Stephanie Jane’s Story

September 6, 2020

Writing a blog about your experience may sound easy, fulfilling, helpful and may even be slightly nerve-wracking letting others perceive your gastrectomy journey, but writing this has given me a sense of purpose and eager to do more. Recently I have felt my motivation has become misplaced needing more for myself but not really knowing where to go? What to do?

Maybe you’re like me…you’ve started the gastrectomy journey or your years into it and life throws you a curve ball and you must think about what your next move is? For me Just knowing there are others out there going through the same experiences of this illness all over the world helps restore faith in what is going on around me surpasses what I envisaged from this group of seahorses.

My journey started in 2008 I was in my late teens with severe bile reflux, medication which wasn’t helping and a hiatus hernia operation looming. Been told this was my best option and totally naïve having never been ill before I went ahead not knowing the full consequences may be more than I bargained for. The operation came around and seemed a success. Three months in a few difficulties, nothing I was assured wasn’t” normal” for the fundoplication surgery I was managing. Eating was slowly becoming more difficult, gastroscopies and dilatation’s every couple of months it dawned on me that the operation I had chosen was not in the slightest my best option. All I wanted was to be a normal person starting my 20’s with the world at my feet which sadly was not the case.

Two years after my operation 2010, waking with what I thought was flu (being convinced by doctors for months I was too young for anything to be wrong) living solely on rice crispies, being in agony for months, seriously strong painkillers and a glued on hot water bottle I knew I wasn’t right. By the end of the day which I recall was Easter Sunday I really wasn’t well constantly retching screaming in pain I went to A&E. It took four days for doctors to stop looking at my notes and pay attention to my symptoms and me as a person not a young opiate taking teen who was desperate for help, reluctantly the doctor offered to do a gastroscopy in a hope of knowing what was wrong. This was where it all went down hill not having a CT scan or a simple X-ray in the emergency department the doctors were going in blind the results were catastrophic. My stomach had been sat in my chest cavity having gone through my diaphragm, the gastroscopy had perforated my stomach which had somehow managed to twist and my bowel had curled around my liver unbeknown to me my life was in gods’ hands. I was a blue light transfer to another hospital where I was met by 4 surgeons at deaths door. The only thing I remember was the kind nurse asking if I was ok to have my pyjamas cut off. I spent 6 hours in surgery where the doctors had told my family the two options they could give me would change my life and I still may not pull through luckily, they chose what would give me the best quality of life if infection didn’t set in. I was taken into intensive care as I’d had a cardiac arrest on the table, being ventilated by a machine with concerned family not knowing what would lie ahead. After a few days I finally went down to going down to high dependency on the strong painkillers (seeing an evil Mr blobby and asking for black forest gateau, vol-au-vents and blackcurrant) I had no idea what happened why I was in hospital I was nervous and scared but put at ease by the professionals around me.

After a few days I got the news I had developed septicaemia in my left upper quadrant of my chest the news at the time was upsetting another trip to intensive care and a breathing tube really was my worst nightmare but because my heart and lung couldn’t function I had no choice. I was given what looked like a huge space helmet to help and had an ultrasound where the doctors tried to syringe out but the infection unfortunately it was too bad by this point and I needed another operation. Two blood transfusions and twelve days later I had a left thoracotomy which was possibly harder than having my stomach removed my journey began to recovery.

It hasn’t been easy another 4 operations every PEJ, PICC, Hickman, neck line you could think of I was hoping the worst was over and my life would start… It did in December 2012 after a very carefully monitored pregnancy I gave birth at 34 weeks to a healthy baby boy… my life could finally start the hospital stays and operations after my son didn’t seem so hard they had meaning and purpose I had someone to get better for.

September 2013 was my last operation due to a diaphragmatic herniation of the bowel. within four days of getting the right medication I was walking, 10 days after I was ready to go home to my little boy.

Its nearly six years since my son was born. a whole six years of a roller-coaster ride which I

NEVER expected to be my life. It’s funny some might say surprising that I’m so grateful for my stomach less life because without what’s happened the people iv met, the journey which lead me to where I am right now, going from strength to strength changing my life to how I need it… even coming off every medication that was dulling my journey and the help of my amazing family, a close group of friends and a new man in our life who has taken everything on like having no stomach is “normal” not baggage. I’m not saying I’m perfect, in fact I’m not and that’s the beauty of my life.

I’m currently 8 years on still needing medical tests and baffling doctors making them work a little harder to get me somewhere near comfortable with my health but looking back at the many operations the amazing medical professionals especially the anesthetist with whom I owe my life to before the other amazing professionals got involved and all the people who have given help I’m still here still fighting with a smile on my face, eating so normally for the first time in a long time even enjoying food, dealing with the dumping and blood sugars. I know in my heart through the anxieties, the depression and the struggle to the happiest times of my life I am HERE.

To everyone dealing with the loss of their stomach the hardships that comes with it and the never-ending questions you may have, trust in yourself. Yourself is what is keeping you alive. you might not feel like it will get better you may feel like everything is an uphill battle and all you want is one easy day, I still do! You will get it. My only motto since having a gastrectomy is… “one day will feel like the worlds ending but you’ll fight and get back up smiling”. I use it from every minute to every hour to everyday if I have to from not doing the house work to not actually leaving the house for a week, having a dumping episode to my depression getting the better of me, you can do it, it might take time it might take more effort to get there but you will. You only have one life at the end of the day living it at least smiling gives me courage to get through it.

Keep smiling seahorses you can and will do it!!

Stephanie has started a Gastrectomy Survivors UK Group on Facebook for those wanting to connect and support each other.

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