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They don't get it! auugh!

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Posted 5/4/2012 4:44 PM (GMT 0)
Hi all,

friends trying to each help out so much in their own way, BUT don't really get what having a non-working stoma is like. So weak from being unable to eat,then if I do I have to purge with prune juice. ONe is like, do you have an eating disorder. NO!! i need a surgeon. ONe is like you need to use holy water and holy oil. Yes prayer is good but I need a surgeon. All I want to do it sleep and LATER IF I get the energy I will try and get to my favorite park for a walk. So many mixed messages, not know what to do. I think they all mean very well, they are just as fed up as I am with someone being left with a stoma that does not work.

RJ
Posted 5/4/2012 6:43 PM (GMT 0)
Sorry Rosemary. I think we've all been through this w/well meaning folks who make things worse. I had the person before surgery who said acupuncture could cure Crohn's and the person after surgery who said if I prayed I'd get a new colon.... and there are hundreds of such stories out there....

Hang in, hope you get some help soon.
Posted 5/5/2012 1:31 AM (GMT 0)
Blue, yep those are very typical stories from very clueless yet well meaning people. I guess as long as I keep in mind everyone is well meaning I can let all the non-sense go. I really do believe that those of us who have been through all that we have are among the smartest of the people that I know (in this field of course as we are the ones with the first hand experience) we likely all wish we did not have. :-) Rosemary
Posted 5/5/2012 1:27 PM (GMT 0)
this in no way compares with your situation rosemary, but during my entire wedding, all my family kept whispering and asking my parents if i was anorexic or bullemic cuz i was so skinny.
and i kept disappearing to go to the toilet (like 40 times) cuz of my severe UC flare.

its like "no, im not making myself puke in the bathroom, im crapping bloody diarrhea with copious amounts of pain", but yea, thanks for your concern! (douchebags)
Posted 5/5/2012 2:23 PM (GMT 0)
OMG people are clueless arent they? Jeeze. RJ
Posted 5/6/2012 12:27 AM (GMT 0)
The problem with being clueless is created by being clueless. Those well meaning folks don't know that they don't know. What did we know before we got our ostomies? Probably not much more than these guys. Since my surgeries I spent a lot of time thinking about all the stupid things life gave me the opportunity to try. In trying to do well for others I sometimes put others in a position of discomfort. That'll never happen in the future, thank goodness, but it's not that out of the ordinary. Maybe we could learn some nice ways of kindly suggesting that those guys just let it go until we ask. Maybe if we said something like, "ya know what, I'm just not doing real well at the moment and I appreciate your willingness to help me but you and I can't right now. But thanks so much for your wishes." Who knows; it's tough when good people are helpless. Mike
Posted 5/6/2012 3:03 AM (GMT 0)
Yep Mike, you are right. Clueless is clueless, but if someone has a closed off poop hole be it a stoma or a rectum, it is pretty hard to not get it. BUT, I sort of use your method and I take the good intent that comes my way. Each person has their own way of offering support so I don't shut anyone off. It is just amusing the different ways. You are right, before we all got into all this knowledge that we did not want, we were likely clueless too. This is one thing I would rather have been left clueless on :-)

Now I so long for the days when my ostomy worked :-) New perspective there. No longer is HAVING an ostomy a big deal, it is the fact that mine is not working! I am like, oh, if it only started working again or could be made to work again. Rosemary
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