Hospital

[CookieCat]

Hi all,

I decided to move over here since I guess I am not quite so new anymore and my story is not so much of an introduction and about TPN.

Gotta warn you though - be ready for a major moan!!!

I am not at all happy. After fasting all day, they never got me down to do the test. Ugh! I haven't missed food really (still nauseas) but I've been soooooo thirsty! My tongue is sticking to the roof of my mouth. And now they've finally sent a meal - but not much on the tray I can eat. Typical. What is it about hospital food that makes it smell so gross?

Plus they've added Potassium to my drip - boy that stuff stings! My hand where the drip is in is aching so much I'd like to cut it off.

Sorry about venting but I'm just feeling so tired and fed up. Even though I've got a reasonably quiet room the constant coming and going and everything has made sleep virtually impossible.

The test I am having is not actually a barium meal but something similar called a small bowel enterolysis. They stick a tube down (thankfully with me through my PEG - it has it's bonuses!) and inject barium and methylcellulose and air so they can trace the barium's progress through the bowel. Anyone had one of these? Sounds OK relatively speaking - better than a colonoscopy at any rate!

With any luck they'll do it tomorrow - hope I don't have to go too long fasting again or I'll start to dream I am in the Sahara! The dietician and my gastro doc are also going to get together to discuss the TPN/other options.

Sigh... this ain't much fun!

Hope others are doing OK. Mini, still thinking of you... i love the way you put things 'dragging your machine on a poll into the potty' makes me laugh everytime i do the same now! :ylol2:

Cookie

 

[jed]

if your mouth is icky, my hospital had these minty sponges on a stick. sorta like a thing to clean your mouth without brushing. see if they have them

 

[sheilag]

hi cookie,

just a note to say i hope things go well for you, i have been reading your posts and my god you have been through so much as i know a lot of other people have too. i know it is hard but you WILL come good, i know you will. i have also joined this forum a few weeks ago and find it fantastic, so much support, my symptoms pale in significance which i have said to mini aswell so i feel im very lucky as i know how bad this disease can get, my mum and sister also have it but they have had a lot of there bowls removed and i have seen first hand the pain you can get, i am starting meds today and i hope they have caught it early, i have inflamation in the illium, so hopefully the meds will relieve that. I have a funny feeling this disease has been brewing for a long time with me and has now finally shown its rather ugly head:voodoo: . anyway enough about me, i really wish you well and hope your stay in hospital will be a short lived one.:lol:

thinking of you,
sheila:smile:

 

[CookieCat]

Hi Sheila,

Thank you for the lovely words and thoughts. But don't sell yourself short. I really like the Sticky Message at the top of the "Your Story" thread that Mike wrote - that we really shouldn't compare one person to another, and everyone's experiences are valid and worthy of compassion. Yes, I've had a rough time, but so have you. You must be very scared about a possible diagnoses after watching your mom and sister go through the effects of severe crohns. I really had no idea what the diagnoses meant - but I am learning fast!
I do understand that it can help to realise that there are people worse off than you though - it helps you stop feeling sorry for yourself doesn't it? I do this too. There is always someone worse off. But remember that you still have a right to receive sympathy for what you are going through and support just as much as me or any of the others who've had hard times, and you are allowed to vent and feel sorry for yourself too from time to time...
As for me I've managed to pull myself out of the doldrums a bit now - I managed to eat and keep down a bit of soup (thought of you Jan ) and my fluids are obviously better cos I'm starting to pee again lol! Looks like I won't be having the test tomorrow either cos they havent got me fasting again. The doc said it wasnt done because they didn't have the right sort of contrast here (I live out in the sticks a bit), and she is fighting to get it here for me. So maybe they are waiting until they know for sure whether they have the contrast before they starve me again! Hope so!
Gonna go and have a nap now - I am so exhausted with lack of sleep and painkillers. Was interested to read the 'Rock a bye Crohnies' ... that's so true. I am lucky to sleep for stretches more than two or three hours.
Cookie

P.S. Yeah Jed - I've had those minty sponge sticks too when I was in HDU last year but I'd forgotten about them until you said!

 

[soupdragon69]

Did laugh when I read your comments Cookie!

What you dont know is how I got my username.... When I was a young child I was mad about a kids TV programme called the Clangers and in particular Soupdragon. I also was and still am mad about Soup! When at primary school (5-11yrs) I used to take soup to school EVERY single day for lunch rain, hail, snow or shine! I just love the stuff. The 69 is just the year I was born..

My dad calls me Soupie for short at home!! So keep on thinking Cookie and keep at that soup girl if it helps lol

Glad you are on the upturn a bit. Good to hear you are. I think I am turning the corner slowly but surely too. Just have to try and behave if I can - hard thing to do when yer a leprechaun! ;-)

 

[CookieCat]

Hey Soupie, that made me laugh too!:ylol2: Soup is one of my fave foods - generally easy to digest and OK with my tummy. I picked my user name from a nickname too - my first word was 'cookie!' from Cookie Monster on Sesame Street, but I used to meow like a cat if I wanted one. Go figure.... :tongue:

In other news.... got my PICC line put in today. It was OK, although it got a bit traumatic for a while when the line got threaded down the wrong vein a few times and they had to pull it out and start over again. The main thing I felt was an aching feeling, like I had suddenly pulled a muscle in my armpit and chest. The line goes in at the top of my left arm (good thing because I am right handed, so it will be easier to hook myself up) and is threaded through my shoulder and across my chest/collarbone to the other side. So far so good - although I don't know if the local is still in effect LOL!

They just have to take an Xray to make sure it's in the right place and then they will start the TPN. Am going on a clear fluids diet with it - they decided not to stop all oral intake because once I stop eating I find it real hard to start again. Hopefully it will help. Last night I got in so much pain I would have done anything to stop it even if it meant gaining weight. I got weighed yesterday and my weights down to 64 lbs so even I can see that I need to put on weight. I didn't realise how low I got!

Hope all my other cyber hospital pals are doing OK too.

Love,
Cookie

 

[CookieCat]

Think the local from getting the PICC put in is starting to wear off. Feeling pain in my armpit and neck (?). I hope to God it's in the right place.... don't want to go through that again! Cassie or Jan, any reassuring thoughts?
Cookie

 

[CookieCat]

Meh! Sorry for the three posts in a row but I need a moan....

The XRay showed the damn PICC went in too far. So the doc came and pulled it out a bit (without putting local in again) and I need to go down to XRay again.

Drat and damnation! :ymad: And my shoulder and neck are really aching. I know I am being a wimp but it's just this on top of all the other pain. Plus I had an 'accident' earlier..... and not a 'wee' one either.:blush: Getting to the toilet with the IV and my walker when I'm dosed up to my eyeballs with painkillers just isn't fast enough right now. I feel so humiliated and embarrassed. :frown:

Cookie

P.S. On the bright side, I did find myself an avatar... what d'ya think?

 

[CookieCat]

Sorry ... make that four posts in a row. :blush:

I am feeling so damned miserable. After the second XRay, the place where the PICC line got put in started bleeding (thanks to the jabs of blood thinners they have me on) so they had to remove the tape and put pressure on it and then clean it all up. Which meant more fiddeling around with it, so it is absolutely throbbing now.

The XRay showed it is in the right place so they've started the TPN now - middle of the night here. My arms and chest are sore, my bones and joints are aching, my legs are twitching with nerve pain and I've got tummy cramps as well.... got to confess I'm bawling. Just not coping with it all...

I'm really sorry to moan like this; I know this is nothing really and I'll feel better tomorrow but it's all just to much. I hope you guys dont mind - you are probably all totally sick of me.

Cookie

 

[CookieCat]

I feel so bad I couldnt be there for you! Anyone here knows I am there for all.

You were there for me Pen! Even if chat wasn't working, the fact that you tried so hard and cared enough to post makes me feel less alone.

Sorry I've been so down and moaned so much. It isn't like me, honest. It's just all been getting to me 'cos of the IV Pred and being so damned tired and the constant pain attacking me from all angles. I am not coping as well as usual.

Hope the Bazaar & Dessert went well. See you were also supporting me (and everyone here) through that... if it helps our cause then it's great!:thumleft:

I may not know you very well, but I already know that you are there for all. I have seen it with my own eyes and that's why I PM'ed you to chat. Thanks so much for trying.

Cookie

P.S. I'll try not to moan too much now promise! :ybatty:

 

[jed]

moan on i say!

we listen to you moan, you listen to us, its a beautiful little circle

p.s. avatar is cute

 

[kello82]

you reply to my thread i reply to yours!! haha
aw girlie i cant believe all the mess with your picc line i have had a few in the past, but never any troubles with the placement and everything, thats horrible! i remember the aches from it just being in there normal, much less in the wrong place. owie.
hahah i was cracking up about the little sponges on a stick before i was diagnosed, i was in the hospital with c-diff not able to eat/drink and those little pink sponges are a LIFESAVER!
i hope the TPN starts kicking in and giving you some energy and relief
and much agreed with jed, moan on sista! you deserve to.

 

[RHOV]

go ahead and vent! where else would you be able to complain and get nothing but sympathy but here?

i really hope that you start feeling better soon! *hugs*

 

[MINI Cooper]

We all deserve a good moan!

I finally got discharged today from the hospital.
Sent home with more pred and Azathioprine for after I'm
off the pred.

Cookie, keep up the good fight! I know how tough it is, first hand.
Hang in there!

 

[CookieCat]

Hi guys,

Thanks so much for hearing me and letting me let off steam. It was just such a crap day yesterday it all got too much. The PICC line stuff up was prob due to the fact that they didnt do it with ultrasound. The doc (well actually a 1st year out) put it in up here and then I was sent down to Xray to check where it was. I don't know if its cos they dont have the facilities or what.... like I said, I live out in the sticks so that's probably why.

Oh well, I got to meet a very 'interesting' guy down in the Xray department. He said he thought he had a busted rib but he was talking non-stop and then he said he had IBS and how he was on codeine and oxycontin and they did nothing and they should give him morphine. :yrolleyes: I'm like 'yeah right mister'.... my gastro doc actually had it out with me the other day for not taking painkillers when I needed them and I shouldnt waste energy suffering if I didnt need to. But I dont ever want to get like that where nothing works! :eek2:

Today's been better, but pretty much non stop. Had so many docs and specialists come to see me! Also had a tangle of tubes and bags going through me all day - on top of TPN, I've got the IV Pred, antibiotics (got an infection somewhere they say), potassium, calcium, Thiamine, and a multi-vit! I can see why you said now Jan that I couldnt just have things IV... I'd be here forever! The dietician said she'd normally put them in and mix them up with the TPN (like your video Cassie), but they are only running a small rate at first so my body copes but they still want me to get all the extra added things. Boy has my drip pole been heavy today!!

Good news is I am starting to 'dry up' a bit, if you get my drift and not having to dash to the toilet so much. But talk about pee!!!! This little piggy went 'wee wee wee wee' all the way home!!! :runaway: :ylol2:

Thanks again guys. Bear with me - I'm not always such a soggy cookiecat!

Cookie

P.S. Yeah Jed, I thought the avatar I chose was cute too. There were funnier ones, but not with both a cookie and a cat in it. Like your new one too.

 

[CookieCat]

Rats! I knew the single room was too good to last.... they needed it for an isolation patient today so I got moved. At least it's only to a 2 bed bay, and my roomie seems to be quiet so far....

Sometimes I think that maybe I am just a little too patient and understanding with the nurses.... I waited again today until after lunch to have my shower because they were busy, and I am still trying to chase them up to get the dressing changed on my PICC line.... as Mini reminded me, it is due to get changed 24 hours after insertion and it has now been well over that.Tell me, why do I have to remind them??? I have a nice bruise running up my arm and along my chest and you can actually see the wire under the skin! Hmmm.... "interesting" is one word for it. :shifty-t:

I also didn't get a fresh jug of water today either and the doors to the toilet and shower in this new room are so heavy I can hardly manage them with the drip stand and my walker. Humph! I know they are only little things, but things like that get on top of you in here. :frown:

Wish I could say I was feeling soooo much better on the TPN, but I guess it will take a while. Sorry for being a grouch again.

 

[jed]

hey cookie, i see so much in the australian news about more funding needed for nurses and hospitals because of things like this.

it sucks when your on the receiving end of it. been there myself

{{hugz}} for you

 

[MINI Cooper]

Rats! Sorry to hear they moved you!

yeah, sadly, reminding people how to do their job has become
commonplace since I've been sick. But being how your life
is in these people's hands, there is no excuse for them to be
forgetting things like dressing changes. I had to remind them
far too often myself.

I hope you start feeling better on the TPN soon, it does take time,
especially as bad off as you were and they're obviously
starting it slowly for you, which is good. That's a lot for the body
to take. But your bowels will eventually appreciate the rest.

Hang in there! ::HUGS::

 

[Guest]

sorry to read what you're going through right now Cookie. and don't worry about moaning in here... we all know how it gets to us sometimes, especially when you've been pierced, prodded and manhandled the way you have. i just wish we had a Crohns Forum rep in every corner of the world, then one of us could have come to give you a hug when you were crying

good luck with everything from now on.. hope you've turned the corner and things will get better soon!

 

[CookieCat]

Thanks guys!

Yeah, I guess I am just starting to feel a little fed up with things here - no pun intended relating to TPN, although no doubt that's got something to do with it too LOL!

The moaning man down the corridor has now become 'Mr Moans' in the next door bay!!! Arrghhh! :ymad: He has been going ALL DAY and it driving everyone on the ward (incl. staff) insane! Even with ear plugs in, I can still hear him! :voodoo: My roommate has spent most of the day down in the cafeteria to get away from the noise. Unfortunately that's not an option for me as I am tethered to this pole and the pumps have limited battery life, so I can't get out for long.:yfrown:

Also haven't been feeling too flash today. My blood sugar levels have been 'bouncing' as they call it and going up and down from the TPN because my body is trying to adjust. To add to the fun, I've hit that time of month (close your ears please boys! :redface: )... something so not fair at my weight when you are supposed to stop, but I have a bleeding cyst so I still get that 'time' every now and then. So I've got bad cramps low down as well as the flare up in CD pain. Meh... :frown:

On a funnier note, the elderly gent in the next bay was also calling out this morning, but I have more time for him.... he has had a stroke or something and cant' talk much or do things for himself. When he got his breakfast tray this morning, nobody came to help him, so he was calling out 'Eh! EH! Num-num-num! Num-num-num!" (Yum-yum-yum!) I guess this translates as 'Will somebody please come and feed me I'm hungry" Lol! :ylol: Bless him, it must have been so frustrating staring at his breakfast with his tum rumbling away! I would have helped him myself if I was allowed!

Thanks again for the support and listening to my whining. Even if you haven't got a rep in every corner of the world dingbat, in some ways this is better because I can reach out any time and feel I can cry on your cyber shoulders. I'll get there - just have my down hours/days. Even though I put on a show of being accepting and patient with the nurses and my family I don't cope at all well with being cooped up and it seems to bring out the worst in me sometimes :redface:. But it does help to vent, so thanks!

 

[CookieCat]

Had some sort of siezure this morning from my electoryltes being mussed up on the TPN. It scared the hell out of me.So I'm feeling pretty lousy and miserable. May not post much for a bit.

take care all.

 

[soupdragon69]

You will get there Cookie. Get some rest. You will bounce back. Your body is trying to sort itself out with so much to "absorb".

Talk to you soon ((hugs))

 

[MINI Cooper]

Geez, I'm so sorry
You're always on my mind and in my prayers.
Just hang in there- We'll still be here when you need us!

 

[kello82]

i hope you are getting somed good rest now cookie
thinking of you
and of real cookies too:ybatty:

 

[CookieCat]

Thanks so much just reading your words helps. I'm hanging in there but i've had more problems today and had a hypo sugar attack down to 1.4 and theyre having trouble to bringit up. my liver isnt coping - they saidthats why but i didnt really understand. I'm very confused about it all. Guts are crampng up too so that's also not helping and they keep prickng my fingers! If i dont post it may be because they said i might go to the high dependecy ward. Wish I could take inwhat they are saying more but i cant think straight.

 

[soupdragon69]

If you go into HDU remember we are with you in spirit Cookie.

Give yourself a few days to pick up with the extra support and care there.

The confusion is part of your blood sugars swinging about and with your liver under strain its no wonder you feel so rubbish honey.

Just take it one hour at a time and sleep lots. We will still be here waiting for you when you are on the rebound and back to your zingy self dont worry bout that.

((hugs))

 

[sheilag]

ahh cookie,
i will be thinking of you, i feel so bad for you, but you will get through this and as jan says we will be waiting for you, life can be so cruel sometimes cant it! just get better cookie, you are such a beautiful and kind person I know you will get through this,

sheila

 

[CookieCat]

Hi again, and thanks for your messages. I'm still in the HDU - actually they are fine with my using my laptop in here and even letting connect with their network. But I've felt so crap and vomiting so much I haven't been able to post here till now but I've been reading a bit. As well I've got a nasty line in my wrist for arterial blood which is really painful. But its getting better now and I've been more stable. My sugar levels went down to 1.4 at one stage and I had a shaking fit from it. They said it was very low.

It's all been so frightening and hard to handle. So much for only being in a week to get the PICC line and starting TPN. But my doc says it shows how fragile and unstable my body was. At least I now seem on the right track and they think I can go back to the ward tomorrow if I stay stable. So please keep your fingers crossed.

Sheilag, thanks for saying such good things about me. I think you and everyone here are great people too and I'm so glad to have met you.

 

[kello82]

fingers crossed!
your whole situation sucks horribly, but i have to say im glad that this all happened in the hospital and not after you went home with the TPN. that way the care you needed was right there.
hope that your next post comes to us from the regular ward

 

[CookieCat]

Thanks Kello, I'm sorry to say I'm not on a regular ward yet but my sugars have been heaps more stable today so its looking good for getting back on a ward tomorrow. I am feeling better in myself anyway - even managed to watch a bit of TV tonite. Still really tired tho.... says Cookie yawning!

One huge bonus is I got that painful line out of my wrist - well it fell out today when I had a shower and the water got under the dressing. :ylol2: I was real worried they'd put another one in, but they thought I was doing OK enough so they didn't... phew! The bruise I have got there is spectacular because it went into the tissue for a while and its all swollen up. But at least its out!

You're right tho, Kello - at least all this happened in here and not at home. That would have been real scary for everyone! On the down side it looks like I'm gonna be in here for a lot longer than I thought.

 

[Guest]

At least I now seem on the right track and they think I can go back to the ward tomorrow if I stay stable. So please keep your fingers crossed.

goes without saying.. got everything including eyes crossed for you here am really glad to hear things seem to be going in the right direction now.. even if it's slowly. just let your body and mind get used to taking this time out of normal life right now to give you a chance of a better one once you do get out of hospital.

Pen is right - sometimes we're itching to get out of there, but being on a ward where there are medical staff on standby is absolutely the best place to be when our bodies are unstable.

thinking of you.. and wishing you positive steps only from now on. x

 

[CookieCat]

Good news... I made it back to the Ward this afternoon! Feeling very, very tired as I 'sat out' this morning after my shower and then they kept on saying I'd go to the Ward any time soon so I stayed in the chair. And then there was all the commotion of packing up and unpacking etc. So my eyes feel like they are falling outa my head now. :yrolleyes:

I know you are all right, that it is better to be here and get well so that I can get the energy and oomph to return to a better life when I get out. It's just so hard to wait and be patient. Keep thinking of all the things I wanted to do in the next few weeks. :ybatty: Missed my nephews first piano concert today and I was supposed to go to a party and a show next week too, and its not looking like I'm gonna get out of here any time soon. The doctor is even saying that they may just transfer me to another hospital to have special tests done that can't be done here. It will be in the same city as my sister and her family, so at least I will still get to see them at Christmas but that was not how I had planned the trip. But after all the probs my body has had getting used to the TPN, they aren't too keen to send me home on it now. Sigh....

Anyone else had blood sugar probs on TPN? The term they've been throwing about here is 'hyperinsulinemia' (sp?). Also like I said on the other thread I'm worried about the side effects of the IV hydrocortisone - is it going to turn me into a moon-faced midnight muncher? :confused2: Not that I don't love you guys who are, but I worry about it for myself. Don't think I could handle it on top of everything else.

Thanks again for all your support and wishes to help me get well. It is so good to be able to talk to people who really do know how it all feels.

 

[CookieCat]

Ok, I know this is something little and I shouldnt get worked up over it but I am . I just found out that I cant use the toilet near the room here - I have to go not one, but two rooms down to use the toilets there because the patients in the next rooms have contagious conditions and there is an infection risk.

Of course I dont want to pick up an infection but I am feeling so weak after the past few days now and getting about with my walking frame and the drip stand was hard enough before! The damned doors are so heavy too! And you guys know what its like to be in a hurry.:eek2:

The only other choice is to move to a 4 bed bay, but right now I just couldnt handle that. I've only just settled in to this room, and was so glad I had no room mates and had a bit of space and privacy and peace after being in the fishbowl that is the HDU. I need to sleep so much and still havent managed - damned pred!!! :ymad: I am also having that enteroclytis barium test tomorrow and I know I am not gonna cope if I dont get some sleep. :yrolleyes:

So I guess I am just gonna have to buzz and hope the nurses are able to come quick smart or make my way as fast as I can.

Like I said, I know it's not a big deal but I am blubbering away over it like a kid atm. Just not able to cope with it after everything the past few days.

 

[sheilag]

kind wishes

hi cookie,:tongue:

well you have finally moved into a ward, thats great, i really hope things will get better for you soon and I will be thinking of you and wishing kind thoughts for you, you will get through this because just reading all your posts you really are a tough cookie i better go because im in work and im just sneaking in and out of the forum, checking you all to see how ye are doing, so chin up and will check in later.,

your irish buddy,

sheila

 

[MINI Cooper]

Hope they get you back to the ward soon Cookie.
I'm here in the hospital again too.
I just posted in my other thread, so I'll spare
the details here. But after some comment about how
I am breaching security by going online, they finally
have let me use my laptop in here. Sometimes
complaining gets you what you want

 

[kello82]

you will get through this because just reading all your posts you really are a tough cookie

tough cookie! haha i love it, and its totally true

yay that youre back in the ward! but sorry that theyre talking of moving you to another hospital. just gotta take it one day at a time i guess. much easier said than done though, i know.
lol *sings* "take one step at a time, blah blah blah blah blah...." idk all the words haha:tongue:

also, i dont remeber the iv pred giving me a moonface. the other side effects im not sure about. moonface was always my top concern lol

keep on keepin on *hugs*

 

[MINI Cooper]

lol yeah Ive been on pred now 4 weeksa and I keep
worrying Im going to get stupid moonface.
but nothing yet...still sleeping good too at least

 

[jed]

 

[CookieCat]

Aww .... thanks guys - esp. Jed! That pic is so cute - brought a smile to my face!

And thank you Sheilag for taking the time off of work even if you werent supposed to so that you could post such kind words.

Yeah I am a tough cookie - try to bite me and I'll break your teeth! LOL!!! :lol2:

Thanks for the reasurance about the dreaded moonface too. I mean, I wouldn't mind if my face filled out a bit and I didnt look so thin there, but there are limits!

Doing better today just really, really tired still. Got my test in a few hours - gulp! I'm gonna try to get a bit more sleep before it, but just thought I'd check in here and see what was happening. Glad I did too - feel like I've just gotten a giant cyber hug from you all. Thank you!

 

[jed]

good luck with the test cookie!

 

[CookieCat]

Well today just ended up another of 'those' days.:yrolleyes:

Went down for the entroclytitis test at 9am. First of all, they decided they couldn't fit the tube down my PEG so they tried a nasalgastric tube. Thanks to the massive amounts of lignocaine gel they squirted down my nose to make it more 'comfortable', the back of my throat went numb too. And they kept asking me to swallow but as I'd fasted from midnight I was totally dry. So the nurse squirted water in my mouth to help, which hit the back of my throat and made me choke real bad. I almost blacked out! They got all antsy at me and decided to pull out the tube and stop.

Then they rang my gastro doc and she came down herself and looked at me and decided to take my PEG tube out and go thru the stoma. Much less traumatic except the stoma led up the wrong way. So they had to fiddle and twist and twiddle with the tubes and lots of guide wires to try to get it to go in the right direction. At about 12pm they finally got it into the duodenum, but had trouble getting it past the 'flexure'. So they decided to break for lunch, send me back to the ward and hope that peristalsis (?sp - the natural motion of the gut) would help the tube get past the bend.

Went back an hour later, but no luck. The damn tube is still stuck. They tried to put some barium contrast in but it refluxed back up. At least I now have proof of how bad my reflux is on screen! The technician also said that he thought the tube was getting caught in 'irregularities' it the duodenum - poss. strictures or ulcerated pockets. Weird to be hoping they find something but I am because if they find the problem they can work on the answers!

Anyway, after a bit more fiddling they decided to give up again and leave the tube in overnight and get me back in the morning. Hopefully the tube will have found its way around the bend and they can do the whole small bowel but if not then they will just do what they can.

But... in between all this, I was left fasting all day. And nobody checked my sugars. So I went 'hypo' again. Ughh. Not fun at all. But they seem to have managed to get my sugars back up in a decent range again now... fingers crossed they stay that way. I don't want to end up in HDU again!!! :eek2:


On the good side, the nearby toilet has been cleared now so I can use it. Thank God! I am so damn stiff and sore from lying still on that cold hard 'tray' down in Xray all day for hours! The fiddling with the tube didn't hurt too much, but I have bruises on my tailbone and neck and hips just from lying in one position for so long. Thankfully I didn't need the toilet in that time either!


So yeah it's been a hell of a day yet again. Sorry for the long post - I know you're all prob. a bit sick of me but it does help to talk. Please think of me tomorrow - I just want it to all go smoothly for once. I am so totally exhausted from everything my eyes are hanging out of my head with tiredness. I have to say, this cookie really does feel like she is crumbling.... I dont know how much more I can take atm.

 

[MINI Cooper]

We could never be sick of you!!!!

What a terrible experience, I've heard a lot of
horror stories about getting the PEG in. I hope they
get that stubborn thing working for you!
Barium is yucky, too, ugh! I always chuck it up

I'm concerned for you that they aren't paying enough
attention on your sugar levels. What is up with that?
So not cool, I'd like to have a word with them if I
could! :ymad:

They need to take better care of our Cookie!!!
Well, more cyber hugs from here in my hospital
to yours!!!!! As I keep having to remind my own self,
"this, too, shall pass"

 

[CookieCat]

Yeah Pen, I've got to say I am wondering why everything has to be so damned complicated too! Just wish things would go smoothly for once! But the good news is that part 2 of the enteroclytitis went better this morning. I was still there for 4 hours, but the tube had moved to the right place so they could put the contrast in at last.

Of course there was a hiccup! There would have to be, being me! :yrolleyes: Instead of being able to push the contrast thru and wash out my small bowel, it kept on refluxing back up my throat even when they tilted the table as much as possible. After my third chuck, they decided to stop and give me a break and bring me back for one last Xray after I'd had some fluids to push the contrast down, along with time and sitting upright. Oh great - another little trip! Those guys must be so sick of me by now. But at least there is an end to it. So far, they found one small stricture, but its got to a point where its harder to see so I'll have to wait and see what the next Xray says.

They have kept more of an eye on my blood sugars today and they dipped a bit low so they put me on glucose while I was down in Xray. Yesterday's disaster was because of the staff here not handing over to the Xray guys. They don't usually do those things anyway. Yeah, I agree Mini, it's not really good enough - but these things happen. I wish I could sic you onto them too LOL!!! Especially last night when I felt so crap but was too tired to stick up for myself.

Oops gotta go again.... Xray time! Bye for now.

 

[CookieCat]

Thankfully today's been quieter and i've been able to rest a bit after the last few busy days of tests. Just as well cos I couldnt cope with more tests and prodding and pushing along with the pain and pukiness today. The doctor came this morning, took one look at me and upped my painrelief so I am managing OK now with it but I had to put the oxygen tubes up my nose because the oxycontin makes my breathing go down when i fall asleep and i don't get enough oxygen. Can't win.

So I am holding, thanks guys. Just waiting for it all to pass ... waiting, waiting, waiting. Also hoping my gastro doc comes by with some news about the results of that test. I am nervous because I really would like something to be wrong in a lot of ways so it can be fixed. Know the feeling?

 

[jed]

he he, dont hope for that to hard cookie can o' kittie cat.

instead, hope that at the moment you body is just been stupid, that it'll take a lil while to get over it, and you're left with the same silly crohns you went in there with, albeit coping better with it.

i'm tired, hope what i wrote makes sense.

and i'm hungry.

 

[MINI Cooper]

More hospital woes...

Ok, I have to complain a little, but it's
really nothing compared to poor Cookie...

It's 3 am. I can't sleep.

Just had a 'Code Rabid' down the hall.
Some guy is screaming his lungs out in pain.
Nurses all rushed over and are shouting and
running around like chickens with their heads
cut off...

Meanwhile, my heartburn and joint pain and headaches-
all of which are from the IV steroids, are keeping me
well awake. WTF, I want to go home and sleep
quietly and take some heartburn medicine. UGH.
:ybatty:

 

[CookieCat]

Hi Mini, You can rant wherever and are quite entitled to! Outside noises and not being able to sleep are the pits! I have answered you on the other thread tho, cos you said more there LOL!

Remember the old saying 'this too, shall pass'....

Thinking of you and sending you huge (hugs).

Jed, yeh - I guess you're right. I'm just so desperate for them to find a problem that has an 'easy' answer and can be fixed. Silly considering my history... nothing is ever straightforward or easy when it comes to me!

 

[CookieCat]

I've got some good news to share for once.....

My gastro doc came to see me today. Although the enterocylitis didn't show as much as she hoped, it didn't show up any major strictures in the area they got good pics. So it's all looking good for Remi or Humira. I may be able to 'join the club' yet! :ycool:

What it did show is that I have - to quote my doc - 'Spectacular reflux'. LOL... I told her it didn't feel all that spectacular. :yrolleyes: No doubt this is contributing hugely to all my probs, and is why I had so many probs with keeping night-time PEG feeds down.

The other good news is that the interstate doc is happy to give a second opinion so it looks like the tests there are going ahead, which will give a better pic than the tests I can have here. :thumleft: And..... they can organize for me to have TPN at home while I am staying at my sister's place. Yay!!!! So I may not even have to go into hospital there! Whoop! Whoop! Whoop! :yoshijumpjoy: Christmas is beginning to look a lot brighter.

And... my blood sugars have all been stable the past 24 hrs despite upping the rate of the TPN. So it looks like my body is coping with the more gradual increase this time too. :smile:

So's I am a happier little Cookie-cat tonight. Just thought I'd share the good news after all the moaning I've done lately....

 

[Agent X20]

I like to hear good news! Excellent!
Also interesting to hear that you're breaking new ground with your "spectactular reflux" (mine is very ordinary)... you might even get your picture in a medical journal (or at least a picture of your insides)!

 

[catfud]

Congratulations! It's about time you got some good news. You can tell from your recent posts too that you have perked up a lot which has been really good to see. Lets hope the good news just keeps on flowing for you.

 

[sheilag]

hi cookie,

im so glad you got some good news, you deserve it after all you have been through, i knew you were a tough cookie:wink: this is the start of you getting better cookie so hang on in there, i will keep you in my prayers while im at work over the weekend and i will check in to see how you are getting on but its true you do seem a lot perkier,

talk to you soon,

sheila:Flower: :Flower:

 

[jed]

What it did show is that I have - to quote my doc - 'Spectacular reflux'. LOL... I told her it didn't feel all that spectacular. :yrolleyes:

oh please tell us that the doc laughed at that!!!!!!

so glad to hear some good news with you cookie tray, really pleased for you

 

[CookieCat]

oh please tell us that the doc laughed at that!!!!!!

Lol.... yes, Jed my doc did laugh at my comment!

Well, after my good news I had a truly rotten day yesterday. The morning shift came on to find me in a diabetic coma - from my last check 2 hours before, my blood sugars had dropped so low that they couldn't be read on the little machine. They managed to get me awake with loads of iv glucose after about 45 minutes - I came to with the 'crash team' surrounding my bed and shock panels on my chest etc. etc! The thing that I think scared me most was the worried faces on even the drs.

Thankfully, they are getting more used to me and know a bit more about how to stabilize me so I avoided HDU again and was just 'specialed' (1:1) for the day. Felt so out of it though. I could barely string sentences together. Think I zapped a few brain cells there somehow. Came good last night and began to feel a bit more like myself, but still so tired and feeling a bit fragile so to speak.

I also feel better because some of that damn barium contrast has passed thru. Thank the lord! :worthy: I had a giant 'explosion' (plug) and then.... whoosh!!! So my tum has gone down and feeling a LOT happier now. Amazing how good a dump can feel, isn't it? *blushing*

Missed you guys yesterday. I tried to read but I was so zonked I couldn't manage it. Would have been an interesting post if I had tried!

Oh gotta go! Visitors!
Bye for now!

 

[MINI Cooper]

Oh, I Do hope they get you out of there soon!!!!!!!
And yes, a good dump can be GREAT :ycool:
Hugs!

 

[CookieCat]

Yeuck.... guess what now? Seems I've gone and got myself a cold.

Normally I'd cope OK, but I feel mega mega lousy with it. Every time the paracetamol wears off, my temp sores up and my bones feel like they are on fire with the pain and my head is ready to explode....

Trying to cope... its just a little cold after all. But I can feel my body is really struggling under all the strain - so damn weak and tired a trip to the toilet leaves me ready to pass out. Can I cry now?

Sorry for moaning again. I know there are others worse off than me rightnow and i am sorry for not writing to support everyone else too but just don't have the strength. I am thinking of you all though OK? Take care xxx

 

[MINI Cooper]

Yuck!
Even a 'little cold' can turn into a horrible thing when you're already
down and weak from something like you are! I know all to well!

Butyou keep focusing on yourself and getting better- we all know
you're thinking of us, but we also want out Cookie to recover, get out
of the hospital and be throwing cookies our way again real soon!

Lots of hugs!!!!

 

[jed]

Yeuck.... guess what now? Seems I've gone and got myself a cold.

i hope i didnt give you my cold, i'm pretty sure you cant pass those through PM's



come on cookies body, time to give her a break for a bit huh? play nice!

 

[CookieCat]

So much for 'just a cold'......

My bloods have shown I have a bacterial infection rampaging somewhere. Had chest xrays, urine screens, blood cultures etc. If nothing shows up on those, they will have to re-site the PICC line. Ughh..

Feeling pretty terrible all round to tell the truth. So damn sick of it all.. I am trying to tell myself if it is bacterial then antibiotics will get rid of it quick smart, but that ain't much consolation just now.

Guess one good thing is the fever and infection has bumped my sugars up - now running too high. But the say it's not as dangerous as too low.

So sorry I just keep on moaning, but thats the way things are right now. Going to go and try to have a nap and sleep some of this yuck feeling off if the pain will let me.

 

[MINI Cooper]

Oh no!!!! I hope they don't have to move the picc line! UGH!
:voodoo:

 

[jed]

damn girl, you just cant get a break at the moment can you?



best wishs and thought coming to you!

 

[soupdragon69]

Hey Cookie,

Sorry to hear things are still wreaking havoc with you!

Give the damn bugs a good lecture and tell them to bu***r off!

Fingers crossed the PICC doesnt have to be moved...

Thinking of you. ((hugs))

 

[CookieCat]

Now i' m crying again. I cant sleep i feel so damn crappy every bone in me hurts and head is dizzy. I cant ever in my life remebring feeling this sick ever. I just want to go home and (blushes) want my mom. and i thought i'd come here and check out what happening and found your mesages. Tahnk you more than i can say.

sorry i know my spellings terrbible but i cant see straight from painkillers but still wanted to say. i hope things better for you all too. we will get there all of us.
Hugs.....

 

[MINI Cooper]

Cookie you're making ME cry! I wish I could be there with you!!!!
My very heart goes out to you, I wish I could do something to help other
than just send virtual hugs!

 

[soupdragon69]

Aww Cookie,

This just isnt one bit fair! Sleep lots honey, let your body sort itself out. You will get there - just take it hour by hour at the minute.

((hugs))

 

[kello82]

aw cookie, girlieee

my heart is with Mini's- just going out to you. i cant believe all of this, waking up with the crash team?!? you are a very brave and strong person my dear

youll probably see my other thread, i was in the hospital this weekend and i thought of you! i wanted to get on here and be your hospital buddy, but couldnt figure out the darn internet till right before i left though, duh.

i hope with all the hopes in me that youre resting comfortably right now. *hugs*

 

[CookieCat]

Thanks so very much it really means lots to me. your caring helps so much Still too sick to write a lot. I've got a bad infcetion is in my bloodstream so piccs out. i got mad at them i didnt understand because it didnt hurt but its an entry point and i woke up with another line that hurts much more. but i had major low sugar again so back to peg feeds and chuckng again until infections gone and I'm specialed again its like being a monkey in a cage.

Then I had to answer stupid dumb questions from the intern he was like saying i had given myself insulin or the nurses hadgot the needles mixed with the blood thinners. I was so mad. what does he think this is ER or something?! as if i'd make myself feel like this! and to accuse the nusres too!

I will write more when I'm better. So tired and hurt so much all over like white bone pain. But had to say thanks. jan hope your scope is ok and kello get better too. Thanks for the hugs.

 

[MINI Cooper]

OMG I wish I could go over there and beat some of those people
up for you! Not that I'd do much damage in my wimpy state, but I'd try!!!!
I'm praying for your body to give you a break.
Sending virtual strength and hugs your way!

 

[CookieCat]

Decided this morning enough was enough and I was getting outta here. All I want to do is get HOME!

Sadly docs dont agree. Too sick. They still dont know what the bugs are in my blood but they aint good.

The worst is that I have swollen up like a blimp. My ankles andthighs are twice the size theywere and feel so damn tight when I stand the skin hurts stretchng. I know its not fat but god I feel it. And the beds next to me had to fill up during the night so I have a very sick old lady next to me contemplating whether she wants to live or die. I know its selfish but I'm worried she'll pop off anytime. And then my dad rings to tell me that my cousins husband has died and I should ring her. I told him I just cant handle it right now. Selfish selfish selfish but I am not coping here.

They are running my PEG feed 24/7 too - most I've ever been on is 12 hrs at low rate. No wonder I'm turning into a blimp!

And I am still reeling about the accusations. The staff here are too. There is just no way.... but to have that thrown at me yesterday by some damn upstart intern who decides that I'm getting insulin from the nurses or giving it to myself to cause hypos is just too much! Mini I wish you could come and sort them out too! I know my 'case' is rare but there are others it's just that 'mental health' history that brings up the issue. As if I am not going through enough hell as it is without creating more for myself!

Still being specialed too. Feels like they are spying on me although I know it's more that I am so unstable and they need to know if I go hypo again. But I just want my own space and privacy to cry it out of my system. Don't think I've cried this much in years.

Thanks to those who care. I know this must be boring and whiney to everyone, but it really helps to know that you care and support me. I'm not so alone and I dont think I'd be coping if it wasnt without you. xxx

 

[MINI Cooper]

I want you to go home too. There comes a point where
hospitals are just impossible to get any real rest and being surrounded
by sick and dying people isn't encouraging on the body to heal itself.
Believe me, I know!
It's all just not fair. I wish I could be more encouraging!
:::HUGS:::

 

[kello82]

omg i am coming in there and doing some beating up as well!

seriously cookie, what is your location? ive driven 4+ hours for hospitals before!

dont berate yourself for your feelings hon, you have the right to feel whatever you feel! no matter if they would normally seem selfish or anything else, you are going through a LOAD of crap and are allowed to react.
and go ahead and cry it all out if you want to! i offer to you a virtual shoulder so you can do so.

im really worried about you cookie i wish with all my might that you will start feeling better
*hugs*

 

[soupdragon69]

Ok lets see what we can do here..

Firstly the intern is a total TWAT. It shows his inexperience by his questioning and if he knew ANYTHING it is that when a patient is dealing with infection not only will they fluid retain like mad because their body is storing for the fight ahead and high temp that comes with it, but they will also knock off their blood sugars burning energy to get better and fight infection!!!

Am good at kicking butt Cookie let me at em!! Will put my "sisters" hat on ok? I also have a fantastic dark celtic look I reserve for TWAT medics that the boys at work say "go get em Jan".

Cookie they have cranked your feed up because your body needs the energy to burn ok? No other reason or you will lose further weight honey. Hang in there on that one because it will show once you get better and drop the fluid you are retaining.

They will be doing blood cultures and other tests to try and nail the culprit bug and that takes a few days to grow. Once they have that they will then tailor your antibiotics accordingly and until then will have you on either something they already know works for you or something that is broad spectrum to cover all the bases and help your body fight it all.

I know you want to go home right now but I reckon you havent got the strength of a flea from what you are saying honey and the best thing you can do is sleep lots and allow your body to focus on sorting itself out.

Think of the 3 musketeers and D'artangan is at the lead fighting the nasties! Mentally stab those bugs and start fighting back yourself emotionally ok? Have a good cry with the nurses they will totally understand and also let them deal with the woman next door - you have enough going on right now.

You are in my thoughts. Take it hour by hour. Sleep lots and post when you feel up to it. You know we are all here for you.

((hugs))

 

[jed]

awwww cookie!

this is sucky news keep wating to hear something positive about your health. so sorry that its been so hard for you at the moment. i have everything crossed for you!

he he, i bet i could get to you quicker than kello i'll race ya kello! $10 to the winner!

[[hugz]]

(",)
+
/ \

(LOOKY!!!!! I MADE A LITTLE MAN FOR YOU)

 

[Agent X20]

Cookie... you're not being boring and whiney at all. We're all thinking of you out here! If it helps, and if you've got the energy... keep venting!
Maybe we should have some donations to send Sister Jan over there!

 

[catfud]

Hey Cookie something tells me it's gonna take more than a magic monkey dance to cheer you up this time around. I really feel for you, just when you seem to get some good new things go pear shaped for you. You vent away we are all here for you. You are in my thoughts and I hope for good news soon. Rest as much as you can.

 

[kello82]

he he, i bet i could get to you quicker than kello i'll race ya kello! $10 to the winner!

WOHOO 10 dollas!?! lets go utahere:

*sings* where in the world is cookie cookie kitty....(lol anybody watch carmen sandiago, lmao!)

Jed youre on a giant island so ill bet ill win

wait unless cookie's in austrailia too.....dah!

 

[jed]

Jed youre on a giant island so ill bet ill win

doesnt matter where she is, we'll just break out the oars and row aussie land nearer to her.

aussie power!

zythunder:

 

[soupdragon69]

Jed THIS I wanna see! My imagination is running riot now LOL

 

[Agent X20]

careful, Jed... it's winter up here!

 

[jed]

Jed THIS I wanna see! My imagination is running riot now LOL

meh, its common place to move things around in aus, we do it out of boredom.

this is when we moved ayers rock into the ocean to give it a good cleaning back in 2002

 

[Agent X20]

Heh! heh!
love that one!

 

[kello82]

HAHA Jed you make me laugh

 

[jed]

here kitty cookie cookie,

where are ya girl!

come on in!

here cookie cookie cookie, i have din dins for you!

 

[CookieCat]

I'm here and been reading sometimes but not well at all and things just are so unbelevably bad i cant go into it here. But thankyou for your support and making me laugh. i'll try to post more in a few days when i'm better just cant right now.

 

[kello82]

good to hear from you girlie

more good thoughts and wishes coming your way *hugs*

 

[sheilag]

thinking of you cookie

aww cookie I am so sorry that you are feeling so unwell, i will be thinking of you and I will say a prayer for you, you are such an inspiration on this forum, with what you have been through, I know you will get through this one cookie, because you are a fighter, you go girl:mario2:

you have so much love and support on this forum cookie, we will all get you through this,

really hope you feel better soon,

your irish buddy,

sheila
anda-wave-t:

 

[AIjen]

OH my goodness! I am so sorry to hear you are going through such a rough time right now. I know I'm new and you probably don't even know who I am, but I am sending you TONS of hugs and support and prayers. I make cards and would send you one, but no one knows where you are. I so hope you will feel better again very soon and they find out what nasty bug has got you in its hold.

Keep fighting and even cry sometimes. I don't know what it is about crying, but it seems to make me feel better once in a while, but I have to admit - I've never been as sick as you are right now, so I don't know if it would work for that or not.

I can't believe how cruel this disease can be! I'm still so new to it and obviously have a lot to learn.

Bad bugs - leave cookie alone now! You've had your fun, party's over.

Hugs and prayers to Cookie.

 

[CookieCat]

Hey all, sorry I went quiet there for a while. Hope I didn't worry anyone but I was just so sick and had fevers and I wasnt really able to think clearly. My blood sugars were making me an emotional wreck and I got the wrong end of the stick a bit with what they were saying to me about insulin etc. too. :ybatty: So if I seemed a bit of a nutter that's why.... :redface:

The good news is I'm doing much better. The infection markers are right down again and my sugars and electrolytes are straightening out and I've dropped all the fluid weight. Unfortunately though I didn't put on any weight at all because I burnt it all up. And because of the risk of another infection they aren't going to attempt the TPN again. But they are trying me on a new regime of PEG feeding plus strong anti-nausea meds and hopefully that will work.

If the new regime works out in the next couple of days and my bloods are all OK, I might even go home!!!! :yoshijumpjoy: Keep your fingers crossed for me.

Thanks everyone for the support and jed especially for making me smile. You guys dont need to send flowers or cards - you do it with words. That's enough! :wub:

 

[Agent X20]

Good to have you back, Cookie. You've been missing a while so we can't help but worry about what you're going through.
Really hope you're coming out the other side of it now... got everything crossed!

 

[AIjen]

Glad to hear you are feeling better! I'll be crossing my fingers for you that you get to be home by the weekend!

 

[jed]

you keep gettin better cookie!.

 

[MINI Cooper]

Good news!!!!! Keep us posted!

 

[kello82]

COOKIE!!! im so happy to hear from you

of course we were worried to not hear from you! but also completely understanding that you couldnt post so dont feel bad at all. i think we all know what its like to not have the energy to even lift a finger.

keep getting better sweetie!!

 

[CookieCat]

Aww... gee... thanks for the welcome back. *Cookie blushes*:redface:

You guys really are so great. :wub:

I am struggling a bit with the new PEG regime - it is double strength so it's a bit harsh on my poor little tummy and I really pushed my oral intake too yesterday so I ended up with bad tummy aches and cramps and nausea. :yrolleyes: But my blood sugars have been more stable on it so that's a positive. I'm just trying so hard to be 'good' so that I can escape LOL...

God this admission has been a nightmare! So much for 1 week to start the TPN..... It will be sooooo great to get home and away from the 'sick' environment. Thanks so much for your support thru this - it's meant a lot.

 

[soupdragon69]

Hey Cookie,

You will get there girl! Just take it one step at a time...

Have answered your PM too.

((hugs))

 

[sheilag]

so glad to hear you are doing better cookie sending you lots of hugs:banana: talk to you soon,


sheila:Flower:

 

[CookieCat]

Guess what???

The plan is home on Monday if all goes well... and so far, so good! :thumleft:

I can't even begin to say how much better I feel knowing there's finally an end in sight! I can't wait to put this whole nightmare behind me and move on. utahere:

Have my flights booked for my vacation on Friday too - can't wait to see my sis and her kids. It will also be nice just to get home and sort things for my trip and also post off Xmas parcels. And to sleep in my OWN bed for a few nights!

Just a bit worried cos I'll be at home on my own during the day for a few days and have lost a lot of condition. Can't walk very far at all atm. I have a personal alarm system but still it's scary. Anyone else get scared when they are due to leave hospital? :confused2:

 

[Agent X20]

I know the feeling when you're not good on your legs!
The whole world seems a lot bigger... and wobblier... and no-one seems to get out of your way!

... but home on Monday sounds good!

 

[MINI Cooper]

Yay! Home on Monday!

Yes, coming home from the hospital can be intimidating after that long.
I had a little wake up call myself yesterday-

After the bad day i was having, I needed to see my iguana; Turkey.
When I went to put him back on his cat perch, I saw his pillow had
fallen on the ground. Stupid me bent down, 10 pound iguana on shoulder,
to pick it up. It was then that I realized I physically COULDN'T stand
back up, or even make my legs move at all. Just NO muscle there.

Very depressing being under 30yo with a grandma's body.
But you have to come to grips with the fact that your body is not
able to do the things it used to before the hospital. So just take it slow,
easy, but ENJOY sleeping in your own bed! (it's safer in the bed!)

ALSO, take your showers sitting on a chair or stool. Showers can be
VERY dangerous for someone with a weak body. It was a HUGE
struggle for me when I first got home after surgery. Especially
if you're going to be alone for a few days.

Glad you're getting to go home! :biggrin:

 

[kello82]

yay cookie im glad to hear you get to go home. and im glad that youre feeling so much better. you have really been through some craziness.

keep us posted

 

[soupdragon69]

Hope you made it home ok - just make sure you rest lots too!!

Thinking of you.