Monday, 17 December 2012


It's been so long since I last was on here. I miss it. I haven't had time first being so ill and always tiered and sleeping and aching. I've had so much done and have so much to do!

First of all, Great News!!! Dr Kadirkamanathan in essex Broomfield Hospital has agreed to do the pacemaker for me! He will be filling the forums for the funding from the PTC in my borough. Previous to this I had done the impedance study which the results showed that I have developed rumination syndrome overtime. I will need behaviour therapy for it. I will need train my stomach to stop vomiting and that whatever I have init is not something bad all the time it doesn't need to get rid of it most of the time. I also went to see professor Aziz at Barts Hospital they both will have a meeting about me with their team to discuss my case. They have both said that I'm a very in-fact an extremely complex case! Yp! Unfortunately!

Sorry I have been so white lately I have a lot of exams coming up and am very stressed about it as I missed a whole month and a half of school.

Thank you for all the good luck wishes, without you guys this would have been a very terrible Fight to fight on.
Thank you xxxxx <3

Monday, 8 October 2012

Finally Surgery

Had my Surgery done!
Yaaaaaay! *ouch!*
3rd of October I had my surgery one days earlier than planned. The time for the surgery was getting closer and my dad was not here for the first time before any of my surgeries :( he kept calling that he is on his way but he gave me a lot of encouragement and strength before I put my phone away and went downstairs to theatre.
As if God the all blessing had planned everything! Before the lifts came up I saw my dad running down the corridors to the lifts and just in time! Yaaaay I have never been so happy in my life *ironic before a surgery* lol but he went downstairs with me all the time holding my hand. But I was really excited before the surgery. I guess I just wanted to get it over and done with. Which is true.

Me and my day said our good-byes and he gave me a huge kiss and hug I could see it in his eyes he looked worried. so I went inside and waited in the waiting lounge on a bed then was taken into anaesthetic room where my blood pressure, temperature and so on was checked. I was given anaesthesia through my PICC line. And the last thing I saw was the clock 10:35 and it fuzzed away my head felt light and I was gone!

I don't know after how long but I was just about awake, and all of a sudden I was shivering non stop! I felt so cold that every joint in my body was shaking! I was sweating! Just felt out of my body, hardly could talk. I felt extremely nauseas! I had anti sickness and pain medicines but they just didn't seem to kick in that quick with that cold feeling going on I didn't know what to do. But they had an eclectic blanket that warmed up quick I could feel it. However I was still shivering and felt cold to my soul! I had more blankets put on me and more and more. Yet I was still cold!
I was bought upstairs where I had more blankets on me and still whizzy hardly understanding what people were telling me. I had oxygen going through as my throat felt like it was closing in on me. I had slept through the whole day and had my TPN started.
My dad was by my side the whole time. He would have stayed if he was allowed to, he stayed longer than usual. But he had to go but all I was going to do was go to sleep as I was still dizzy I had my blood pressure, temp and pulse rate measured every half an hour. The cold feeling went away after a couple of hours.
I was going to the loo every hour which was very unusual and painful as it was hard to get out of bed! The worst pain came in when I tried to go back to bed and lay down thats when the pain shot from my tummy to shoulders, back and every bone in my body! I started to cry out loud in pain because I couldn't control my self I was shaking and shivering in pain again! Which scared me! I had a morphine injection which kicked in quite quickly and helped the pain. However, It made other things worse. The nausea! Like I said I kept waking up every hour in pain.

I woke up in morning, feeling a lot of pain and I tried to walk which is supposed to help heal it quicker! Had the surgeons coming over telling me that it all went well. I'm to start flushing slowly as much as I can tolerate and then 48 hours later I can start my feeds. I tried to flush the tube with push and stop technique but the first time it hurt a lot. I only managed 10mls but a few hours later I tried again. Although I felt extremely nauseas I still gave it a go but after a while the pain went away. I had my TPN started really late at 3 in the morning because I had terrible chest pains on right shoulder where the PICC line is inserted so they had to do an X-ray to check it out. So at one in morning I went downstairs had an X-ray which showed it was in the right place. Like I said to the doctors and they agreed that maybe the pain was been directing to other places not trust my shoulders but ches, back and joints. Let's just say its sever pain!
So today I started my feeds at 20mls/hour. So far it's okay even though I feel extremely full but I guess my intestine are not used it as they haven't been used for such a long time. And I'm keen get out of here as soon as possible so I'm holding it in there.
Oh I almost forgot coughing while you've had a surgery done on your tummy is PAINFUL! *ouch!*

Good News & Bad News:

It's been a long time since I last updated you. Sorry just haven't been up to doing so due to tiredness pain.
The last time I left you I had started TPN via. my PICC line this was great as it meant that I have nutritious after two week of being on IV only! This gave me much more energy for a while But I had to make sure I didn't over do my self.

All this time I've been having low blood pressure! So walking was not a good option lol.
On the second day of TPN I went to have a Long warm shower. But that was a massive mistake! In the middle of it my head felt like it was rushing in on me as I grabbed the towel my legs felt wobbly and my head was spinning on me so fast that I don't remember what happened next! Luckily I had pressed the emergency buzzer. When they found me they found it hard to open the door as I had locked it from inside but the had managed too. They were calling my name but I could hardly make out what they were saying!
I was sweating fast and felt extremely cold; shivering uncontrollably!!! With terrible chest pains!!!
They quickly took me to my bed did observation which showed my blood pressure was really low!!! And they did an ECG which was normal. After the observation I was not allowed to walk around. To stay in bed. And I did. I slept for quite a while. When I woke up I felt like that life was sucked out of me but I'm getting there.
Nothing much happened the following days. Still waiting for the 4th October jejunostomy surgery! The doctors have been. Trying to get earlier but both upper and lower GI surgeons were on holiday. So it was the waiting game!

All this time being on TPN has given me SOME energy. But found out in the week that my liver was not happy with the TPN as some enzyme levels had increased. So I had a quick ultra sound done which showed it was normal. Luckily! So they decided that they will change the formula of the TPN of its fats and sugars also having it on for less time. It started for 24 hours then, 18, 16 and 12 hours each time meaning less time on the machine!

"A Smile Cures Anything"

Monday, 24 September 2012

Nutrition Yaaaaaay!!!!

Getting there,

Thursday came round with my canular not working again. Tissued. So I had no fluids since 4:00am. They won't take canulars out until another one is inserted in. O_o it was vesting in s lot, very painful and had puffed up.
The ward round had started I was waiting eagerly for my turn. Finally.
As they were coming in I overheard them talking to each other about emailing prof Aziz and they haven't done it yet. What? Anyways the doctor on the ward this week has been really good he is the one that my paediatric mentioned to me. He is been trying his best to stay on top of things and get things done as soon as possible.

Oh I just remembered I think he was one of the doctors that I lost my temper at yesterday but he didn't even show it. He appologised.
He explained that during the scope the tube is in the right place and when they take the scope out the jej extension flips back to the stomach. So its not doing its job. Aha my theory proven three times lol. So he said that root is completed crossed out and everyone agrees with it.
So the plan next is to have the surgical team to come and speak to me about the surgical jejunostomy and to also have a full thick biopsy of the small intestine for further tests. The surgeons came and saw me gave a date of 4th October so the consultant said he will try to do it as soon as possible. Furthermore the nutrition team will come and see me too.

Friday morning at around 11:00 I was taken down to get my PICC Line done. On the way down the cold lift I have to admit I had some fear in me. I think all due to the fail attempts of the jej. In the back of my mind I had this negative thought that it was going to fail. This feeling was battling the thoughts of when I had the PICC inserted last year which didn't have any complications. The procedure was quick and fast. It was very cold in the waiting area. But I had to wait for a while but then I had a doctor come and talk to me. She was extremely good! She spoke to me clearly, kindly consulted and informed me abouth the procedure from top to bottom. Thank you. This decreased the anxiety and her team were quite funny and bubbly. Making terrible jokes lol. There was a confusion wether I should have Hickman line or a PICC line. They were pretty insistent on getting the Hickman line which I dread as its more permanent but I preferred the PICC line as its short term and anyways this was going to be short term.

They wheeled me in and used an ultrasound to find my veins which they had a hard time on. As my veins were so dried out and small because of the lack of fluids and nutrients so a couple of them had a look and agreed on which vein they wanted to use. So they numb the area and inserted the needle and tube purchasing and tagging it in using the guide of ultra sound and X-ray. At one part it was stuck and wouldn't move forward it's kept bending on the sides of the veins. The gruesome and beauty of this was that I could see everything. The tube sliding in I could see under X-ray live it was like a snake slithering its way in lol. It felt very weird is all I'm going to say!

The procedure was done and the area was dressed. I am to carry around a card with me at all times. Also they should only be using a 10mls syringe to flash it; furthermore they are to flash it after each medication and is to be kept extremely sterile! Here is the disappointment that the PICC line was only on lumen. Which meant that once the TPN had started I can't stop it to give my medicines as there is only one lumen Alcoa high risk of infection. But apart from that it went well. However my arm felt like it was going to fall off me it hurt a lot after wards but was just about manageable.

I came back to the ward and started some paracetamol for the pain which just about helped. I then had some vitamins through it and finally started TPN! Yaaaay nutritious finally!

Saturday, 22 September 2012

A day with a Turn!

A day with a Turn!

If you read the the last blog this where it leads on from.
Like I said Wednesday was a horrific, terrible day. After crying my eyes out like there was no tomorrow. But in a way I had the right to. And I felt sort of proud of my self. Don't you think?

But as Wednesday continued I had a voicemail from my paediatric consultant to catch up and see how I was. He also had come to the ward twice but I was in endoscopy. Like I've said and I will say it again he is a very good friend and doctor. So when I came from endoscopy I had a surprise on my bed a magazine, an inspirational book also a beautify fully gorgeous Calvin Kline perfume (mmmm it smells soo good!) thank you x. She is just and angel. Always there to cheer me up with her beautiful character and smile. I also had my psychologist come and visit me yes you've guessed it the (radiant angel) and I just let it all out again. And she said I had a right to feel that way. That I have been through so much. She sa poke to me soothly and truthfully calming me down slowly. She's like a best friend that you can just to talk to about anything and yet she still will be logical about it. Thank you x

But apart from this horrible experience at least this ward is much nicer and the staff are more reasonable. Also I have mad good friends with a very beautiful and smiley doctor who took my complaints from the previous ward and made sure it wouldn't happen again. She is so nice I just wish you could meet her. Another ray of sun shine. Although she's poked me many times with a canular but I forgive her lol she had too my veins were on strike.

Wednesday was a black day for me. D-Day.
So many horrors, disappointments and just loosing hope. My friends came round and visited me which made my day so so much brighter! Thank you Mary, Mariam, Khuluud and Jawharyio. Also a massive thanks to everyone that sent there love and support. I haven't forgotten you Sumaya for your beautiful letter xxx they had come straight from 6th form to come and visit me poor them making a long journey. Thank you again I will never forget it. We chatted a lot and caught up on the news at school. It was just a relief to have them round and I almost forgot about what had happened a couple of hours a go. You guys have been great! None of them wanted to leave and neither did I want them to leave but they had to. I miss them so much! We took funny pictures played games and so on. But their company was the most extraordinary part of it all.
Thank you x

Wednesday, I briefly remember what the plan was as I was so huffed and pissed off with anger.

Slowly through the day, the frustrated anger started to calm and the storm of tears just drizzling there and there.

I would I've to thank all the Facebook group friends for their support, encouragement and care. Thank you x

"A Smile cures Anything"

Friday, 21 September 2012

3rd time in a row! Horrific!!!!

3rd time in a row! Horrific!!!!

Well it has been an emotional roller coster! So far...

There has been not much going on apart from miss communications and the good old waiting game! After being passed on from Monday to Tuesday to Wednesday it finally came round! I did not want to have the PEG-J done again because of the horrors I faced the first 2 rounds in which I was wide awake as the sedation did not work and both times was a failure the jej extension was not in the right place! Again!

On Tuesday i broke down massively because i was told they couldn't do it that day either! The uncertainty stabbed me numerously all over non-stop! I cried a lot not because I was in pain. But because I was let down again! I just had crazy thoughts in my head I wanted to pull out everything my gastric tube. My IV canular. Blood pressure equipment. Everything. I felt almost suicidal! And just run away and start eating!

But then came to the rescue my psychologist who is the sweetest person I ever know. She works with adolescents with chronic illnesses. If you see her round she brightens the mood. She came in and I felt relieved! A familiar face. I cried and cried and let it all out to her. She was very considerate and listened to everything I said. She said she would have come earlier if she knew I was in the hospital. All thanks goes to my dad for ringing her up and telling her I was here. Talking to her made the bulldozer on my chest decrease slowly. She spoke to the the doctors and told them how I felt and everything. Thank you so much!
Trust me if you see her in a room she brightens it up with her wonderful Cherie attitude and smile! She truly is a radiant angel!

Wednesday finally came and believe you me I was terrified!!! In the back of my mind I knew, it was not going to work. What was not going to work?
1) the sedation. 2) the positioning. This time round I had lost full trust in these doctors! My endoscopy time creeped by slowly yet fast! The appointment was at 10:30 and I was there before that and the waited game started again! I practically knew most of the staff their each one of them coming up to me and shocked trying to co fort me saying this time round they will use a different sedation and will go as far as they dare to. Also a more senior consultant will do it! With his eyes closed! That how confident they were lol

So 2 and half hours later the time came. All that time the intensity increased and I was getting pictures of the previouse 2 scopes that were unsuccessful in which I was wide awake! This time round they were going to do it under X-ray screening to be more precise. I was rolled into the the endoscopy room In my bed where I laid on scope bed read for the procedure. All this time I was shaking nervous, dry tears rolling down and throat lumped up had the oxygen tube put up my nose and it was burning me so badly. I was sneezing with tears rolling down.

They told me to lay down on my side and relax. Relax?! Really?!
I tried my best. But all the flash backs of the past 2 failed procedures rushed down on me and made me feel cold and empty. The first shot of sedation was injected in... Nothing. Second shot... Nothing. This was supposed to be stronger! I didn't feel not even feel the slightest dizziness just normal third shot... Nothing. And the scope went down! The old jej extension was taken out and yes I felt it fully! And as the scope was going down I could see it on the screen and I was gagging and vomiting violently. There were parts where I would get up and was put down they tried their best. The feeling of tubes and cameras in my throat was not new but made all the past few days thoughts permanently scared into my mind and this and the flashbacks both hit me violently! I was crying!

There were moment where I would turn from the scope screen to the X-ray screen. I basically saw the whole procedure for the third time. And I have a feeling I will be able to carry out that procedure with out any trouble as I was wide awake in the process, learning at the same time! I guess that's the only good thing that came out of it.

They said it was done.
But I wasn't convinced.
I asked for it to be flashed. And they did. Guess what?... I felt it in my stomach. It was in my stomach I told them. They were in disbelief because the X-ray before showed it in the right place. Like I said I wasn't convinced. I asked them to aspirate it and check the pH. Yes I was awake and setting and speaking. Sedation didn't work! So if they couldn't do that I told them to X-ray it and they did. Guess what?...
It was curled and looped in the stomach!
The saying 3rd time lucky did not work! At all.

I just busted out in tears!!! I don't know what came over me but the failure just melted me to the point where there was nothing left to melt.
I couldn't stop crying. They said they were going to leave it like that.
They wouldn't do more. As if I was going to let them do more. I was taken to the recovery place. Recover? Ironic? I was crying. Crying. Crying.
Well let's just say a storm of the atlantic sea swarmed its was into my my heart and eyes with non stop thunder of tearful rain, anger and disappointment!

I couldn't contain it anymore. The grande had exploded violently. Torn me apart into unrecognisable pieces.
Being awake through the procedure and it's pain didn't fuel the tears as much as the the disappointment did. I could feel the curled up jej tube in my stomach! And felt sick by it. I couldn't face my dad or anyone. I was just so angry at everyone and especially at my self and my body for it not working out. For failing me.

That's when the full suicidal thoughts rushed in like a hurricane!
I wanted to pull everything connected to me. And I did I swore at the staff and threw the heart rate monitor, the blood pressure monitor away from me. I was about to do the same to my gastric tube and jej tube but my dad stopped me. I wanted to run out and punch anyone that came in my way. And I almost did. I had doctors coming round to talk to me I just told them I don't want to see them or anyone else. I have never felt this way before.
I just wantedd to kill my self!

All this time my dad was standing there and I saw the sadness in his eyes the sorrow further fuelled my anger! What could he do. He tried to calm me I punched him away! But slowly I came to my senses with my dads smooth and soft words and calmed down just to almost get my sanity back!
if my dad was not with me I don't know what would have happend.

I asked them to remover the jej extension tube as it was curled in the stomach so from then onwards my PEG-J became just a PEG.

The waiting game continues.

Saturday, 15 September 2012

A&E Trip!!! Disaster!!!

A&E Trip

Well this is going to be a big rant! And massive guessing game!
I haven't been able to blog much as I have not being feeling well. A lot of things have happened since I last updated you.
From tube leaking to splitting, unable to tolerate feeds very well I have been reducing feeds constantly as I felt bloated and full. Only managing around 500-600mls a day when I'm supposed to be having 2100mls daily! So this has left me feeling very weak and loosing weight quickly!
I have been ringing my consultant and he has been trying very hard to get me on the list! But the surgeons in paediatric did not wanted to it because I'm 17!n,y consultant finally called and told me to go A&E they will be expecting me.
I reached A&E and played the waiting game. Was passed on from one to another. Finall someone saw me and they wanted to start me on fluids and have some blood tests done. Again played the waiting game and then after an hour or so I had a nurse come in put a canular in! And guess what? She couldn't find any vains! I had three people come and try on me but they finall found it in a very sensitive part just on my wrist so I couldn't bend it! I was started on fluids and was told when I go on the ward gastro team will come and see me. Oh another guess? No one saw me!
The fluids run out and it took them 5 hours to change it! Okay I understand hospitals are busy but when you have a severely dehydrated person I think they should get the fluids as soon as possible.
I had a rough night! Couldn't sleep because of the pain and nausea!

How awesome is my paediatric consultant he called me to check on me.
Thank you Dr Rawat.

The following day I finally saw the gastro team who were clueless. Oh how I miss my paediatric team!
So the plan was to have my tube changed on Thursday in the meantime I should start my feeds at 30mls/hour because the jejunal tube was in the right place. He will get the dietitian know to come and see me. Oh and here is another guess for you. she didn't come!
The whole day was spent nagging the staff to get me my medicine on time and get me syringes! So for instance my 10:00 medicine was given to me at 1:00am because they couldn't find any syringes! This carried on the whole day! I would ring the bell for the nurses and they would come after 8-10minutes. I was loosing my hope! I felt like no body cared about me. The doctor had prescribed me an injection for thing my blood as it was clotting apparently. I only found out when the nurse asked me if I had taken the injection and this is how my face was o_0 I didn't have a clue what she was talking about no one had told me that was part of the plan!

To be completely honest I am very disappointed with how I'm getting treated here! No one seems to listen! The peades were much better and understanding!

So Thursday finally came round and was told that I would have my tube changed at 4:00pm FINALLLY!!! So that meant I had to stop my fluids two hours before it. Guess what? I was a sleep and no one reminded me! So I went to endoscopy unit where I stayed for long the surgeons didn't have a clue as who was going to carry out the procedure. One was passing it from another to another! Not giving me much confidence!!!
Finally they sorted their quarrel! Was taken into theatre and my canular had failed so they try to put it in another place and another, and another, and another...... I had 3 people working on different parts on my arms, hands and legs but they couldn't find the vaiens. They would but it would collaps! Finally they got it in so they gave me the sedation first shot it didn't work second shot it didn't work third shot didn't work fourth shot it didn't work I was wide awake while they were doing the procedure! I was the most horrible procedure I had ever done! I was awake all through it. I felt the scopes go down the tubes in and screamed and cried they gave me a shot of pain meds but it didn't work! Normally I get knocked out within seconds. I don't know what happened! I have never ever felt nervous before a procedure in my life and now I always will. It has scared me for life. I have never cried so much! Through out the whole procedure I was gagging and vomiting! I still get bad thoughts of all the tubes going down my mouth! And shudder in pain!
I was bought back on ward and should have started the fluids. I didn't have the canular in. I came to the ward at six and no one came and saw me! I should have had an x-ray done but they didn't do that! So how could they know the tube was in the right place.
I was to have my feeds started and fluids too. It took me for some one to come and get them started? 8 hours of crying and waiting game. They kept telling me okay we will come. Okay I'll come. Give me a minute. I've told so and so. And it went on and on.
I flashed the tubes in and the jejunal one felt like it was in the stomach but none listened to me. They only. Listened when I cried vomiting my medicine out. This has been an awful stay at the hospital. Never do I want to come I. Again.

They finally called the doctor who came at 2:20am to put the canular in. And guess what? They started the fluids at 3:30am!!!
I feel like I'm a rat and they don't care. I mean I might as well be at home and die slowly of dehydration than wait in hospital bed unsure when they will start your fluids!!! Never had I cried so much in any of my stays at hospital than being here In This ward!
It's 5:30am as I'm writing this! I'm in pain and am extremely nauseas while vomiting bile out!

Friday comes I was questioned by nearly everyone of how I know the jej tube is not in the right place?
Well maybe because it's my own body and that is my third PEG-J tube and I can feel it in my stomach!!!
So they decided to do a barium X-ray guess what? They questioned me too and another guess for you all the X-ray showed it was in the stomach! Lol there faces we're shocked and said you obviously know your stuff.
Anyways so the registrar came in to tell me they were going to endoscoply try to do it again!
So the waiting game started again but I was finally taken down and another consultant was going to do it under sedation they were very shocked that yesterday the sedation didn't work! He said it was enough to knock out an elephant lol but it didn't work! So this time they gave me five shots of sedation! And guess what? it didn't work! I was screaming and crying through the procedure because I could feel everything! I was vomiting continuously! And I finally plucked up the courage to tell them to STOP! They didn't after 4-5 screams of STOP they stopped! Finally!
I was taken out of theatre and they said they didn't manage to put it in the right place! What a bummer!
So I was put back on fluids! Wait the tricky thing here was that they couldn't find my vains they tried over 10 times finally they put it in my foot! Which is so uncomfortable and hard to walk with! So stuck in bed weak.

At least my room had a good view lol

"A Smile Cures Anything" Hafsa xxx

Saturday, 8 September 2012

Changing Blog NAME!!

The blog name will bechanged from

It suits better with my punchline. "A Smile Cures Anything"

Important Announcement!

I am delighted to inform you that my friends and I have raised a whopping £865 altogether in our 2 weeks event.

To carry out this huge responsibility that we had taken upon us, involved organising everything by ourselves such as the planning of the events beforehand and putting it forward to our head teacher who kindly gave us the permission to carry out the fundraising events. We held assemblies to the whole school promoting the charities and raising awareness for both of the charities that are very close to our hearts.

The charities that we chose were very dear to us; they were Water solution for Africa and G.I.F.T UK which is a charity that I am helping to organise and I am a co fonder of it. This charity stands for Gastroparesis and Intestinal Failure Trust. What this is paralysis of the stomach for the patients; to find out more visit our Facebook page (and hit the like button!) and my blog Help Raise Awareness!

Read. Share. Support.

The Money was split between both of these charities. Water Solution for Africa getting £432.50 which we were lucky that government was doubling the amount at that moment in time giving a total of £865.00 And GIFT UK receiving £432.50. This will be split in two as well with £200 of the funds directly going to the Wingate Institute of neurogastroenterology for further research into gastroparesis and digestive tract paralysis. And the remaining £232.50 to GIFT.funds directly on behalf of the Wingate Institute of neurogastroenterology to further research into gastroparesis and digestive tract paralysis.funds directly on behalf of the Wingate Institute of neurogastroenterology to further research into gastroparesis and digestive tract paralysis.

The following events that were organised are Car wash (for teachers only), Home bake sale for teachers only (including delicious fresh cakes, fruit kebabs, waffle’s etc…), a whole week of bake sale for students (including mouth-watering doughnuts, popcorn, crisps, chocolates, cakes and muffins) and fantastically beautiful henna tattoos. Also donations from students and teachers alike at break times.

All this would have not been possible without theses amazing friends, Mariam Mir, Mary Hoang, Sandleen Iftihikar, Maha Tahir, Jawhariyo Abdullahi and Ayshath Fasmeena Cheriyalampady House; who put blood and sweat into this fundraising events. With out there brilliant ideas this would have not been achievable.

We would like to thank the sixth form students who helped us out tremendously in all the fundraising events. Thank you to Mr Lavell for making this possible and students and staff at Whitefield School for donating generously.

You made this happen.

Thank you all for your on-going support!

Hafsa Momin co-founder for GIFTuk

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 research.

Please go to Facebook and Like our page 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

Saturday, 30 June 2012

Tube Leak Disaster!

Tube Leak Disaster!

What a disasters’ weeks it has been first the PEG-J infection then my PEG-J being broken. Yes that’s part of life with gasroparesis.

My PEG-J has been leaking from the gastric port not so much but I did not want to make the same mistake I did last time. Previously this occurred I did not give it any attention so as you can imagine the leak got worse overtime until it was leaking so much that the gauze I would put around it were not able to stop it. The situation got so worse that it burned my skin. The acid penetrated my skin leaving it sore and irritable. That time all I had to do was call the hospital from the letter that they had given me if anything happened with the tube. On the same day I went and they replaced the PEG-J ports; this only took 5 minutes.

Unfortunately, this time it wasn’t as swift. I called the same nutritionists again but they refused me because I was no longer under the royal free gastro team. However since I was discharged from there I did not know who my nutritionist was till this Friday. The royal free told me that I should then call Abott they would be able to help me, they gave another number which I called who told me that she does not carry the equipment’s around with her so she gave a number to someone else. And guess who it was? Yes it was the first person I contacted (lol) who gave me an even longer lecture this time. By the end of the boring long lecture I was finally given the number to my “nutritionist” at the royal London hospital whom I called, I basically first told her that she is “my last hope!”  I told her that my symptoms have flared up and that I cannot come to the royal London because I feel light headed, dizzy and sick the long journey will only worsen my symptoms. She was very kind and said that I shouldn’t travel when the royal free is my local hospital they should be able to do it without any trouble. Similar to what my consultant had said the day before. She said she will give a call to the nutritionist at the royal free.

 After waiting for what seemed like years I finally received a message from the nutritionist at the royal free (who sounded sort of angry lol) who said that she was leaving so she could not do it for me. Therefore, she had left the spare parts of the PEG-J ports at the endoscopy reception I was to collect them I then had two choices I either call the Abott nurse to come and fix it for me at home (which was the easiest option for me) so I did and she said to me she will not be able to come until Tuesday. The other option was I stay and wait in the endoscopy reception for the surgeon to finish his surgery then he might see me so I had no choice and I stayed there. The clock was ticking by so slowly yet I had waited over two hours now and I could see most of the staff leaving. I felt as though I was not going to be seen but the receptionist assured me and checked that I would be seen.

Finally, at around six o’clock I was finally seen. I was taken to one of the theatres where they carried out the endoscopy; it brought back some unwanted memories. I joked with the surgeon that I hate this place ad he said he could tell by my face lol. So he saw my tube and changed the ports. He was really kind; I guess the wait was worth it as the weekend was coming.  He checked and flushed the tubes. He then told me that in the future if anything happened to the tube I should directly come to the endoscopy reception where I should ask one of the Doctors on duty to have a look at it. He apologised for the inconvenience and that if this is the hospital that I had it inserted it and furthermore, that it’s my local hospital there should be no problem for me to come here.  (aaahhhhh J finally!) I’m thankful for him that he has saved me from future hustle. He gave some extra tape, ports and plaster bandages.

I finally went home with my new clean PEG-J ports. I seriously think there was no need for the massive hustle that took place for the last two days from being passed from one person to another like a ping pong ball! This caused me extreme anxiety and everyone knows what that does to the symptoms of Gastroparesis L and since my symptoms were already on a flare up they blasted out of the room. Leaving me shattered!

Saturday, 23 June 2012

PEG-J Infection

PEG-J Infection:
Sorry I haven't blogged for a very long time. I haven't been well. I spentthe whole of yesterday and today sleeping! Would you believe it I just woke up!Lol

Any ways, as some of you may know from Facebook or Twitter that my tube hasbeen hurting a lot! I didn't take much notice of it, but then I started havingtummy pains as well. My tube felt like that it was being twisted and turnswhile being pulled from the inside at the same time I had a stabbing pain withit too. So I called my Consultant and he asked me questions such as if the sideand outline of the tube was red or bleeding. That was true. Also he asked if Ihave had an immediate diarrhoea and that was true too. Because of all of this Ifelt very weak because I couldn’t tolerate my feed either so instead I was on dioralytefor a day which still made me bloated, very full and sick.
He prescribed me some antibiotics which I am to take for two weeks. Thefirst is Ciprofloxacin which I am to take for the first week. The next one isMetronidazole which I am to take for the second week. Finally I am then to takeProbiotics #VSL for six weeks afterwards.
My consultant has been really good as I just called over thephone and he replied back on the same day even when most of the doctors were onstrike. He faxed the prescription to my GP. Now this is where the problem occurredwhen I called my GP the receptionist said they have not received it when my consultant’ssecretary (whom I should mention is a –very nice lady) said she received the receiptsfrom them instead she called them and I then called my surgery again, then theysaid to me that they cannot prescribe the probiotics which really annoyed mebecause they had previously have prescribed them to me. Anyways I got theantibiotics but not the #VSL I made an appointment with my regular in charge GPon Monday to talk to her about it.
So Today I went and retrieved the antibiotics from thepharmacy and started them.
Furthermore, today I have been having a stabbing pain on theleft side of my chest with my left shoulder and my whole arm hurting with it too.This scares me but I know that its because of my stomach pain diverted to mychest and also when my symptoms flare up and my nausea worsens X100 it occurs.
Overall I have had a very lazy day where I slept a lot butit gave some rest to my body that needed mostly.
I hope you all are fine and having a better day than me.
Remember never lose Hope&Faith.
Hafsa xxx
"A Smile Cures Anything!"

Sunday, 17 June 2012

Quick Update!

I will be posting my whole story up on here from the start on how it started. It will take some time but I will do it!
Also I will be making a Facebook page and account soon now that my exams are over.

Hafsa x

Tuesday, 17 April 2012


It has been a very depressing few weeks! Where I have felt that I need to give up! But I don't want to. It seems that I am!
These few weeks my attitude towards Gastroparesis has been very harsh!!! I have said on numerous occasions that I don't care anymore! Just eat. It doesn't matter if I vomit it! Which I did 100%
Confession time!! I have eat chocolate, orange, rice, chicken and on and on the list goes!!!! After each time within seconds I vomited. Which in turn made me extremely Nauseas, bloated, vomited and mostly in extreme Pain!!! And every time I ate I hid it from my parents. Eventually they found out because I stayed in bed all day long, missed school and had turned very pale with dark circles under my eyes!

I know what the consequences are but lately I just haven't cared what so ever!!!
I pray that someday soon I will be able to eat without being in pain and vomiting!

Hafsa x

Monday, 16 January 2012


My Exams finally over stress has had a big impact on my symptoms has made extremely worse!
I know people and I even say try not to stress but it's easy said than done.

So I say try very hard not to stress!

Love Hafsa

Sunday, 1 January 2012

Happy New Year

I wish you

12 Happy Months 
52 Funny Weeks 
365 Love Days 
8960 Good hours

May the the best in 2011 b the worst of 2012 :)


I wish You all A Happy, Healthy, amazing, spectacular, New year!

Hafsa x