- Location
- Birmingham
So let's get the basics out the way. I'm 24, had CD 7 years, worst flare ups of all this year. Into hospital 27th December, odds of surgery high, but planned, so my weight is up a bit and I'm not half dead basically.
(That's way too long... sorry.... cliffnotes)
I've been in hospital for the past 2 and a half weeks, nearly 3 this coming friday, because I'd gotten so malnurished and weak and unable to drink enough of the Fresubin and eat enough of a low residue diet to get my weight up. (I weighed 65kg, 143lbs, and I'm like 6'1, or 187cm, in denial, and I usually weigh around 80kg, so this is waaaay underweight for me.....). But I was only admitted after another day of extreme pain and some throwing up. Not like the week before where I spent about 5 hours throwing up and got the local GP to come out to the house, but I wasn't admitted, nor did I want to be right before my birthday and christmas....
Admitted on the 27th, plans basically made for surgery at the end of the month more or less, when I got off the reducing Pred steroids, taken off solid foods the 30th, started on Modulen, which I lasted about 3 days on before throwing up and being swapped to Elemental 028, which I lasted, maybe.... 5 days before I started throwing up again, getting up to 5 bottles a day, when they said I needed at least 8 for calories. And then they decided to put me back on the Fresubin, since they were obviously running out of EN drinks to give me. Fresubin I'd be ok on before, but drinking 6-8 of those a day had also been a challenge, but I had semi-managed it at home. But something wasn't sitting right and drinking these was making me feel sick too... Bearing in mind since coming into hospital at 65kg, I've lost more weight, I was down to 57kg(125.6lbs) at one point. I'm at 60.4kg(133.1lbs) today apparently though. Good thing. But it's gonna fluctuate a bit anyway.
So they wanted to try and NG tube. Though this would be going through my guts like drinking would, just without the swallowing... anyway, I couldn't keep the NG tube down, didn't even get a chance to have anything put down the tube before I coughed/threw it up along with the little Fresubin I'd sipped down that day bout 3-4 hours later... Not a fun experience... and the damn doctors asked am I sure I couldn't try it again o_o two of the ones with the least amount of bedside manner I've met to date me thinks... they seemed totally against TPN...
So spent the weekend just sipping on what I could and wait till the PICC line could be put in, which happened yesterday eventually, and I was started on a 48 hour TPN drip. It's going to be built up over the week till it's at 1500 calories(at 600 right now, next bag at 800 or 1000 I'd guess...). Being attached to this thing 24 hours a day is kind of annoying though. And you have to be so careful with the PICC line too. And this ones almost at my armpit, not the most hygenic place even with bandages lol
Doc's and Nutritionists say it will be 6-8 weeks on it, most likely stuck in hospital... no chance of going home, one doctor said there's a chance I could get home while on it, which I really hope is more accurate. And he said 4 weeks. Not 6-8... cos I don't wanna be here 3 months... That's all kinds of depressing... specially being the baby of the ward and the longest stay in this bay so far... I've never been in hospital this long... but if it actually works to build me up in prep for the eventual surgery which I will have.... least I can eat a little bit now... not much.... and I have to be really careful in case it hurts me, hell the Fresubin were hurting cos I had to drink so many, anything going through did... E028 did too... everything hurt.... but I'm on like, regular painkillers now to try and keep that under control... I didn't wanna be, but if it means I can go through a day without holding my stomach looking pained... *sigh* upsides and downsides. If I am here I'll know all the nurses names probably and have to end up getting em little gifts for looking after me. Unless they're all super bored of me by then. (One has been very motherly towards me though, has children the same age.)
Anyone been on long term long plan TPN and have wonderful sucess stories to share? In the UK? I don't know how TPN goes in the US. I should be able to go home with it really... I mean my mum's a friggin nurse, or used to be, they teach you the basics and stuff and it's simple right? More or less...
(That's way too long... sorry.... cliffnotes)
- In prep for surgery I was going to rest my stomach and build up my weight(65kg at time of admission, 75kg-ish in August, 85kg-ish in May)
- Started on Modulen, couldn't tolerate it, ended throwing it up
- Put on Elemental 028 as an alternative, lasted a few days, but not on enough, ended up in pain and throwing up again
- Then put back on Fresubin as a last ditch, more pain, more throwing up eventually.
- Tried a NG tube, couldn't stomach it, felt weird, couldn't move without wanted to throw up. So I did eventually.
- So then they HAD to go with the TPN option. And PICC line planning was begun.
- And that's where I am now. Day 2 of TPN. Feeling a little perkier. I think...
I've been in hospital for the past 2 and a half weeks, nearly 3 this coming friday, because I'd gotten so malnurished and weak and unable to drink enough of the Fresubin and eat enough of a low residue diet to get my weight up. (I weighed 65kg, 143lbs, and I'm like 6'1, or 187cm, in denial, and I usually weigh around 80kg, so this is waaaay underweight for me.....). But I was only admitted after another day of extreme pain and some throwing up. Not like the week before where I spent about 5 hours throwing up and got the local GP to come out to the house, but I wasn't admitted, nor did I want to be right before my birthday and christmas....
Admitted on the 27th, plans basically made for surgery at the end of the month more or less, when I got off the reducing Pred steroids, taken off solid foods the 30th, started on Modulen, which I lasted about 3 days on before throwing up and being swapped to Elemental 028, which I lasted, maybe.... 5 days before I started throwing up again, getting up to 5 bottles a day, when they said I needed at least 8 for calories. And then they decided to put me back on the Fresubin, since they were obviously running out of EN drinks to give me. Fresubin I'd be ok on before, but drinking 6-8 of those a day had also been a challenge, but I had semi-managed it at home. But something wasn't sitting right and drinking these was making me feel sick too... Bearing in mind since coming into hospital at 65kg, I've lost more weight, I was down to 57kg(125.6lbs) at one point. I'm at 60.4kg(133.1lbs) today apparently though. Good thing. But it's gonna fluctuate a bit anyway.
So they wanted to try and NG tube. Though this would be going through my guts like drinking would, just without the swallowing... anyway, I couldn't keep the NG tube down, didn't even get a chance to have anything put down the tube before I coughed/threw it up along with the little Fresubin I'd sipped down that day bout 3-4 hours later... Not a fun experience... and the damn doctors asked am I sure I couldn't try it again o_o two of the ones with the least amount of bedside manner I've met to date me thinks... they seemed totally against TPN...
So spent the weekend just sipping on what I could and wait till the PICC line could be put in, which happened yesterday eventually, and I was started on a 48 hour TPN drip. It's going to be built up over the week till it's at 1500 calories(at 600 right now, next bag at 800 or 1000 I'd guess...). Being attached to this thing 24 hours a day is kind of annoying though. And you have to be so careful with the PICC line too. And this ones almost at my armpit, not the most hygenic place even with bandages lol
Doc's and Nutritionists say it will be 6-8 weeks on it, most likely stuck in hospital... no chance of going home, one doctor said there's a chance I could get home while on it, which I really hope is more accurate. And he said 4 weeks. Not 6-8... cos I don't wanna be here 3 months... That's all kinds of depressing... specially being the baby of the ward and the longest stay in this bay so far... I've never been in hospital this long... but if it actually works to build me up in prep for the eventual surgery which I will have.... least I can eat a little bit now... not much.... and I have to be really careful in case it hurts me, hell the Fresubin were hurting cos I had to drink so many, anything going through did... E028 did too... everything hurt.... but I'm on like, regular painkillers now to try and keep that under control... I didn't wanna be, but if it means I can go through a day without holding my stomach looking pained... *sigh* upsides and downsides. If I am here I'll know all the nurses names probably and have to end up getting em little gifts for looking after me. Unless they're all super bored of me by then. (One has been very motherly towards me though, has children the same age.)
Anyone been on long term long plan TPN and have wonderful sucess stories to share? In the UK? I don't know how TPN goes in the US. I should be able to go home with it really... I mean my mum's a friggin nurse, or used to be, they teach you the basics and stuff and it's simple right? More or less...