New here.... anyone been on TPN?

Hi, I am new here and feeling very lost.

I am in my 30s and was diagnosed with Crohn's in my small bowel in January this year after years and years of problems which were put down to psychological reasons, Irritable bowel, and eating disorders. I do have problems with eating, but the docs now recognize it has a lot to do with food intolerance issues which became a coping mechanism later on.

Anyway, reason I am feeling desperate enough to post today is that I saw my gastroentrologist this morning and she was so concerned about the weight I have lost over the past year and my poor nutrition that she wants to admit me to hospital to start me on TPN feeding. Once a Pic line (I think this is right?) is put in, and I am on a routine, they will send me back home to continue...

Apparently it gives the bowel a chance to rest and recover, as well as being the easiest way to absorb food. Although I was told this about elemental drinks, but my vitamin levels are still really low - especially D, E, and B Vits, along with potassium from all the vomiting and diahorrea.

If they can organize a bed for me, I'm getting admitted on Tuesday. I am feeling terrified to say the least! Also, I know it is stupid but I am worried about the weight gain. I know I need to put on a bit of weight, but I am kinda used to being thin and don't want the weight too go on too fast. I really wanted to say no to the doc's suggestion, but she said that if I needed surgery for my Crohns (which was a definite possibility with the ways things are going) I needed to be in better shape otherwise there was a good chance I might not survive. Kind of sobering....

I suppose what I am asking is if anyone has been on TPN feeding, if they can tell me a bit about it? I am so nervous and feel so lost in all of this and trying hard to keep up a brave face for everyone else but all I really want to do is to curl up in a corner and cry right now. I would really appreciate any advice or shared experiences or support.

Thanks heaps.
CookieCat

heyo cookiecat, welcome to the forums.

TPN is medically nothing to worry about at all, its great stuff actually. helped me out quite a bit.

Mini Cooper, one of our other newish people here, has just recently posted her online diary of what its like to live with TPN. find a post by her, click on her name then select the "find more posts by mini". she links to a website, its not to far back in her history here.

and feel free to curl up in this little corner of the internet and cry to us, we've all been there. we know how crap it is, and you'll find some great relief in letting it out.

aagain, welcome

Jed

here ya go cookie, i found it

http://www.crohnsforum.com/showthread.php?p=59385#post59385

goto post number 40 and hit mini's link from there

Hiya cookie,

You are definately not alone honey and you are very very welcome here! Its good to see you felt able to post too.

I havent had TPN but was on elemental drinks for almost 7mths last year. I was told last tues I am not absorbing Vitamin D despite calcium and vit D supplements daily.

This morning I have had an Intramuscular injection in my bum of Vit D to see if that helps.

You will get there honey trust me. It can be a long hard struggle and really take it out of you because you are so exhausted and drained.

On the aspect of being concerned about weight gain. Have a think about the exhaustion and how you feel walking up stairs etc. Are you even more tired? Do your muscles ache etc.

If this is the case you probably need the chance to build up some muscle via the TPN with the nutrition it will give you. Another aspect is some of your vitamins and minerals need SOME body fat so they can be stored.

You have already been faced with the implications of being underweight in relation to surgery and yes that is scarey but realistic. They have to give you all the facts that relate to you so YOU can make informed decisions and have input into YOUR care Cookie ok?

Can totally understand why you feel as you do on so many fronts. Give yourself time and rest to allow your body to focus on picking up, storing nutrition to heal and repair you ok? By the way depression can also be a side effect of being nutritent depleted did you know that? So between that and everything else going on its no wonder you are bewildered and drained honey.

I look after folk on TPN regularly and it helps immensely.

Hang in there. Things will get better. Give yourself time and be patient with your body you have been to hell and back as many of us are and have been.

Keep posting too. Your story and situation will be recognised here by many so we totally understand ok?

Thinking of you. ((hugs))

Hi again,

Thanks heaps for the replies, I wasn't expecting anything so soon.

Jed I tried Mini's link but it says I have to download a plug-in. I tried and it doesn't seem to have worked. Maybe I am just being thick as I am not thinking too clearly right now. I will try again later cause I'd really like to see it.

Soupdragon thanks for the caring reply too. Means a lot. You are right about the exhaustion affecting me and I know I will feel better for the extra weight. I already have nerve and muscle damage as well as osteoporosis from malnutrition caused by the Crohn's. That's how they diagnosed it at last. I lost heaps of weight and they thought it was 'just' anorexia and they tried to feed me with a nasogastric tube but I had ulcerations in my throat that made that unbearable. That was the first clue. So the docs decided to put in a PEG tube and when they did a scope for that they found more ulcers in my stomach. So they asked about my bowel habits etc. and decided to do a colonoscopy and found the Crohn's at last.

I've been having the PEG feeds, but apparently it isn't enough. I can't always tolerate it because I feel too sick and I get reflux too and I'm still not absorbing the vitamins etc. from it. I put on weight at first, but it came to a standstill and now I have lost again.

I know I will feel better and more energetic once I am more nourished - I have no energy at all at the moment which I find so depressing. But I am scared about the PICC line and also about the weight gain. I don't want to put on weight too fast. The anorexic side of me still affects my thinking and it freaks me out. Stupid really but it's hard to shake.

If anyone has had a PICC line, do they hurt? I hate having drips because most of my veins are shot. Also whats the difference between PICC lines and central lines and hickman lines and portacaths - I have been looking through the internet and I am just getting more confused? I'm just too tired to think anymore now.

Thanks again for your support and replies. They mean alot.
Cookie

I just watched MINI's website....WoW!!!!
It doesn't look like fun, but she is looking great.
I am thinking of asking to get it myself. I have a few stirictures and I could handle giving my bowels a rest.

It looks a bit scary, though.

Anyone got a line on how long you are generally on it?

Keep us posted, Cookie

HEY!

Im the one who was on TPN.
If you want to chat or PM me about it, please do! But here's a bit of info:
(not sure why that link isnt working for you, hopefully it will eventually)

I was on TPN for 4 months. The tube was inserted via a surgical procedure
which I was awake for the entire time. It is called a picc line. Often, it is
inserted in your neck vein, but mine was put in a deep vein in my left arm.
Ask them for that if you can. They use an ultra sounds to find a good vein.
If they used a regular vein, it would burst within a day.

While I was in the hospital for it, I was sent home and had to learn how to
administer it myself. I basically had nurse training (which is why I hope
you can view that video, it shows you what it looks like and how to work it)

You have to have a backpack that you take everywhere with you that contains
the TPN, the bag of food. I had to feed myself 16 hours a day, then I could remove
myself from the backpack.

I got 2 catheter lines. One for the TPN, one to take blood.

Once a week I visited a nurse who would change my dressing and flush
my catheters. You have to flush your catheters yourself multiple times a day.

There is A HUGE risk of infection, and many deaths each year because of it.
They don't lie to you that it is very risky, but I was 74 pounds and death was
my only other option.

I had medical supplies delivered to me (there were lots) every week from a special
facility, as well as the TPN bags, which had to be refrigerated.

It was very overwhelming at first, but once you learn how to take care of it,
it does get easier. Are you going to be in the hospital the whole time you're
on it, or are they sending you home too?

I do have to say, it works very fast. At one point I was gaining a pound a day!
it does, however, make you have to PEE ALL THE TIME! which kept me from
a good night sleep.

Make sure you NEVER get it wet. That's where infections come into play.
Taking baths were VERY difficult and time consuming.

If I think of anything else, I will post it, but do try to see the video,
and please contact me if you need anything else! I know what a PAIN
this can be- but it is VERY HELPFUL! IT SAVED MY LIFE!

Cassie

edit: there was one complication I did have. My catheters kept getting CLOGGED
despite my constant flushing. They chalked it up to bad design. They never could
prevent mine from clogging, so they had to used unclogging meds (which are
dangerous) and from then on I was SUPER anal about fliushing my line whenever
I got the chance.

AND NO! Once the line is in you, you can't feel it!
it just hurts when they first put it in.

Mini, did you ever use the elemental drinks that soup was on or know what they are?

How long can it last?

"The long-term survival prospects of patients maintained through TPN vary, depending on the cause of failure. Three-year survival of TPN-dependent patients ranges from 65 to 80 percent."

-UPMC

They told me don't go longer than a year. Also depends how strong your
veins are.

ladyB said:

Mini, did you ever use the elemental drinks that soup was on or know what they are?

Click to expand...

They never gave me that option, nor have I heard of 'em.

Thanks for the info.
I don't know what I want to do yet.
I have three little kids at home and I'm trying to find a way to let my belly rest and be able to care for them as well.
I'm gonna look into info on the drinks.

Cookie,

I had a friend a while back who was in a similar boat to you. It is extremely difficult when you end up anorexic and its mainly caused by huge food intolerance or allergy that you never knew could happen to you.

The mentality of and being used to being so thin may well fell good in your minds eye and it is a huge hurdle to overcome I understand that totally.

However if you truly want a decent quality of life back for you the best thing you can do is take it one step at a time. Sometimes that step will be the next few minutes and others it will be a whole day but do it at YOUR own pace.

PICC stands for Peripherally Inserted Central Catheter. It is a line they put in your arm and runs under the skin into a larger vein before what goes through it goes into your bloodstream. They can work well and reduce the need for changing lines so often. You might feel some pushing as it is slid into the vein (they might knock you out for it too) but they will also use local anaesthetic to numb the are so it shouldnt hurt Cookie.

A Central line is inserted either into your internal jugular vein (biggest vein in your neck) or just below your collar bone into the subclavian vein. It is much shorter than a PICC but usually only used in an intensive care environment for intravenous drugs that need quick access to the bloodstream when folk are really sick. I use them at work.

Hickman Lines and Portacaths are similar. They are usually inserted into a vein in the chest area lower down than the Subclavian Central line. They can have a port under the surface of the skin that is injected into for intravenous medicines.

The PICC is mostly used for folk not needing care in intensive care environment and you are taught how to care for it eventually for when you go home Cookie. Will be an easy thing for you to get to grips with.

Hope my thoughts make sense. I may not be around much over the weekend as going to my fiance's. Not feeling to great myself at the mo on high dose prednisolone and antibiotics on top of having the Vitamin D injection this morning so on the tired side never mind anything else.

Hang in there honey. You will get there believe me ((hugs))

soupdragon69 said:

CYou might feel some pushing as it is slid into the vein (they might knock you out for it too) but they will also use local anaesthetic to numb the are so it shouldnt hurt Cookie.

Click to expand...

They gave me local anaesthetic, but it still hurt a bit. I wish they would
have knocked me out, but they needed me awake because when the line got to the
area near my throat, I had to cough for them so it would open the vein.

They told me before I had it done that it was like getting drilled at the dentist.
It will throb for a while, but after a day, as I said before, you can't even feel it.
It becomes a part of your body!

Thats fair comment Cassie! Think we cross posted lol

Glad you saw the thread!! Your thoughts are invaluable in this one. I really take my hat off to you coping with so much ((hugs))


Molly,

I have PM'd you as I saw you comment to Cassie (Mini) about the elemental. The other thing I didnt say in it was you need to drink alot of water to make up the deficit from not eating and getting fluid that way. They are also broken down nutrients so it isnt so difficult for your body to absorb so nothing like Ensure for instance.


Hope my thoughts help.

Thank you once again for all your replies and help, especially Mini and Soup. I am so glad I found this site, I think I would have gone mad over the weekend with worry without it!

Mini, my current weight is 74 pounds too although I am quite short (5' 1"). It's better than I was when things were at their worst and I weighed just 60 pounds then. Don't remember much of that funnily enough. I know that things are pretty bad and even though I kid myself into thinking I am fine (apart from the stupid Crohns), I am not. You are right Soup, I don't have much quality of life and I am sick of being tired all the time. Some days it is all I can do to get out of bed and onto the sofa.

My gastro said that she will discharge me to continue the TPN at home once they have got me going on it. It sounds like it's a bit of a handful. I manage the PEG, but there isn't much to it really even though I've had a couple of infections (one really nasty one where I coughed and the damn thing fell out - gross!).

The idea of putting on a pound a day is ... gulp! Terrifying to me in a word. Do you think if I told them how I felt about rapid weight gain, they might lower the rate so I don't gain quite so fast? I really feel like I need to do it slowly or I just won't cope with it. I feel sick at the thought to tell the truth even though I know I need to put on weight.

Soup how is your friend now? Did they cope with the weight gain? I am trying to concentrate on the fact that I will be getting vitamins and nutrition and so I will feel better. Sorry to hear that you aren't well too I hope you have a relaxing weekend.

Molly I hope you find a way of giving your bowels a rest. Three little kids is hard to cope with at any rate without being sick into the bargain. I don't know how I would cope! Before I went on nasogastric feeds and then PEG feeds, I tried Ensure but it made me even sicker. The dietician worked out I had a milk and wheat allergy so that explained it! I had elemental drinks then but they decided feeds were a better idea, although it is the same thing only without the 'flavor' (not that they taste great with the flavor, eh Soup?!).

Thanks again for all your support. I am going to try to get someone to help me download the plug-in so I can watch your video Mini - I think it would really help.

CookieCat

Glad we can help in some way as a sounding board Cookie. Thats exactly what we are here for to rebound of each other and swap info and ideas that might help another..

My friend had to bite the bullet on the weight gain because she ended up in intensive care long term due being around 40kg at 5ft 1". She had a decision to make and coped each day as I mentioned already. She focused on the aspects I mentioned to you in relation to muscle mass and regaining a quality of life having carefully examined what she had lost. She was a dance teacher and will never do that again Cookie. Please dont let things slide that far honey!! It broke my heart watching her. She is finally on the upturn now but it has taken her a long time.

She also had a counsellor who she could rebound off and one she gets on well with. It has helped her immensely. One of the biggest factors was working out her allergies and intolerances like gluten and dairy in particular. She has crohns and coeliac disease and irritiable bowel syndrome on the GI front. She also discovered several fruits and meds too that she was either allergic or intolerant to. Might be worth exploring on your part as she suffered as you do with the PEG feeds and felt nauseous. They finally found a formula that is used mostly for children with nothing in that affects her and were able to get her off TPN and onto PEG again then finally able to eating small amounts which is where is now.

I dont get much of a chance to stay in touch now as her life is picking up and she is working hard on rehab exercise wise. You know yourself the aspects of exercise with anorexia so I wont go there. Lets just say she fights a daily battle.

My comment on the aspect of anorexia Cookie is who on this planet doesnt fight a demon of some kind? For some its alcohol, others its smoking, drugs etc but the hardest fight can be with food because its not something you can cut out totally like the others and have a mindset to never touch it again - you need it to survive.

Keep pondering, keep asking, dont ever give up ok? Me? I will be fine - my steroids and antibiotics are kicking in hence I am up at stupid oclock with insomnia lol

Thinking of you. ((hugs))

Ooh your up late Soup - or is it early? I'm like that on high doses of Prednisolone too although I am better when I am on a maintenance dose. They were trying to get the dose of Prednisolone down by starting me on Methotrexate injections, but I ran out and my doctor was away and I went downhill while I was trying to sort it all out.

Its good to hear that your friend is doing better. I used to be very active too but the nerve and muscle damage has put a stop to that and I need a walking frame to get around now. Hard to cope with when I am not even 40 yet - there is a voice in my head that says 'this can't be me'.

I'd like to get to the point where I've got enough energy for physio and exercise again. I do gentle stuff but even that tires me out and anything that involves my stomach muscles at the minute is unbearable of course. Ever tried dashing to the toilet with a walking frame? Let's just say it acts as a good bulldozer for unsuspecting cats!

I know I've got a few food allergies which seem to trigger off my Crohns. But sometimes I sabotage myself too and eat things I am not supposed to and then suffer as a result. I just get sick of all the restrictions. It's hard to be 'good' all the time and eat and do all the 'right' things just so that you can be normal. I don't know how you managed to cope with 7 months of elemental drinks Soup- I shudder when I even smell them now! I have to block my nose when I mix my PEG feeds up but also the powder makes me wheezy. Can't win.

I'm going to go back to bed now as I've been up a while. Hope you manage to sleep too Soup and thanks again.

Cookie

No probs Cookie. You know where we are. Am still buzzing so wont sleep for a while yet and have just gone a bit mad on posting here so everyone will laugh knowing I am on a pred hyper trip lol

Have to say I can only cope with citrus and orange flavours now of the elemental. Will NEVER have grapefruit as long as I live of ANY kind or format lol

Hope you sleep honey. Keep us posted.

CookieCat said:

The idea of putting on a pound a day is ... gulp! Terrifying to me in a word. Do you think if I told them how I felt about rapid weight gain, they might lower the rate so I don't gain quite so fast? I really feel like I need to do it slowly or I just won't cope with it. I feel sick at the thought to tell the truth even though I know I need to put on weight.t

Click to expand...

Yes, they adjust exactly how much you're getting and record your weight gain
on a regular basis. They told me they usually don't let people gain weight
that fast, but I was in desperate need and didn't mind. For me, the faster
I gained, the faster i could get off the stuff.

They gradually lower the calories as you get closer to your weight gain. Just like
going cold turkey off meds is bad, you can't just stop this stuff either.
Also, the first weeks will be the most weight gain simply because it is
rehydrating you. Water is a lot of weight.

My large intestine had collapsed, my organs were failing and I was severely
dehydrated. So my initial weight gain was significant!

Originally Posted by soupdragon69
Have to say I can only cope with citrus and orange flavours now of the elemental. Will NEVER have grapefruit as long as I live of ANY kind or format lol

Click to expand...

I don't blame you Soup! I could never stand the grapefruit flavor either after putting myself off it for life because I went on a grapefruit diet. Yuck! It was supposed to 'melt' fat - I think it melted my stomach to tell the truth! :eek2: Looking back, it must have triggered off my Crohn's really bad, but I didn't know I had it then. Hope you are feeling better today.

Mini, thanks so much for the info and your support. I think you are very brave! I wish I could be as brave about the weight gain but I think the only way I will accept it and keep the weight on is to do it slowly. I know my weight shouldn't be a priority, but it's been like a way of coping for so long that it is hard to give up. The more depressed I feel, the more I cling on to it. There are other reasons I became anorexic too and although I try to work on those it is like Soup says a daily battle.

One thing I'd like to ask you Mini - is it possible to travel when you are on TPN? I was planning on going away at Christmas time to be with family. I traveled last Christmas with the PEG (one whole suitcase was full of feed formula, tubes, bottles and meds LOL), but the TPN sounds more complicated.

Thanks again for all your help. This site is just so great.

Cookie

Oh God! I finally managed to watch your movie Mini and although I found it gave heaps of information I am feeling very freaked out now. It all seems very complicated and scary, especially with the risk of infection and air in the line. My PEG seems like a walk in the park in comparison!

I guess I will get used to it and they won't send me home until I feel ready? I know they have nurses here who visit people at home, so I suppose they will do that too. By the looks of all the stuff they sent you each week Mini it is going to be hard to travel while I am on TPN. Maybe they can send it to the address I am staying at?

Feeling really yuck today. Had to take an oxycontin tablet because the pain just got too bad, which I hate doing. I try to save them for when I 'really' need them - which means I put off taking them most of the time. But I just can't deal with it right now on top of everything else.

Cookie

Hang in there Cookie things will improve gradually. Just take it one day at a time honey.

((hugs))

I'm sorry to say that I am beginning to feel like I can't go through with this. It all seems too much. I want to feel better but it seems so risky with the infections etc. and the idea of gaining weight that isn't in my control is terrifying for me. Maybe I can just get ivs or shots of the Vits I need? I know I sound like a chicken, but I can't help how I am feeling.
Cookie

I can really understand why you are saying what you are here..

Fear is a terrible thing to face Cookie. Fear of the unknown, the implications of taking action, the speed that everything has hit you, so many aspects to take on board and follow through on.

When you have been anorexic for many years and its been triggered through no control of how your body reacts to things its a massive hurdle to jump.

Have you got someone there you can talk to in depth about how you are feeling? Someone like a counsellor who could help you plan a way forward and give you constructive support through this on virtually daily basis for a while.

I know your head is really spinning here Cookie but if you stick with ivs and shots of stuff for the rest of your days you literally wont survive honey. You need a certain level of muscle and body fat to help those vitamins and minerals to be absorbed and allow them to work so you do improve and feel better.

You arent a chicken honey you have come such a long way already on this one by coping with everything until now and its just a case of getting second wind on this ok?

Take a step back from everything and ease up on yourself here. Take one thing at a time. Get some better support too! You will see it will come right in the end. Trust me on this one.

Hang in there. Dont give up now after all the coping and work you have put in to date honey.

Thinking of you ((hugs))

DEFINITELY- don't feel bad being afraid. It's a constant battle for all of us, I'm sure.

I was the most depressed I've ever been while on TPN. It literally felt
like a chain and like I was a slave to it, but gradually I found myself refusing
to let it hold me back and I was able to go places with it when I needed to.
That's what the backpack they give you is for.

Believe it or not, I actually went to a concert with it! Granted, I was seated,
but it took LOTS of convincing from my husband to get me to go because
he knew I really would feel I missed out if I didn't go. I was just so scared
at all the things that could go wrong. Before we left we GPS'ed every hospital
in the area in case of emergency. Looking back, I'm glad I went and overcame
that fear.

As with everything, you have to weight the benefits over the risks sometimes.
There are so many things that can go wrong with everything if you think about it-
meds, surgeries, procudures. Even for a colonoscopy they make you sign your life away.
But have to keep fighting for our right to be healthy and live a
semi-normal life.

That's also what is so great about this forum. Everyone here understands what
everyone else in the world can't. Just speaking for myself, feeling alone is what
makes me the most depressed. But here I don't feel so alone

I know when I'm stuck back in the hospital this week you all will be on
my mind!

Thanks so much for your supportive words and thoughts. I can't say how much this site has helped me through the past few days.

I wish now that my doctor had admitted me on Friday like she was going to at first. But she remembered that it was the weekend, and things move slowly in hospital on the weekend so she set the date for Tuesday. Unfortunately it has just given me more time to get worked up about things.

I know in my head that you are right Soup and that the TPN is the only answer - the doc would have suggested it if it wasn't. Today has kinda proved that to me too - my head has been literally spinning whenever I stand up and I feel like death. But there is still part of me that is screaming 'NOOOOO! There's got to be another way'.

It's true though that I have coped with everything till now. The nasogastric tube was a big deal at first and then the PEG, but I got used to both of them. I don't even think about my PEG most of the time now, it is just a part of me. I guess I will also get used to the TPN.

You asked Soup if I had anyone supporting me. I was seeing a therapist before I got diagnosed with Crohns but she left town. Since I was diagnosed I have to confess I haven't been entirely honest with the docs and dieticians etc. about how much my anorexia still affects me. Some days are better than others, but it is always there and I know it has a big impact on my Crohn's and why I haven't really put on weight. I fight against myself everyday. Being on a restrictive diet doesnt help either. Like you said Soup, food is an addiction that we have to learn to live with - I can't simply give up eating like I could if I was a smoker. I have to find a happy medium and that is so hard. And when the dietician wants me to keep food diaries to see what triggers my Crohns and keep a close eye on my weight, that just feeds the anorexic thinking. It is so hard!

Cassie, I will be thinking of you while I am in hospital this week too - pity we couldn't be in the same place we would have fun I think! But you will definitely be my inspiration because I look at that movie and know you coped with it and even went to a concert with it! That's great! I am sure others have coped with much much worse than what I have to deal with, so I will get through this. I am just so bloody scared!

The worst thing is that I have really been playing the whole thing down to everyone around me in real life. I just can't deal with them fussing on top of everything else. My Mom got me some new PJs and dressing gown yesterday for the stay and I just wanted to cry.

Only one more day to go now though and then I can deal with it for real instead of get myself worked up.

Cookie

Cookie sometimes the anticipation is much much worse than the actual event isnt it?

The thing about anorexia is you internalise so much and need to keep control of the food as its the only thing you can when so much is beyond your control. Does that make sense?

Sounds like you need to open up a bit more to those around you Cookie if you truly want the help and I know you do then reach out for the help you so desperately need now!

They will be there for you but only if you "allow" them to be. That in a sense is control too isnt it? Think about it. Just need to work out a different way of making progress.

A counsellor might also be a good thing for you. Pity your last one moved as it sounds like you had a good bond there then retreated!

You will get there honey. One day at a time remember! ((hugs))

Thanks Soup. I know what your saying is right. At the minute the control I have is false - it isn't really control when I feel like I am going to fall over every time I stand up!

My anorexia is very much to do with trying to control things and the more out of control I feel the more I restrict my eating etc. Doesn't work well with Crohns at all.

Having your support here is giving me the guts to talk to the dietician about starting off on a slower rate of the TPN so I can get my head around it and get used to it. I know from the past when I have been made to put on weight fast I just panic and lose it again as soon as I can because I just cant cope.

I am trying to stay focused on feeling better and being well enough to travel at Christmas so that I can visit my family rather than the putting on weight part of TPN. I'd like to have a bit of energy to do things then too, at the moment I dont have energy to do much at all. Sitting here at the computer, watching television (but not absorbing it) and reading are about all I can manage right now which just makes me more depressed.

I also dont see my friends much anymore because I knew most of them through work and leisure. Now I am not working and not well enough to go to social events I dont really mix with them. When they do make the time to see me, it is hard for them to know what to talk to me about. I have also got to admit I am not much fun to be around anymore either because I am always sick, can't eat and if we do try to go to the cinema or whatever I often have to cancel from having a bad day. So I am pretty lonely to tell the truth. But as you said Cassie, this site has made me feel like I am not so alone.

Cookie

Well tomorrow is the big day. I have got to say I am totally freaking out now. Every time I think of it I start to panick! Gulp.....

I am half-expecting that they wont call me to say there's a bed for me after all, I am so used to things screwing up on me. In one way I am hoping they wont call, but I know that if I have to wait any longer I will be out of my skull with worrying about it.

I am really hoping you are right Soup and that the anticipations is worse than the actual event. I think I will feel heaps better once I am in and everything is happening.

One thing I wanted to ask you guys, what does a barium meal involve? I haven't had one and that's one of the things my doc wants to do while I am in. Doesn't sound like fun.:eek2:

I actually wish I could have a drink right now - anything to take the edge of these nerves!

Cookie

A barium meal is is a CT Scan in which you have to drink 2 big barium "smoothies" (its a white liquid and is there for contrast on the screen). Basically you drink this and they can go in and then inject your veins with another dye and then see your intestines. They use it for the small intestines a lot. It can detect ulcers and strictures or inflammation.

Its not too bad, mine was just bad because I had the barium liquid and colonoscopy prep all on the same day, it was just too much to drink! Mine was also "flavored" and it was "berry". I thought it tasted like potpourri.

The barium contrast can tend to constipate people (mine didn't because I had the colonoscopy prep right afterwards).

Good luck with everything!

Thanks Katie,

Now you describe it, I have a feeling that I actually had one some time back but I was really sick back then so I don't remember it clearly....

Potpourri flavor doesn't sound terribly appetizing! Actually, the idea of two big smoothies of any flavor makes me want to gag right now . The idea of being blocked up for a while sounds like welcome relief though.... I have been dashing to the toilet so much in the past 24 hours I feel like I may as well set up a bed there!:eek2:

The clock is ticking on, and I am getting more worked up by the minute.....

Cookie

lol, just realised your about the same age as me, and here i was telling you to respect your elders in chat

ha ha!

best wishes for the hospital trip cookie. nice to meet you in chat.

Jed

Lol....

Well you are older than me in terms of experience Jed so I respect that!

Thanks for the support. Nice to meet you too.

Gotta go and finish getting ready now...... *GULP*

Cookie

and dont worry about the pic lines!

implants are cool!

see, check out this person, she cool...



sorry, end nerd time here...

LMAO Jed!!!!:ylol2: :ylol2: :ylol2: :ylol2:

Thanks for that... it really made me smile.

I am in hospital now... and am relatively happy as I have got a private room down the end of the ward, so it is nice and quiet and I wont be exposed to as many germs either. Plus I have my laptop and mobile internet connection, so I am set.

My gastro doc came to see me earlier to talk through her plans for me. I am going to have a special CT scan done tomorrow (I can't remember what it is called, but it is not the usual type) to see what state my guts are in. The doc has been talking to the dietician and they may decide not to put me on TPN but try a different sort of PEG feed first which is specially designed for people with IBD. So I may avoid that implant yet Jed... sorry to disappoint you!

At least the waiting is now over and things are happening. Not too happy about having to do a bowel motion chart though..... feel so sorry for my poor nurses! I wouldn't want to be a nurse with a patient with Crohns - yuck! :ywow:

Starting to feel nauseous again so I better go for now. I'll keep you all posted.

Cookie

Thinking of you Cookie..

jed said:

and dont worry about the pic lines!

implants are cool!

see, check out this person, she cool...

sorry, end nerd time here...

Click to expand...

My husband always called be a sexy borg while on TPN :ylol2:

Do keep us updated Cookie! I'm sitting here in the dumb hospital bed myself.

Thanks guys.

Well it took the doc four attempts to get a line in... ouch, ouch, ouch, ouch! I was not at all happy! And no, it's not the PICC it's just a basic line for now - they haven't decided whether to do the PICC yet but I needed fluids because I was dehydrated and also they put me on IV prednisolone and potassium because that was low too and they said it can affect your heart.

I am feeling so pooped now - literally as well as figuritively! I hate running to the toilet attached to a drip and the fact that my mobility isn't great makes the whole thing even more of a trial! At least I have a toilet nearby... thank god for small mercies.

I'm going to have a nap now I think - hopefully I can sleep for a while.

Cookie

I totally hear ya. I hate dragging the machine on a poll into
the potty with me! Gotta do that now actually....

think thats why i loved my PICC line so much cookie, no more IV canula's taking 4 attempts to find a bloody vein!

i remember my arms were black and blue from those damn things, annoyed the hell out of me.

and yep, moving those IV stands around was just annoying, i always seemed to get the one with the shopping trolley wheels on it...

grrrrr


get better lil one!

Thanks jed.

Sorry for ditching you guys in chat. Keep getting disturbed here... no rest for the wicked!!!

Spoke to the dietician today. Looks like TPN is the go after all - I've lost more weight than I thought. So yeah, I'll be a cookie with implants soon. Happy now Jed?

Hopefully getting the PICC line doesn't take so many damned attempts. My current iv thing is falling out - it's not taped properly and has come loose. I'm not going to be happy if I have to get a new one before the PICC.

I'm soooo bloody tired. Feel like going to sleep on the toilet so I dont have to wake up all the time to go there!

Cookie

CookieCat said:

. Feel like going to sleep on the toilet so I dont have to wake up all the time to go there!

Click to expand...

Me too!!!!

They have busted 3 of my veins as well since I've been here.
Don't worry, the picc line will get in fine- they have an ultrasound for that
to find a good vein. Keep us posted on how it goes- I;m glad they're
helping you out, it will make a world of difference!

Thinking of you

CookieCat said:

Sorry for ditching you guys in chat.

Click to expand...

meh, people drop in and out all the time, dont worry about it