Saturday, 20 December 2014

Gastro What? Gastroparesis

Great News!

In a bid to raise awareness I decided to write an article about gastroparesis for Huffington Post and it had a massive response being liked 1.3K only on Facebook!
Click on the link to view it -->

All my Love!
Thanks for the ongoing support!!!!

Saturday, 13 September 2014

Article in Huffington Post

My Article that I wrote (Acceptance of Chronic illness) has been published in Huffington Post!

This is exciting news as this platform gives an opportunity to spread awareness for Gastroparesis, EDS and POTS as well as chronic illness in general.

More exciting things coming soon!!!


Saturday, 6 September 2014

Acceptance in Chronic Illness

Acceptance in Chronic Illness

It is known that acceptance of long-term chronic illness is seen as a substantial problem in patients with chronic illnesses. Absence of acceptance can lead to clinical improvements being delayed considerably. It can also lead to poorer adherence to the current and ongoing medical treatment. They may be branded and judged by others as being in denial.

The term acceptance in human psychology means an individual’s agreement to the realism of a situation (a chronic illness) by identifying a procedure or condition without trying to change it or protesting against something that can not be changed. The term of acceptance is familiar to 'acquiescence', which comes from the Latin word of 'acquiēscere' (to find rest in).

There are different types of acceptance but the one we are going to look at is Self-acceptance this is a person’s contentment, loving and fulfillment with themselves with who they are now. This is known to be extremely essential for good mental health. Self-acceptance is an agreement with an individual’s self of self-understanding to appreciate, authenticate, acknowledge your strengths and weaknesses and support who you are at this moment in time.

In the 19 years of my life I have been through a lot of challenges, specifically in the past 4 years. I’m extremely lucky to have had almost a normal life s some people are not that lucky. My whole world fell apart when I woke up one day and started vomiting uncontrollably; at the time I did not take it seriously neither did my Doctor. We all thought it was just a nasty bug that was going around.  Little did I know that I was in for a shock! As time passed I started to get worse. Fast-forward 6 months I came from school and fainted I was then taken to hospital and this became my second home.

I always kept a positive attitude and thought that this too shall pass; that this was just another everyday thing. As days passed in the back of my mind suppressed that this thing that my body had was far bigger than I thought. Yet I kept that though suppressed and denied it everyday of the 5 months I pent in hospital. Here I was a girl who went to school just like any other teenager, played all sorts of sports, helped my mum in anything possible to being bed ridden, never did I think I would need help in going to toilet but I did everything was done in my bed. While my peers, carried on their normal life. I too was once part of that. It is a human thing that we never think of what we have until we loose it. I lost my mobility, my ability to eat, to dress myself even the littlest things such as brushing my hair and teeth.

I was very angry with myself first at taking simple things for granted. I was angry at why I was lying in the same place in pain, agony, covered in tubes one down my nose to my Jej, that I constantly vomited; another from my arm to my heart giving me artificial nutrients keeping me alive yet that could have been the very thing that could have killed me it caused havoc in my body but I needed the nutrients as my weight was dangerously low. I was angry at being poked with needles multiple times through out the day not because it was painful but every needle reminded me of what I had lost.
Days passed theses things continued but I always smiled through it not because I wasn’t angry but because I denied everything that was going on. Doctors and nurses believed I was not in pain because of the fake smiles the laughter’s with my Dad that I put on a show for my dad because he slept in an armchair for 5 months continuously not leaving my side. I had to stay strong for him but inside when he would be asleep I would cry dry tears for the life I had lost. For the life I had now. And the life I could have had or never will have.  Somewhere deep inside I knew I had to come to terms with the fact that my life had gone from being independent to being completely dependent on my parents for everything.

At 15 I had to fight my way to make them believe that all this was not in my head. Who would believe a 15 year old? Especially how the media portrays young women. My Father. But I was never into those things I didn’t read magazines or watched much of TV and I was always trying to be unique and find my own path rather than follow others. Both my father and I fought hard to make them believe that this was not in my head. This was a dark time for us all. My dad had lost his job because he was with me; you can only take a certain time of work before they show you the door. My little brother who was very close with me had problems sleeping at night because I was not home. He would spend the day crying. My mother was pregnant so hospital was not good place for her. All this was a huge emotional roller coaster for us all! I was grieving and denying in secret having bottled up all my feelings after trying the nasal tube for the 10th time that day after constantly vomiting it out that bursted into tears that were rolling down my cheeks uncontrollably; they tasted salty. This was the only thing that I had tasted in a long time. All the emotions I had hidden and bottled up behind a smile exploded. I was grieving. 

We all go through grieve during sometime of our lives. Weather it is loosing a close family member, a pet or in my case my health, a diagnosis of terminal illness or a long-term chronic illness. Above I have mentioned some of the stages of grieve they include denial, anger, bargaining, depression and acceptance, abbreviated DABDA. This also known as the Kübler-Ross model. To find out more click here.  Every individual is different and will go through theses stages differently for short or long terms, as there is no wrong or right time limit. The idea was established for bereavement and terminal illnesses; it can also be applied to chronic illnesses.


The first stage, a reaction that follows after loss is denial; when the reality is hard to face we deny everything. In my case I always hid my loss behind a smile and denied that this chronic illness will be long-term and that It will not get better. I though that in the coming days it will get better and kept giving myself false hope. What this meant was that I was in such a shock that I tried to shut everything and everyone out of the reality I thought that if I kept smiling everything would be normal. I pretended that that it wasn’t real and tried to protect myself from the truth. However we cannot always stay in this stage at some point we start to question about our feelings and the situation.


The good old “why me? It’s not fair!” stage believe me when I say this I still go through this most of the time anger surges through my veins and when I’m in this stage I tend to lash out my anger at my family members. Though they understand why, this shows that denial cannot continue anymore. During this time I feel guilt at the same time for lashing out but we all go through this at sometime of our lives. Anger can mark itself in distinctive ways. People can be angry with themselves, or with others, or at a higher power, and especially those who are close to them. To those who are dealing with individuals like this should remember to remain detached and nonjudgmental.


This stage compromise of hope that the person somehow feels that they can reverse or undo what has happened to them somehow just to avoid a cause of grief. In this stage those with grief may say things such as “I'll do anything for a few more years."; "I will give my life savings if…"
. This is often negotiated with higher power. This is a normal reaction to feeling powerless and vulnerable. I have thought things such as “IF only we had reciveved medical attention sooner…” or  “If only my Doctor believed me…” or sometimes my father would say “If only we got a second opinion from another doctor…” This sort of a of weak wall of defense we put up in front of us to protect us from the painful reality.

The fourth stage is one of the appropriate responses to grieve and loss it is natural to feel sadness, fear, regret and uncertainty; this indicated that the person has began to accept his or her situation and paves the way to acceptance.  We all go through this stage where we feel as though “What’s the point… I’m going to die soon…” or “this will not get better why bother with anything…” individuals feel a void in them. When I’m in this stage I tend to block everyone out. I don’t pick up phone calls from friends and family and refuse visitors or going anywhere. Sometimes it gets so worse that I refuse to take my medication. Depression could be referred to as the dress rehearsal for the 'aftermath'. It is in a way acceptance with emotional attachment.
In this stage a person begins to come to terms with their chronic illness, terminal illness or a death of a loved one and of that of unavoidable future.  "It's going to be okay."; "I can't fight it, I may as well prepare for it." This stage is different to each individual. This does not mean I’m okay but only that I accept my mortality. I still go through anger, denial, depression and barging- I’m only human.  I have good days and bad days. On the good days I tend to enjoy myself by doing my favorite hobbies such as reading, photography or going out for a walk. However on the bad days I don’t want to get out of bed, I cry myself to sleep and questions such as “why me?” arises in my head. I lash out at family members or confine myself to my room. Accepting is just like acknowledging a new norm. your norm was different before you fell ill to what it is now.
Acceptance has come to the point form me is that I want to help others in my situation and that’s why I tend to blog about it so that others will find that they are not alone.
Please share and leave a comment so that others can benefit from it too.

"Acceptance - Types Of Acceptance." 8 Apr. 2009. Law Library - American Law and Legal Information.

Kübler-Ross, E. (2005) On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss, Simon & Schuster Ltd, ISBN 0-7432-6344-8
Santrock, J.W. (2007). A Topical Approach to Life-Span Development. New York: McGraw-HillISBN 0-07-338264-7

Shepard, L. A. (1978). Self-acceptance: The evaluative component of the self-concept construct. American Educational Research Journal, 16(2), 139-160.

Telford, K., Kralik, D., & Koch, T. (2006). Acceptance and denial: implications for people adapting to chronic illness: literature review. Journal of advanced nursing55(4), 457-464.

Zalewska, A., Miniszewska, J., Chodkiewicz, J., & Narbutt, J. (2007). Acceptance of chronic illness in psoriasis vulgaris patients. Journal of the European Academy of Dermatology and Venereology, 21(2), 235-242.

Hafsa :) xxx

Thursday, 31 July 2014

Olanzapine Vomiting and Retching Reliefer!

Hello Everyone!

I hope you'r all well (as best as you can be) and that your having a Good day/ Night.

Quick Update:

It has been a long time since I last posted on here, this was dues to me being feeling unwell after getting my new jejunostomy tube. The tube placement it self was not painful but I had to get used to the feed again from the beginning starting with 5mls/hour. I'm pleased to say that my feed rate has increased and gone back to normal of 110mls/hour and that I'm feeling much better! 

Good News! 

I will start with this quote from my Doctor "we need to stabilise the gut by stabilising the brain".
My consultant has seen many patients like me with the same problems, feeing tubes and have got them better and living without a tube. One extremely important advice he gave me was "don't loose faith!" He is the only doctor that has told me that  there is a life for me that does not involve doctors having to punch through my abdomen making holes to feed me through it and that is extremely important to remember.

My consultant said that he will start me on Olanzapine (Zyprexa).  Olanzipine is a sedating medicine so it will help me sleep and will help stimulates my appetite. It comes from a family of drugs called major tranquillisers and also called antipsychotic. He said to me its important to remember that he is not giving it to me because I'm psychotic; he is giving it to me because it just so happens that the brain chemicals and the area of the brain that it works very good at helping with retching used in patients who have serious vomiting problems to stop them vomiting. It is a drug he prescribes commonly with the combination with citalopram. It does not come in liquid form but come in tablet form that melts on the tongue in seconds. He said that I would have to take it at night time.

Furthermore, my consultant has been amazing and that I'm so lucky to have him. He says one advantage I have is that he has seen me quite earlier on in my illness; people struggle with this problems for year because they are told they have an eating disorder. when I was admitted in some of the doctors had written to him to ask if he is sure its not an eating disorder. He said he had to be quite careful not to be rude he doesn't think this is an eating disorder! (thank God! finally someone believes me! I'm not anorexic or bulimic!). The problem is that it has an appearance of looking like an eating disorder particularly in eyes of an untrained eye and it can even be argued with eating disorder experts that it isn't a typical one. he doesn't buy it he says "its to an eating disorder. Thats not how he's looking at it or treating like it. yaaaaay!!!! finally!!!! it was extremely good to here that. don't let them upset you don't let them put you off was what he told me! And that is really comforting.

There are a couple suggestions he was going to make they were: 
Firstly Olanzapine people may start looking at you funny because its used to treat schizophrenia -ignore them. I'm getting it for the problems I have not someone else. Increase citolapram with it. persevere with  it even if I'm retching it may take longer but will help.  Educate the doctors involved with me. That I must not be treated as though I have an eating disorder. he has seen people after 5-10 years stuck with the diagnosis of eating disorder. This is not an eating disorder! 

Fast forward 3 months! 

It has completely stopped my retching to zero! I used retch 10-15 times every half an hour! It has helped my nausea a lot to the point where I have stopped taking cyclazine! It has also helped stop vomiting not completely but has reduced a lot! I now only vomit when I eat! Also whereas before every time I ate I would vomit within seconds and now food stays down longer sometimes half an hour or one or two hours. Although at the end of the day I still vomit the for I eat it has been a MAJOR achievement! Positive improvement.  Its been magic!

I suggest all my GP sisters to go and try it out ask your doctors and maybe it will help some of you! My consultant has told me there is much more work to be done until I'm not dependant on the tube but we will get there. I will be seeing him next month and can't wait to see what else we are going to try.

Thank you for reading Please share this it may help someone.

Lots of Love Hafsa xxxx :)

Monday, 19 May 2014

Jejunostomy Feeding Tube Changed!

View from the hospital window Floor 11
On Wednesday 14th May evening I realised my   JejunostomyTube (jejunostomy feeding tube (J-tube) is a tube surgically or endoscopically inserted through the abdomen and into the jejunum (the second part of the small intestine) was leaking from the stoma site, I had terrible pains for a long time. When I first had the tube inserted 18 months ago I had no problems with it. No pain whatsoever. But since December 2013 I've had dozens of infections with the tube. It would leave me in extreme pain to the point where breathing would hurt too much! Leaving me in agony.  It came to the point where it became resistant to antibiotics and that was scary.  The pain would feel like I was being stabbed constantly unable to find the right position to sit, stand or lie down.

My dad was very supportive and asked If I wanted to go to A&E (it was almost midnight) I didn't go that night but got ready first thing in the morning to go to the royal london hospital. We called before going to tell them what had happened. We arrived at the hospital around 12pm and by this point I was really dehydrated and nauseated due to the tube being split. 

We were very luck and were seen pretty quickly and the on call doctor was a gastroenterologist (It must have been fate lol) I'm really thankful to that doctor he set up things pretty quickly. We thanked him a lot but he thanked us saying you came prepared with everything as we took all my medical notes, medicines and other general things; he said we made his job easy.

After a long struggle of finding a vein for a cannula (three Doctors tried) I guess third time lucky. I was set up with IV fluids and was given Anti-sickness medicine (Cyclizine) a point to note It stings a lot but I've become use to it so not that bad.  We were given a rooming A&E for a couple of hours before they could find a bed for me on the wards. Finally, a bed was found and the Doctor told me that they will change the tube on Friday 16th May. I was very anxious that I will have to go to surgery again but that anxiety was pushed away when I was told it will be done by radiology team. So no anaesthetist required.

Friday came I was really looking forward to my tube so I can start my feed and gain my energy and be able to walk without falling.  

I went to the radiology department waited for a while before the Doctor who was going to perform the procedure came to see me. My dad wished me luck and said he is right here with me and to stay strong! I'd like to stay strong for him and my family! They are my rock! 

Figure1) Showing Gastrostomy and Jejunostomy


The procedure was simple and pain free.

I was put on the table and an X-ray was taken first. Then a Tubogram was carried out. What this is a Live X-ray where contrast is put through the tube to see if its in the right place and also to see if it had holes in it.  The feeding tube had many holes further down the jejunum. They said this could have been the reason why i was suffering from a lot of infections.

I was Lucky enough to see all this as the screen was facing me, Its such a wired yet great experience. I mean who gets to see there insides? lol

Then the head of the tube was cut so a wire can go through the tube. The wire was guided carefully in a few occasions the wire got kinked or stuck this was easily fixed by pulling it out and was re guided it.

Next the old tube was pulled out slowly while the wire was held by their hands to avoid pulling it out with the old tube.  The old tube had turned completely black and seemed eroded. Afterwards the new tube was guided through the wire and this too kinked a few time it didn't hurt, it just felt wired! an X-ray was taken it seemed in the right place. To be certain contrast was put through the tube to see if it was in the right place. The Senior doctor said they ad managed to put it further down in the jejunum so if any case it gets pulled a little it still would be in the jejunum.

Finally the wire was taken out slowly and the heads and coup of the tube were placed on it as well as this water was injected into the tube it felt okay no pain whatsoever. Just weird! I had stitches done to hold the tube in place.

I was back up on the ward and was told to start water for a couple of hours then the feeds and that I can go home. I started the water slowly and it felt fine.

I hope my experience of changing the tube helps some people going through this. It may seem scary but your not alone! If you have any further questions to ask feel free to message me x

The New Feeding Tube


"Making the invisible visible!"

Thursday, 24 April 2014

Overcoming Obstacles!

Overcoming Obstacles!

Great news guys!I have so many exciting updates for you all! One at a time...
I'll start with an apology of not blogging for a long time as I have university assessment and exams. My usual readers would see that the blog has a fresh new look I hope you like it! They will also notice that it has new pages too that I hope it will help others! The following is the page with specialist doctors in the UK.

So for 4 years I have been stuck at home or in hospital unable to travel because of all the complications that come with my illness. It is not easy to travel when you have a cocktail of medicines that need to be taken at least 10 different time of the day! 

But I did it! I went out of the house for the first time in 4 year and went to my uncles house! who were so kind and caring. He is a Doctor himself and he had taken a day of work to stay with us and take us out on trips! 

He said to me its my day and that I get to choose where we go and what we do! 

The 2 days were brilliant! We went to a really beautiful park with amazing weather! and although I couldn't do much because I had such low energy and was in pain. It was just wonderful to see my family and friends around me playing and watching them made my day. 

I did a naughty thing that day... we all went to get ice-cream and I had one too! (oops! as I was to find out) I wasn't treated with disapproval and annoyance they just accepted that it was my choice to have the ice-cream and let me tell you it was delicious! obviously when I ate it I had to vomit it out so I went to a corner and vomited, but it was so worth it because just for a moment I felt normal healthy person! 

This trip took a lot of planning! since I had to take all my medications, feeds, feeding sets, syringes injections and so on... We calculated the things we needed to take with us enough for the time we were going to spend. This was made easier because my uncle had already given me a room with space where I could take my medicine and basically had thing prepared for me. Thank you dearest uncle! 

One more thing I have new pet fish whom I've called Panther and Tiger! They are lovely and It has given me to do something. They are mine and its my responsibility to look after them and this is a great feeling that yes I can do things that normal healthy people can do too. My dad has agreed to get me a kitten soon so EXCITED! I just have to convince my mum lol time for those big cat eyes to flatter at her. Again it will give me responsibility and a friend.

The blog has been doing great and please Read. Share. Educate. Please also share the Facebook page so we can make this invisible illness visible! 

Hafsa x
"A Smile Cures Anything!"