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Crushed by Specialist Nurse

Hi,

I'm new here but hoping for advice/consolation! I'm having surgery next week for bowel cancer following nearly thirty years of Crohns and went to see specialist stoma nurse yesterday who was really nice. The problem is, she said my file said I was going to have a colostomy which confused me a bit because I thought the surgeon had said he was going to do an ileostomy (I had a temporary one which was reversed after a year a long time ago). ANYway, she then spent an hour telling me how very much better the colostomy would be than the ileostomy, much less noticeable, much easier to deal with and adapt to etc etc and I went home feeling quite jolly until I spoke to surgeon's secretary this morning who said she was pretty sure they were going to do an ileostomy. Am now feeling a bit crushed and wished I hadn't seen nurse as I was quite happy before in my ignorance that I was getting the worse deal!

Has anyone any cheery words, ideally saying that colostomies are rubbish and the ileostomy is the go-to operation, especially as there is no going back this time?!
 

DJW

Forum Monitor
Hey, I've got a permanent ileostomy and it was literally a life saver. I got it at 19. I've been to college and university, play golf, softball, hockey (ice) and cycle. I really don't know anything different. Hope this helps.
 
Thank you so much for your reply, that's really good to know. It isn't as though I have a choice but the timing could have been better!
 

Trysha

Moderator
Staff member
Hi Fredfiend
There is a stoma support group on this forum that you may find helpful .Click on the title at the top of this page and you will find it.
Stoma nurses usually work very closely to the surgeon and your stoma may depend on where you have the cancer.
Are you able to get in touch with the surgeon directly to ask the question? This is the pathway I would be following.
It is very upsetting to hear two different stories. It is your life and your body---call the surgeon and ask directly.
Sorry you have to go throught this, it is most unfortunate to say the least.Do keep in touch and let us know how you get on.
Feel better soon
Hugs and best wishes
Trysha
 
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