Fighting for a Cure
Donation protected
Firstly thankyou for taking the time to read this! I have been waiting for a day where I feel a bit better or pain free, but I have come to understand this may be a long way off- so here it goes!
I was reluctant to do this page, but I really do need some support and help.
My entire life I have suffered with gastro issues, opening my bowels maybe once a month If I was lucky, I always had daily chronic pain in my joins and intense pain and bloating every time I ate, but no specialist could really get a grasp as to what was going wrong.
by 2017 I was having multiple chronic symptoms and was finally diagnosed with multiple chronic illnesses, as a result I had to leave my dream career, and I didn't know that the two years from there would mainly be spent in a hospital bed
I was diagnosed with Ehlers Danlos Syndrome, this is a connective tissue disorder that effects the collagen in my body, but also comes with a whole host of other problems, I have cardiac issues because of this , a mitral valve prolapse and regurgitation, and I have also had myocarditis and awaiting a cardiac ablation ( which keeps being delayed as I keep aspirating food and getting pneumonia)
I live in daily intense pain in my joints, and when not in hospital most my days are spent laid on the sofa for the entire day unable to move from the fatigue and pain.
So people with Ehlers Danlos are high risk for aesthetic being put to sleep and any surgery, as our body's bleed longer than the normal body, and are harder to heal. So basically surgeons are reluctant to perform surgical procedures.
This is why I am asking for help, so in 2017 I was diagnosed with gastroparesis, this is where my stomach is paralysed and takes hours longer than the normal body to digest food, tablets and food spend hours sat in my stomach, this causes me intense pain every time I eat or sip water, chronic bloating, and constant daily sickness and nausea. There is currently no cure for gastroparesis, but there a few things that can be done to hopefully improve the quality of life, but the NHS do not fund them .
The first option I have is a Gastric pacemaker, this is performed in an NHS hospital in Essex, but the patient has to self fund, the cost is £18,000, and its capped at £30,000 as it depends if I am in intensive care afterwards and what the recovery is. If it is successful then it needs replacing every 10 years. This would speed up my gastric emptying and hopefully increase my quality of life a bit.
The second option, which is the most effective option, and the one that I am hoping to take, is called a POP procedure , this is performed at the Cleveland Clinic, in Ohio a specialist bowel hospital. No hospital in the UK performs this procedure. This is where they snip a part of the end of your stomach off , and it allows your tummy to empty better. the quote for travel, accommodation and the procedure is around $40,000.
Another thing that can be effective to reduce the bloating and pain on some people I have been advised is to take up acupuncture on the vagus nerve ( mine is damaged this is why I have the POTS syndrome and cardiac issues and the bowel). This can be really effective at helping calm people gastroparesis. This is performed in a clinic in London and costs £100 a week, I am really wanting to try this , but because I cant work due to the illness , I am hoping to raise money to help support this.
I also would appreciate any help, as I have to get things like monthly probiotics that are £79 a month, special shakes that are £200 a month, its all adding up.
I only open my bowels once every 2 months, due to bowel dysmotility and dysmotility of the entire throat. I can't be considered for surgery yet until I have the heart under control and the gastroparesis. I am hoping if I can at least ease my gastroparesis , then I can get a feeding tube as I am loosing so much weight and choking on food sometimes when I eat it, and then it will hopefully ease pressure on the bowels, on a good day I can manage to eat some solid foods but it has to be on the softer side, but this causes me extreme pain.
I am going through the wars at the moment I also have lingual tonsil cyst, that Is blocking some of airways and can't be left. Usually it would be surgery straight away, but due to ehlers danlos and the risk of bleeding too much and other complications, its being run through some MDT meetings. The only other possible if surgery is refused is to get private laser surgery on it to remove the cyst, but I shall update this page if this is the case .
I hope this all reads well, as I am in intense pain writing this.
I really do thankyou for any support
love
Anna xx
I was reluctant to do this page, but I really do need some support and help.
My entire life I have suffered with gastro issues, opening my bowels maybe once a month If I was lucky, I always had daily chronic pain in my joins and intense pain and bloating every time I ate, but no specialist could really get a grasp as to what was going wrong.
by 2017 I was having multiple chronic symptoms and was finally diagnosed with multiple chronic illnesses, as a result I had to leave my dream career, and I didn't know that the two years from there would mainly be spent in a hospital bed
I was diagnosed with Ehlers Danlos Syndrome, this is a connective tissue disorder that effects the collagen in my body, but also comes with a whole host of other problems, I have cardiac issues because of this , a mitral valve prolapse and regurgitation, and I have also had myocarditis and awaiting a cardiac ablation ( which keeps being delayed as I keep aspirating food and getting pneumonia)
I live in daily intense pain in my joints, and when not in hospital most my days are spent laid on the sofa for the entire day unable to move from the fatigue and pain.
So people with Ehlers Danlos are high risk for aesthetic being put to sleep and any surgery, as our body's bleed longer than the normal body, and are harder to heal. So basically surgeons are reluctant to perform surgical procedures.
This is why I am asking for help, so in 2017 I was diagnosed with gastroparesis, this is where my stomach is paralysed and takes hours longer than the normal body to digest food, tablets and food spend hours sat in my stomach, this causes me intense pain every time I eat or sip water, chronic bloating, and constant daily sickness and nausea. There is currently no cure for gastroparesis, but there a few things that can be done to hopefully improve the quality of life, but the NHS do not fund them .
The first option I have is a Gastric pacemaker, this is performed in an NHS hospital in Essex, but the patient has to self fund, the cost is £18,000, and its capped at £30,000 as it depends if I am in intensive care afterwards and what the recovery is. If it is successful then it needs replacing every 10 years. This would speed up my gastric emptying and hopefully increase my quality of life a bit.
The second option, which is the most effective option, and the one that I am hoping to take, is called a POP procedure , this is performed at the Cleveland Clinic, in Ohio a specialist bowel hospital. No hospital in the UK performs this procedure. This is where they snip a part of the end of your stomach off , and it allows your tummy to empty better. the quote for travel, accommodation and the procedure is around $40,000.
Another thing that can be effective to reduce the bloating and pain on some people I have been advised is to take up acupuncture on the vagus nerve ( mine is damaged this is why I have the POTS syndrome and cardiac issues and the bowel). This can be really effective at helping calm people gastroparesis. This is performed in a clinic in London and costs £100 a week, I am really wanting to try this , but because I cant work due to the illness , I am hoping to raise money to help support this.
I also would appreciate any help, as I have to get things like monthly probiotics that are £79 a month, special shakes that are £200 a month, its all adding up.
I only open my bowels once every 2 months, due to bowel dysmotility and dysmotility of the entire throat. I can't be considered for surgery yet until I have the heart under control and the gastroparesis. I am hoping if I can at least ease my gastroparesis , then I can get a feeding tube as I am loosing so much weight and choking on food sometimes when I eat it, and then it will hopefully ease pressure on the bowels, on a good day I can manage to eat some solid foods but it has to be on the softer side, but this causes me extreme pain.
I am going through the wars at the moment I also have lingual tonsil cyst, that Is blocking some of airways and can't be left. Usually it would be surgery straight away, but due to ehlers danlos and the risk of bleeding too much and other complications, its being run through some MDT meetings. The only other possible if surgery is refused is to get private laser surgery on it to remove the cyst, but I shall update this page if this is the case .
I hope this all reads well, as I am in intense pain writing this.
I really do thankyou for any support
love
Anna xx
Organizer
Anna Louise Cowling
Organizer
