My stomach issues have become unbearable and I don't know what to do.

Age: 21

Sex: Female

Height: 5'7

Weight: 9 stone 9 pounds

Race: White British (Located in England)

Existing Conditions: Gastritis and likely GERD, reduced motility in gullet, Anxiety (now controlled without mediation), Depression (now mostly controlled without medication, but still struggle sometimes), waiting a full Autism assessment but initial testing indicated high scores, Hypermobility (Severe in lower limbs), Sciatica, lack of foot arches leading to knee deformity, Scoliosis, TMJ Disorder, Trigeminal Neuralgia, IBS, waiting on Gynae referral for Endometriosis/Adenomyosis as ultrasound showed coarse uterine lining, consistent Iron Deficiency Anaemia and low Haemoglobin, Albumin consistently heightened but likely due to Omeprazole use, consistent low WBC count unsure of cause (lasted for 6 months so far), undiagnosed gastric bleeding (awaiting re-referral to Gastro, it's a long story), previously had Glandular Fever and Covid which led to splenomegaly (self resolved) and a Pulmonary Embolism, Grumbling Appendix which re-occurs usually once a year, awaiting GP reviewing possibility of Ehlers-Danlos Syndrome on advice from Physio, persistent Tachycardia (worse upon standing).

Current Medications: Omeprazole 40mg once daily with possibility of taking extra 20mg in evenings if needed, Ondansetron 4mg when needed (usually 2/3 times daily), Hyoscine Butylbromide (Buscopan) 20mg every 4 hours, Paracetamol 1000mg as needed (usually 3/4 times daily for chronic pain), Codeine 30mg as needed (do not take unless absolutely needed, usually once every 3 months or so), Depo-Provera contraceptive injection was once every 10 weeks but moving back up to every 12 weeks now due to concerns around risk of Osteoporosis (due to Omeprazole being used for past 5 years too).

Drinking/Drugs: No, I've never done drugs, have not drank in almost a year (since New Years, and even then it was a glass of prosecco at midnight).

Smoking: I do vape, but have cut down significantly and am trying to stop.

Duration of complaint: 3 months

First of all, apologies for the super long introduction but I like to be thorough in case things are relevant.

So, my issue at the moment is that I simply cannot eat enough to sustain myself. I have lost over a stone since September (was 10 stone 10lbs when I was weighed at the hospital) and I am in constant pain and discomfort.

Some background that is important - I've had persistent stomach issues since November 2019 (when I was 16). It started as nausea, gnawing pain in my stomach, and acid reflux. I was given Lansoprazole to try and help, as it was suspected to be a Hiatal Hernia (my Dad has one, as did both of his parents). I was referred to Gastro who did a barium swallow test (they tried to do a gastroscopy first, but we found out during it that I was immune to regular sedation so it became dangerous) which only showed the reduced motility. In March last year I began bringing up blood. I went to A&E who suspected another PE, but everything came back clear so they referred me on to my GP who sent me urgently to Gastro. Gastro did a gastroscopy, colonoscopy and a small intestine MRI, which showed nothing apart from mild non-erosive Gastritis, but the bleeding persisted. They referred me to ENT, who scoped my sinuses and throat before saying it was clearly a gastro problem. Gastro signed me off because it wasnt life threatening, and I was basically told to wait it out or cope with it. The bleeding still has not stopped, but since starting Ondansetron daily in January it has become more controlled (went from bleeding all day every day, to bleeding maybe once a week, and only having excruciating 10/10 pain once every few months, which is when I am hospitalised for 'respite care' of pain medication and IV Ondansetron). I feel it is important to note that I am now vomiting during this, it is literally pure fresh blood (although more recently it has been darker in colour and contains more clot like structures). It also isn't a vomiting sensation exactly, its more like a reflux sensation (very similar to acid reflux), I feel it come into my throat and then I 'bring it up' into my mouth to clear it. I have continuously gone back to my GP begging for help with it, but she is convinced that it is either health anxiety, anxiety induced or - and I quote - 'all in my head', and because of this, she has refused to refer me back to Gastro specialists. I agree that stress and anxiety could absolutely trigger whatever it is, but I do not agree that this is caused entirely by anxiety, and neither does any other medical professional I have ever seen (ENT, ED docs, hospital consultants etc.). I did manage to finally get her to refer me by threatening a formal complaint, but she referred me to Respiratory (and she did so with a very unprofessional referral letter that not only missed out my history of a PE, but centred around her belief that I am extremely anxious about my health). Her reason for sending me to Respiratory is due to a cough I have had for 11 months now, which has been put down to the constant reflux and presence of blood in my throat causing post nasal drip and scarring/irritation. They have been extremely kind to me, they have done a CT of my chest and abdomen to check for structural issues, but are in agreement that this is absolutely a Gastro issue. Thankfully, they are willing to take the choice out of the hands of my GP and refer me on to Gastro themselves. I cannot be more thankful for what they have done.

I did try and bring up this issue with my GP, but as usual she brushed it off. My main symptoms are as follows:

- Constant nausea even with anti-emetics, if I do not take them, I bleed profusely.

- When I do eat, I am uncomfortably bloated for 8-10 hours after eating

- Also after eating, I can 'taste' the food on my breath and in burps for 8-10 hours, it's like my stomach does not empty fast enough, after a few hours the taste becomes disgusting and like its fermented or rotten.

- I get intense pain which worsens after eating, its different to all my other pains, its in most upper region of my stomach between my ribs, radiating into the left and right sides of the abdomen, it is a sharp stabbing pain. I also get a more throbbing pain in the upper left quadrant, and sometimes get a stabbing pain in the upper right quadrant, just under my ribs.

- I also have issues with swallowing, its like food and drink just sits in the bottom of my throat rather than going into the stomach, I cannot lie down for at least 45 minutes after eating or it will begin to come back up into my mouth.

- Even fluids have begun to trigger the same symptoms, but I do find fizzy drinks to be easier to get down than flat drinks.

I honestly dont know what to do at this point, in the past 2 weeks alone I've lost 3lbs, and I am constantly exhausted and weak from what I can only assume is lack of food and drinks. I'm sleeping close to 16 hours a day and still have no energy, I nap every few hours. I have tried reducing my Omeprazole, not taking the Buscopan, and not taking the Ondansetron to see if they were somehow slowing down digestion, but it made no improvement and instead just added on the symptoms they are meant to control. I've also tried small meals more often and entirely bland foods, but neither were any help. Right now the most I am able to manage in a day is 2 crumpets with a tiny amount of butter and 100mls of fluids over the course of the day.

It might be worth noting that when I was hospitalised back in January for bleeding and pain, the Gastro consultant who saw me wanted to do a gastric emptying study, as he believed a lot of my symptoms line up with Gastroparesis, but my GP thought it to be a waste of time, so never sent me to the Gastro outpatient specialists to do the tests. Looking into it further, I do believe it could be a solid pathway to take, but I have no control over what tests I can get.

If you have read this far, thank you I know it is a lot. Any suggestions are massively appreciated, either on how I can better manage this, or on what it can be. I feel like I am going to end up back in hospital on drips or worse purely because I cannot effectively nourish myself.