iPixie

Sounds very much like me at the beginning... I was begging for reversal of my opp... but no one obviously did... since then i had everything... ruptured stomach twice... so sewing it back, shaking from anything I put in to my mouth... two months of intermittent feeding, two near death experiences, adaptation and understanding issues... and all this was nothing to do with the surgery... in fact if it wasn’t for this surgery noone would find my disease... now I am 9 months post opp... 8,5 stones lighter... trained my body to accept what I want to eat and enjoy my life... obviously all rehab thing after tumour removal still present but everyday I am getting stronger and stronger... so hopefully soon you will pass that stage as well and will enjoy this decision of having this opp

My heart rate was going like that up to 180-190 when I had a leak and noone could find. But now it is all sorted :) besides of high heartbeat I had temperatures and melena...

Well still in hospital, still waiting for results wether they will find reason for having that cushing syndrome - they say if they will find it they will remove it and all be good, they say i am weak coz of it. From tomorrow liquid food finishes, i still don’t understand how to eat but just eating whatever they give in hospital that’s what dietician said. I don’t get quantity how much i can eat, and how much i will be able to eat? They say 200ml now but I don’t get how to measure, I don’t feel my stomach well like if it is full or not? If anyone in to sushi, how many you can eat... i mean that’s for later when i will be able to eat it? Can you stretch stomach to bigger? Or how does it works? I lost already 40kg from beginning.... all my muscles are down. Now i am working with rehabilitation lady to bring them back...

I’ve seen someone might of thought i am scam or troll but no. Just will update with what happened over last 3 months since i had my operation maybe will repeat myself but feels like i need it... right i was 150kg and decided to have bypass operation paid went to surgeon one day all blood tests next day operation, couple of days in hospital, no proper diet plan all I knew it was purées then internal bleeding, hospital nobody found anything but it stoped and i was let to go home, then again i did not eat properly and new bleeding came out apparently with peritonitis and anostomosis so i had surgery to sew it up, then again third operation after third bleeding same thing, they sew it again. Now since operation on 8th of January i am in hospital, on liquids and very confused and weak they think i have cushing syndrome this is why all happening it is super confusing i sort of ok to text and speak with my mum who is always with my in hospital but something happening when someone else is asking me i am afraid of everything... so here we go.... long story short

And best part i catched cold or flu now, it is strange sensation... not like before... all upper body is in pain and i have temperature but I don’t cough to much even feels like I should

This is what i am saying I don’t have any support from my doctor and I haven’t got a dieticians. But now i am exactly two months post operation and I didn’t have any liquid diet not pre op not after. Now i am on sort of everything

I wonder can anyone give me actual diet list or something I don’t think i know how to eat and what to eat and I don’t have dietician either

Thank you so far with Cushing syndrome is not clear either I am waiting on mri if they find anything if not then whatever I don’t know

And about pity... this is why I asked wether it is reversible, which is possible in the future if needs be, but maybe not and now it’s done so just somehow I need to deal with consciences

Well it’s too much going on I don’t have proper nutritionist nor my surgeron noone it’s now all left to state hospital so i was in hospital due to bleeding they didn’t find reason everything everywhere healing great as they say, but now my haemoglobin 85, potassium 3,2 but i am on a lot of it as meds i take omeprosol vit d3, kreon, and potassium now still in a limbo with my bp meds, oh and thyroid medicine, I don’t know if i am eating right as dieticians didn’t explain me properly anything so i am just eating food, every time i have to lay down after food as i feel heartbeat all over my body, then stomach rumble and 8/10 will be diarrhoea with partly digested food. So in hospital dieticians allowed me to eat soft food but chew it very well, that’s what i do but still maybe it is too fast I don’t know anyway dad says my digestive system needs to adapt and then it will go... but this is just guessing. I lost 35 kilos already, mostly muscle.. so i am so weak that I hardly can get up stairs but they won’t allow me to do much physical activity as they afraid of my bleeding. Endocrinologist in hospital told me that after removal that tumour everything should change as this is amount of cortisol makes me so weak... I don’t know what to think and what’s going to be but here we go, i think my body is in too big stress or even shock at the moment

It might be not or it might be yes from shock and stress I didn’t know about it before I only took lthyroxin but apparently my cortisol was 820 before op and it raised up to 1500 after so now they’ve done tests with them meds and said that i have it. They checked every where except head mri which is planned on 10th of January and if they will find tumour they will sort that out then as they say my potassium level should stay :) and I should regain my strength

I am surprised how patient i am to be perfectly honest... i am just going wherever they take me and say... i had my op in private clearly wasn’t prepared now have to deal with all consequences will see the outcome

Hi all again I don’t know wether I shall start new topic with all my updates or what, but here we go... out of hospital after 3 weeks. Now weaker than ever. But they explained it in very strange for me anyway manner... it seems like they ignoring operation with all the dumpings or so... after each food I feel arrhythmia between 90-140 and it doesn’t matter wether I am lying down or standing or sitting, then my stomach rumbles, i can get hot flushes and sweating, then I will go to the toilet, somtimes i will feel sleepy... witch would bet typical dumping syndrome without pain and without vomiting.... but sometimes like now i woke up at 4 am and i feel shakes again witch is probably from my hypokalemia and I am taking potassium with ffood and ferments and omeprazol and bp tablets. But for me explanation in hospital was after they have checked everything and didn’t find anything bad and did not find where i was bleeding from they say I have Cushing syndrome after test that eats my muscles and potassium as my cortisol is 1500 and now I am waiting for MRI brain scan to find tumor and once it is removed if they find it all those symptoms should be gone? So I am confused wether I am dumping ever time I eat wether it is to do with this syndrome ?

Well I think I am more adjusted now if I can call it that way I don’t know, feels like there was not enough job done prior to operation but it’s been done now so have to deal with it... now I am still in hospital and already whole team of people working with me and endocrinologist and psychotherapist and nutritionist... I don’t know exactly why she put me on liquid diet now that I am already so far from my op but I am doing all that they say but still weak and still shaking as my potassium level constantly drops i didn’t had CD before op but they say it is possible that it will come now... I don’t know my thyroid and high BP all is being sorted now so I am just waiting patiently... thank you for encouragement xx

Ok, now some more news I suppose, I don’t know what is happening... bleeding stopped like started it happened twice since surgery, no one nows where from or how... they’ve checked endoscopy from top how much they can reach... all healed fine as they said... then they’ve done another endoscopy with anaesthesia longer route all good there they said as well then they’ve checked my bowel found two little diverticulitis and one pile but they said it’s not major and it doesn’t seems to be reason of bleeding... then they’ve done kt with dye to check rest of my guts... no sighing of bleeding there... anyway this is gone my potassium always gone now and I constantly feel vibrations in my heart and back and basically whole body... they don’t know where it is going and why... all they do is I am getting drip every night with 3/6ml potassium and ringer solution... now dietician sorted out my food... which I wanted but she put me on purées and liquids without any protein shakes or anything, as well psychiatrist going to be working with me... today I started my food from what they sorted and shakes go through the body after everything i had... but I don’t know is it to do with potassium or is it to do with food going down to quick... as for colonoscopy I needed to empty my bowels with fortrans i haven’t been to the toilet since monday... but it might be normal? So... yes... I don’t know