Back in hospital - again!!

[Welsh-bird]

Well I've just been readmitted for the 5th time this year, and to say I'm P'd off would be an understatement!!
After a few days of pain, sweats, vomitting but no D, I managed to get an emergency apt with my Gastro this morning. Just about made it through the door of outpatients, and bumped into my IBD nurse at reception, she took one look at me, told me not to bother going to see the doc, and rang the ward to check if a bed was available. So here I am, back on Hydrocortisone IV and fluids, and waiting for a CT scan this afternoon. Nurse has been back and advised that my consultant wants the surgical team to visit this avo. If the Ct scan comes back with a blockage he thinks this would be the ideal time to do the op he's been trying to get me to have since May, and have my whole colon removed.
The fear factor now is higher than ever. I dread having the scan , just in case it tells me what I don't want to hear. Have been advised that surgery, if needed could go ahead this evening as I haven't eaten at all since last night. Tomorrow I could wake with an Ileostomy. I understand that many peolpe on here are happy with theirs and the choice made to have this, but I DON'T want it- I really don't know how I'm going to cope.
Just one thing before I have to go, if you're reading this Joan (Astra101), thank you so much for the warning and for the advice re blockages. I would never have considered it, and am now being told that I should have got my bum in here days ago and not left it this long. Had it not been for what you had said, then I would probably just tried to carry on with the Tramadol and codeine phosphate for as long as possible. So a BIG thank you and hug coming your way.
Wishing you all a good weekend, and hoping that mine will soon be better (once scan done).
And xx

 

[amirah]

I hope everything goes ok and you feel better soon , i know what its like as my daughter who is 18months old has been in hospital7 weeks now.
please keep us updated.

 

[Astra]

Aw Andrea I'm sorry it's come to this!
Your head must be cabbaged! Before they go ahead with surgery, have they mentioned the Infliximab option first? Maybe they think it's time for surgery, dunno, but try to persuade them first, to consider other routes?
Hope you're ok.
I'm glad I'm useful for something anyway!
Take care and we'll see you soon, good luck hun
Joan xxx

 

[CDDad]

Good luck on your scan. I hope you can avoid surgery. If not, we'll be here to help you cope.

 

[Shannon]

Sorry about all this! Hope you're in good hands and on the way to a quick recovery (preferably the more conservative route!) I don't want a bag either. Maybe you were admitted just in time? Hope so!

 

[Jer's Girl]

I hope you get the answers you want but if not please know that it is possible to live a happy, full life with a bag. I don't think it's anyones first choice, and it will take time to adjust, but it can save your life and honestly change it for the better.

I hope they figure out something less intrusive than surgery for you and I hope that you are on your feet again soon.

 

[DustyKat]

Good luck with your scan Welshy, I will be thinking about you.......................

:goodluck: and :getwell:

Take care hun, :hug:
Dusty

 

[Welsh-bird]

Hi guys, thanks so much for the replies, so much appreciated right now!
Have managed to make it through the night with my colon still in my abdo (HUGE smile!!). Gastro has decided that we can give the hydrocortisone IV the weekend to make an impact, failing this, or my condition deteriorating, then it's surgery time. At least we're giving the meds a chance to work, so if surgery does follow, I know that I've given it my best shot.
Have never felt soo tired, mentioned this to my IBD nurse this morning, to be told that I wasn't there for rest, but for treatment, the rest comes when I go home! Sort of understand where she's coming from, but after 3 sleepless nights at home, and being on a ward that is anything but quiet, an anaesthetic on Monday may be my only way of getting some shut eye!! Looking around right now, and all the old people who were awake all bloody night are now fast asleep, and I have the urge to either go jump on their beds and wake them up, or scream fire and watch them make a run for it!! Why are they allowed to sleep all day and party all night?? Ok, rant over.
Just one thing, for the past few hours I've noticed a twitch in my one eye, not hurting just bloody annoying...any ideas as to what this is, or what's causing it?
Thanks again guys,
And xx
ps..How did I ever manage without my I phone- its been a lifesaver for the past 24 hours!

 

[rottengut91]

I no what you mean by not getting rest, when I was in the hospital a couple weeks ago, the lady next to me had he lights and tv on almost all night, then at 5:30, her daughter showed up. Yak, yak, yak. She had so many visitors, I just couldn't catch a break. I was so restless, all I did was walk around the hospital. That place was driving me crazy. But, it was nice to be on iv pain meds. I miss those.

 

[Welsh-bird]

Julie, I think you're patient is now in the bed next to me!

 

[DustyKat]

Good to hear from you again!!! Yay for your bowels and doc..........I hope the IV does the trick but like ya said if not you gave it your best shot. At least there will be no what if's! Still keeping my fingers and toes crossed though.

Ah why the hell not.............go jump on the beds!

Not sure about the eye but when I was researching Roo's twitches I came across something called BFS, Benign Fasciculation Syndrome. It has some autoimmune link and one of the places it can affect is your eyelid. It isn't uncommon in the general population. In Roo's case the neuro doc said it was a tic after many tests were done but I still think it may have something to do with BFS.......(((shrug))).

Take care mate, :hug:
Dusty

 

[Astra]

Hiya Andrea!

hope you're ok? good news that you've still got you're colon hey?
that hydrocortisone IV is the business!
Hospital sucks, I was in a ward with respiratory patients! The noise from those blowy sucky things is unbelievable! I slept with my earphones on!
And the eye twitching thang? It's cos you're tired hun! Mine does it too when I've had no sleep!
Take care, hope you have a restful weekend
Joan xxxxxxxxxx

 

[Welsh-bird]

Thanks Dusty.
Everything's still crossed here too, just a waiting game now. As for jumping on the beds, it's becoming more tempting as one of them has now started snoring!! The twitch seems to be easing too now, oh the joy's of an auto immune disease!!
And x

 

[Welsh-bird]

Hi Joan,
Thanks for the advice re the twitch, if thats the case then both will soon be going off at 100mph! For now though it seems to be slowing down. Our Gastro ward is shared with care of the elderly...enough said!
Have had 6 hydro jabs now, and it's taken no time at all to start looking like a chipmunk again, but if it does the trick, bring it on. Will just need a new wardrobe to fit the expanding waist line! My mission when I leave here is to design a drug simular to hydro and pred that doesn't make you leave hospital looking like you've swallowed a barrell!

Hope you have a good weekend, and plenty of rest!! The latter said through gritted teeth!! lol
And xxx

 

[Shannon]

Wow guys, everyone is raving about how awful the patients next to them are - but every time I step foot in the hospital, they go out of their way to put me in an isolation room all to myself, with double doors separated by a washing station for the docs - simply because I'm 'autoimmune' and the suppressant drugs I'm on. Wish you guys got the same treatment!

 

[Welsh-bird]

Hi Shannon, what luxury hospital are you being admitted to? (would love to be there!!). To say that I'm now beyond exhausted would be an understatement!! Lady on the ward died early hours of Sunday morning, so naturally lights on, noise etc. Am so hoping that after 5 days of Hydrocortisone IV, I will be allowed home tomorrow, and return as an out patient on Friday for my WBC Scan. This sleep deprivation is worse than the damn disease!!
And x

 

[Shannon]

Oh man, that sounds terrible. I've only been admitted to Children's - and it's a 'silent' hospital, which means their policy is no overhead speaker system, big thick oak doors, and less harsh lighting. It's a real luxury compared to what you're experiencing, and I wish you could be spared! I've only been admitted twice and both times were ideal as possible considering the circumstance. Kind of makes me a little afraid to grow up and out of pediatrics...!

 

[Astra]

Hiya Andrea

hope you're doing a bit better?
When I was in hospital they gave me codeine phosphate, not only does it blitz diarrhea, but it knocks you out at night! Didn't hear a thing! It's quite trippy tho!
And one night I felt a hand on my head, I woke up, it was a woman vicar, well I just freaked, cos I thought I was dead and she was Jesus! (I swear she had a beard!) and I screamed in my hazy crazy daze!
She legged it, scared stiff!
Take care, hope you're home soon, good luck with the scan too
xxxx

 

[Misty-Eyed]

Oh my goodness, how scary. I hope you're doing ok.

I've not stayed in a hospital for a long time, luckily. But at least they can get you sorted in one way or another if you are there.

 

[Welsh-bird]

LMFAO @ Joan (my only laugh of the day!), I'm sure I have some 30mg Codeine phosphate on me- maybe I should give it a go!
Gastro did write up Temaze 20mg this morning when I started to cry, I thought I was loosing my mind and just wanted to get outta here asap! What is it about hospitals that makes the pain tolerable just to go home?
I'm feeling ok, just have to convince them now that I would be better off at home, and that I will o/p the scan on Friday. Think the Hydro's doing it's job and all going well it should be swapped for oral pred tomorrow. Quick flexi sig in the morning and then outta here I hope! Also had enough of the Ensure plus and mashed potato diet...
Hope you're doing well...not too long for you to be pred free now eh? Lucky sod!!
Take care hun and big hug coming your way xx

 

[Welsh-bird]

Hi Misty. Thank you and yes I'm doing loads better and colon's still in my abdo! They tell me I'm in the best place, but that's debatable when I feel ok and am sleep deprived. ..but it could have been sooo much worse.
Have just been catching up on some threads - hope you're colonoscopy went well today and that you too are ok.
Andrea

 

[Misty-Eyed]

Yeah and the worst part about being sleep deprived is that it makes everything worse emotionally. I get upset so easily when I'm tired and it's not good for the mental state! well, for me anyway.

But good that you still have your colon. I'm so scared that I'll end up losing mine one day.

Thanks for your wishes, it didn't go great but I put the update in my thread. But what doesn't kill us makes us stronger, right?

 

[Inna]

I hope you won't need ileostomy and hope you get out of that hospital soon.

 

[Astra]

Hey Andrea!

I'm doing great, off the Pred now, so fingers crossed!
Not heard from you for a week? hope everything's ok? hope you're home?
good luck with the Pred, not everyone's fav med, but it saved my life, and I quite like it, but I'm a weirdo!
lotsa luv n stuff
xxxx