unfortunately my previous page closed down due to reduced activity which is my own fault as ive been unwell and unable to push this page. So far we have raised £1688 which i am so grateful for but we are still are quite a way from the goal for my life changing surgery. This past year hasnt been easy, ive had 3 surgeries, 2 on my abdomen and 1 on my knee. The 2 on my abdomen were to exchange faulty tubes which led to infections and chronic pain. I have now been in hospital for 2 months and my feeding tube removed as they could not get rid of the infection. I am awaiting surgery for reinsertion of my feeding tube and removal of a benign tumour that they believe is intermitently blocking my bowel increasing my vomiting episodes. This lengthy admission has led to multiple blood clots, an undiagnosed heart condition and missing out on multiple family and social events. But as always i live in hope of this surgery one day giving me my life, reducing my hospital admissions and allowing me to work for the NHS….rather than always being the patient!

I am asking for your help for a life changing surgery to allow me to be able to eat solid foods again. For the last 7 years my life has been consumed by needing to know where the nearest bathroom is, vomiting in public places, missing out on social events because im too unwell, weak or in hospital. I missed out on christmas dinners, birthday dinners, Easter Meals. I sit and watch others eat with nothing in front of me, constantly having to tell a new restuarant the reason im not eating because most social events involves food. This is my story.

As many of you know approximately 6 years ago i was diagnosed with a rare condition called gastroparesis or delayed stomach emptying. My journey began with daily vomitting, early satiety, constipation, nausea and bloating. I spent almost 2 years in and out of my local hospital with dehydration, malnutrition and weight loss, being pushed between different specialists being told I had viral gastroenteritis or it was all in my head.

As you can imagine this was exhausting, it wasnt until I saw my consultant for my Ehlers-Danlos another of my life long conditions who discussed the link between EDS and gastroparesis that i got some answers. She sent a referral to A specialist hospital where I met the most amazing consultant who listented and completed a stomach emptying test and diagnosed me with this condition. For a while I managed on soft foods and nutritonal drinks but my condition worsened and I was admitted for an NG tube (a tube from my nose into my stomach) This was my first experience of tube feeding and I spent several weeks in hospital learning how to manage it. I never realised how much it would impact my self confidence, I would get anxiety walking through the streets from people staring and therefore I made the decision to learn to self insert it myself so I could continue to feed at night but remove it during the day. This would allow me to work and socialise without anybody knowing I was “sick”. During this time I was completing my masters in occupational therapy as I had ambitions to one day work in a hospital I had spent so much of my time as a patient. My life went pretty much back to normal. I fed via NG for 12 hours at night and lived day by day. I qualified as an OT and started my first job in an acute hopsital. Everything seemed to be going well despite some minor set backs and hospital admissions along the way. Nothing a few adjustments to medications couldnt fix.

Then covid hit and I was unable to get some of my medications I had relied on for so long and my condition was deterioriating. I lost 30kg in less than 9 months. I was becoming weaker and weaker. Despite this I was still going to work because we all know how stubborn I am. After some discussions with my consultant at the specialist hospital a decision was made that I required an NJ tube (a tube from my nose, bypassing my stomach into my intestine) I continued to push myself to my absolute limits while I waited as we were in the middle of a pandemic and I knew waiting lists were long. I Finally got my NJ in December 2020 but by that point I had pushed my body to its limits, I was severely malnourished and both physically and mentally exhausted. It was at this point the decision was made that I should be in the extremely vulnerable category because my body was too weak from lack of nutrition and significant weight loss and I would now have to shield. I was devastated, I didn't want to let my colleagues down but I knew I needed to focus on building up my strength to get back to work when the time was right and therefore I worked from home for the next few months.

Fast forward to April 2021 and I was admitted for vomiting and managed to vomit up my NJ. A new one was placed and I was diagnosed with gastroenteritis on top of my chronic gastroparesis. I was discharged and 2 weeks later I was having difficulty tolerating my feeds again. I was readmitted and they discovered my NJ tube had migrated into my stomach. During this admission they attempted 4 further NJs, all ended up migrating into my stomach. We were running out of options and I was relying on IV fluids and IV antiemetics to drip feed me via NG for some nutrition. The decision was made I needed a jejunostomy (a tube from my abdomen into my intestines) and a referral was also made for consideration of a gastric pacemaker. During this admission I missed 2 families birthdays, it was by far the hardest admission I’ve been through. A Total a 10 weeks in hospital without any visitors because of the covid restrictions and going through surgery. I felt so alone and it took its toll mentally. I was discharged and had to learn how to live with a surgical tube, readjust to life which had continued to move on while I was admitted. I felt like my life had stood still for 10 weeks yet in that time my nephew was born and my niece was growing up so quickly. I felt both physically and mentally exhausted.

This now leads me to why I am fundraising. I have been living with a jejunosotmy which is a feeding tube straight into the intestines for 6 months. While I am grateful to be out of hospital, I cant imagine living with it for the rest of my life. It comes with its own complications of infections and blockages. I am terrified to go swimming or have a bath through risk of infection. I fear interactions with my niece and nephew because they do not understand the risk of pulling my tube. The Pacemaker is my chance to kick start my stomach again, however the NHS are not currently funding the surgery. I am asking anyone who can support by donating or completing a sponsored event to help me raise the money to please help me be able to eat again, its been over 7 years since I ate a meal! Help me to enjoy spending time with my niece and nephew and not live in constant fear of infections and complications. Help me to continue to help others and have a long career within the NHS that I’ve come to love. This page is not only about raising money for my surgery but raising awareness of a condition that is not widely known about. I am sure there are many others in similar situations to myself. The money raised will pay for the surgery and post operative care.

If by some miracle I go above and beyond the target, all additional funds would be given to research into gastroparesis to help others in my situation and to one of the gastroparesis charities. I would research closer to the time as I can imagine things will change while we are raising money and make a decision based on research and charity events at the time.