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john68
(@john68)
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Joined: 1 year  ago
Posts: 1032
August 15, 2018 3:33 am  

Hi All, Over on another thread Stella posted the great news about the progress on her recovery and being asked to be an ostomy coach. This is a very important roll and can make a hugh difference to the patient. I know I had just a phone call from a guy after my surgery and his advice and reassurance was so comforting and valuable. Any of us when visiting our stoma nurse is would be worth saying that we would be willing to speak to any new patient, My ostomate coaching was just a 30 mins phone call but made a difference. I asked Stella,s permission to use her name and experience before posting this :-) 

ileostomy 31st August 1994 for Crohns


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Linda Knelsen
(@dlkfiretruck)
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Joined: 1 year  ago
Posts: 200
August 15, 2018 4:05 am  

John, you are so right. I had met with a nurse while I was in hospital and only if there was an issue.  I saw her once after I was home. I still had no clue what to ask about for what I was going through, nor was I given any information that I might want to know about...such as products, samples, needing further supplies, when to order and what was generally available to me as a patient on the sort of mend. I had asked if there was anyone with an ostomy that I could talk to and was told no. That was it. I went home ignorant as a bed of nails.  It was Eric who told me thru videos and his story anything else I needed to know and then when I got brave enough, I talked about it here. First time since 2008! It was all of you, who helped with this. Now, if I could just stop the writer within and shrink my notes. Thank you all for your help all over again!  Being a coach is a great job, you will continue to do it well, and you all should be proud of yourself for sharing openly about your experiences. A huge thank you!


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VeganOstomy
(@veganostomy)
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Joined: 4 years  ago
Posts: 1694
August 15, 2018 10:03 am  

Yes, these are wonderful programs to join or request!

In Canada, the UOAC calls it their "Ostomy Canada Society Visiting Program" (info: https://www.ostomycanada.ca/support/uoac-visiting-program/ ).

In the United States, I believe it's also called the visiting program, but you may have to contact your local chapter to see if your city or local hospital offers something. 

These patient visitors are trained and often matched based on age, gender, lifestyle, etc... it's pretty targeted so that patients can relate more with their "mentor". 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Marcie
(@shulmjs)
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Joined: 12 months  ago
Posts: 1440
August 15, 2018 10:55 am  

My support group here, we and I have gone to hospital and home visits.  I have done mostly home visits.  I bring all samples, the order  books.. (so they can understand them better) and information about ostomy and their stomas.  The most important thing is NOT to over do it !! You can scare them!!!!!! Early adjustments, understands and taking care of themselves is first. Always a ear to hear them out..  And of course a hug!! And we then take it from there.. 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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