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I'm always saying how it amazes me that doctors neglect to share so much information that patients really need to know. Not just in the IBD world....It seems to be a pervasive problem.

Before the internet age, we were at a much greater disadvantage. Thankfully, we are able to educate ourselves better now and advocate for ourselves better.

Still, it seems to me patients should be offered more information up front by the medical world. Like a more comprehensive "this is what to expect welcome package" to the IBD/j pouch/ k pouch/etc world.

I need to get myself back on my feet first. But my area is severly lacking in patient educational information....I mean the type of information found on this forum. I'd love to some day put together a package of information that area doctors and hospitals can offer to patients that goes beyond what the medical field currently offers patients.

I am not sure what it would look like, but it sure as heck would include jpouch.org as a recommended resource!

I'm just think right now. Like I said, I have to get back on my feet first.

I'd love to hear any thoughts on this, in the meantime!

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My surgeon's office has a pamphlet wall with paphlettes for ever single type of IBD, UC, Crohns, etc plus every possible solution possible...j pouches, k pouches, ileos etc....while you are waiting to find out what they are going to do to you you can read up on the horrors and semi-horrors available to you...it reminded me of the old fashioned travel agencys with those palm tree covered pamphlettes with sweet sunsets and sailboats except this one has ostomy supplies, k pouch tubes and 'what to expect once your colon has been removed'...
Sharon
skn69
My surgeon gave me a fairly comprehensive booklet about the j-pouch, which, although brief, did provide details about the common complications, diet, etc. Of course, even when details are specifically spelled out, it's hard to really relate to the whole experience from a booklet, so he also put me in touch with another j-pouch patient who was willing to call me and talk about her typical days. That was quite helpful and did ease my mind, because it actually gave a HUMAN experience. So yes, if the package had been put together by a patient, I'm sure people could certainly relate to it more!

It was a far cry from my emergency colectomy, however, when there was really no time for much explanation. Afterwards I was just given a pamphlet titled "Living With An Ilestomy" that had 2 smiling people on the front riding bicycles. That was certainly not the way I felt.
Spooky
KIA
Write to the Joint Commission .Hospitals are reviewed on everything.Write your story.THEY LISTEN.without their approval Hospitals do not get their certifcations to run their business.The Joint Commission approval means they are given a GOLD STAR.
Also in NYS you can write the Dept of Hospitals , The hospital you were in can be revisited and their policy on discharge information can and may have to be changed.They can be fined.
Remember we in trust our lives to them.We should be told it all and we are not.
In NYS you are given discharge information Nurses are suppose to sign and go over it all.All who cared for you also must document what you have been instructed on your care post discharge.
Cassiecass
C

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