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In ICU for the moment...see post in General...just wanted to add that coming in to ER with a K pouch is quite the culture shock for everyone involved...trying to explain that on top of 2 rare diseases (Ehler's-Danlos & VATERS syndrome(just a group of a bunch of congenital birth defects) while juggling fear and panic is a rather daunting experience. 

I grabbed my data stick and some old scans but no one cared to look at any of them...

I feel like a naked clown with an audience which I am paying to stare at me...

At Least I am educating them on know pouches...giving tutorials to the surgeons and nurses...

Still waiting to hear what happened to me...

Sharon 

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Sharon--so sorry to hear you are at hospital!  damn.  having gone through ten if not 15 different docs in Qatar hospitals I understand your frustration.  had felt like an animal in the zoo.  because every single doc wanted--heck demanded--to look at the stoma i wanted to ask them if it's routine to roll over patients on their belly so they can look at the poop hole.  keep us posted.  cyber hug, janet

Sharon, I am sorry that you are having problems in the hospital and hope you will be going home soon.  I remember years ago when I was hospitalized with a MRSA infection that took out the use of my knees.  I was put on a cocktail of 3 antibiotics that were administered by IV 3 times a day.  My insurance had me transferred by ambulance to a rehab facility and left the IV port in for continued antibiotic administration. Upon arrival to the facility, I was put in a standard length 1930’s manually cranked hospital bed (I’m 6’ 4”) and was not formally  “admitted” by the head nurse until 6 hours after I arrived.  I was due for my antibiotic administration at that time and was in considerable pain.  I showed my IV port to the nurse, but she refused to give the antibiotics or pain medication because the discharging doctor at the hospital had “forgotten” to list them on the discharge sheet.  I felt like I was living an episode of MASH.  I attempted to contact my doctor to get things straightened out, but was only able to leave a voice mail message with the return phone number the nurse gave me (which turned out to be incorrect).  When nothing was done to correct the problem, I let my Type A personality out of the cage and did not let up until they gave me my antibiotics and pain meds sometime after midnight.

The following morning, the facility administrator came to my room and said that in his years of service, he had never had staff members come to him so shook up after what had happened the previous night.  He apologized profusely for the bad care I received, had me promptly transferred to the proper unit where I provided a modern bed of sufficient length, Every day for the next two weeks I was there, he brought me his copy of the Wall Street Journal.  After that, the care I received was very good and I was able to walk out of the facility unassisted.  The lesson learned is to be assertive about the medical care you are given.  Question everything you feel or know is incorrect.  Hang in there, girl!

Bill

Thanks Bill...I have been 'stepped down' to a normal nuro room ...having a cardiac CT scan with contrast and an arteriogram....crap...these guys so not fool around!

Starting to feel rather furry and guineepigish... 

Not sure if they bill by the test or the minute but I am thrilled to have 3 insurances.

Years ago at Mt Sinai, I was to be discharged day 7 post op pouch repair...on the night I started kicking up a fever, by morning nausea and chills...my head pounding...the orderly showed up at noon to discharge me but I couldn't move...he yelled, screamed at me and threatened me...finally he stated shaking the bed...then I started to cry and screamed for doctor C...end of story...they kept me 2 Xtra days...the director came to apologize profusely and I was too sick and tired to sue...

Sometimes people forget that the sick are vulnerable and need extra care.

Sharon 

skn69 posted:

In ICU for the moment...see post in General...just wanted to add that coming in to ER with a K pouch is quite the culture shock for everyone involved...trying to explain that on top of 2 rare diseases (Ehler's-Danlos & VATERS syndrome(just a group of a bunch of congenital birth defects) while juggling fear and panic is a rather daunting experience. 

I grabbed my data stick and some old scans but no one cared to look at any of them...

I feel like a naked clown with an audience which I am paying to stare at me...

At Least I am educating them on know pouches...giving tutorials to the surgeons and nurses...

Still waiting to hear what happened to me...

Sharon 

Hello

Oh! I so understand how difficult it is explaining K pouch once admitted to hospital.

 This is just what happened to me a year ago when my valve jammed. In the end I ask for a pen and paper. In shocking pain I tried to draw and explain everything. I finally politely said "look it up on line". 40 years of K pouch and still feel I face a brick wall. Once nurses understood they were interested and very kind.

Best wishes

 

Exactly Patricia, 

I have been home for nearly 2 weeks and I am still mind boggled at the fact that no one even knew that k pouches exist! The number of medical staff who told me that this is a wonderful idea...When was it invented? When I told them that mine was 38yrs old they gasped! Why wasn't it being offered in France? Why weren't people talking about the 'other options' to outside bags...I had nurses sniffing me to see if I had a smell! (yup, apparently here, most people with end ileos have a 'smell' according to the nurses...one of the numerous setbacks of being poorly fitted and lousy upkeep and follow-up!)

So, what do I do? Go campaigning for k pouches across France? Not sure if I have the strength to hit the campaign trail...but maybe...

Sharon

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