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GIFT blue logo copy 2Life and Disorder – Living with Gastroparesis*

It’s been a while since I last wrote my blog and it has been another rollercoaster. The big news is I finally have my gastric pacemaker! I had the operation at the Royal Free Hospital in London – I was so impressed with the care I received and I would like to thank Mr R, Prof E and all the staff on Floor 12.

My journey to get this far has been two long years paved with research, letters, three funding bids, four cancelled operations, humiliation, broken promises, a river of tears and jumping through many fiery hoops, to “justify” my entitlement for something that may not even work. But I live in hope.

It was with great trepidation that I went for pacemaker operation, as my last stay in hospital has left me scared, scarred and still having nightmares. I hope that writing and sharing this experience may help me to get over it.

In August I was admitted to the Queen Elizabeth Hospital, Birmingham, to have a surgical jejunostomy feeding tube fitted: this would allow me to be fed into my tummy. The operation is carried out under general anesthetic, with which I have a history of documented bad reactions. It causes me to hallucinate, to appear out of control and to have no idea of what is going on or where I am. Add into this prescribed strong opiates and you have a dangerous combination.

I should have known things were not going to go well when, after being admitted, I found a Sister going through my bag, without my permission. She said she had seen strong drugs on top, I explained to her, they were actually my prescribed medication and I was happy to hand them over to her. Following this incursion, things become very blurred, his Lordship (my husband) told me that, following the procedure, I was lost for four hours, when the hospital could not even tell him what ward I was on!

iv-standEventually he found me, I was apparently pumped full of strong opiates and with the general anesthetic did not know where I was and was out of control. Instead of recognising the documented problems I have, the staff decided to call their security guards. I was “kettled” into the bathroom by three burly males and ended up with what felt like two broken toes (these are still not right). It was only thanks to a consultant who recognised what was going on and had me sedated that I was spared further injury. His Lordship informed me that even the security guards had realised that my situation was caused by the prescribed opiates. Following on from this things went downhill: I was left for 14 hours without any fluids and continually throwing up. I was discharged dehydrated and with an IV cannula still in my arm.

The next day His Lordship came home from work, and found me collapsed, dehydrated, sick and unconscious. I was soon back in A&E, where I was treated with respect: this did not last long as I was transferred to Clinical Decisions Unit (CDU). The average stay in CDU is meant to be a day and so I did not upset the statistics I was moved everyday for five days around the unit. During this time I never saw a gastrointestinal (GI) doctor; I was confronted by a sister who said she would discharge me immediately, when I begged not to be moved again; flashed at by a male patient who exposed himself when I opened the door to “vacant bathroom”. (This caused much amusement to the staff I reported it to, I am still laughing – not.) On the Friday night, the staff decided I did not exist and cleared everyone out of the ward except me and turned the lights off. On the fifth day, I once again refused to be move, so they called the security guards and so I, a five foot three woman, attached to an IV and a feeding pump, too weak to even feed herself was moved by three big men, in a wheelchair, sobbing.

Eventually a male charge nurse, to whom I will be forever grateful, informed my consultant what was happening, and a bed was found for me on the GI ward. There I was treated properly with care and respect and I was finally discharged after a two-week stay.

This alas was not the end as I came back after my stay in the London Royal Free Hospital informing me I no longer had the care of a dietician, and would be under my GP’s care: this had never been discussed with me. I had already encountered issues with trying to access this care, with both the community and Queen Elizabeth dieticians hitting me back forth between them like a shuttlecock over whose responsibility I was. So at a time I need support, help and advice, I have been left feeling very stressed, scared and vulnerable. I can speak to the gastroparesis nurse at the Royal Free and my GI consultant in Birmingham, but once again I have to fight the system for the care that should be there without question. Have no doubts, I will continue to battle and do what I need to give myself the best chance and to raise awareness of this vile and life changing condition, after all nobody else will!

Finally Good luck to Lauren Dobbs in her fight get a gastric pacemaker funded by the NHS. Good to see Paul Burston MP is raising awareness of gastroparesis in Parliament.

*Gastroparesis is a chronic condition in which the muscles in the stomach don’t function normally. Ordinarily, strong muscular contractions propel food through the digestive tract. But in gastroparesis, the muscles in the wall of the stomach work poorly or not at all. This prevents the stomach from emptying properly and results in sickness, nausea, constipation, pain and malnutrition. Gastroparesis can be caused by diabetes. There is no cure for gastroparesis.

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