Leaking gastrostomy tube

Lavita has been my lifesaver. For those who don’t know Lavita is the name of my gastrostomy feeding tube. Artificial feeding is a way of life for me; feeding tubes, syringes, dressings, huge deliveries of feed by my lovely drivers from Nutricia, etc. For the last few months I have been having a bother with my tube, my nurses have been coming in, giving the usual service, changing water in balloon, etc. However, I have had a lot of leakage (losing water from my balloon ) I have been in an awful lot of pain and three times the balloon has burst. Lavita has been a leaking gastrostomy tube.

Last week I went for a ct scan with contrast at the request of my net consultant. He is worried because my 5hiaa is elevated, I’ve lost weight, been getting a fair few infections and I haven’t been feeling well at all.

This week I have been at the hospital to see one of my consultants. He was able to speak to me about my ct scan and finally shed light on why I have been loosing water every week. And perhaps why I have been in so much pain. He asked me to get onto the couch, he Kindly helped me up, he assisted me off with my shoes, I couldn’t bend down comfortably from the couch and get my shoes off, he could see that so bent down and took my shoes off for me.

I lay flat on the couch and he said Mark requested the CT scan for a totally different reason the problem we are going to discuss and he started to explain what the radiologist reported on the CT scan. The report stated the balloon should be sitting in my stomach, however it is sitting in my jejunum. The doctor decided he would reposition it there and then. Are you ok? he said, I nodded, my tummy was aching. Just breathe in he said to me, and I will get this adjusted and make you more comfortable. He gave a very firm tug on the tube and turned it around, he pushed it into place and gently twisted it round. He pulled the disc tight up to my skin and said the tube needed to be at 4cm. And to check and adjust it several times per day. He is hoping now that he has pulled the balloon back up into my stomach that I won’t leak water any where as much as I have been. Some weeks, my nurse puts 20mls of water in when it comes to the water change there is only 7mls of water in the balloon.

My gastrostomy balloon had fallen into my jejunum.

I got myself decent, he helped me off the couch and onto the chair beside his desk. We now had time to discus what he did, how my gastrostomy tube looked on the scan and how I was feeling. How am I feeling? rubbish, hope to feel better soon….. My doctor did me a drawing of how the tube should be and how mine was when I got the scan. He told me I should get blood tests today; the nurses with a bit of a fight took my blood.

Today I got an email from my other consultant; my net specialist. The one that ordered the CT Scan. He said he was shocked when he read the report that my balloon of my gastrostomy tube was in my jejunum. He asked how I was feeling and said he was relieved that I had seen my other consultant Alan and that he had repositioned it. The prof said he is hoping that the leakage will slow down now that I have had my tube pulled up.

I feel privileged to have very caring consultants that look after me so well. Especially take time to email me out of hours, or give me a call and ask how I am. Thats what I call service.

The Drawing by my consultant

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.

 

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.