Stoma fitted!!

At my original time of diagnosis I probably wouldn’t have challenged anything, but now I would always challenge something when I know it’s wrong. I had a follow up call with my main surgeon last week and she admitted that few medical staff understand what a total pelvic exenteration is, or involves. It can make certainly make subsequent hospital visits for other stuff a challenge!

Sarah xx

At two of my colorectal review appointments there have been trainee nurses present. Both of them thanked me at the end, saying that I had given them a great insight into life with a stoma. They were both really interested in what I had to say about things like how I managed at work and out of the house. Basic things really but things they hadn't thought about. They freely admitted that there isn't much information given around  stoma care but they were all the more keen to learn after speaking to me.

Kim

That’s really good Kim! My stoma nurses in hospital were very poor overall, and funnily enough one of them was at my father in law’s appointment pre bladder removal and urostomy last year. 

My partner was present, and challenged everything she said because quite frankly it was incorrect in our own experience. She didn’t like being challenged, but  it was disappointing to see that in more than 3 years this nurse still hadn’t increased her knowledge or gained any understanding about real life with stomas. I was never shown once in my 2 week hospital stay how to change either of my bags, was discharged with a bag of supplies with no instruction on what to do and left to get on with things. 

I’m glad you were able to help with the student nurses’ understanding.

Sarah xx

My stoma nurses are very good. I was visited  at home 2 days before my surgery to discuss the type of clothes I wear so as to mark the location of my stoma. She talked about diet an left me with a few pamphlets explaining everything. On my last day in hospital I was shown how to change my pouch an given a holdall containing everything I needed. She then rang me twice and visited me at home. I  seem to have been very well looked after in comparison to some people. I just thought that was the normal way. 

Kim

My stoma nurse in the community was brilliant and was an absolute mine of information when I came home,so I learned everything from her along with trial and error on our part! 

I was on a gynae ward after surgery so the staff had no experience of stomas and had not dealt with someone having an exenteration surgery before, so they had no idea about changing my bags. The stoma nurses rarely visited-I assume they were more active on the colorectal and urology wards so I may have been forgotten about.

Sarah xx

Oh goodness that happened to me too! I had APR in October 2022 and had the first follow up colonoscopy last August.I told the nurse several times but they insisted I put the shorts on with opening at the back. It was only when I got on the bed for the colonoscopy i was told I had them the wrong way!!!