surgery , tube , admissions , abdominal adhesions

So its been a while i have a peg-j tube now to feed and have meds the tube displaced a week later and needed replacing then a month later i was admitted again with what i thought was another displaced tube vomiting tummy spasms severe pain dehtdration where i was told i am full of adhesions i they saw on my last ct since that was done before my tube i gad  no abdominal surgeries or procedures then so nothing that way to cause it ive been told they are caused by the eds my insides being too mobole rubbing together causing adhesions which cause severe abdominal pain . I had surgery tues to fuse my mcp joint in thumb and have been looked after by friends this week it was far more painful than i expected and still is despite painkillers but is improving im told theres a 12 week recovery time and im still week one i saw rhymetology a few weeks ago and now have a refferal to be seen in london about my eds which given recent complicatons cant come soon enough im also being sent for a tilt table test they are pretty sure i have pots .. ok i think thats everything sorry for the lack of updates this year most of this year has been spent in hospital due to gastroparesis but i will try and update more often

a letter to a med student from someone with a chronic illness

dear med student 
i know your tired i know your over worked and very stretched i know you see hundreds of people every day walk in and out of those hospital doors and i know to you thats just normal 
but please understand when we are walking through those doors we are scared , terrified , tired in pain , we are at our absolute worse to be going there 
i know you see people who try it on and i know that clouds your veiw and makes you question people when they dont 'look' like they are in pain , but please understand most of us really are we dont want to be in hospital any more than anyone else , if we dont look like we are in pain maybe we are so used to the daily pain levels and the constant pain that goes along with the illness we have that pain that would have someone on the floor doesnt do that to us , we have learned our own ways of coping with pain . maybe we are so used to hiding our pain from friends and family and anyone we need to that the act continues even when we want to scream and shout and swear in agony the act goes on it becomes habbit it becomes natural to hide it 
dear med student , when you say 'you are on alot of medication' understand i dont want it any more than you want it for someone , im in my early 20's and i take 30 plus tablets a day , please understand my body needs most of this to function my body needs this to work , its usually consultants that prescribe all these some may even be given by your boss 
dear med student if you dont know please dont try and guess please dont take risks , i have a rare disease im used to people not knowing but guessing can cause damage or at the very lease make the wait for an answer to anything new even longer 
dear med student when i give answers to questions or say exactly what is going on with my body please dont tell me 'do not google this or google os not a dr' just because im saying exactly what is wrong doesnt mean that i googled anything , the majority of the time its because ive lived this my whole life most things that can go wrong have gone wrong more than once im going by my own experience please dont invalidate my experience because usually when i have syymptoms ive had before and i think i know whats wrong im usually right on point with whats going on 
dear med student , i may have depresssion and anxiety but these are not the cause of everything , depression and anxiety will not and can not ever change my genetic make up weather i had mental illness or not id still have genetic disorders thats not going to change and soemtimes its the genetic illness that leads to mental illness i mean if you spent the best part of a year in hospital unable to eat or drink in constant pain and discomfort with uncontrolable nausea and daily dislocations wouldnt you get a little depressed too ? 
dear med student please understand the hospital is the last place anyone wants to be and most people when ill much preffer their own beds please dont let the minority cloud your veiw of the majoirty please just try to be empathetic and listen it goes a long way and will likley get you a long way too , 
understand that if you listen and take someone seriously it helps them to trust you and be hinest about their symptoms which in the long run will really help them even if they have somthing incurable it may help the acute symptoms they present with

a long overdue update

ive spent the most part of this year in hospital going home a few days to a week at a time then being readmitted to hospital due to not holding anything down it eventually ended in me getting a peg-j tube fitted via endoscopy all was going well but on monday the j part displaced and ended up in my stomach and the j tube had to be replaced with resulted in another hospital stay i recently went home again and we are hoping now that the tube will stay in place it is taped now to make it extra secure and im now on day time feeding the effects of the feed ahve mostly been good my hair and nails are growing i have more energy i sleep better and im no longer rapidly loosing wait i am really hoping this will continue , my joints have been upand down i am waiting now to have surgery to fuse my thumb and it will no longer stay n joint t all i have appts to see pain team and rhumetology finally and am hoping they can help and i have money saved to go to london to the hypermobility clinic privatly as nhs wales will not reffer me outside of wales im hoping london can help give a plan for the drs here to know what to do im glad to be home i spent christmas new year and easter in the hospital and my birthday is a few days away nd i really want to be home for that , im glad to be home with my chinchillas in a comfy bed and peace and quiet and looking forward to a birthday party on monday going to the cinema and having a movie and board games night at my flat and enjoying the little things
i went through a very down patch when the tube came out i felt like the last little piece of hope had been snatched away from me like the one thing that made things better and easier that was gone too , but im back on track now and hoping that this doesnt happen again
so in more detail , by the admission where i had the tube , i was no longer abosrbing my meds my thyroid was low magnesium potassium and vit b12 and d were all low due to malnutrition and no medication , i was in withdrawal from my antispychotis and anti depressants so i was no longer eating or sleeping and much of the time i was dehydrated as even water could not stay down , i came close to another admission for my mental health before i got admitted and when i did my blood work showed the problem/s the meds now all go down the j part of my tube and as long as its working i am well and stable , i was told that i also need a liver scan my ALT (one of my liver enzymes) was nearly 3 times what it should be , its come down but is still high we dont know why the liver enzyme is raised they have said not to be too concerned i have no pain other than where the tube is still new and i am not jaundice so fingers crossed that scan will come back clear i get seen by my gastro team next month to reveiw how the tube is going and i am hoping that i am continuing to stay the same weight and not loose anymore and that all will be well with that so i can start getting on with things rather than spending most of my time in the hospital

A new year a new diagnosis

I had the radioisotope and the results say I have Gastro paresis I can now tell the dr that it's not just reflux or anxiety I am on a new med and an increased dose of another med and they seem to have already made a slight difference as ensures are now staying Down getting closer and closer to home thumb keeps dislocating and may by need to be splinted or plastered but I'm trying to stay positive in the hope I go home soon

been here for 5 weeks

ive been in for 5 weeks now still on seringe driver of metoclopramide and having a radioisotope on wednesday as the holidays mean the dept is not open till then lost more weight and bp has been getting pretty low today was 93/60 which is not good and has been making me want to sleep all day just wanting to get somehting sorted so i can go home

Been here over a month may be in for x mas

Vomited up 2 nj tubes so they don't want to put a new one in telling me to try fluids but only thin ones stay down anything thick comes up I've lost 10 lbs in 4 weeks 6 lbs came off in less than a week since coming off the iv fluids and vomiting the tube they don't want to find a permanent feeding route yet ad that will mean surgery and weeks more in here but I wish they're find something as I keep trying n keep vomiting they are doing the radioisotope as an outpatient as I need to come of prokinetics to have that I'm on a seringe driver  of  matoclopramide  now and that is helping a little as I can hold down some fluids on it but only thin ones like squash and juice etc hot fluids come straight up as do thick ones so ensures and smoothies have also been tried and fruit puree and soup they also came up really struggling with mood swings and anxiety I think from lack of food and calories and just want to go home I don't know what happens if the seringe driver works as they haven't said I was already on tablet form at home and when I came in and it wasn't working but if all else fails they will eventually have to place a jej tube to feed me that will mean weeks in here he said

Still here

Still in hospital waiting for radioisotope and gastro team being fed via nj