Introduction to nasogastric tube feeding at home

Into our sitting room walks the friendliest chatty lady.  Armed with a Hessian Tesco shopping bag, not filled with shopping, not bearing gifts of food parcels,   And no lovely sweets to munch.  Instead there were items that were unfamiliar to Steve and me.

Steve and I sat together on the sofa like a couple of school kids niavely watching in anticipation.  Gwen, the nurse specialist methodically explained the whole process.  She was very thorough and hands on.  Carefully telling us how to set up the pump, what tube to use, checking the ph level, flushing the feed tube.   After an hour or so of first time training Gwen left.  She gave us an abundance of literature to read through.  We both felt fairly confident in using the pump and setting up the feed.

Thursday morning came.  Steve and I arrived at the hospital early.  Time for a hot chocolate and malt loaf at the hospital cafe.  We toddled up to the ward.  Lovely nurse Stacey was waiting for us.  She took us to a designated room.  She came in with a loaded trolley. Amongst other things on it was the tube  and a cup of water with a straw.    I asked how I should sit on the large comfortable chair.  The nurse was very reassuring and said I was to sit in whatever way I wanted and she would work round me.  I got comfortable the nurse measured the length of the tube against me and then was instructed to rest my chin on my chest.

The procedure was just about to begin.  She lubricated the tube and then inserted it into my right nostril.  I’m not going to lie, I felt nervous.  As the tube was pushed in I felt this pain up my nose.  It was as if a bee had stung me.  I remember saying oh that feels awful, rather sore up my nose.  Simultaneously the nurse said we are in the back of your throat and ready for you to take a sip of water.  As I drank from the straw the tube was fed down.  I knew co-operating would make swallowing the tube much less painful and it would all get done a lot quicker.   Voila – it had now entered my stomach.  Carefully the nurse secured the tube to my face.  A large plaster covering 90% of my nose and a transparent dressing on my right cheek. Now to check the placement – the nurse put the syringe on the end of the tube and started to draw some contents from my tummy.  Nothing.  Oh !  Of we went to X-ray to check where the tube had gone.  Had to make sure it had gone into my stomach and not entered a lung.   The guide wire had to be left in.  This would give an accurate image on the X-ray.  The great thing with modern technology is by the time we were back at the ward the doctor had seen the X-ray on the computer in the ward.  Great news it was in the right place.  Steve got me some orange juice, I drank it.  Fingers crossed we would get some contents now to check the ph level.  As the nurse drew up the syringe some of the orange juice I had just drank was now in it.  Carefully she squirted some fluid onto one of the strips.  Waited for it to change colour then compared it to the chart.  Ph level 4.  Perfect.

My dietician came to the ward to see us.  We had a frank discussion.  She explained all about building up my tube feed.  Gave us lots of good literature, together with do’s and don’t’s.  Also very useful telephone numbers just in case I need help.

I had a constant pressure in the back of my throat and my nose was really hurting by this time.  I was reassured this was all normal and would ease.  We left the hospital and headed home.

The next morning the district nurse arrived, basically to check in on me and give me support, change face dressing.  The plaster on my nose was stuck firmly.  With a bit of gentle tugging and pulling she got the plaster of and checked the measurement.  Good news the tube has not moved.

For the first few days I have to feed through the tube for 10 hours during the day.  Gradually building up the speed of the pump, allowing me to get more feed each time.  The feed is peptamen.  It’s partly digested and appears to be the best formula for my tummy.

Four days later and all is going better than I hoped.  My body is tolerating the formula.  I can confidently set up and use the pump, draw fluid from my tummy and check ph level, and can flush my tube.

My nose is still uncomfortable and my throat is now much less sore than it was even yesterday.   It wasn’t the easiest procedure I’ve had.   However a combination of keeping calm, a good clinician and having my hubby was my biggest asset.
  

Discussion on tube feeding

Over the last year I have struggled maintaining my weight and keeping up my blood sugar levels.  Despite waking up from sleep throughout the night to eat as well as eating as much as possible throughout the day on top of taking extra supplements in the form of the delightful fortisip and ensure drinks.  Getting as many as 7 down my neck a day.   My hubby tells friends I’ve got every woman’s dream – I can eat what I want and never put on a pound or an inch on my waist line.  The truth is he knows how much I struggle and the difficulty I face everyday.  The old saying what goes in has to come out; in my body it’s accelerated.  The food is no sooner in and either up it comes or within hours my bowels are moving.  The loose movements leave me exhausted and drained.  Hubby, Steve, said the other day ‘all your energy leaves you from your backside’ – this summary is spot on.  

Steve comes with me to my consultations.  We all agree- how things are going can’t go in like this…… I’m exhausted; especially with waking up through the night. But if I don’t eat through the night I will have a hypo.    Mealtimes are a chore.   Fitting a tube feed and giving me some food when I’m sleeping looks like the best solution.  Initially it’s discussed that I get a peg feed fitted.  The tube feed will be in my tummy and unless I told anyone or had no clothes on, no one would no I had it fitted.  I could hook up through the night, get valued nutrients and get some sleep.   We get an appointment to see the nutrician specialist consultant.  In Steve and I go, to be greeted by a team of four.  They were very informative.  The consultant starts by explaining about the peg.  Then he tells us why it’s not such a good idea to go ahead immediately.  He explains, inserting the tube into my tummy could hit a tumour and make things worse.  And even if he get the device fitted without colliding with any tumour, the foreign objects in my body could cause problems, it could accelerate growth or encourage new growth on or near the tube.  Steve stopped him and said that’s lots of negatives…… 

The team do think I need to give tube feeding a try to see if I have any improvement in quality of life.  So we are going to try a ng tube for a month.  One of the team will come to our home and train us on how to use the pump, all about the tubes, feeds, etc.  then in the next couple of weeks I will go to the ward and get a tube fitted.  This means I will have a tube up my nose – the thing I’m not looking forward to is getting the tube fed up my nose and it going down the back of my throat.  Hopefully once it’s up and running I will have a bit more control over my blood sugar levels and I will get a more peaceful sleep.  It’s worth a try. 
   
 

Is The NET Natter support groups right for me?

Socialising

The Ann Edgar Charitable Trust (aect) charity offers a support network to people with nets, carcinoid syndrome and their families and friends in Scotland.  The charity works independently as well as working in association with UK charity – Net Patient Foundation.

As part of the support services.  Folk affected by nets & carcinoid syndrome get together – informally and socially.  We chat, share experiences and very often laugh loudly.  Gives a chance to air our views, meet new people and strike up friendships.

Yesterday was my hubby’s 49th birthday.  There was a meeting arranged for the same day.  I asked Steve if he wanted to go to meeting or give it a miss since it was his birthday.  Not everyone’s idea of a perfect birthday night – spending time with people talking about injections, bowel habits, surgery etc.  Steve being Steve wanted us to go.   So we went out for dinner one our own and then headed to meet the others.

When we arrived at the pub the others were sitting at a large table in the bustling pub blethering away.  As usual a warm hello from everyone.  The pub setting is and ideal location.  Far away from hospitals; this non clinical setting Allows you to drop your guard and open up.  You find yourself sharing and telling of what has gone on since we last met up.  While friends and family can be a lifeline offering support and help sometimes I find myself halting and not actually saying how I really feel or how things have been.   The group has a very relaxed atmosphere and when you share an experience you do know others know how it really is.  Nothing helps better to lift the weight when someone says to you, yes I understand or I know how you feel.

Last night was the first meeting since Anne passed away.  I was feeling apprehensive.  It was anne that would tuck a label in whenever it was showing, grab my cheek softly with her index finger and thumb and ask how I am. Anne was such a loving friendly  lady who had time for everyone.  Her smile, kind words and sense of humour is what I will miss most.

Five minutes in and the knot in my tummy had subsided.  Sitting on the table was a large cake box.  Barbara, one of the members had baked a cake for Steve’s birthday.  Everyone was chatting away, talking about all sorts.  While we do share health experiences, we do actually talk about our everyday lives, our families, etc.  as well as football, golf, TV, holidays, and much more.  We had a newbie and her husband last night.  I’m sure she got a lot out of it and will be back.

An hour and a half in and we all shared Steve’s cake.  Barbara is a wonderful baker and the cake was delicious.  Conversations were flowing and everyone appeared to be relaxed and at ease in chatting.  The great benefit of the group is there is no cliquieness.  I’m sure even though it was a first social meeting for two of the people there they felt welcome with no awkwardness and able to talk freely.  As a group there are never hard and fast rules.    There is no fixed agenda or timings. You can stay for as long as you want or have the time.  No one would take offence if you came for half an hour and left or if you stayed for the duration of the evening.

We arrived at the pub at 7.40pm and left at 10.30pm.  On the way home in the car, Steve and I chatted about our personal feelings of the evening.  The half hour journey home flew in :  probably due to the pair of us nattering.  Usually I am tucked up in bed by this time.  I guess going out and meeting the others had me wrapped up in conversation and even gave me positive energy.

To think I was sceptical of going to meetings.  Worried they would be unwelcoming and regimental with rules and a set schedule.  I shouldn’t have been doubtful in the least.   I’m looking forward to our next hook up.

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Third day in my pjs and my faithful labradors

 

Buddy and Bella              Buddy helps with fortisips

 

Thursday afternoon, was feeling very very tired.  To that point that you feel your legs just can’t carry you.  Teatime – dire need to put my pyjamas on.   The whole afternoon I slept on the sofa, with the exception of the times my Labrador, Buddy, would wake me.  He would look at me and if he could speak he would say mother just try something to eat or drink a fortisip.

Buddy is a wonderful golden Labrador.  He follows me around everywhere I go.  Sits patiently in the bathroom, always at my feet or by my side when I’m sitting down.  Accompanies me to kitchen, stands and looks at the fridge – I know he is wondering if perhaps he can have something to eat.  When I’m in

bed, his duvet bed is in our bedroom.  I’m up at night – Buddy is up at night.  He carries clothes through to the washing machine.  Most importantly he knows when my blood sugars are dropping too low.  I can be in a sound sleep, I will suddenly feel a paw on my shoulder; tap tap.  I open my eyes to see his big square head looking over me.    On checking my blood sugar levels after buddy has woken me – they are always around the 2.5 mark.  He has an instinct that i need to drink one of my fortisip Drinks.

As well as Buddy we have Bella, she is also a golden lab, 2 years younger than Buddy.  She doesn’t quite keep as close as Buddy.  However, if I am home alone.  Or on a sofa on my own, I will have a Labrador on either side of me.  Bella is protective of me, keeps her ears open for anything out of the ordinary happening.  Bella is just as faithful, and is learning the household duties and definetly likes to carry things for you.  The softness of the labs mouth, they will carry something for you for a considerable time or distance and will not damage or mark it.  however she is a Daddy’s girl and knows what side her bread is buttered on – she very much looks forward to Steve’s cuddles, playing football, letting them run free outside with him.

Friday, I was violently sick.  While shouting hughie down the loo I had both Labradors in the family bathroom with me.  I was sweating and Bella was gently licking my feet, I know to many that sounds yuk, but for me it was comforting and when your heart is pounding in your ears it’s good to know someone or something is looking out for you.   Buddy takes charge and sits upright by my side as I grip the pan.  If he could hold my hand he would.  At last I’m sure nothing more can come out.  After composing myself to get back to the sofa, we three walk along the long hallway together.  Bella taking the lead and Buddy walking by my side.  Bella only one step ahead, normally she would run along the hallway.  This day she walks slowly at my pace.  Her ears pinned back listening to my every move.  I get to the sofa, fall asleep and wake up an hour or so later:  both dogs faithfully down at my feet.

Saturday felt like a nothing day.  Disappeared so quickly.

Sunday – today.  The first day I feel up to making a cuppa.  Brian and Margaret popped in for a visit.  I’m not very good with visitors when I’m feeling rubbish, but there are some people that you don’t mind calling on you at any time.  My brother Brian and sister in law Margaret are in that class.  They don’t mind if they don’t get a cuppa, or the dogs hairs need vacuumed.  And I don’t mind what I’m like when they come.  They want to visit regardless – which is lovely.  They brought me a beautiful present.  A zebra picture.  I love it.  Buddy loved the cuddles from Margaret too 🙂

I thought I would bath and get some slacks and a t shirt on.  Alas, it’s 4.45pm – I’m washed and in fresh pyjamas.  My labs don’t mind as long as they get a hug. It’s a slow evening snuggled up on the sofa.  And I think after the busy week my hubby has had he is benefiting from chilling on the couch.

 

Too much ‘happy clappy’ chemicals

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One of the tests to confirm carcinoid syndrome is a 24 hour urine collection.  The test is called 5hiaa.  the level of serotonin excreted into the urine is measured.  From day one my levels have always been elevated.  As my doctor would say results are on the high side.  Serotonin is a feel good chemical.  A doctor was once described it to me as your happy clappy chemicals are very high.  I believe this is why I do not get down in the mouth and my glass is half full and not half empty.  I try my best to keep upbeat and positive.  With a wonderful husband and beautiful family such as mine it makes wanting to be happy relatively easy.

The test is simple enough and can be done at home.  As long as you remember to pee in a urine pot and then pour it in the designated container.  The container has acid in it the last thing you want to do is put your ****** over the containers and have the acid vapours direct themselves at you – most of us have enough problems without adding to them.  My main issue is trying to pee and not poo at the same time.    As well as reducing the flushing the lanreotide injection has cut down the diahrea from 9 times a day to  loose bowels 3 or 4 times per day.  I’ve perfected a stance that allows me just to collect the urine.  I certainly wouldn’t win any prizes for looking cool but it gets the job done 🙂

I start my next 24 hour collection for 5hiaa in 7 hours time.  I’ve been practising my pee positioning all week.

Some happy news

This week was a tiring mixed emotional one.  My hospital admission.  Death of a friend.  Body and brain in overdrive.

Sunday brought happiness and celebration.   Our youngest son, Stuart, arrived at the house on Sunday lunchtime with Christine and Grace.  After the usual blethering and noise for the first five minutes.  Stuart announces he asked Christine to marry him and she said yes.  As parents Steve and I are so pleased that things are going on the right track for the youngsters.   We always worry about our children and I think more so the older they get.  There is something frightening for a parent when a child reaches that independent age and starts heading off in their own direction.  Our philosophy is not to interfere or tell them what to do.  We would rather support our boys and let them know they are loved and we are there for them 24 hours a day.  I can still hear my mother say I worry more about you now you are an adult than when you were in nappies; my boys are 25 & 27 and I can definitely relate to this comment.

 

Stuart, Christine & Grace     Stuart, Christine & Grace

 

Too close for comfort

Home from my stay in hospital.  Sitting with my feet up, Steve’s making us coffee and I’m sneaking a look online.  Checked through my emails and see a reminder of our next social meeting at the pub in Edinburgh.  When my consultant gave me the card for the charity I wasn’t too sure.  But after meeting folk in the same boat and getting to know each other, I get a lot out of our Nets Scotland – Anne Edgar charitable trust  social gatherings.    We chat together, share experiences, laugh and generally support one another.  I check the date of our next meet up, it’s Steve’s birthday. We will go for a wee while and I will get Steve a cake.  Thinking of meeting up – I was looking forward to seeing everyone.

Later that night I get news that knocks me for six.  One of the members of Anne Edgar Charitable Trust – Net charity has passed away.  Damn it – she was one of my favourites too.  A genuine person.  Caring with a sunny nature.   She was diagnosed with carcinoid syndrome just over 5 years ago.

I am upset at the news of her death.  I will miss the emails we send each other from time to time.  We will all notice her absence at the next social gathering.   Most of all I will miss her smile and comforting words.

I feel fortunate that our paths crossed and am grateful for her coming into my life.  She was truly an amazing lady.  My heartfelt condolences go out to her family.

A wee visit to Ninewells

Well it was that time again.  Bed and breakfast for a few days in hospital under the good care of dermatology at Ninewells hospital, Dundee. This is my fourth visit to the team at photobiology.   One of the knock on effects of the carcinoid syndrome is photo sensitivity, problems with my skin, niacin deficiency, vitamin d deficiency.    

For some folk going into hospital can be daunting enough, put the distance of 100 miles from home and some unknown testing to be done in the mix and it would make one feel a tad nervous.    However, I can assure anyone that may ever need to go to photobiology at Ninewells.  There is no need to fret.  The staff are brilliant.  This visit Steve and I were just going into WH Smith on the hospital concourse for a browse when a familiar figure walks up to me and asks how I am,  it’s  Dr Sally Ibbitson – she is one of the head consultants in the photobiology unit.  The beautiful kind lady spoke genuinely and took time out of her time to talk.  On going up to the ward – the staff made me very welcome, cup of tea as soon as I arrived together with some digestive biscuits.   The nurses I met previously with asked how i was, the family, dogs, etc.  all this is important to us beings that get admitted into wards.  It’s so lovely to be treated as YOU and for some of your stay not be referred to as ‘the patient with marked & torn skin’ or ‘the patient that’s photosensitive’   Don’t get me wrong there is total professionalism at all times.  

The staff here are used to my hypos.  Understand – or at least try their best to understand my malabsorption, low blood sugar levels, etc.  They feed me up.  Give me extra meals, it’s not one bowl of cereal – it’s two and some toast and tea 🙂 

On my visit this type the porters were on strike.  How was I to get from the ward to the photobiology unit?    Easy:  a willing nurse from the ward wheeled me down.  On arriving at photobiology I was met by familiar face – Gordon.  He sat with me till the doctors arrived.  After my consultation it was decided what would be done this time.  Through to the testing/treatment area.  They have had some funding and there are new curtains, TVs and its freshly painted.  Some patients will want to take their minds of what’s happening and watch some TV.  The choice of what to watch is each individual patient.  Jeremy Kyle, children’s TV, news channel – whatever floats your boat.  I prefer tv off and talk to the staff.  But then everyone that knows me will know I can talk a gramma phone to scrap.   I change into the gown and then sit in the special chair.  My opinion hasn’t changed and no matter how good the staff are, how pleasant the surroundings are – to me the chair resembles an electric chair.  No matter how hot it is in the hospital the chair feels so cold to touch.  Sit in it and get fried.  I get many different things done.   one particular provocation test does fry me.  Most folk get a setting at over 20 joules and have it glaring on their skin for 15 minutes.  For me I get a tiny patch on my wrist worked on.  Andrea wraps my arm with special blanket.  Cuts a dressing and applies it to my arm, exposing a very small square of skin. The large Perspex sheeting is put on top.  The timer is then set – I only get 5  joules for 3 minutes.   At the end of the provocation test my skin is hot and red.  At the 5 hour check over, my wrist is swollen, the skin is very hot and broken.  There has been a reaction on my back this time – the skin is tingling and feels uncomfortable.  It’s fairly hot and the broken skin is becoming irritable – I feel I could scratch.  It was hoped that the increase in nicotinamide medications I have been prescribed helps with the problems I have.  

The conclusion on the last day is – stay on all the same medications.  Wash in oilatum gel.  Then cover my skin in diprobase.  Then apply sun sense ultra factor 50 over my complete body.  Then mix the two coloured dundee creams together.  My colours are beige and coral pink.  When they are mixed together they produce a colour very similar to my natural skin tone.  I then apply the dundee cream to my skin.   I’ve to get some blood tests to check the usual routine stuff and check my vit d level.  Dr Ibittson says it would be a good idea for me to get regular light treatment – 3 times per week – start in the winter.  

It’s never ideal being in hospital, however places like Ninewells and staff like they have makes a stay much easier……..I’ve met some nice people whilst I’ve been in hospital too. 🙂

Worth breaking the rules

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For the last five years my health has dictated holidays – breaks away abroad had been a thing of the past.  Postcards and tales from family and friends seemed to be the closest we were getting to foreign lands.  Anytime we thought about going away we hit stumbling blocks.  Our general rule is usually stay in UK, go somewhere proven.

  • do I feel up to going away
  • fitting timings in with lanreotide injection every 21 days
  • is it all really worth it
  • takings unusual meds on the trip
  • holiday insurance????
  • the weight of my fortisip drinks
  • carrying tubs of creams, factor 50 sun cream, etc

Im not the easiest person to be with at the best of time.  The spontaneous hypoglycaemia attacks when you least expect it.  Those who know me know I blether a load of rubbish at the best ofdden drop in blood sugar can turn me into a raving lunatic.  This tends to make my hubby slightly nervous, after the episode of us in the centre of Edinburgh and I just sat down in a crowded street – I could go no further and needed some supplies.  I’m sure Steve says in his sleep – “eat something” or “here is ….. Get it down you”. By the way this happens very often. I get grumpier than normal when my tummy aches.  one of the biggest challenges is the thought of leaving home and not knowing where the nearest bathroom is.  We have all had diahrea or loose movements at some time – but when this is an everyday occurrence a great deal of thought goes into leaving the security of your home and the comfort of ones own loo.

This is my 49th year on earth and have been married to Steve for 29 of them.  I want to do cheery happy things with my hubby.  Sitting one evening I thought I’ve had enough of pussy footing around.  I want us to go on a holiday abroad – go somewhere no-one knows us, take in sights and most importantly spend quality time together.   So we struck while the iron was hot and booked 7 days in Ibiza.  Was this too ambitious – a sunny island and me being photosensitive.  Get a grip woman I said to myself – put on plenty of your cream snd smother the factor 50 on.

The month before we were booked to go I was in hospital with pneumonia.  The thought of the trip we had planned together gave me strength and stamina to push myself.  Every breath, step was an effort.  Combination of IV antibiotics, steroids and sheer want to go helped me on the right road.

We got to Ibiza last week and spent 7 days there.  It wasn’t always problem free but having my soulmate with me made everything easier.

  • was it worth it? – most definitely YES
  • it wasn’t always easy
  • some of the hilly streets were a tad ambitious & challenging
  • was I tired? – exhausted – still am
  • would we go back – in a heartbeat

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Hello world!

Hi, I’m Elizabeth.  This is my very first blog.  For some bizarre reason I feel the need to share some stories.  Perhaps some of you readers can identify with this feeling.  Ever since I lost weight, got admitted to hospital, many many tests and hey presto carcinoid syndrome was diagnosed.  I have not talked outright to many people about how I feel or infact haven’t really spoken to many people about my health openly.   I give my poor long suffering hubby grief for even mentioning me to anyone.  I won’t go into details of the knock on effects with my health – leave that for later.

Happy to get up the castle
Happy to get up the castle

This is me with my hubby, Steve.

This blog will be frank; if you don’t like hospital talk or bowel habit information I won’t be offended if you skip the odd paragraph.  It won’t be full of doom and gloom there will be fun bits in and hopefully an easy read.

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