3 years later and 3 kg lighter

Three years since I have came home from hospital with my peg feed after my sepsis.  It has been a learning curve of a journey with great deal of highs and lows.  I’m very fortunate to have a fantastic support network; the lifesaving NHS staff, including hospital consultants/nurses/dieticians, GP surgery, home visit team, CENT team and my excellent regular community visits I could not do without from my district nurses; amongst other things they deal with my dressings, peg feed and administer my lanreotide, the emotional support they offer is invaluable.

One of the members of the CENT team comes to see me on a regular basis.  I get weighed, we discuss how life has been for me.  How I have been , what meds I’m on and what feeds are going down my peg.  They are always on the end of the phone if I feel the need to talk in between visits or if I have a question/queerie/worry.  A great friendly bunch.

 

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Kat from the CENT team at Edinburgh’s Royal Infirmary came to see me on Monday.  We had a good chat and discussed my feeding regime and the speed of the pump.  I told her the great news that we managed a wee break to Ibiza.  My son Stuart telephoned the airline and told them about my medical condition and that I needed the pump feed and 4 bottles of 500ml per day and 5 bottles of 300mls per day – working out to quite a weight.   The airline agreed to give me free 30 kg baggage there and back.  Certainly cannot complain about that.  After our general discussions I stood on the scales.  Not happy; either of us.  I’m 3kg lighter than when I came home with the peg feed fitted 3 years ago.  I could have cried.  I could tell Kat knew I was disappointed, I couldn’t hide it.  Kat mentioned how well the tpn worked when I was in hospital.   I agreed, that was what saved me and put on the weight when I had my sepsis.  She recommends that she writes to my consultant and let him know and suggest that I get a central line – picc or hickman and get home tpn as well as my peg.   Got my cardiologist in December and see my consultant after the year; will discuss this weightloss and eating regime then.

 

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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.

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 😘😘

 


 

 

 

Naming – What do you think?

I have had many suggestions for the name of my gastrostomy tube.  I’m so grateful to everyone for all the effort that has been out in.

A fellow blogger, Elaine, has gave me a name that I’m rather struck on.  The name Lavita, which means life.  Rather apt.  For me the tube gives me a better quality of life (when I don’t have sepsis, or any other infection that is).  It provides me with my essential nutrients and vitamins – my daily steak and chips or fresh fruit salad if you get my meaning.  For many people with a tube it is an essential lifeline and the only source of nourishment.

The name I have chosen is Lavita.

 

Lavita meaning life.

Suggestions and comments welcome 💕💕



We have some suggestions

Further to my post yesterday asking for help to name my gastrostomy tube.

I’ve had some suggestions.

Names suggested for my tube so far:

Lucy

Oscar

Mr mouth

Miss persnickety

Sir foible

Madame violet

Lady lightsaber

Little Lizzy

Richard

Percy pipe

Gastro Gordon (after chef Gordon Ramsay)

Garfield

Sybill

Gourmet Gastro

Gastro Gourmet

Cordon Bleu

Gordon Bleu

Hercules

Any further suggestions?  What do you think of the names?  Which one would you choose?  Looking forward to comments, suggestions and shares.  Have a great day guys.

💕💕

Help! My gastrostomy tube still has no name

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With all the hospital admissions since my gastrostomy insertion.  I have neglected to do something rather important.  Name my tube.  This is a task I would normally have done almost immediately after getting in in.

So I’m asking for HELP –  I’m looking for ideas for a name for my gastrostomy tube – you know my feeding tube that goes into my stomach.  All name ideas greatly appreciated.  I will collate the names and then make a decision.

 

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My tube is essential to me.  It’s became part of me now.  And the the routine we go through has became the new normal. For me the tube is so very useful, it feeds me my special formulated feed through the pump 10 hours through the night, for 8 hours of that I’m in my bed, I’m pump fed 3/4 hours in the morning and 3/4 hours in the afternoon.  I also bolus feed through a syringe.    My feed provides me all my essential nutrients and vitamins, as well as calories and energy.  Both pump and bolus feeding help with my malabsorption and gaining weight.  If my gastrostomy tube was a human being on the benefit side it would be a generous provider.

There can be a downside.  It appears to have a mind of its own.  It leaks at time.  I get infections, which at times gave caused me horrific pain, hospitalised me and I’ve needed IV antibiotics.  The tube needs to be kept clean.  Disposable parts need changed.  If it were a human being perhaps I would say it was high maintenance.

Please feel free to comment and suggest a name.  I’m so looking forward to NOT calling it tube.  Can’t wait to read your thoughts.

 A Further Eight Days In Hospital :  December 4th 2015 to December 11th 2015

We arrived at Edinburgh’s Western General hospital. I only sat down in the waiting reception for a couple of minutes and a nurse came with a chariot to take me to a bed and get me clarked in.  One of the consultants gave me a thorough going over.  Well the question is, how long are we keeping you?  She asks.  Steve prompts a reply well anything less that five weeks is a bonus, but it would be a preference to have her home for Christmas to share a Brussel sprout or two 😀 The consultant broke into a smile and said. No promises but be will do our best.  Within an hour and a half I had been booked in,  blood taken , urine sample given, cannula inserted, porter called and I was now getting wheeled along to the ward.

I get into the ward of four, the nurse helps me out of the wheelchair, and assists me into the bed.  She points out where the toilet and shower room is.  After explaining everything to me, she placed the buzzer close to me and said if you need anything press the orange button, and we will come to you.   I thanked her.  Steve put my things in my locker, spoke to the nurses, and then came back to see me, gave me a kiss and hug and headed off home – for Steve it had been a long day.    I looked round the room.  In the bed opposite the lady was sound asleep propped up with several pillows,  the bed next to her, the lady was awake, hello I’m Jess she calls over to me.  The bed next to me has an elderly lady who informs me she is going home in the morning.  She seems so happy about it.   All in all three elderly ladies, a quiet room, an exhausted me, hopefully I will get a sleep.

I did sleep, the staff were brilliant and the room mates friendly.  The lady went home and we got a new patient.  Jess and I talked away like a couple of school kids,  we laughed and joked and had so much in common – I’m 49 and Jess is 87 years of age.  Anne the lady opposite me was very deaf. It made conversation difficult.  My consultant came to see me and it was decided no food was to be taken orally, the only fluid was when I was taking my medication.  And it was to be minimal water when taking meds.    The lack of oral fluid takes a wee bit of getting used to.  Your mouth feels perched.  Your lips press together tight.  The nurses are very kind and supply you with endless nice cubes and foam lollies, you can clean, rub your mouth and or throat.  It really does help.  Mouth wash helps too.  The dietician came too and the plan was to continue feeding through the pej at 100 mls per hour for 20 hours out of every 24 hours.

Consultant visited next day – we chatted.  Talked about how we thought the hole may seal up. I told her about us watching supervet, the honey helping the cat.  My dedicated husband digging out honey out of the cupboard and unfortunately how unlike the cats jaw repaired fairly quickly my tummy was sticky and clothes sticking to me.  She looked at me and said Elizabeth what were you doing with the honey?   I laughed I explained Steve spread it on a half slice of toast and it leaked out as soon as it was in.  Thank goodness for that she said.  I guess she watched supervet.  He actually rubbed the honey on the cats wound.  I think she had visions of us rubbing the honey on my tummy – no such luck – ha ha ❤️

The nurse came to do my flush on my pej.  Oh boy was it difficult to flush.  It actually took 15 minutes to get 50mls of sterile water though the syringe.  The tube is so fine.  Attached to my tummy is my pej and then my feeding pump.  When I get my 4 hours of, this is when I want to shower.  I am still attached to the dextrose drip – for the fear of having a hypo on their watch.  But after being on TPN ive mastered being able to shower with such gadgets.   Once the flush is done. I prepare myself for my expedition.  The walk to the toilet is still a difficult one – I do it in a couple of trips, trot along carrying two towels and using the drip stand as an aid – made the first trip to the shower room.  Now I will head back and get my clean pjs and toilet bag.  As I turn round, the nurse is standing there with my things.  Don’t you try and do all that on your own, we are always here to help , she said.  Got to admit I was so glad she brought them.  Now are you going to be ok?  the nurse asked.  I nodded.  I put down my clean pjs on the chair, and started taking what I needed out of the toilet bag.  I did the needful, managed somehow to get my clean pjs on.  As I was about to put my socks on I could feel the beads of sweat running down my back, I eased myself up from the chair, and decided to walk back to the bed as I was.  I really needed to lie down.  As I was walking over to my bed the nurse came and took my toiletries from me, put them on my locker and then quickly walked back and took my arm,  my you are very flushed she said.  Oh it’s the heat of the shower, I just need to lie down a minute.  I said.  She walked me back to my bed, helped me back into bed.  I was so grateful.  That shower had just sapped me of all the energy I had conserved in my body.   Half an hours rest and then it was time to get my feed back up and running.

A young man walks into our room, now ladies who would like to put a request on the hospital radio tonight.  I’ve been in hospital many many times – in fact I wouldn’t like to think how many hospital admissions I’ve had, and I personally have never listened to hospital radio.  Due to Anne’s deafness she didn’t take part, however the rest of us all requested  something.  His parting words were have a go at our competitions.  Makes the evening fun.

Teatime came – the three ladies had their meal .  I stayed attached to my feed.  My body must be fed – my tummy doesn’t even rumble.  They had fruit crumble for pudding  – one of my favourites.  It must have sent messages to my brain and got my gastric juices working overtime; when it was time fir a dressing change my tummy had been excreting gastric juices that resembled PVA glue – just the kind that it makes up on its own.  My brain must have been saying to the belly ha ha doesn’t this food look good, smell lovely.  That old saying my belly thought my throat had been cut but instead of rumbling grumbling noises I get leaking discharge.  Then visiting – which I always enjoy when my hubby comes in to see me.  I get a chance to see how he is, and catch up with the outside world.  Visiting finished at 8pm.

8pm was the time the radio show started.   The three of us put our headphones on.  The music played, the dj chatted – we bletherered over it.  Competition Time.  It was a mystery voice, we listened, the lady, Avril,  in the next bed said its Chris Evans.  I shouted out the telephone number to her, she dialled it in her phone, hey presto its ringing she says. Oh my goodness I’ve won. She says, i have never  won anything in my life. That boost fair cheered us up.  We listen some more and sing along , the DJ tells us another competition is coming up shortly:  this time sport.   The question is how many people watched the Fifa World Cup world wide in 2006.  There are three options. I’ve heard this question before.  I know I have, the answer 26.29 billion jumped out at me.  I shouted out the answer.  Jess said phone.   I picked up my mobile and dialed the hospital radio number.   Engaged tone.  Try again.  Jess shouts over.  I try –  beep beep:  rather than a melodic ringtone.   The music stops on the radio, that’s it, the dj will announce a winner I’ve resigned myself to defeat.  The dj’s cheery voice makes you smile, he introduces a chap called Gary on the line.  Gary is calling from The Edinburgh Royal Infirmary.  He is asking for a request.  The DJ then mentions the completion.   Oh I’m no good with mystery voices.   He says.  It’s ok Gary, Avril won that competition, we are onto a new one.  He asks the question again.   I’m not sure  says Gary,  but at least I can just guess A, B or C.  At this stage I’ve got steam coming out of my ears.  My competitive streak wanted him to get it wrong so I could phone in.  He answers.  Oh sorry Gary, that’s the wrong answer.    Both ladies and the nurse that was in our room at the time cheer.   I phone again. It’s still engaged, I look up, both ladies in chorus –  keep trying.   So I do.  Finally it’s ringing.   He asks me the question.  And yes I get it right.   Competition winners receive borders biscuits.  My reward was different and I was pleased with what I won.  A mug and a key ring.


All that excitement had tired me out.  It was 10pm.  Time for the late night drug round.  The nurse came round and did all our meds.  The other nurse did our obs and then it was time for my next feed.  The familiar beeping of the pump to let me know the feed was finished and time to change.  The nurse came to detach the finished feed bottle, flush the tube, check the peg site and then restart a new feed for overnight feeding.   The nurse came armed with a syringe, and sterilised water.  She drew up water in the syringe.  Carefully attached it to the appropriate part of the peg and pushed to get water into the tube.  We looked at each other. The syringe was locked tight.  It wasn’t budging a cm.  she tried to push harder.  Nothing.  Her face was rosy pink.  This isn’t budging.  Does it ever get like this.?   She asked me if it often gets like this.  I answered with  its frequently difficult to push but never as hard as this and I’ve never not been able to put water through the tube.   The extension is a very fine tube and much longer than the original gastrostomy.    I think I need some help here.   She said.  We abondoned the feed.  She paged the on call doctor, since it was now 11.50pm.  The duty doctor came.  It wasn’t budging for them either.  A decision was made for the night.  A dextrose drip would go up to maintain my blood sugar levels and a GI consultant would come see me first thing in the morning to do something with the blocked tube.  And overnight the nurse would regularly check my blood sugar levels with the finger pricker to make sure the drip is doing its job.   It did.  

8.30am – the GI consultant was standing at the bottom of my bed.  Well trouble what are we going to do with you now    He said in his thick Irish accent.  I grinned at him and replied unblock this tube if you know what’s good for you!   He drew the curtains round the bed.  Then got the syringe and attached it to the tube.  He wiggled and pumped back and forth.  Nothing.  He detached the syringe.  He then pulled the tube slightly back, I could feel a strange feeling in the pit of my stomach.  Oh that’s a tad sore  I say.  Yes you’ve gone a whiter shade of pale was his reply.  Just bare with me, please,  ive got a plan he continues to say.  So I lie there and wait in hope.   He pours sterile water into a beaker then draws it up in the syringe. He attempts to push some into the tube, it’s still not moving. He uses the push pull method once again and then all of a sudden WHOOSH!!!! Me and my bed are wet. Water and gastric contents on pjs, face, hair, and bed linen.  The doctor tries to apologise.  While laughing I’m thanking him for unblocking the tube.  Im so relieved.  And much more comfortable.   The nurse joins us and starts cleaning me up.  The doctor leaves us and goes attend to something else.  Half an hour later I’m in clean fat face pjs, got the hospital bed propped with pillows my blankets, iPad, writing material.  Looks like I’m all set for lying on a sun lounger by the pool in Ibiza not getting ready to try a feed.  The blue curtain round my bed slowly moves, a voice quietly asks,  is it safe to come in Elizabeth?    It was the doctor who just unblocked my tube.  However, he was more concerned with drenching me and the bed.  I tried to put on a grumpy stern face and say I was annoyed.  I couldn’t.  Soon as I saw him.  We both laughed.   Let’s try the feed then he said.  And so we did.  It worked.  For two days,

For two days all I had was feed via the gastrostomy tube.  The only thing that went down my throat was my medication.  On day three the tube blocked again.  This time there was no flushing it.  I’ve got to admit it was getting scary.  The consultant explained he couldn’t push too hard with the syringe for the fear of the tube explicating.  That statement terrified me.  There is only one thing to do – take the jejunostomy tube out.   Once he had actually said the words – take it OUT.    I wanted it removed NOW.  So I got my way.  It was removed while I was in my hospital bed in the ward.   Got to say it was a strange sensation.  There was a slight tugging feeling.  Then my tummy felt like it had never before:  the doctor carefully pulled the tube at a slow steady pace.  This wasn’t an experience I was comfortable with.  I lay still and thought it best to co-operate in any way I could.  My whirlwind tornado tummy had died down.  As he continued to pull the tube gently, gungie watery gastric juices ran out as the tube was easing out.  Then there was a click.  At last the end of the extension tube.  That was it out.  Thank goodness.  Doctor and patient both relieved.    

Time to Take the big step back to straight forward gastrostomy feeding  (peg) .  Sort the feeding regime with the dietician.  Start of on a very slow rate with my pump.  Just 20mls per hour for 5 hours.  Remember I haven’t been fed direct into my tummy and how much am I going to leak.   Five hours later – dry dressing.  I felt like a toddler that had gone all night without peeing the bed.  The nurse came to flush my tube and check everything is ok before increasing the rate.  And so the rate was increased gradually over the next 24 hours until I reached 80 mls per hour.  At this rate there is a leak when the feed goes in, but only a slight leak.  I asked the consultant when the hole would seal up and I would stop leaking his answer was how long is a piece of string.  I just don’t heal as well as some people.  And take much longer than others.

  • We had a discussion at the hospital and decided I could go home on my feeding regime with
  • The support of my district nurses coming in through the week to do my dressing, check the tube in general, deal with my skin, give me my lanreotide injection,  and any other general medical/physical/emotional support they always do
  • Community dietician coming to the house very regularly to check on feeding regime,  change my prescription if need be. Give instruction on changing connectors for tube. Take my weight.  Give us general support.
  • Regular contact with my GP.
  • Home support from my hubby, and boy do I get this ❤️

Well the staff at the hospital had been tremendous, my room mates were great company for a bunch of sick folk.   I even managed to get some online Christmas shopping done – I bought a couple of bits and bobs or Steve, Tony and Stuart.   But I’ve got to admit I was ecstatic that I was leaving them.  The thought of Our own sofa with my Steve, Buddy and Bella was just what the doctor ordered.   I yearned for my home life back.