I've been debating on whether or not to publish this post. I haven't felt ready but my blog is all about my journey so here goes.
I thought i would write this blog post to just get my thoughts out. I suffer with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Severe Gastroparesis -peg fed, and bowel issues.
I've been having trouble with my pegj since feb. It got changed as it had flipped into my stomach. I was sick and after that have had severe pain when feeding or eating. It came to a head when i could no longer feed through it.
I went to A and E thinking my peg had flipped so had an xray. They weren't sure. I had to stay in hospital as they wanted to do an endoscopy.So i Was nil by mouth from monday until wednesday as i was told i was to have endoscopy. Doctor decided not to. Kept nil by mouth until id seen consultant. He never showed but i was told i wasn't nil by mouth now. Thats 3 days of no feed just a few bags of saline for no reason what so ever.
Thursday my cannula stopped working so had to be taken out. More fluids were prescribed but never given. The doctors refused to give me anymore iv fluids.
Usually i can eat a tiny amount but i haven't been able to. I take tiny sips of water. Maybe 50ml in a day. They say it has to go through my peg which it can't.
Everyday was the same. Hook up, to much pain, then unhook. I was only tolerating 18ml an hour. They started it at 20ml. First night was hell. Had morphine. The dietician wanted me to go up to 30ml. I compromised and said 25ml. However she still wrote down 30ml so i refused to do 30 and stuck to 25ml. I didn't think the night could get any worse. The pain was horrific. I was crying. It was equivalent to the pain i felt when i had my peg surgery.
Everyday the feed rate is being upped. 25ml 35ml 45ml 55ml. Never got to 55ml and been tube fed for a year. The dietician put me on a low fibre diet. I'm lactose and gluten free anyway but at low fibre means theres nothing suitable on the menu except jelly.
I was to be put on a food, fluid and urine output chart. Urine output got documented once. Food and fluid chart were filled in wrong. If you looked at it you would think i ate and drank well. But i was only getting 300ml a day from my feed. Luckily i went through it with a nurse who wrote down i need iv fluids.
My meds have been messed with . My anti sickness was swapped for a drug i refuse to take due to severe side effects. My reflux drug was also stopped.
I Saw the consultant who said he thinks the nerves are over sensitive. Put on amytripline. Sent to phycologists to see if it was all phycological. We came to the conclusion it could be my peg placement as thats when the pain started when it got changed in feb. In the morning i was given a calcium tablet.No one could tell me why. I ask consultant. He didn't know so crossed it off said i didn't need it. Turns out my calcium was low but when back to normal the next day.
My hospital doesn't have the equipment to do the tests i need. My consultant in London thinks my bowels have slowed down so i'm having tests at the end of the month. I've argued with my consultant about how he can say theres nothing wrong when he doesn't have the proper tests to prove other wise.
Still refusing fluids, still not tolerating feed. There not happy i'm refusing morphine. It sends me to sleep all day which is no quality of life, had to have a catheter as my bladder stopped working. Probably because i couldn't pass much urine.
Things came to a head yesterday with some junior doctor who's probably only a day out of university. I was ready to discharge myself. The hospital is killing me. I said i may aswell go home. I can be in agony there to. They disagreed. Said what if you get dehydrated at home we cant treat you. You are not treating me here.
My other points : why are you sending me back to the phycologist when they haven't found anything wrong with my mental state. But I'm happy to talk to someone about this hospital.
If you scan my stomach you wouldn't find anything wrong but it doesn't work.
I was asking for my discharge papers. He said he would advise against it and i could get very unwell and you wont get the care and its a risk. I said I'm at risk being here. They said they will treat me when my bloods are out of whack. It shouldn't get to that point. It shouldn't get to the point I'm very ill. Ive lost so much weight.
My tablets hadn't been ordered for two days. Today i have found out they have stopped my anti depressants. Everyone knows you can't just stop them.
I'm all out of fight now and very thirsty x
I went back to see the phycologist. Apparently i had requested to see him, which i hadn't. He said to complain to pals about all the errors.
Finally been discharged on next to no calories. I am very pleased to be home but feel so very unwell.
