advice? what would you do?

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ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 5/4/2009 6:38 PM (GMT -7)   
For those of you who haven't been following my seton saga, I've had a seton for years but the doctors like to remove each seton annually and replace it with a new one. I had my annual change-over in March... and the new seton promptly disappeared two weeks later, on Good Friday. I don't know if it has fallen out or just dislodged and crept further up inside: either way, it's gone.

This is a bigger deal than you'd think, as I live in a forgotten corner of my state and need to travel 300km (by train) to get to the hospital to have the replacement surgery and then have to get myself back home again, alone and unsupported. The trains run very infrequently, so I have to get to the station on time, or risk being stranded for anywhere between 6 and 16 hours until the next train leaves.

Whenever I have the surgery done, they make me stay overnight afterwards because I live so far away... but not this time. The admissions doctor has just informed me that as "city people go home the same day", I can too. I pointed out that this is a loooong train trip and that I live alone and will have nobody to help me get to the train station or escort me home afterwards, and that this is a BIG thing to ask of somebody who has just had a general anaesthetic, but he didn't care. He won't book a bed for me.

I am *sure* that he is wrong in expecting this of me. Usually hospitals won't even let day patients leave after an anaesthetic unless they have somebody escorting them, so how can he possibly let me loose, alone, to negotiate my way round the city, to buy a train ticket, book my luggage and get myself home, all within a couple of hours after surgery and general anaesthetic?

What would you do? This is a snotty big-city hospital; they are very rude to patients who argue with doctors' decisions, even if the doctors are wrong...

I really am worried about this. The thought of having to wander around a HUGE train station and get myself home so soon after anaesthetic is very, very daunting. I already have trouble walking around the station; it's so big; so the thought of having to do it while drugged is horrifying. I'm scared I'll not be able to walk far enough, and that I'll lose my purse or get on the wrong train or fall asleep and miss the train entirely...

Ivy. sad
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belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 5/4/2009 7:33 PM (GMT -7)   
Hi Ivy:

You have to make this someone else's responsibility -- as in -- "I want you to be aware of my concerns about .... " I want to make sure I know who is taking responsibility for this decison. Etc. My experience has been that as soon as you address these issues in terms of your concerns in relation to their responsibilities, usually you get what I need because no one wants to be liable in case something does happen.

If you have concerns about your state of functioning after general anesthetic make it well known and in specific terms. And if nothing else works, just refuse to leave. Tell them you are not feeling capable of managing, that you feel lightheaded, dizzy, nauseated whatever you feel and again, if they press you turn it back on them. "So you are taking responsibility should I faint in the station?" etc.

Bottom line, Ivy. If you don't feel safe, make them responsible for the consequences of their decisions.

All the best. I hope it works out for you.
Belleenstein:

30+ years living with Crohn's.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/4/2009 7:41 PM (GMT -7)   
Yes, that's what I'm thinking too, Bell. I was posting here to check my perceptions, as I have enough faith in the people here to think that if you all thought I was nutty in worrying, you'd tell me so.

I am feeling very fragile at the moment and am really not wanting to have a confrontation with the hospital hierarchy right now. They really can be harsh to patients who buck the system.

I agree with you; it's a good strategy to make them aware that they are responsible if anything goes wrong after my discharge. What do you think I should do: phone them, or put my concerns in writing?
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MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/4/2009 7:47 PM (GMT -7)   
Ivy,
If I could go with you I would. I would do both call and write. Is there a patient advocate there at the hospital?
Hugs,
Navy
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belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 5/4/2009 7:51 PM (GMT -7)   
I would phone them and follow up with a letter. And i would couch my concerns in the form of a query. "I am calling to make sure I didn't mis-understand my physician's instructions....

"I want to make sure you understand my situation because I have some concerns about ...

" this appears to be a different plan than during my previous visits, perhaps you are unaware that ... "

"I want to make sure you are aware of my situation because if something should happen to me, I do not want anyone to say that if they had known, I would have been kept overnight."

Those kinds of approaches may work to subtly reinforce the message.

In the written letter, I would outline what you fear might happen to you if you are released while still under the influence of the anesthetic.

Hope this helps
Belleenstein:

30+ years living with Crohn's.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/4/2009 8:09 PM (GMT -7)   
It *does* help. Thanks very much, Belleenstein and Navy. I really don't want to make that phone call, but it sounds like I'll have to. It helps to have a basic script, so thanks.
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ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/4/2009 8:16 PM (GMT -7)   
ps. It would help if I knew *who* to call. The man introduced himself by first name only, and didn't tell me what his position was, or whether he works for the surgical department, or admissions, or what. Grrrrr. Not Good Enough, is it?
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Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 5/5/2009 5:30 AM (GMT -7)   
You've gotten some excellent advice. Here in the States, we have patient advocates at all hospitals, I might start there. I would make sure that I put things in writing so that should anything happen you know your bases are covered. My only other suggestion is to check with your insurance company if all other avenues fail. If something were to happen to you and you did end up having to go back to the hospital, say from the other end of the train ride, would they not be responsible for transporting you by ambulance? and then paying for your care while you were in the hospital recovering from what would most certainly be a more serious problem than previously? I do hope it all goes well, it really does stink that we have to fight sometimes to make people that we need the bare minimum of care!
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.....


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 5/5/2009 6:02 AM (GMT -7)   
Wow Ivy, this is horrible. I can't even imagine getting myself home after anesthesia. My hospital won't let me get home myself. Or even take a taxicab. They insist I have someone take me home. This is horrible.

You've gotten some great advice so far. Trying to think of other options. Like staying in a hotel -- unfortunately on your own dime. Also, maybe the Patient Advocate or Social Worker at your hospital knows of a charity that will put you up for the night? In the States, often charities have guest homes close to big hospitals and they take in relatives of people who are sick with cancer, heart problems, organ transplants, etc. These relatives often need a place to stay for several days or even weeks but don't have money. These charites have guest houses where they can stay -- often for free. Like Ronald McDonald House. The hospital's Patient Advocate or Social Worker refers people to these charities. I think it is definitely worth asking the Patient Advocate or Social Worker if they know of any charites that could help you out. You might be able to come the day before and stay for a day or two afterwards.

Praying that a solution presents itself to you ASAP!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


CatMan
Regular Member


Date Joined Jun 2006
Total Posts : 289
   Posted 5/5/2009 7:43 AM (GMT -7)   
Another thought in addition to those already mentioned. I'd speak with a Department Administrator or the hospital's administrator regarding this. Policies should be guidelines and there needs to be room for discretion. The doctor's position is cruel!
Current Medications:

Pentssa, 1000 mg od
Vitamin D
Red Yeast Rice
Calcium/Magnesium Supplement
Nature's Way Primadophilus Bifidus Probiotic
Remicade infusion; every 8 weeks
Ambien, PRN
Seasilver Whole Food Liquid Nutrition


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/5/2009 8:17 AM (GMT -7)   
I can't say much more than everyone else already has....what odd instructions from the physician though! That's setting a lot of problems up and a potential law suit if anything happened to you.
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."


Bluize
Veteran Member


Date Joined Mar 2005
Total Posts : 635
   Posted 5/5/2009 8:24 AM (GMT -7)   

Ivy, you are 100000% right.  There is no way someone (not a doctor even) can dictate your care plan.

I would call the doctor first and tell him/her that first.  Second, after general anesthesia you have to have someone escort you home.  Here in the states (not sure where you are) a hospital cannot kick you out.  They have to keep you until you are stable.  If you are not able to leave, they can't kick you out.  I would tell your hospital just that..maybe the laws are the same?

You have to speak up.  I know you don't want confrontation.  It's hard.

I would be happy to make the call on your behalf.  I don't know if I can even do that for you but the offer is there.

I wish you the best of luck.

 

 

 

 

 

 


Susan
 
28 years with Crohns in the term ileum.  Feb 07 Resection.  No meds currently..but there will be some I'm sure. Taking acidophilus.


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 5/5/2009 8:24 AM (GMT -7)   
All good advice. I also recommend that when you have someone sign off when they make you leave that day (if they still do after the other letters and calls). I would bring a paper with me that says something to the effect of "I, (your name), have made it clear to this facility that I am not capapble of caring for myself immediately after this procedure. Further, this facility accepts liability for any injuries or illness to myself or others as a result of my discharge from this procedure without adequate recovery time from the anesthetic."

Not truly legal language, but I have used something like this to scare them into realizing I am considering them at fault for future issues. It has worked in non-medical situations for me.

Wish I could be there for you! Please take care
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 5/5/2009 8:32 AM (GMT -7)   
Ivy...I was just thinking...could a local elected official help you?...I've had luck in the past and so has people I know...if all seems hopeless and the bureaucracy seems unrelenting...let your elected official help you see though all that red tape...People become "very" polite...It helps even when something seems privately controlled...because government usually regulates the industry somewhere along the line.

Ivy, I'm almost positive that if you called and/or wrote a letter(sent an e-mail) and said word for word what you did...you would get a positive response in no time by an aid or, depending if it is an election year, the person her/him self...

Ivy...you shouldn't have to go through this. You've got people rooting for you...If I could help...in any way...
"The earth laughs in flowers"


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 5/5/2009 2:38 PM (GMT -7)   
eyes I don't know that I would even bother with the angst of making the phone call to the hospital, Ivy. Becoming undone has hit the nail on the head. I would phone your local MP or whatever you have there - councillors is it ? - and see if they can't make the phone calls needed. Much less stressful for you. But by all means, have all your concerns down in writing, cc'ed to the legal department of the hospital if you ever have to send it.
The first rule of officialdom is, if there is nothing in writing it does not legally exist, it can be ignored. Beyond that rule, without supporting paperwork, it is down to how well individuals can be bothered doing their jobs.
You obviously have landed with a man who thinks that compassion is wasted on patients. I feel sorry for him in his old age when he realises the quality of the friends he has managed to gather around him... shakehead
I am tempted to say he deserves a hefty boot up the fundament just so that he can be a recipient of such awful attitudes from medical practitioners. yeah (And if I was there you'd have a pair of size 11s on offer ! smilewinkgrin)
Sad to say, I remember reading a review of hospital medical treatment throughout Australia a few years back, and the overwhelming impression was that there was very little accountability and even less effort to avoid repeating mistakes. The culture was described pretty much as doctors getting away with murder because they looked out for each other. The report really blew my mind, the situation was scandalous. I would hope it has changed somewhat, but it seems like some bad attitudes still remain.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/5/2009 4:30 PM (GMT -7)   
Hey, Sno, was that article in relation to the molestation of women by a certain doctor in NSW, and the damage done by a fake surgeon in Queensland who went unchallenged for years because the doctors closed ranks?

Thanks so much for your support, advice and sympathy, folks. This incident is the latest in a long series of arrogant-big-city-hospital incidents that I haven't bothered to share with you here, but suffice it to say that I'm getting tired of them.

I happened to have an appointment with a very special doctor who actually LISTENS yesterday, so I told her about it, and said that I was getting tired of having the hospital being mean and rude and dismissive to patients who have legitimate concerns. She promptly bristled, hopped on the phone and pulled rank, and lo! suddenly I have a bed. Amazing.

The doctor is gratifyingly outraged and is set to write them a nasty letter, too, saying that they won't be getting ANY patients from this area if they keep pulling these stunts. I think that might do the trick, don't you?

Apparently they're sending me a new consent form to sign, so I might attach a letter of my own at that point, and then follow it with another phone call.

I am gratified to know that they *say* I have a bed, but I won't believe it until I'm actually sleeping in it. Last month, when they inserted the seton, I was supposed to have a bed afterwards... and they actually operated and then came into the recovery room while I was waking up and said "um, we're sorry, we made a mistake and we don't actually have a bed for you at all. Do you know anybody in the city who can take you to their house and look after you there?" Answer, NO, so they had to compromise and find a temporary resting place for me... but that was on a weekday when the hospital was fully functional, and this surgery & recovery will be on a Friday and weekend, when fewer beds will be available.

I wish I could get a bit better so I could get seriously activist on these issues. The whole system is screwed up and needs fixing, and all we poor sick patients can do is fight our own causes... and most of the time we don't even have the energy to do that well. We need someone to fight for us, so I'm grateful that this doctor went in to bat for me this time, because I really don't have the energy to fight well right now.

Thanks again... very, very much.

Ivy.
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FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 5/5/2009 4:52 PM (GMT -7)   

Way to go Ivy!!!   turn   turn   turn      May that good doctor really kick the butts of those nasty doctors!!!   yeah   yeah   yeah

 

I quickly googled Ronald McDonald House in Australia and found this website that gives links to actually locations (on the right-hand side of the page) http://www.rmhc.org.au/house/default.asp

I suggest you call one of them and ask if they have any suggestions for where you can stay if you need to in the future.  If they can't take you in, maybe they will know of a place that will.

I'm praying the good doctor makes a bed happen for you!!


Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/5/2009 5:00 PM (GMT -7)   
Fallcolours, we investigated all these places when my mother was having her bone marrow transplant. We couldn't even stay at Ronald McDonald *then*, as that house is really for the families of patients at the Children's Hospital. The other charitable places are big "nos" too, as they are more for heart surgery patients, etc. As always, diseases like ours fall through the cracks in the system.

I had thought of booking accommodation, but the problem is that it's a weekend during a high demand period, and I would lose my room deposit if something went wrong (or right) and I didn't show up. Like LMills I'm on a scarily small income and can't afford to lose an entire week's worth of money just to pay for a room I might end up not using.

Ta though.

I.
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Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 5/6/2009 11:43 AM (GMT -7)   
Ivy,

I'm glad that it "looks" like things will work out for you and I will be keeping you in my thoughts and hoping that they actually do work out. : )
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.....


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/6/2009 12:49 PM (GMT -7)   
In my state you have to have someone with you to leave the hospital after a colonoscopy. I'm not sure if they will allow you to stay if you don't have someone though. When I had mine my husband was a police officer and ended up having to work late because of calls. He phoned the hospital and said he hadn't forgotten me but couldn't go off duty yet. I was still sleeping in recovery so they just left me there until he got there. Not sure what they would have done if an emergency came up and he wasn't able to come get me (like if he got hurt or something).

I think your best bet would be staying in the city if you had to (as in renting a room at a hotel) but only if the hospital wasn't going to give you a bed. See here in the states it would be a lot more money to pay for an overnight in a hospital than it would an overnight in a hotel, unless it was covered by your insurance. But if the only reason you needed the room was because you were far away I don't know if the insurance would cover it. Also, would it be cheaper to hire someone to travel with you? If you asked at your church or something I am sure you could find someone willing to. Maybe you could even find someone to drive you if you paid them and lessen your trip.
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). 


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 5/6/2009 5:52 PM (GMT -7)   
Hi Ivy that is crazy they don't have a bed for you did you try contacting the CEO of the hospital there always busy but you tell them that your going to the papers with this and things will change beds will become available for sure they have to have at least 10 beds per ward for emergencies purposes thing is they don't want to pay that extra nurse they need to call in,by the way in the city here they have accomodations for 1 day surgery at a lodge for patients its not fancy but at least your safe and there is a bus that is there all night in case you need to go the hospital i feel so bad for you this is simply crazy that this is happening what the HE** happened to our health care and these big city hospital snots who do they think they are if it was there mom,sister.aunt,uncle,friend who ever this clearly would not happen letters get read some times but the words that leave your lips stay in someones head a long time.Best of luck to you Ivy. Your Friend Jenn smilewinkgrin
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 5/6/2009 7:18 PM (GMT -7)   

Ivy, I wish I could drive you to the hospital!

 

They demanded I have someone stay with me the 24 hours following my seton insertion and said legally, if there is noone to take care of me and take me home during this period they would be forced to cancel the surgery.

 

I can't believe this dr has been so rude. The medical system in Australia seems to unfortunatley allow low-quality drs to practice in our country (case in point: my GI who would not even look at my abscess and sent me home with yet another round of antibiotics, and me ending up in the ER two days later). You just can't take what they say as being right anymore unfortunately.

 

I hope you find a solution to this problem, I know how hard it can be when you're far away from your loved ones and you don't have the people caring for you that you really want. It is so hard and isolating. I'm glad that dr stood up for you!!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/6/2009 7:26 PM (GMT -7)   
Absolutely. I'm familiar with the 24 hours rule too, Phoebe, and am surprised the doc even considered flouting it.

This seems to be happening a LOT to those of us who come from rural and regional areas and that is, I think, why my doc was annoyed enough to phone them and pull rank. It's crazy, really, because my town, while distant, isn't tiny or remote. I'd hate to think what happens to the people in RFDS territory.

Ivy.
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ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/6/2009 7:33 PM (GMT -7)   
ps. Oh, seeing as this is an international forum I should say that RFDS = the Royal Flying Doctor Service .
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WorrywartNana
Regular Member


Date Joined Dec 2008
Total Posts : 86
   Posted 5/6/2009 7:44 PM (GMT -7)   
ivy6: I haven't attended church in 20 years but a couple years ago I had to make an 8 hour trip to a big city, in severe pain, to have surgery in a hospital that had a "trauma center". I didn't know anyone in that city & I had no one to drive me there or to bring me home when I was released. I have never belonged to the United Church of Canada but I approached the minister of our small town & asked if he had any ideas. Bless his beautiful heart! He came up with a plan to get me there, have support during my hospital stay AND even made arrangments to have me escorted back home! It couldn't have been any better than that!

Try any church in your area.... maybe you'll be to get there WITHOUT the train ride! .... it's worth a try?

Sure hope it all works out for you, ivy6... HUGS!
 
19 yr old Grandson - Dx UC 12/08;  DX CD 04/09
Apr 9/09 CD Flare:   Hospital meds: Humira injections started Apr 24/09;  Imuran 50mg; hydromorphone for pain; diuretics; prednisone 50mg & tapering 10mg/dy.   Past Meds:   Hydrocortisone,   prednisone,   oxycodone,  Tylenol,  Demerol,  Duiretics,   Asacol 800 & Morphine (allergy to both), cipro,  flaggyl, vincomycin;   Suppliments:  potassium,  multi vitamin, boost, low fiber diet.
 
Has had problems since day diagnosed

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