my saga continues

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ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/10/2009 8:22 PM (GMT -7)   
OK, it's Monday here, and I've phoned the snotty big city hospital.

You'll remember that they promised and assured my Very Annoyed Doctor that I would have a bed after this procedure.

Guess what? I don't. My guess is that they didn't even bother to open my file when my doctor rang, and just told her whatever she wanted to hear to placate her. eyes

I have finally got the surgical administrator to accept that yes, this is a problem, so she is off to do a bit of phoning around to get the definitive Word on what will be happening. *Apparently* she's going to call back... though when, I don't know.

redface It really shouldn't be this hard... turn turn All I want them to do is definitively say "yes, you'll be staying," or "no, you won't", so I can make plans. Their "we'll decide on the day" is ridiculous, especially as I (and now the surgical administrator) am fully aware that it is impossible to find a hospital bed (or a hotel room) at short notice on a weekend.

Ivy smhair
Co-Moderator Crohn's Forum.

New meds thread


ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 5/10/2009 8:36 PM (GMT -7)   
What makes people reject compassion? Ridiculous.

My heart goes to you Ivy. I just don't know why they do this.
I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
I'm DONE (D-O-N-E, DONE!!!) with immuno-suppressants.  Tremble, yee Pharmacuetical companies, for you will not withstand the aggressive onslaught of our healing!
new prescription from natural doc,
3.5 grams Chlorella daily.
4.5 mg Low Dose Naltrexone nightly. 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/10/2009 8:41 PM (GMT -7)   
Thanks, ExJohnson. I'll admit that even I am amazed that they are now being *dishonest* simply to protect themselves from criticism. (Why? I should be more cynical by now. redface )

Thanks for listening. I really just hopped online to smhair smhair VENT smhair smhair but had really better get off the computer now, just in case the administrator phones...

Thanks,

I. smhair smhair
Co-Moderator Crohn's Forum.

New meds thread


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/10/2009 8:54 PM (GMT -7)   
Amazing. Hope it all works out!
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


orngie
Regular Member


Date Joined Feb 2009
Total Posts : 161
   Posted 5/10/2009 9:30 PM (GMT -7)   
Having the surgical administrator on your side should help, at the very least. I hope they can get this all sorted out for you.

Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 5/11/2009 3:05 AM (GMT -7)   
(((Ivy))) I hope everything works out for you. What type of surgical procedure are you having? The best of luck to you! Blessings, Julie
Diagnosed with Crohn's March 2006, Fibromyalgia Nov. 2008, Anxiety Disorder since childhood
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 10 mg, Miralax,  Prevacid 30mg, Vit B12, Vitamin D, Slow-FE (Iron), Hydrocortisone enemas
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg three times a day, 1mg at bedtime (for anxiety attacks)
 
 
 
 
 


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 5/11/2009 3:15 AM (GMT -7)   
idea I'm not usually one for getting back at folks, it is an unhealthy preoccupation that usually does as much emotional harm to the aggrieved as to the aggressor. But when they are doing the wrong thing anyway, you have nothing to lose, and they really do need teaching somehow.
If it doesn't get you even more wound up Ivy, why not comfort yourself with thinking up ideas of how to gain revenge upon them...something gruesome in the hand on the way out when you shake the hand of the administrator to say thank you for all your efforts, maybe...?smilewinkgrin
nono Operant conditioning is a wonderful thing, you might be amazed at how their attitude has changed next time. eyes Pecking order people - they are either at your throat, or at your feet, they don't emotionally comprehend equality !

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/11/2009 5:25 AM (GMT -7)   
Ivy, that is so terrible....I just feel like that shouldn't even be legal, and I don't understand what on earth they are thinking.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


yellowfin43
Regular Member


Date Joined Aug 2008
Total Posts : 305
   Posted 5/11/2009 7:01 AM (GMT -7)   
Ivy, couldn't you book a hotel room in advance of your appointment in case they discharge you again? And if they dont discharge you then call the hotel and cancel your room.
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 8 months ago. Now on Remicade, B-12 injections and iron. Feeling much better!
God Bless. Tony


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/11/2009 4:22 PM (GMT -7)   
Yellowfin, no I can't. I'm on an income that's waaaaaay below the poverty line, and if I book a room and don't turn up, I'll lose all that money... which is equivalent to more than a week's income for me.

Sno, I agree with you about the pecking order mentality and LMills, I agree, I don't think this is legal either.
Co-Moderator Crohn's Forum.

New meds thread


78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 5/11/2009 10:25 PM (GMT -7)   
Do you have a local or area News Channel that would be interested in your plight? A human interest type story of the beleaguered, ill every-day person up against the Big Bad Hospital kind of angle?
Rattle the bars on their cage.
Can you just *stay* and not leave? Would they actually try to push you out the door? I think this is heineous.
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
Crohn's and UC are pretty darn crappy, but if you can't laugh at yourself, you'll cry......I'd much rather laugh.
2001 Dx'd with UC.  No remission.  No improvement with Remicade.  5/2008 surgery, removal of 6" of left side colon.  Dx changed to Crohn's.  Remission for 8-9wks after surgery, symptoms returned after resuming 6MP.  Changed maintenance med to Methotrexate (MTX) and had great results with IM injections.  Nausea and symptoms returning with oral MTX.  Switched back to IM injections and am slowly improving.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 5/12/2009 8:20 AM (GMT -7)   
Oh Ivy, I'm so sorry you are getting treated so poorly. My momma bear instincts are coming out! I so wish I could come fight the hospital for you!!!! I do think that if on the day of the procedure I didn't have a bed, I would be feeling quite ill from the anesthesia and would be very light headed and nauseous. I would not be fit to be released no matter what my vital signs were!
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 5/12/2009 8:29 AM (GMT -7)   

Hi Ivy,

really hope you get sorted very soon you shouln't have to be going through this good luck with the procedure let us know how it goes when you feel up to it. Bev x


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 5/12/2009 8:46 AM (GMT -7)   
Ivy,
I'd be willing to write to Mr. Rudd in regards to your complaint. Heck I am ready to cut and paste your last posts Now. On his website, first in the new portion and in the Health portion, his administration claims to "Improve care" and "Improve Hospitals". I do not think that what you are going through is right, and I really want to do something about it. You have been kind, caring and supportive to us all here...you deserve so much better.

I also agree with contacting a local news org...you know "Channel XYor Z on Your Side" type thing. Most agencies don't like that kinda spotlight. Usually the person they helped, the problem vanish and they are treated regally(which should have happened in the first place).
Here is the place to contact the Australian PM, The Hon Kevin Rudd MP...I don't just want sit and wring my hands...but I don't want to offend you either...
www.pm.gov.au/contact/index.cfm
"The earth laughs in flowers"


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/12/2009 8:53 AM (GMT -7)   
78SilvAnniv said...
Do you have a local or area News Channel that would be interested in your plight? A human interest type story of the beleaguered, ill every-day person up against the Big Bad Hospital kind of angle?
Rattle the bars on their cage.
Can you just *stay* and not leave? Would they actually try to push you out the door? I think this is heineous.


My grandfather refused to leave the hospital once because a car had hit him and broken part of his pelvis, but because they thought he was being too unruly they kicked him out, called security, and refused entry.

I don't think hospitals should be able to do this but they do.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 5/12/2009 6:33 PM (GMT -7)   

Ivy I can’t believe you’re being treated like this – it really is unacceptable and frustrating as all hell! I know you are probably too tired to contact the news right now; but perhaps writing to them instead of calling could be an option, or at least writing to your local member/Mr Rudd – because this is unacceptable! Working for the government I know that something has to be put in writing of some sort (even an simple email) and as soon as it is in writing it WILL be taken seriously. It os gov’t protocol and has to be acknowledged.

 

Might be worth a go, especially if others here are willing to do the writing on your behalf!

 

P


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/12/2009 6:36 PM (GMT -7)   
I'm writing now; not to Mr Rudd though. Am going to hospital CEOs, local MP and maybe the state health minister.

Not whingeing, though - have an idea to fix the problem.
Co-Moderator Crohn's Forum.

New meds thread


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 5/12/2009 9:58 PM (GMT -7)   

That’s the way to get attention I think – and you’re going to get a lot more sympathy from the officials when you are proposing a solution and not just telling them what’s wrong with the system. They really need to be aware of this though. You’ve requested numerous times for assistance and a bed and this is just not right. As we’ve all said, most other hospitals would demand you either stayed over or had someone there to look after you.

 

I know in my outpatient surgery they seemed quite anxious to get me in and out as soon as possible, I can understand they have huge lists for surgeries in that department, at least I had someone to take care of me afterwards, I really can’t say a bad thing about the treatment I received at the royal Brisbane. It makes me mad that you’re not being treated with sensitivity and respect. I mean I know these dr’s don’t understand 1st hand what this illness is like, but they should be sensitive to your needs!!

 

Let us know how you go with your letters and if you get a decent response! I certainly hope you do! Heh heh – maybe they’ll pay for a fancy hotel room for you and a chauffeur to and from the hospital as a ‘hush’ payment!! Wouldn’t that be nice!

 

What date is your surgery scheduled for?

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