Can medical teams be more sensitive and cautious with patients that have aromas PLEASE??
Posted , 4 users are following.
I have Crohns Disease and had surgery which became complicated resulting in a stoma being fitted possibly temporary or possibly permanent depending if I healed well enough.
So why oh why have the medical teams, stoma nurses, dietitians, consultants and redioligists been so insensitive and thoughtless? I was cautious, even reluctant to check if it could be reversed as I'd worked very hard to come to terms with, and accept, a life with a stoma, but I got there. Life picked up, I was enjoying myself and my anxiety levels had reduced dramatically.
Going through the process of X-rays to check if I'd healed and obviously picking up on my caution and anxiety I was told "won't it be nice to be normal again?" "It'll be nice to get rid of that bag." "You can be normal again." And "Why would you want that for yourself?" Grrrr!
These people have no idea how hard it's been to get to a good place being left with a stoma. I don't think anyone meant any harm when making these comments or the look on their faces. Dealing with non medical staff with a stoma is hard enough, but I expected more from teams that must be coming across this on a weekly if not daily basis.
The problem is a double impact. Firstly that no-one listens when I tell them the very real positives of having a stoma. I concluded they don't listen cos that's not how they feel about it. This is supported by the negative undertone of the comments. Those comments have made me feel abnormal, not 'nice' and someone to be looked at with disdainbecause I have a stoma. That's how I feel after those comments. And I feel worse now about it than I did after surgery, as now I'm angry that medics have been so insensitive thoughtless and cavalier with their unfounded and unrealistic optimism.
This has beaten the comment from the nurse who weighed me during a flare up who said"gosh I wish I was 8 stone"!
Any suggestions?
0 likes, 3 replies
Kevinthestoma
Posted
sheila51371 Kevinthestoma
Posted
I agree totally with all you have said and reported, and considering that the Stoma nurses are also included in this little expose' when we all expect them to be the ones that have met it all before, and yet they also appear to think its abhorrant. I was pleased to see in my local Morrisons store that there was a notice outside their Disabled Loo that said Don't forget that some disabilities cannot be seen. Great!!! How many times have you had people stare at you because you go to use a Disabled toilet? Really its the same very stupid and ill conceived way of dealing with things that you cannot bear to think about. I remember being in a queue in a Fish and Chip shop and hearing a conversation that was occurring very loudly near me. It actually centred around the fact that Cliff Richard was appearing locally but had had to call off his appearance the night before. The one person said "Well you know he has a bag thing" and perhaps it was something to do with that"? Not too bad in the circumstances, but then the others ended up laughing and joking about his misfortune. I really wanted to shout out and say stop being ignorant, I have a colostomy and it saved my life, but because its totally abhorrant I have said before, they cannot deal with it in an ordinary way,easier to make fun. Yet you and I know it affects us as peoplel because of their stupid attitudes. You become different and I suppose because I developed Crohns Disease in my 20's and had it very badly at that time, had no chance of having children, the stoma made me feel A sexual. I know that sounds stupid, but I had always been a very feminine woman, and became paranoic about smells and the way it changed my body. Also the worry that it would act up and cause me to have accidents when least expected. I had terrible times with sticky tapes and allergic reactions to all and sundry and sometimes like a baby you would change your equipment and feel nice and fresh, only for it to happen again almost immediately, to the point that you do not know where to start. The strange thing is that it is not only medical staff that react badly, but my Sister, who you would think would just be very supportive turned out to be completely opposite and refused to kiss me in caseshe caught something that would make that happen to her. Totally misinformed and unsupportive in her ignorance. Instead of being annoyed with her for feeling this way and showing it I was sorry that I had caused her such worry. The good thing was that her partner called it my outside loo, which seemed really funny and something I could say and be happy with.
Maybe the big problem is that many people who deal with patients with stoma's find it something that they don't want to think about, in case it happens to them. I don't know but lets hope that somewhere along the road, they will begin to understand what we feel like when they say such stupid things; I am now 72 and have had my Stoma for 30 years now and it is totally permanent. Only in the last maybe 5 years will I admit to selected people only that I have a colostomy, because if I am honest I do not wish to end up in a long discussion about it. The funniest thing is that I take Co-codamol for the pain, and threatened that they may want to take this way and try something else. I have been heard to say, No don't do that, it is the only time I have some control over my colostomy. So I am making progress, and what;s more I am much healthier. Good luck for your future and I am glad you were honest enough to tell us what you felt about medical people making silly comments. You are not alone, and who knows they may develop something in the future that is less of a problem to us all.
Best wishes Sheila.
stephaney28634 Kevinthestoma
Posted
Hi Kevin, that's terrible saying things like that what you have been through is hard enough. I have had two major operations, the first one was a emergancey had a serve flare up, i have a permanet ilestomy stoma and it was difficult to adjust. The stoma nurse in the hospital gave me leaflets and raced through what a stoma is and left. So, if you need to talk or advice there's people here who will listen.