Tuesday, 31 July 2012

Hospital Admission 4

I had a terrible night! The new canular is in an awkward position so therefore if I moved my hand the machine would start beeping! Beep! Beep! Beep!
So irritating.

Apart from that I had pains in the night particularly joint pain. And I was extremely tiered.
My dad came early today so I woke up early too. But I snoozed back to sleep a couple of times. I had the doctor come in took some bloods and asked me the usual question how's my pain, nausea etc and I answered the same. I told her and a few of my nurses that I would like to be seen by my own consultant and they said maybe.

My consultants secretary came and visited me again she said that it has been a crazy busy morning and the phone have not stopped ringing yet she still made time to see me I can't express how nice she is. She bought me a book to read and again asked if I needed anything and that she kept thinking about me. (aww so sweet) I also Told her if my consultant could see me and she said she will go straight to him as he is doing admin stuff.

After she left I had the play specialist come in and bought some movies but I had seen most of them lol. She asked me if I wanted to do anything else I said sewing. So she went in search to find me some stuff. She came back and bought me some butterfly's craft kit which I made and put on my cupboard. After lunch she bought me a stitching set which had different designs on it, so I started stitching. The first few times I tried and failed but I was determined to do it. Soon I got the hang of it and yes it takes awful amount of time but it's worth it as the results so far have come out beautiful. It's sort of a therapy.

My consultant came and visited me and I was half a sleep but I woke up. He asked me how my pain was and nausea and I replied that it was the same. He was concerned that I had lost weight. So he checked my tube and felt the area around it and said that it was still tender. For the nausea he added on a new medicine Metroproclamide as its one of the kinetic medicines that will help the nausea and move thing in the gut. He said he can't do any other medicines because of the side effects and also the medicines I'm on are all the high doses.

Today I was supposed to have an ultrasound done at the royal free hospital but I couldn't go because I'm admitted in here. So he said he will arrange it to be done here. Also he said he will talk to the pain management team to come and see me. Furthermore, he will try to get professor Aziz to see me here before my original appointment later in August. And hence there we will discuss the smart pill and what to do next. He will also organise to get me a dietitian here at the royal London. Finally some one is doing something on the 4th day here.

My consultant said that today will start on dirolyte on 20mls/hour and increase every few hours. And hopefully once we get to half way we will start my feeds at low rate and so on. So hopefully I will be out of here soon.
When my consultant was leaving he asked how I liked our new home (he meant the new hospital) and I said well it's much better and private than the old one however, it does not have wifi. Lool he just laughed and run out of the room.

So I have started my dirolyte at 20mls/hour at the beginning I did not have much pain but as time went pass I started to get more pain. So I spend the night watching movies. Only because I couldn't sleep because of the pain. I had another does of Gabapentin and paracetamol. Soon I was falling a sleep.

Sunday, 29 July 2012

Hospital Admission 3

Well today hasn't been the best of days. I'm in a lot of pain! I'm nauseas! Have been a sleep the whole day only waking up for medicines and doctors. I feel like a vampire. Not really because I sleep at night as well probably because I have very little energy. This pain doesn't seem to go away.
I should let you guys know on to a little secret my canulars do not last very long if I'm lucky enough mostly it's 48 hours. It lasted 48 hours and stopped working. The nurse tried to flush it wouldn't flush. And it was very painful my hand has gone very swollen. The junior doctor was not keen on taking it out but my nurse took the canular out.
My dad and my brother visited me today. I woke up just in time when they came through the door. My dad told me that my 5 year old brother was crying as he wanted to come too. But I spoke to him on Skype and he really really misses me a lot. And I miss him too.
So the junior doctor came in and tried to insert the canular but he failed miserably! Every time he would put it in he would move the needle in and out. I got poked 3 times and he still didn't get a vein. So he gave up and went to get someone else to do it. That's why I hate weekends at hospital the most because their is hardly a decent doctor around!!!!

Another a doctor came in and wanted to give it a go. I felt like a guinea pig! He said it was a new experience for him because he usually does it on babies. He asked me if I needed cream or cold spray I said no and he was really surprised. I mean spending 3 months in hospital and being poked everyday for bloods well you kind of get used to it. Right? Well I did.
However he put the canular in on the first go and it flushed beautifully. I finally had the fluids started.
Every doctor that comes in they are so curios and want to know what's wrong with me. What is gastroparesis? And how I manage not being able to et and so on. I find funny because I get to teach them something new! And they learn and appreciate it too.

The pain is still there it settles down for a very little time but rushes back very quickly!!!!

I cleaned my PEG-J tube and boy did it hurt when I was pushing it in and out!

Hospital Admission 2

Been woken up many times! So tiered! In the mornings had observations done which showed my blood pressure was low. Then while I was a sleep a doctor came in and woke me up for some blood test. Defiantly not a pleasant thing to wake up too. It did not hurt that much probably because I was half a sleep. It took her a long time take the bloods because it wasn't coming out. I think my veins were on strike! But she managed to take enough with patience.
So I tried to go back to sleep. But just when I got comfortable another doctor came in and woke me up for check up. Asked questions and because my pain had not improved he increased the does of Gabapentin to 300mg that's three times a day.
He then asked me what I was studying. I told him Biology, Chemistry, psychology, and sociology. He looked very impressed lol and asked what I wanted to do I said Medicine and a big smile kept on his face very fast he looked so happy lol I told him I want to specialise in gastroenterology and them do research into gastroparesis and so on. He looked very glad and smiled and gave me encouragement that I can do it and that I am strong etc.

When he left I tried to go back to sleep again ( I think you get theists how many times I have tried)
Within minutes a pharmacists came and told me there was a mixup with the does of my medicine the nurses were confused. Then he asked me what amount and how often do I take my medicine. He was surprised at the amount of medicines I took and the amount of times I did. So he left and I tried to go back to sleep. Then yeh you guessed it some one else woke me up.
The cleaners. The nurses.

But finally at around 12:00 I fell a sleep and was woken up by nurse for observation which was a great time because my dad came and he bought my brothers with them. They are the light of my life which made my day!
My little brother who is only 5 years old, asked me so many question!!! Why I'm here? How long I'm here? I'm I always going to be here? Do I get to watch tv? Can I play games on your phone? Do you like being here? And so on! I got lots of cuddles from him and then he watched tv lol and every second asking how I am. How he missed me. How he wish he could make me feel better. How he wants to be a doctor that can make me feel better and never be ill again! It bought tears to my heart.
The ward had a shortage of staff. I was given my medicines 5 hours later?!?! All that time I was in pain and was extremely nauseas!!!

Monday, 23 July 2012


In so much PAIN!!! My PEG-J tube hurts way too much! I have throbbing and stabbing pains! The pain is like the first time I had the tube in! Even when I breath talk, move or not even move it HURTS!!!! Have called my consultant but no reply so far!
I did not want the summer to start like this! :( Gastroparesis sucks!!!
Still smiling though!

Wednesday, 18 July 2012


My Enemy!!!


Okay, so I was really, really, really hungry! my mouth just wanted to munch and chew!!!
I walked around the house trying to avoid food. Every turn and step I took there it was. Food. On many occasions I reached out for it and then stopped my self from taking it. We have this storage in our house where we keep food. (Heaven for a gastroparesis sufferer!!! lol) I opened it a few times and searched and I found so many edible things that my mouth watered and itched to start munching! I looked around like a spy as if I was on secret mission! 0_o Searching the storage vigorously yet trying to be as quite as possible so that no one could hear me.
There were so many choices *mouth watering uncontrollably* I heard someone coming down the stairs and grabbed what ever came to my hand first. A chocolate broiche roll. So I quickly shut the storage and put it in my side pocket just in time. Mum came down the stairs and I walked up the stairs to my room pretending nothing happened. Unfortunately I don't have a lock in my room so I sat against the door and opened the wrapper. It was the most amazing sound that I had heard in a long time. All this time my mouth was watering. The smell smashed my nostrils with sweetness and joy as I quickly took a bite from it savouring every little piece. The Flavours exploded in y mouth. The silkiness of the chocolate hiding in the bread and the fluffiness of the bread was just magical! Just the last bite left and I didn't realise my mum was knocking on my door so i shoved it in mouth and swallowed it as quickly as possible. Oh I wanted the joy to last longer but it wasn't meant to be on this occasion.
Mum didn't say anything but I could tell she knew. 30 seconds later and I could feel it rushing up to my throat and burning whatever came its way. If the toilet was not close to my room I would have surely puked on my carpet. And as many times I have said it before that I regret it and I won't do it again but I did! Its easy said than done.
I vomited more than 15 times! to the point that nothing was left in my stomach not even the acid but I still was retching uncontrollably! And the PAIN is unbearable! My chest, my stomach, my intestines and my body feel like they are being stabbed continuously!!! Its taken out so much energy from me that even typing this is unbearable because of the extreme nausea, pain and heart burn!

If only I could just take a sip of water with out causing me to vomit and pain!

Daily life of Gastroparesis!

Hafsa x

Tuesday, 17 July 2012

My Article

Here is a Link to my Article
Raising awreness for Gastroparesis. Every little helps. The money raised will go to GIFT which will donate some to the http://www.icms.qmul.ac.uk/neurogastro/research/nausea/index.html research.

Please go to Facebook and Like our page GIFTUK http://www.facebook.com/giftuk

Natalie and I will have a joint Blogg and also a join Twitter account.

Saturday, 14 July 2012

Visit to Rheumatology

Visit to Rheumatology

It was a regular appointment to the rheumatologist at Royal Free Hospital. My consultant was busy so I usually see another one, however she does not work on the Wednesday anymore so I saw another Doctor. She was lovely and listened well and took notes. Probably the annoying thing for both of us was that she did not have my notes so she didn't have a wider picture of what was going on with me and my Gastroparesis etc...

I have been taking hydroxychloroquine for my Lupus, Arthralgia and joint pains. They have helped over time, however I still experience strong joint pains every day, she told me to continue on taking hydroxychloroquine. She also suggested that I should try steroids. Little did she know that I had already tried that and let me tell you that was one of the worst weeks of my life! They did not help at all in fact the increased my symptoms and made me feel crappy the whole week. However on the plus side it did increase my weight by 3kg which was much needed. When she heard this she scrapped the idea.
I also spoke to her about my possible connective tissue disorder and my high ANA (Anti-Nuclear Antibodies) I wanted to know what type of connective tissue disorder it might be, unfortunately she did not have the answer for it. So I asked her if there were any further test they could do to investigate this further. She said my case quite complicated some test come positive and other come negative so she will repeat the tests. Furthermore, she said that most of times it’s very difficult to pin point what it is. Naming it probable tissue disorder is a diagnosis in its self. And thinking about it know I believe it to be true; but there always a part of me that wants to know what it is exactly so I can put my mind at rest (lol).
Additionally, I spoke to her about my tendon of my left foot hurts a lot and I find it difficult to walk on. I had previously been transferred to Physiotherapy by my former rheumatologist, however with that it still had not improved. (Talking about physio I had missed and appointment with them due to my exams; so they had removed me from there list which added another headache to the very busy day!) The consultant suggested that I should get and ultrasound of my foot and have a steroid injection done to help the pain. Fingers crossed that steroids help this at least. She also referred back to physiotherapy.
After I finished with the rheumatologist I went to register myself with physiotherapy. I then went to book my ultrasound and went to get my bloods done. They have added extra blood rooms at Royal Free Hospital which has immensely helped the waiting time. I’m not squeamish about having blood tests done because to be honest I’m used to them now since I get them done a lot, it has become a norm. However because on this day I could not tolerate my feeds so I had less feeds. This made it hard for the blood test because blood was not coming out. She squeezed my arm hard and it started to come out; but very, very slowly drop by drop.
After such a hectic day I came home and just crashed on to my bed and fell asleep.

Hafsa x