Help me get the life changing surgery i need ♡

Hi Everyone, My name is Emily and i need the life changing surgery of a Gastric Pacemaker due to severe Gastroparesis.

This is a long term, rare and chronic condition that means the nerves and muscles in my stomach are in a state of paralysis and cannot digest food in the way a normal stomach would. This means i am in incredible amounts of daily disabling pain, vomiting between 1-30 times a day amongst many other symptoms that impact every aspect of my life.

 

I have had this condition for 5 yrs now and is believed to have been caused by Type 1 Diabetes that i have had for 14 yrs. This is a condition that is challenging enough on its own. My new gastro Consultant has referred me instantly for this surgery and said im a great candidate and is confident that this could improve my condition. The surgeon said that this could improve my condition by 50%.

 

Recent scan results have shown that my condition has now become severe, that i have severely delayed gastric emptying and that 85% of food remained in my stomach after 4hrs (a normal result is 0-20%). The Dr explained that this is the cause for my extreme, debilitating pain and constant nausea & vomiting amongst other symptoms. An endoscopy showed that i have Stage 3 Esophagitis, an ulcer and Barrets Metaplasia in my Esophagus due to the damage and injury to my to my Esophagus after 5yrs of vomiting undigested food, bile and acid.

 

Currently around 6 days a week i am in severe pain, disabling and debilitating at times and constant vomiting, nausea & severe heartburn. I am unable to even walk or communicate properly during flare ups and at times need assistance with the basics such as washing myself. I am on around 30 tablets a day not including regular morphine, tramadol and anti-sickness medication. This surgery consists of a pacemaker being fitted to the wall of my stomach that sends electrical currents to aid the digestion of my food.

 

I have written below alot of what i went through if you would be interested to read.

 

I became extremely ill 5 yrs ago and saw a private Dr as i was having to have so much time off work, i was told i had IBS and referred to a dietician. Over the years i have deteriorated, my symptoms have increased and become debilitating resulting in over 3yrs out of the last 5 spent as an inpatient in hospital, the longest being 9½ months.

 

 I began vomiting violently and in constant pain everyday of the week amongst other symptoms (pain & vomiting being the main ones) After 2 yrs i was still undiagnosed and told that it mental health related, somatic pain and that i was making myself sick. I waa also accused several times of going to hospital seeking morphine. I had lost around 6st by then, leaving me at 5st 3lbs needing NG feeding tubes and severely malnourished. I could not even keep the feeding tubes down and would vomit them as soon as i had the feed. The next step was to insert a permanent NJ tube (that bypasses the stomach completely) however the specialist said i would also just vomit this up the same way as i was sick repeatedly even when there was nothing in my stomach. At a loss of what to do i was admitted to the National Inpatient for Phsychological medicine (NICPM) in Leeds where i had 2 admissions, 1 of 9½ months and the next year for 6 months. I was under intense therapy of CBT and saw phsycologists, physychiatric drs and mental health staff daily to come to terms with what was happening and had to discuss alot of past trauma and only then would my health improve. Throughout these admissions i was extremely ill and would need regular admissions to St James' for IV treatment of fluids due to dehydration, Potassium & Sodium due to low electrytes because of the amount of vomiting and also anti-sickness and pain relief. Something which would continue to happen until the present day.

 

 Whilst on this ward i was diagnosed with Gastroparesis. I was so relieved and it was the best bad news i could have recieved. This meant i finally had a name for what had so suddenly stripped me of any quality of life i had and that it wasnt caused by mental health. Unfortunately i was still told for yrs to come that my mental health was then exacerbating my symptoms and i shouldnt need so much medical help. That if my mental health was in a better state that my condition would have mild effects and be manageable with dietary changes and long term medication.

 

I had several scans/tests etc which showed i had a physical problem however was still told they were made worse by mental health, this meant i still had to have regular therapy. I knew i was fine mentally and knew in my head & heart that there was something wrong. I was so angry everyday that nobody would listen to/believe me. I was so physically and mentally drained, exhausted, vulberable and weak and scared feeling there was no way out that i tried to end my life on 2 occasions. Thankfully it wasnt successful however i was then sectioned which only gave the drs more reason to believe it was mental health related and actually by then, after what i was being put through was struggling massively with my mental health - but only because i thought i had no way out. I was trying everything in my power to help myself and i was still so poorly. Every professional was saying i am in control of it, i tried so hard but i couldnt stop what was happening to me, all i knew is that i, myself werent doing anything to cause it.

 

Alot happened in that time, i was so malnourished that i was at risk of re-feeding syndrome if i did eat. I had to be pushed around in a wheelchair as i wasnt allowed to burn any calories. I was diagnosed, undiagnosed, rediagnosed, diagnosed with other conditions etc.

Anybody who knows me knows i love to eat, i love my food however now eating means that i will be sick, yet have to eat for the small amount that does digest.

 

Fast forward a little i was still in the same position with a good day here and there but having to be cared for by family & friends to do even the basics like washing myself and checking my blood sugars and insulin. I could not care for myself and it was so hard to realise this.

 

I had been on sick leave for so long that i had to resign as there were no chance id be back at work anytime soon. This meant i could no longer pay my rent so became homeless whilst in hospital having the LGI as my address and then once discharged lived with a friend for 3 months until i was able to get a council flat. I lost so much confidence and pride losing my career and house to then having to claim disability benefits. My savings that i had for a mortgage had gone, i had nothing but that to live on for a long time as i went 2 yrs without claiming anything because i had no explanation to why i was ill and was expecting to make a full recovery.

 

 I continued being admitted to hospital only days after being discharged over and over with only more and more medication. (in the last 2 yrs i have had 36 hospital admissions)

 

 My gastro consultant had discharged me long before this explaining that i have Cyclical vomiting syndrome, EPI and Functional vomiting (vomiting conditions that have no explanation) and that there is nothing else that they could do. All of my medication was oral and with constant vomiting i rarely could keep it down so my conditions were basically going untreated and no pain relief unless is was given in hospital by injection or IV.

 

 I have missed so much in these 5 years, 4 xmas' in hospital, 4 New yrs, every occasion you can think of, weddings, bdays, family funerals, baby showers etc. Even the smallest of things like going for a walk, a day out, seeings friends and family. I have a fear now of going too far from home as i often need to rush home. I can be absolutely fine 1 minute just food shopping for example and within minutes could be doubled over in pain and vomiting and have to leave. If i do go out i need to plan everything such as if there's anywhere nearby to be sick, how quickly i could get home, carry a bag full of medications etc. 

 

I finally got a referral to a new gastro consultant in September who referred me straight to a private surgeon, she said i am a great candidate and is confident that this will improve my condition. As the surgery is no longer on the NHS i need to pay £9,500. My surgery is on 11th November 2021. I have initial funding from a wonderful donor however this needs to be paid back as soon as possible.

 

I am very well educated on my conditions and have done and tried everything possible to ease my symptoms, such as following a Gastroparesis diet and making sure my Diabetes is well controlled.

 

I cant get the last 5 yrs back but a i am focussing on what i can do going forward. I have ambition and dreams. I am staying positive and have worked so much on my mental health that ive even been discharged from them for over a year now. I am so determined to find myself again and what i am passionate about. A 50% improvement would be magical. If i could have halved all of what i have gone through that would have been amazing. I now have a light at the end of the tunnel, something positive after everything being so negative for all of them of absolute years of hell.

 

I would like to thank the wards i have stayed on over the years at St James' and LGI in Leeds & the NHS. It has not always been a pleasant experience for me however i would like to give the attention to every single staff member that did help, support or believe in me. I am forever grateful.

If you have read my story i thank you from the bottom of my heart. I cant possibly explain in writing what ive been through, the above is just scratching the surface but i appreciate your time. It is very hard for me to ask for help, especially when it is for money however it has come to a point that i need to ask you, my friends, family and anybody else who has so kindly read this far for your help in funding this operation. This condition has stripped me of everything and im just asking for a chance to live a quality of life that i know i deserve.

Im so excited that ive started writing a mini bucket list of the small things that most people have done which ive not been able to! First on the list for when im better is to get to see my Grandma in Corfu who i havent been able to see since i got ill and after sadly losing my Grandad in December! I CANT WAIT TO LIVE ❤

 

Please donate anything you possibly can.

 

 

Thank you so much for your time ♡

 

Emily Webster