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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Liquid Feeds Failed me - TPN to the Rescue?


01-15-2014, 04:14 PM   #1
Emmy
 
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Liquid Feeds Failed me - TPN to the Rescue?

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)
  • 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...
01-15-2014, 04:26 PM   #2
kiny
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I was on TPN for a few weeks at one time. I was only allowed to drink a tiny bit of water sometimes. I was 36 kg though, I was severely malnourished. It helped me a lot. They don't like to do TPN because of risk of infections though, normally it's only if people are really under their normal weight like I was.
01-15-2014, 04:31 PM   #3
Emmy
 
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I was on TPN for a few weeks at one time. I was only allowed to drink a tiny bit of water sometimes. I was 36 kg though, I was severely malnourished. It helped me a lot. They don't like to do TPN because of risk of infections though, normally it's only if people are really under their normal weight like I was.
You must have been soooooo malnurished... and quite short compared to me I'm guessing, cos I usually weigh around 80kg and I'm 6'1ish. So it balances out. I look nearly skeletal atm... no muscle mass pretty much...
01-15-2014, 04:34 PM   #4
kiny
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Yes, I'm a bit shorter. I was completely in denial about it. I refused the feed at first and said I was fine. They held a big mirror in front of me and I started crying, I was so skinny that sitting hurt, because you lose so much fat that you start to sit on bones instead of fat. Really weak, no energy, low self-esteem.

It gets better, it just takes time.
01-15-2014, 04:44 PM   #5
kiny
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Oh, make sure you run around a bit in the hospital hallways and don't stay in your bed for long periods. My tendons and muscle were so tense after those weeks that I spent another few days in the hospital with a person helping me with some stretching exercises.
01-15-2014, 05:53 PM   #6
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Yes, I'm a bit shorter. I was completely in denial about it. I refused the feed at first and said I was fine. They held a big mirror in front of me and I started crying, I was so skinny that sitting hurt, because you lose so much fat that you start to sit on bones instead of fat. Really weak, no energy, low self-esteem.

It gets better, it just takes time.

Oh, make sure you run around a bit in the hospital hallways and don't stay in your bed for long periods. My tendons and muscle were so tense after those weeks that I spent another few days in the hospital with a person helping me with some stretching exercises.
I wasn't refusing the feed, I was more upset by the fact I'd got that thin in the first place, and not being able to push myself up off stuff sometimes... actually having to try... which I'm still doing.... it feels so pathetic. Being able to feel my ribs and hurting my butt sitting down on hard chairs is one thing, but not being able to stand up or sit up without grabbing onto something... that's beyond sad...

I had been making circuits of the ward, before I lost even more weight, and after all the throwing up I just got light headed and dizzy standing up and walking for too long... My mum was already suggesting a Physician or something after my second hospital stay in the past 6 months(this is my third, hopefully my last surprise one...).
01-15-2014, 11:38 PM   #7
jlm
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Ive done TPN for the last two years and for a year a few years prior
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01-16-2014, 10:22 AM   #8
Lady Organic
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when you tried the elemental feds, did you go gradually? with the first days mixing food and EN? This is what is recommended by Dr. Hunter in his book. If you skipped this introduction step this is maybe why you felt so bad and had to stop it???
I am now at day 4 of Vivonex plus and I am over excited and just did 1 day of introduction mixing food with EN. At day 2 I started to feel nauseous and some abdominal discomfort. I came really close to vomit. These symptoms have mostly passed. I am better now on day 4, but still some nausea occasionnaly. One problem is I am hungry even with 7 packets a day total 2100 cal. I am only 50 Kg in full health (crohns is in remission , so my regular weight) I'll try to drink 8 today, that is the regimen for a bigger person. I am trying EN in hope to induce remission for my hands arthritis.
good luck
LO
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
01-16-2014, 03:03 PM   #9
sickofcrohns
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Well, all this sounds like crap. I hope you feel better soon.

I've never been on EN or TPN because I'm allergic to one of the components (yes, one that's in every brand). When I've been hospitalized before, I lived on peanut butter, saltine crackers, hard-boiled eggs and margarine.
01-16-2014, 04:06 PM   #10
Lady Organic
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Well, all this sounds like crap. I hope you feel better soon.

I've never been on EN or TPN because I'm allergic to one of the components (yes, one that's in every brand). When I've been hospitalized before, I lived on peanut butter, saltine crackers, hard-boiled eggs and margarine.
which ingredient? maltodextrine?
01-16-2014, 06:02 PM   #11
sickofcrohns
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which ingredient? maltodextrine?
Yes, that, and other corn derivatives. I'm allergic to corn (and have been for 20+ years).
01-16-2014, 06:35 PM   #12
Emmy
 
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when you tried the elemental feds, did you go gradually? with the first days mixing food and EN? This is what is recommended by Dr. Hunter in his book. If you skipped this introduction step this is maybe why you felt so bad and had to stop it???
I am now at day 4 of Vivonex plus and I am over excited and just did 1 day of introduction mixing food with EN. At day 2 I started to feel nauseous and some abdominal discomfort. I came really close to vomit. These symptoms have mostly passed. I am better now on day 4, but still some nausea occasionnaly. One problem is I am hungry even with 7 packets a day total 2100 cal. I am only 50 Kg in full health (crohns is in remission , so my regular weight) I'll try to drink 8 today, that is the regimen for a bigger person. I am trying EN in hope to induce remission for my hands arthritis.
good luck
LO
Not on the Modulen, on that the dietition just had me start on 6 250ml glasses of Modulen made up with 6 scoops of powder each. Then on day 2, 6 x 250ml with 9 scoops, and day 3 6 x 250ml with 9 scoops. No food allowed from the get go. When I started the Elementals they wanted me to drink like 8 a day right away, or try for as many as possible, but me and my mum had read in dr hunter's book that you should build it up gradually, few at a time, so I did, 2 one day, 3 the next, then 4, and when i got to 5 I couldn't keep it down.... or drink em fast enough, even undiluted, which was another trick I was told... Fresubin I just tried to sip ep slow cos I'd had them before...

Yes, that, and other corn derivatives. I'm allergic to corn (and have been for 20+ years).
That sucks ass... I read somewhere it can aggrevate CD/IBD... I questioned whether or not that was why I couldn't tolerate the feeds tbh. And why other stuff bothered me. But it's in soooooooo much........ well. So much processed stuff... which we should avoid anyway if we follow all the diet advice.... but I'm still not sure what's right and wrong regarding the diet stuff.... it's so subjective....
01-16-2014, 07:54 PM   #13
Lady Organic
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ok, yeah, I have re-read Hunter book again, and I dont know why I though going gradually meant mixing food and EN for a few days. Honestly, I think this is what should be done for greater body acceptance of the product. Just seems logical to me now. Switching to complete new food regimen is for sure a shocking experience for the body. They shoud really think about this in order to increase digestive tolerance in patients, just my thoughts...

I notice that the most slowly I drink the better I feel. Thats why Hunter mentions to sip to throught the day slowly rather than filling up at lunch time. Thats what I do now.

I found another trick, pinching my nose with a swimming ''nose-pincher'', and drinking the feed with a straw and finally drink and rince my mouth with water before taking the nose-pinch off my nose. Doing this takes away 50% maybe more of the bad taste. Vivonex tastes dreadful (like vinegar).

good luck with the TPN.
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