on my feet since getting out of hospital.    I have been very tired, in fact super exhausted to be exact.    Regular things have taken a back seat and gosh have I missed it all.  In particular not having the granddaughters at the house as often.   A couple of weeks before I went into the hospital our house was full of laughter of two beautiful granddaughter’s.  Our 17 month old princess was running up and down the hall saying Papa Papa, Broom Broom – she is desperate to go sit on her grandfather’s motorcycle.  Grace calls from the kitchen Bella Boo to one of our labs.   The girls are away on a two week holiday at the seaside.  Gosh I miss their visits.

 

 

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Since I have been home, I am getting my regular visits from my nurses.  Getting my tube maintained,  The balloon water changed. My dressings changed.  Working hard on building up the old stamina 🙂

The one important thing that needs to be done next is find a name for my new tube.  Its a balloon gastrostomy that feeds me through a pump directly into my tummy.  Im attached to the feed 20 hours out of 24 every day.  This prevents me having a hypo and helps me maintain my weight.  My wonderful hubby has bought me a lovely new Michael Kors leather backpack to put my pump in, it means I can be attached to my feed, carry it on my back and still be ‘fashionable’ as well as carry other essentials with me.

If you have any suggestion of a name for my new tube, please comment.  All suggestions, comments welcome.

 

A wee bit of home assessment from my nurse

One thing and another its been a busy week.  Started with a visit to the GP on Monday, she is perturbed that despite I’m on my new super duper feeding regime through Lavita, my gastrostomy feed that Marion from the CENT team has carefully worked out for me and I am getting food pumped into me 20 hours per day, I still have an underweight BMI and haven’t gained an ounce.   I’ve got that bloody awful feeling that I need a kick up the ass, I could lie on the floor and curl up in a ball and sleep.  The Doc was also very concerned with the fact that I have difficulty with once of the most important things – getting washed.  Our shower is over the bath, between my poor co-ordination, spontaneous hy0pogleamia, the pain I get and my gastrostomy tube climbing over the bath has caused many accidents: resulting in severe bruising and a hurt pride.  Long and short of my GP visit: bloods taken, my steroid replacements have been increased for the time being, I have to visit her again soon.  We need to get the bathroom sorted.

Its lanreotide week and boy do I know it.  The bowels are flowing more than normal and for the third time the urgency at 3am disturbs my poor sleeping hubby.  Buddy sits quietly at my feet, replacing the lovely warm slippers that I had no time to put on.

 

 

 

Evelyn, one of the nurses comes in on Thursday morning.  The dogs are happy to see her.  They know the routine and watch all that is going on.  She looks at the two of them and says well you will have a wee wait on your ‘doggy mars bar’ today.  Got a lot to get through with your Mummy.  Gastrostomy  site tackled first.  Dressing taken off, all cleaned, the necessary done, new dressing on.  Skin checked and other issues addressed.  Then onto my lovely injection of lanreotide.  It may be a big pain in the butt and cost the NHS a small fortune but it a godsend to me.  My diahrea has reduced from over ten times a day to 3.  And those awful flushes have greatly reduced.  The run up to the injection the symptoms get more problematic but nothing like before I started getting it.  I really wish it had a magic formula and helped with the malabsorption.  Injection in, all sharps in appropriate box etc.

Evelyn takes a pew.  Pulls out a white folder and talks to Steve and I.  Remember last week I asked you some questions and you did well, she said.  That was a base line for us for your mental awareness.  Steve made an off the cuff funny remark and we laughed.  Yes you can only go downhill she said.   No onto some physical questions.  It was all very thorough.  Asking me questions such as can I roll over in bed.  Do I need help with washing and showering.  A great deal of emphasis on my meds, eating, all the personal issues such as my bowel habits, aids I need and use, what I can manage and what I CAN’T.  As always Evelyn was super efficient; making me feel so comfortable and at ease and still managing to get all the appropriate essential information that has to get detailed down.    The nurse is an angel she goes above the call of duty.

It was good Steve was here for all the discussion.  Evelyn already knows how much I rely on him and how difficult things are such as showering, setting up feeds, getting my medication organised – we didn’t need to go into the nitty gritty.

The outcome; I’m an at risk patient.  BMI far too low.  At risk of falls.  Has pain.  Risk of infection.  I dolly daydream into a daze, I furniture walk without realising it.  The one thing I certainly cannot do is get up of the floor on my own. Give me a piece of furniture or better still my devoted strong man – Steve.   I love this man 💕💕

Dedication of my nurse & new dressings

Eleven months ago I switched from nasogastric tube feeding to gastrostomy tube.  After a lengthy stay and several other stays in hospital with complications, sepsis and months of continual leakage.  It is apparent that the surrounding area is never going to totally heal.  The health professionals have tried their best.  I am lucky to have such a dedicated team. We have tried many different creams, ointments and dressings.  My tummy at times resembles an active volcano and erupts a molten lava of gastric fluid leaving my skin red raw, blistered and very sore.  After the trial and error of creams the best one and the one to stay is the cavilon lollipops.  They act as a barrier, and its a wonderful life saver I can tell you.  As for the dressings, well many have been tried and tested.  At one point I looked like I had been shot.  I was covered from my breasts to my waist.  The nurse on the ward thought it best to keep it all sealed.  This didn’t work, after several dressings later, we realised I am allergic to micropore, elastoplast,  dressings, and good old fashioned crepe bandage.  The dressing that worked was the foam dressing.  A hole was cut in the dressing and it was wrapped round my peg.  The only trouble with this is the amount I leak out.  The dressing takes the leakage but after a time it starts to sit on the dressing and then build up on my tummy.

 

 

My nurse, Evelyn, that comes in and changes my dressing at home noticed this.  Evelyn is a dog with a bone.  One day she came in with a booklet and a different dressing.

Do you fancy giving this a go?  She asked me. Can only give it a try was my answer.

So she sat me down and we went through the booklet together, she demonstrated how she was folding the dressing and how she was going to apply  it.    This dressing is designed to absorb the leakage.  And guess what – it does it so well 🙂   I have even noticed a reduction in the odour.  The combination of the barrier and the new dressings, my skin is much improved.   Its far from perfect and it will always leak.  But with the perseverance of Evelyn on the look out for a more suitable dressing life has become more bearable and a tad less painful.  Cant see me  shifting from the Keramax dressings in a hurry.  And as for my nurse well she is a star.

30 Years On……..

Well it’s nearly 2am and I’m wide awake. It’s been a great day.  Today was our 30th wedding anniversary and we are in Boat of Garten, near Aviemore to celebrate.    I can hear two very familiar sounds.  The first is the whiring of my feed pump, the other -rumbling snoring; my hubby, Steve, this gasping pup pup sound coming methodically from him.  I wake up often at this time, giving me the opportunity to reflect on what’s going on in my life.  

I’ve had two lovely nights in Aberdeen with Steve.  We were staying in a lovely hotel, went to a great party to celebrate the 60th birthday of his cousin, Annette and the 30th birthday of her son Lee.  Great seeing the family and spending time with Steve’s aunt Margaret and her children.  Steve’s sister Julie, Nicole and jack are here too.  Lovely quality family time; had a super family meal and went back to cousin Jimmy and Teresa’s for a visit.  Steve and I had some time on own too, the drive through Aberdeen for me set of many childhood memories.  My aunt lived in Aberdeen and we visited often.  As we drove passed Duthie Park my heart leapt and I can remember it as if it was yesterday playing in the hot sun with my mum, granny Baird and auntie Nellie.  I yearn so to take my grandkids there, share my happiest times with them.  The time went so fast over the weekend.  After breakfast we popped in to see auntie Margaret.  She was telling us about manuka doctor honey.  And how it helps health conditions for some people.  She brought the jar through to show us, steve took a photo of it. We have since looked it up and we can purchase it at Holland & Barrett for £28.99 and get a second jar for 1penny.  We are going to give it a try.   For a lady of eighty years of age she is marvellous.  When I was there I had my backpack feed on.  She was open and asked me about it.  I wish there were more people would ask when they really want to know.  I really don’t mind answering the questions.  You tend to find its children and people over the age of 75 that ask.  
  

Our anniversary day was wonderful.  Drive from Aberdeen to boat of Garten was delightful. We drove passed the lecht ski centre, one of my old haunts.  For me so strange to see it covered in Heather rather than snow.  A warm welcome awaited us at our beautiful hotel, we have a garden room, so somewhere to sit out with a pot of tea 😘.  A huge six foot wide bed – could do with that at home.  We literally dropped our bags and drove into Aviemore.  We were booked on the strathspey steam railway for first class afternoon tea.  What a great journey we had.  Our own we private compartment, pot of tea, coffee, and lots of lovely food.  I thought this would be a great treat for Steve, since he is always running about after me, working so hard with his business and rarely gets time just to sit and watch the world go by.  And we both love the idea of the steam train.  An hour an a half of relaxation was wonderful.  I’m sure it did the two of us the world of good.  We had parked the car about a five minute walk from the train.  As we were walking back, I said to Steve I needed to go to the toilet.  We immediately saw a tesco – bingo, that will do,  I was bursting now, thank goodness I had an insurance policy on.  Steve put his hand gently on my shoulder you are too close to the edge of the road he said as a large lorry rumbled passed feeling like it was about to take of my nose.  At last the green man, we could cross.  Yes, they had customer toilets.  Thank,goodness.  Oh the relief. 
  

We came back to the hotel at 5pm for a rest before going downstairs for a wee while at dinner time.  I sat on the decking with a pot of tea, it was was a lovely day and at 5.10pm it was 19 degrees – in Scotland, nearing the end of August that’s pretty good.  Sitting watching the world go by, soaking in the atmosphere, beautiful.  Suddenly a wave washed over me and I could feel a chill to my bones.  The wee voice was saying watch you don’t get overtired now – you have done much more than you are used to.  The tummy started rumbling, get to the loo woman and deal with it.  I said to myself,  it’s your blasted anniversary.  So I did.  A beauty of a major explosion in the bathroom – the sweat running down my back with the pain.   Along with my teatime medication I took extra anti sickness pills.  I lay on the bed for twenty minutes with Steve.  Much better.  

We had a wonderful evening downstairs.  Gosh, not a late night for us though.  We went down at 6.30pm and we were back in our room  at 8.15pm.  Before we came to our room we walked round a beautiful community garden opposite the hotel. Lovely way to finish off the evening.    Back in our lovely room, we had time to relax and planning our Tuesday.    

We have to make sure we get plenty time to do my creams,  dressings, medications and my feed.  Two 500mls on the pump overnight, one or two 500mls during the day depending  and 4 bolus feeds during the day.   Steve is very  organised and methodical when it comes to my medication.  He sorts it all out first thing in the morning, puts it in little pots and transfers if medicine containers if we are going out. 

Looking forward to today.  We are meeting my sister hazel and brother in law alan.  Going up in fenicular railway.  

Dying To Look Good

You look great –  that’s the words we all long to hear.  We all want to look our best.  Whether we are nipping to the supermarket, having a lazy day,  or going out for dinner.  The last thing I want is folk to be surprised that I look normal”

So why is it that there are times when people say certain phrases to me that can set my tummy into turmoil and make me feel guilty for having an illness.  These words are usually said in such an innocent manner and no malice is ever meant.   Sometimes I can get upset by what has been said to me, regardless of how harmless the conversation is.  The person paying the compliment is usually always blameless.

The conversations and body language that are directed to me are intended to be kind and gentle.  A gentle hand stroking my arm and the words that first come out how are you keeping?    One of the ladies in our support network group particularly doesn’t like this phrase.  I have spoken to many people whilst I have been in hospital and yes they are affected by what’s said too.  Certain words affect folks more than others, the word keeping was one that some found hard to deal with.   I’m not quite sure why, as I say it’s always said with such niavity.  Perhaps it’s because the word keeping is associated with custody and criminal.  Many people with with chronic illnesses have life changing situations after their diagnosis and can often feel like a prisoner in their own home and need the help of others.  Maybe this is a possibility why keeping is not liked by this person.  I can’t go out on my own, and I’m very grateful for the help I get, not feeling sorry for myself – promise 😘.

Most of the time words said don’t bother me too much at all.  I can put them in a box and breathe.  What really drives me crazy is the tone that the  conversation is spoken to me in.  The very pitch can affect my mood, and hence a knock on affect on my health.  Most days I will banter and have fun, if something is said in a teasing manner I will take it like water off a ducks back.  However if I’m having a difficult day the slightest thing will reduce me to tears.

So why do we want to look good?  – why not?  I personally want to look like my old self.  I want to be my husband’s wife 💕.   My wonderful staff at Ninewells hospital in Dundee have specially manufactured coloured cream for my skin to put on every day.  The transformation is fantastic.  It covers every blemish, wrinkle, gives me a lovely colour.  And it looks so natural. Once it’s on properly you wouldn’t know I had cream on.   For me it takes a lot of work to look “normal” – I smear my entire body in several creams three times a day.  Steve’s cousin Anna commented on how much work it was and how good the transformation the Dundee cream made – this actually made me feel good that she was so open.

The good thing about the chronic illness.  It’s on the inside.  We can cover it up.  Put on the war paint and put on a smile 😀😀  it’s good to smile, it’s infectious. Smile and the world smiles with you.  When you are all dressed and tried your hardest to look good, whether you are dressed to the nines or in a tracksuit, and have make up on or not.  If I am happy I always look better.  I know I am loved and this certainly makes me happy.    It can be hard to look good for anyone at anytime but I will say my family and friends do make my life much better.

I love to buy and get treated to nice clothes and accessories.  My favourites are Ragamuffin, Fatface, Michael kors, Pandora.  My hubby, Steve is so good to me.  Steve wants to treat me and make me feel good, he is the one that sees me feeling so rubbish at home. And puts up with my grumpy pants sulking moods 😂😂 – for my sake just as well he loves me.

 

So happy to have a week in the sun ☀️☀️☀️☀️😎

The dark scary winter behind us.  Several hospital admissions.  The bulbs poked their heads through the earth and produced some colour.  As Spring emerged  I hoped that my favourite season would be kinder to me than the winter was.  However, the hope of a better spring turned into disappointment.   The sunshine break Steve booked on January 1st was something both of us were yearning.  The thought of the warmer climate, the slow pace of life, friendly locals – it was all felt very appealing.

The waiting was over.  Finally  the big tin bird was waiting on the Tarmac to transport us to our island in the sun.  I was nervous it was the first time flying since Lavita had became part of my life.

I was all very organised, letters from consultant, General Practioner,  and Community Dietician.  All explaining why I carry extra weight, have excess fluids, syringes, needles, scissors, dressings and lots of medication.

The airport was very busy, we all stood queued up, hand luggage in tow, passports in hand.  A steady drum beat like sound echoed through my ears.  The longer I waited the faster and louder the beat got.  Although palpations are an everyday occurrence, the venue was somewhat different to what I’m used to.  I  was next up, as I struggled walking stick in one hand and hand luggage in the other.  The airport staff quickly came to assistance.  They exchanged my stick for one of theirs, just in case I filled mine with illicit drugs, and the burly gentleman lifted my bag onto the belt.  I walked the walk.    Steve and I were both cleared at the same time.  All ready to board the plane.

The flight was grand.  Holiday was fantastic.  There were a couple of hairy moments like the time when I chanced having a handful of peanuts and one decided to try and expel itself out of my wound, a hair breadth from my gastrostomy tube.  As I was breathing it popping in and out, making a grand appearance.  I lay on the double bed, splayed my legs put my feet up on the wall, I got scissors and after several attempts gripped the end and pulled it out as it made its appearance – got it.  Oh yuk, all the granulation softened and started running down my tummy. My hair was soaking wet, legs shaking beads of sweat running down my brow.  Boy did I wish i was home.  I managed to clean myself up, getting a dressing on and rest up.  A few hours later I was feeling much better.

Steve and I made sure we had a relaxing holiday.  We did what we wanted when we wanted.  Steve hired a car and we travelled around the beautiful island soaking in the atmosphere.

Tranquility 😘😘