Saturday, 25 January 2014


It has been a long time since I have posted an update on me. I hope everyone is well! Our community is getting bigger by the day and it's amazing to have your continued support and every like raises awareness so share, share and educate!

So on thursday I went to see my neurogastroenterologist who is amazing and one of the best one's in the country, I feel so luck to have such a wonderful doctor who spends their time with and treats you like family. So first of all, before we start I would like to take this opportunity to say a huge thank you to Prof Qasim Aziz!

I went to see him after 4 months for a follow up he was very busy as he likes to spend qua lit time with each of his patients listening to them carefully. As you all are aware I have been getting infections after infections due to my jejunostomy tube which is surgically inserted. The pain is unbearable I have taken many courses of antibiotics which work for a few days and then hits me back hard again!

While waiting in the waiting room I also saw my Psychiatrist who is also brilliant and really, really kind and funny! He saw and came gave me a high five because I'll be sing him in February so we can start some new medication and try behavioural therapy for my vomiting can't wait! excited!

My turn came but he was in a conference with other doctors about a complicated case so he kindly told me that he will take longer with them as its very complicated and if I could kindly see his registrar? Althouh I was gutted I understand nd saw his registrar and in the middle he came in and spoke to me about my tube. He said he doesn't want to take it out but would refer me to the nutritionist and surgeon who put this tube in so the can see why its getting infected a lot. His main concern for me was if we took the tube out I would lose weight and be stuck in hospital with many complication that are unnecessary at the moment. And I've doing very well with my weight so far so now I have to bear the pain until I see Dr. Glynn at Royal London Hospital. I've been under his care when they were putting this tube in and he is also a very lovely, caring man.

I've been certainly blessed with such a good team of Doctors!

The appointment was very emotional as I told him I can't take it anymore, I have been trying food everyday and suffering due to it because of the pain and vomiting. His response was very motivational that if I don't help my self no one else can. He said we can only do a certain amount and the rest is up to me, for the first time I felt courage and power that I can do this he said try taking my medication orally and if I'm about to vomit it out, use my "toy" (PEG tube) to aspirate it. He said I should try small amounts of food that are soft and liquify and use my tube to aspirate if I can't handle it but try as best as possible to keep it down. He spoke to me kindly. Me and my father were having an argument about telling him that I'm eating he said I should consider everyone around me because it effects them too. He said I,m a father and your like my daughter and I wouldn't wan a see you in pain your father has been with you from the start never leaving your side. And that made me realise how luck I am.

We are all humans we sometimes ops track of how lucky we are no matter what we are facing. He also said that I am a very mature girl, "in fact like a grandma" and I can become the next prim inter if I wanted too and if David Cameron gave me a chance lol I felt very honoured hahaha.

If I was to describe the out come of this appointment it would be #Motivational #SelfImprovement #uplifting #Powerful

So I am stillwaiting to be seen by Prof Methias at UCLH hospital for my POTS which is effecting me really badly lately I get a lot of falls due to low blood pressure and dizziness :(

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"A Smile Cures Anything"
Hafsa xxx