Morning! (colon transit study day)

Well,  today marks the start of my Colon Transit Study which will go on for the next week. This involves swallowing a small capsule in the hope I can keep it down, to perform the test. The capsule contains small markers which will pass through my digestive system and I will have x-rays everyday to see where they have reached. This test will focus on my large bowel and how it functions. Just to make sure it isn't affected like my stomach. I am pretty apprehensive as we all know now how I am affected when I have to have things go into my tummy, to say it isn't pleasant is a huge understatement! But these tests need to be done to benefit me in the long run. because it is a small tablet it should pass through my stomach, and it doesn't matter if it takes a long time - as the test is performed over a week. It will just be a problem if I can't keep the tablet down to begin with!

We are also hoping and praying to see the surgeon today, to discuss what is going to happen and find out roughly when I will be able to have my surgery. So fingers crossed for that too! If it is soon I will stay in hospital until the date, but if is going to take a while I will go home with the temporary NJ tube and come back in for surgery at a later date. To be honest, I hope it is soon- I just want to get it out the way before nerves really do kick in.

Today also, we are hoping to have the training to learn how to give medication and set up feed pumps etc, for the tube feeding. This comes from the community nutrition team so fingers crossed they have time to fit me in.

Other than that, I think today is going to be a bit of waiting around for different people. I am not feeling brilliant as I am unable to have any of my medication this morning due to the colon transit study needed me to have an empty system to begin the test.

Thank you once again for your ongoing support everyone,

Chloe xxx

A typical day for me in hospital.

So, I thought I would give you an idea of what a typical day is like for me right now, so this morning out came my note pad and pen and I have been recording the days events.

6:45am
Nurse: "Chloe...Chloe! Wake up! Your blood pressure is very low...."
Me: "What time is it?!"
Nurse: "6:45am..."

I may as well stay awake, I thought.

7.20am
IV Cyclizine (anti sickness)- resistance on vein, hopefully I wont need another cannula

7.40am
Bed change time- I get out of bed and feel like I am going to faint; that will teach me for getting up too quickly!

8.00am
New shift of nurses for the day..Luckily no grumpy ones (in fact they are all very nice!)

9.15am
Medication via NJ tube, a little later than usual...I feel sick despite having anti sickness

Nothing apart from physical observations until lunchtime now.

2.00pm
I must have slept right through lunch time medication, as the nurse administers it through my tube- oops! I woke up to a blood pressure cuff and oxygen levels probe...That's how I knew it was roughly 2.00pm (It's the same time every day)

2.15pm
Nanny arrived to visit, we went down the the faith centre...It was nice to have a change of scenery!

4.40pm
Nanny left, so I caught up with facebook.

5.00pm
The ward dinner time, it smells of chilli con carne...must admit I am feeling jealous.

6.00pm
Blood thinning injection in my tummy, and medication via NJ tube.

Tonight Grandma and Granddad are coming to visit.


So that's a snapshot of what my day is like :) Thank you!

Chloe xxx

The reality...

I lie here in great discomfort, but that I can deal with.
It's the nausea that is the problem.
Night medication is the highest volume of them all- the hardest to tolerate.
The fizzy ones being the worst.
My gut is angrily rumbling away, cursing the nurse for pushing them in too fast.
Then the nausea just get's worse and worse.
I'm tired.
I want to go to sleep.
But I can't escape the sloshing of fluid in my intestines.
Sometimes I wonder if it would be easier I was swallowing the tablets.
Then I remember the pain.
The sickness.
That was even worse.

Then I remember I am lucky to be alive.
That I need to be brave.
I say a prayer.
And rest.
Because tomorrow it happens all over again <3

As the day draws to a close...

I would like to thank everyone so much for the overwhelming response of support, love, praise and good wishes. To those that have offered time, expertise and man power- thank you! To those that have donated already- thank you! The support myself and my family feel is just what we need to pull us through this difficult time. I have faith that we can get this done :) It is a huge weight off our shoulders to know that we are not alone. Sometimes asking for help is by no means easy, but it sure is rewarding!

I have had an okay day, my spirits have been high which has distracted me from the fact I am still in hospital when I was supposed to be going home yesterday. I am distracted from the fact I am in hospital over a weekend, when NOTHING happens.

Monday marks the beginning of another test down at nuclear science- a colon transit study. This will test parts of my gut the last test couldn't, to check it is functioning. The test will take five days and I will be discussing with the doctors on Monday whether I stay in hospital for the week or go home and come back every morning. Although I would like to go home so very much, this will take it's toll on myself and my family which will have to get me to and from Coventry every day.

I am getting sick of tests if I am honest. Most days I feel like a bit of a lab rat, but I know it is in my best interests, which is why I am putting up with it for so long! This morning I had my daily blood test and I just had my medication (third out of 4 medication times in one day) and daily injection to prevent blood clots as I am in bed constantly.

I hope tomorrow is as proactive as today!

Thanks all,

Chloe xxx

Gastroparesis- Awareness

"Gastroparesis is a chronic (long-lasting) condition in which your stomach cannot empty itself of food in the normal way. 

If you have extremely severe gastroparesis that is not improved with dietary changes and medication, you may benefit from a feeding tube.

Many different types of feeding tube are available – some only temporary, and others permanent.

A temporary feeding tube called a nasojejunal tube may be offered to you first, which is inserted through your nose to pass nutrients directly into your small intestine.

A feeding tube can also be inserted into your bowel surgically, via an incision made in your tummy. This is known as a jejunostomy. Liquid food containing nutrients can be poured into the tube, which goes straight to your bowel to be absorbed, bypassing your stomach."  - http://www.nhs.uk/conditions/gastroparesis

This is the reality for me, Gastroparesis also affects people at different severities though, and symptoms can be:

• feeling sick and vomiting
• feeling full very quickly when eating
• weight loss
• bloating of the tummy
• fluctuations in blood glucose levels 
• heartburn
• loss of appetite

This can be controlled through changes of diet and lifestyle for a lot of people. Unfortunately some people it is not so easy! 

Postural Orthostatic Tachycardia Syndrome- Awareness

"Postural Tachycardia Syndrome (PoTS) can be a life altering and debilitating chronic health condition.  Simply standing up can be a challenge for people with PoTS as their body is unable to adjust to gravity. PoTS is characterised by orthostatic intolerance (the development of symptoms when upright that are relieved by lying down).  Symptoms include headaches, fatigue, palpitations, sweating, nausea, fainting and dizziness and are associated with an increase in heart rate from the lying to upright position of greater than 30 beats per minute, or a heart rate of greater than 120 beats per minute within 10 minutes of standing." - http://www.potsuk.org/

So, that's PoTS in a nutshell. The symptoms are hard to deal with physically, but also take their toll mentally. Many doctors do not even know PoTS exists; so getting a diagnoses can be a long frustrating process. 

PoTS comes in different severities, some people being able to manage it with lifestyle changes, whilst others needing medication and finding it much more debilitating. 

I take Ivabradine for my PoTS symptoms, this slows my heart down to a more manageable degree. Although I still get dizzy, exhausted, chest pains, sweating, and palpitations when I try and stay upright for too long. 

PoTS needs more awareness so that doctors are able to diagnose and treat people more effectively. 

Overwhelmed with the kindness everyone has shown- Thank you!

Well, In a matter of hours we have all sorts of people willing to help us as a family bringing together man power to build the space I so desperately need. This feels real!

After having a week of bad news- first discovering I need a permanent feeding tube which entails surgery, then beginning to come to terms with huge changes in life style, I have been feeling very down in the dumps to say the least.

Try and imagine not being able to eat your favourite chocolate bar, or packet of crisps.
Try and imagine not being able to drink an ice cold drink on a hot summers day.
Try to imagine not being able sit down with your family over dinner or go out for a meal and enjoy good food and company.
Try and imagine the feeling of knowing if you do these once enjoyable things, you will in fact be subjecting yourself to excruciating pain and sickness.

It sounds tough right? And that is only the beginning.... This is the reality for many people across the world. A statistic I am now part of and having to get used to.

Then the next bit,

Try and imagine feeling so dizzy and faint it is just unbearable to stand up.
Try and imagine feeling like your heart is going to pound right out your chest if you try and walk up the stairs.
Try and imagine feeling so exhausted all the time that its just easier to let go of all you love and lie there and sleep.
Try and imagine dealing with the room spinning, seeing stars and flashing spots as something that is normal multiple times a day.
Try and imagine having to admit defeat and use a wheelchair just so you can get on with the things you want to do.

That sounds pretty tough to? There's another statistic I am part of along with many others.

This is why I so desperately want to raise aware of the life I lead similar to many others, in a hope to raise understanding and also to raise the funds I need to give me a better, but also easier chance in life.

Thanks Guys,

Chloe xx