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dobby123

Ileostomy & follow up Advice

Hi all
My mum had a temporary ileostomy just over 5 weeks ago and is dealing with it very well.
She’s had a couple of follow up appointments in the stoma clinic but I just wondered what the frequency of these are likely to be moving forward over the coming months?
Thanks

Liz Blakelands

@dobby123 Hi when I had a temp ileostomy (pre covid) after the initial 6 weeks or so I saw the stoma nurse every 3 months. The stoma can actually change a bit in shape so the stoma nurse does a new template for you. I had a telephone no for the stoma nurse and if you had a question or problem they always got back within the day. Of course there is a wealth of general stoma knowledge within this forum :x::x:

Freya84

My husband had his ileostomy in August and has never been seen or contacted by the community stoma team. He had a couple of issues post surgery and tried to contact the stoma team but didn't get a response so spoke to his CNS who was great. Thankfully he hasn't really needed them. I know other people who have had great support so I really think it depends where you are and how much you reach out or make contact with them

Mark McC

Hi @dobby123

I had my temp stoma for 8 months. I saw the stoma team daily while I was in hospital for the reversal and 3 times in the first 7 or 8 weeks post op as the brusing / swelling settled down, because as @Liz Blakelands says the stoma can change shape. Also in my case it took a couple of attempts to find the right bag that I was comfortable with.

After that it was left to me if I wanted to see them, they always said they'd be happy for me to call and make an appointment, but they were incredibly supportive on a few queries I had over the phone and via email. I think it depends on what you feel you need support wise.

Worried_Jay

Hi @dobby123 I’ve had my Ileostomy 13 months now, the stoma Nurses were of great help in the hospital then a Nurse came out to my home twice, I felt after that I was able to deal with it myself. My hubby was a massive help at the beginning but I always find it easier doing things myself lol. The stoma Nurse called me for a telephone consultant and said they were only at the end of the telephone and I could make an appointment anytime during their clinics if I wanted too, so they left it up to me. I never have, I’ve always being ok with it but they’re there if I need them, my stoma supplier is very informative too so I can always contact them for any advice too :x::x:

Amanda Sandham

I had my stoma for 15 months. I had a couple of arranged appointments with the stoma nurses at the beginning then phoned to make others when I was having problems or needed advice. Towards the end of my time with the stoma, my GP surgery employed a nurse who was helpful and I changed supplier to a company that offered stoma nurse support. I have 2 friends with permanent stomas neither of whom have had contact with a nurse for years. I think that it all depends on how you are feeling about things. They're there if you need anything or if you just want to sound off :x::x: