k pouchers: do you wear a Medic Alert bracelet and what does it cite?

I sort of agree with you...we should wear something indicating our condition although I have not done so in ages...

I used to carry a USB key with my whole medical file but you need to find a way to tell the doctors in ER in need be (hopefully you never need it) to check the key...a keychain with a data stick is a good idea too...a medic alert is not that useful if they do not know what the k pouch is...(here in Europe they do not know what medic alert is!)...

Some people carry a card in their wallet or purse...you need something that tranquilizes you and gives you reassurance that they will know what they are doing in the case of an emergency.

Sharon

i'll call the ostomy nurse on monday and ask for wording suggestions.  the language i came up was woefully too long.  how about-- 'k pouch: google it please'?  or a tattoo over the stoma with instructions?

I would suggest the medical terminology of "total proctocolectomy with continent ileostomy." Perhaps adding something to the effect of "ileostomy requires periodic emptying by intubation using Marlen 30fr (or whatever you use)."

Jan

Sounds good. Thanks, janet

Even after explaining it in detail to my 1st French surgeon (I was awake at the time and not in any urgent situation) when he finally operated on me I woke up with an ostomy bag stuck to my abdomen and no cath in my stoma!

So much for them understanding detailed explinations.

Somewhere along the line you must explain that in case of prolonged unconsciousness to place an indwelling cath into the stoma and leave it there...if not they may never figure it out.

Sharon

Sharon, that is a perfect example of less is more. Busy doctors, and especially surgeons can tend to glaze over if you get into detailed descriptions. I try to be short and concise and let them ask questions if they desire more info. They usually don't. Ever notice that if they get access to your records in advance they don't seem to have reviewed them? They just skim over the basic summary (if you are lucky).

Jan

yup...KISS (keep it simple stupid)...good old fashioned sales technique...simple...

Sharon

I have two medical alert bracelets.  One is for my Myasthenia Gravis the other is for my K pouch.  On the K pouch one side I have my doctors name and phone number and on the back I put: Koch Pouch, Continent Ostomy, Drain W/30 French Catheter.  I have been in the ER because of my MG, but I was coherent enough to tell them about my pouch, so I've had no problems, but who knows if they would find the bracelets on their own!  Good Luck  Judith

judith

had to look up MG.  sorry you have that also.  tough

am looking at bracelets, but must admit i'm not warming up to the idea of wearing it.  am thinking of pinning it to my underpants.  thanks for the wording, and good idea to put doc's name and number on it as he can talk ER folks through proper way to intubate.  let's hope we never have to rely upon the bracelets.  janet

Glad I saw this. I had my new BCIR done successfully in LA May 2015. ( I had a Kock Pouch for 18 years prior to that). My Surgeon told me to get a Medic Alert and I really need to do it for basic reasons and also because here in Oregon we don't have a Surgeon currently that is "Active". So I think that mine will say>>  ((BCIR patient, Continent ileostomy. use 30 French Catheter. Contact Dr. xxxxx at ###-###-#### immediately.))  Maybe some additional info but I think the cath size and good contact # is a must. I had a neckchain but maybe I will have both a neckchain and bracelet so I can choose which one I want to wear.  I am going on my one year since recent surgery and very happy to say it has been the best one I ever had.

;-}

hi all,  i finally got a bracelet, from roadid.com.  with shipping it was about 30$, which included two silicone bands, the metal plate and engraving, a medic alert badge to put on the band.  looks like a fitbit and i can slip it under my watch.  the people at company are very helpful.  am thinking of getting a neck chain and wearing it around my waist, along w roping a catheter around my panties.  this would be when traveling in less than usual places, such as xiajaing provence in china, if all goes as planned.

had the following engraved--they will help you with suggestions and examples

JANET xxxxxx / 1947
CONTINENT ILEOSTOMY
INTUBATE: MARLEN 30FR
CATHETER WITH LUBRICANT
DR KIRAN 212-342-1155

There is a girl who just got nominated for an award for 'inventing' a medic alert bracelet! Yup, we are 50  yrs behind and slowing down fast!

Sharon

Hi Janet. I do wear a medical alert bracelet. Wearing it for 10 years plus.  When you call the company they will tell you two ways to pay. If you put your own info in on their site it is a lot less. You list all the meds and doctors and your osteomy. On the back of your Braclet you will have your info, cath size and whatever else fits on. Also on the Braclet is a 800 number any doctor or nurse can contact and your file comes up. Also, have found nice Braclets on line you can attach your medical alert info to. Hope that helps. Best of luck. Joan

Hi again, forgot to mention I have all my info on my cell phone. If the nurse or doctor knows I put it under ICE.  Also under my name it says medical info below. On my phone it is in bright red medical Id. See if you can locate.  

That is if they have the time to look and know about it.  Joan

I am getting a bracelet online at Laurens Hope; I don't wear jewelry much, but I found this one and will wear it. I have scribed exactly what Janet has in the above few posts. Because Dr. Dietz left the Clinic I will just have the colorectal phone number. Coincidentally, before being discharged from the Clinic several weeks ago, the Stoma nurses and several of Dr. Dietz's fellows asked if I had a bracelet. They recommended to get one sooner than later so nothing could happen like Sharon's ordeal. 

Can you please tell me where I can get this bracelet and also the appropriate description of a jPouch that it should read? Thank you. 

I just reread post! Thanks. I'm going to order one ASAP. 

 I have found the silicone bracelet the best solution for me as it blends in, similar to a fitbit or other exercise type bracelet. When I was first in China I thought to tape  the catheter to my underpants, but I never did and eventually  got more comfortable traveling w k pouch.  Of course my medical ID wasn't in Chinese. Oh well.

 I do think the directory system is a good idea, but quite honestly I'm too cheap to pay for the extra monthly costs. Have enough expenses. So glad to hear others are getting the ID. Janet 

Hi all--was at columbia in nyc for a valve revision due to a hernia.  as part of the post-op procedure the stoma nurse offered me a medic alert bracelet.  it's bright red and had the basic info on it, but of course not my name.  as i already have one--and i wear it all the time!--i declined.  just thought you would be interested in knowing that they actively promote the id.  be well, janet

I would love to have one except that they wouldn't know what to do with one here...

If I thought that anyone would consult it before yanking my abdomen open, I would be they would be more likely to chuck it than read it.

Sharon

Your post really amused me.  Yes I could imagine the same here.

I had thought about a bracelet but have never been given any advice or info.

Its as if we come from outer space. 

Still having to find info by myself.

sharon

not funny at all!!  it's reality.  perhaps, if i had been unconscious when brought into the er--that would be 5 times since i started wearing it--they would have looked as couldn't rely upon my providing info.  who knows?  at any rate i paid notice that nobody every looked at my bracelet during any er/hospital admission.  

it's possible that the silicone version looks too much like a fitbit thingie?

patricia: see my 5/26/16 post to answer your questions.  janet

I purchased one after Janet’s 5/26/16 post and the hospital noticed and does pay attention. I purchased mine through Lauren’s Hope & pretty much followed Janet’s guidance-my name, Kpouch- continent osteomy, intubate w/32” Marlen catheter w/ lube, ICE, & Dr.Dietz’s info since he is my surgeon. I find it extremely important & helpful. Kpouchers should have one. I like the cuff the best-attractive on wrist, medical alert visible but unshowy. 

 I like the cuff style.  glad hospital staff has paid attention to it. Maybe I’ve just had a bad run, especially the hospital in Qatar!

I may just try it with all of my medical conditions, I surely need one but they do not recognize them here, don't use them at all and like I said, it would only be useful for me when travelling or when back home Stateside.

Sharon

I have a medic alert bracelet. The doctor advised me to get one. When I contacted Medic Alert, they asked me the conditions I have. With reference to the K pouch it says Koch pouch, needs cath. It also includes my another condition and my med allergy. I also have all my info on my phone on an app called care zone.  I also have a summary of all my conditions on a reg size paper that when I went to the ER I just gave them the paper. Unfortunately that didn't go as smoothly as I anticipated. When the nurse asked me questions to put in the computer, I gave him the paper and he handed it back to me than asked me the next question. Until I finally told him, just keep the paper. Then he kept it until he was finished inputting the information. When the doctor came in he said I was officially the first patient he had that was so well organized. But I'm not sure ER doctors would look/think to look on someone's phone esp if it was an emergency. So the medic alert bracelet would be handy, I think. 

  as much as I advocate for a medic alert bracelet, and I do wear it 24/7,  nobody in the ER has ever looked at it. Over the past year and a half I’ve been in the ER five times, of which I must say I am not proud.  

The phone app sounds like a really good idea and I’m going to check into it. Thanks for suggestion.

i used to write out all my medicines, allergies and such and found most doctors or nurses  would not take my list.  And I still needed to review what is in their computer.

When I went to the ER I was conscious and admittedly they didn't look at my medic alert either. Hopefully if someone is unconscious they would look for and at it.

It bewilders the mind that the ER staff would not take your written information. The nurse did take my written information I had but wouldn't keep it until I told him to keep it. Then he did until he finished inputted all the information. But he did take it. And when he gave the paper back, I gave it to the doctor who used the information to call the K pouch surgeon. 

I searched under medic alert and all the alert apps for medical purposes came up including Care Zone plus a number of others.

I hope you find one that fits your needs and is helpful to you. My best to you and Happy New Year to one and all. 

LadyTay97 posted:

When I went to the ER I was conscious and admittedly they didn't look at my medic alert either. Hopefully if someone is unconscious they would look for and at it.

It bewilders the mind that the ER staff would not take your written information. The nurse did take my written information I had but wouldn't keep it until I told him to keep it. Then he did until he finished inputted all the information. But he did take it. And when he gave the paper back, I gave it to the doctor who used the information to call the K pouch surgeon. 

I searched under medic alert and all the alert apps for medical purposes came up including Care Zone plus a number of others.

I hope you find one that fits your needs and is helpful to you. My best to you and Happy New Year to one and all. 

Yep, that is the main function for the Medic Alert> as in being unconscious and taken in to the ER or worked on in the field.  I have not had a new one but now I have  a reliable surgeon that is not only proactive but knows how and what to say.  But we are living in this different world it seems and even being conscious I have had ER doctors ignore my plead to consult him in a crisis.  Now today I just hope they would look at my Medic Alert Bracelet or necklace.  I am planning on getting one soon.   I know that it is just a fact that we need more doctors and nurses to know that we exist and that is not the case in a lot of areas.   I suppose I will have to shop this out and see what the best company is these days.  2018 and a new year for us all.

I wear a medical alert ankle bracelet which says continent illeostomy contact & name & number if my surgeon plus med alert #.