GASTROPARESIS TINA

Hi my name is Tina i'm creating this Gofundme page as I have Gastroparesis & need to raise funds for Gastric Pacemaker

4 years ago my life changed, I was in pain & being sick when trying to digest food, feeling really tired generally not well. So I made appointment to see my GP.

She sent me for various tests but they were coming back as unable to find anything, until I had a gastric studies done at my local hospital where it showed my food was not being digested properly.

So then I was sent to London for another gastric studies test where it showed slow digestion of food so they made appointment for me to see a specialist in this condition based in Chelmsford Broomfield Hospital. He requested that I should repeat some of the tests to prove the previous ones that there was no misdiagnosis. Two years ago I had another gastric studies test done in Broomfield Hospital where I had porridge to eat then had to blow into a bag on specific intervals roughly every 10 to 15mins.

The results come back as Gastroparesis which basically means my stomach is paralysed it is also know as delayed gastric emptying this is a debilitating illness, it is a disorder that slows movement of food from your stomach to your small intestine.

My symptons were becoming severe whereby I was unable to do normal activities, whenever I took as small spoon of food I was in agony & feeling sick, I was given various medications to help me cope with the symptons without any affect. I had Botox injections that was administered into the Pylorus muscle this is a valve that opens and closes during digestion but this was unsuccessful. So it was decided for me to have a NJ tube (nasojejunal) put in place through the nose and through to the jejunum (small bowel), to relief some of the symptons.

In August of last year this tube collapsed so a new one had to put in place, sadly we had complications with flushing the tube so I had to go back to Endoscopy department for them to resolve, as it was becoming a week without me having any nourishment they managed to resolve the problem but it was not going to be a long term fix. So it was suggested I should have a more permanent feeding tube place which is called Jejunostomy tube, this is placed through the skin of the abdomen into the midsection of the small intestine.

I have suffered complications with this tube whereby I have recurring infections, inflammation, every 4 to 6 weeks I have to go back to the hospital to have the sutures replaced around the disc that holds the tube in place. I've had approximately four infections so far, the area around the tube is always inflamed so it is very painful. The medical team said that my body is rejecting the tube but unable to give me any time frames which I can understand.

There is an operation I could have which is a Gastric Pacemaker which would give me back my quality of life & enable me to eat properly but it is not a cure, sadly this operation is not funded by NHS England, if I lived in Scotland, Ireland & Wales the funding for this operation is available. My consultant has sent two IFR (individual funding requests) to NHS England but within a week they have come back as rejected/declined, even when I had a TIA/Mini stroke back in November 2022 the request was rejected/declined, I feel these requests were reviewed by admin person rather than someone medical because the decision was made to quickly from receipt of the request.

At the moment you could say I'm living on burrowed time, as I don't know when this new tube will fail, my life expectancy has been reduced while having this condition & being on this type of feeding tube, I just went my life back where I can go out with the family for meals where they don't feel horrible eating in front of me, I can go back to exercises classes, back to driving, going on holidays, but most of all to eat a meal without experiencing any pain or being sick. Not only does this condition affect me but it is also affecting my husband who is now classed as my main carer & my family, it is hard for them to see me like this, also for them to get their head around the condition

I’m classed as disabled & chronically ill, I have a disabled badge as I can’t walk very far with this condition without being in pain or feeling nauseous. I literally can’t do anything for myself as a result either of the condition or where the tube is placed, I’ve lost my independence due to this illness, i'm constantly feeling fatigued

Hi i'm Tina's husband please can you help my wife with the funding for operation to fit Gastric Pacemaker? she is unable to do anything for herself due to this condition. For example I have to help her get dressed & undressed, put her shoes & socks on because where the tube is positioned it prevents her from bending otherwise she be in pain as the tube is within her stomach wall. When she has a shower I have to be in the room with her. She has no energy as the feed doesn't contain all the nutrients she would normally get if she could tolerate food. I'm doing the housework as I mentioned earlier she is unable to bend, the medical term for where the tube is placed is called a 'Stoma' site. She carries a medical rucksack with the feed attached which can be heavy so she gets very tired, therefore I have to help her get in & out the car. I'm more than happy to do these things for my wife as I love her so much & hate to see what this condition is doing to her, she is afraid she is losing her independence. I'm now classed as her main carer, she has to have someone with her all the time when she is outside. I hate seeing my wife deteriorating in front of my eyes. I would be very grateful if you can help me get my wife back to a better quality of life.

In advance I thank each & everyone of you who contributes to this Gofundme page, you can't imagine what a difference this would make to both our lives.