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!

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"

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.

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

Changing Blog NAME!!

The blog name will bechanged from
www.hmgastroparesis.blogspot.com
to
www.smilingwithgastroparesis.blogspot.com

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!) www.facebook.com/giftuk and my blog http://smilingwithgastroparesis.blogspot.co.uk/p/what-is-gastroparesis.html 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