Have you, or someone close to you, had a stoma?

[Honeyroar]

I'm just looking for experiences. My husband may have to have one. It would be interesting to know how people lived with them, or tips on getting used to them.

Yes, I have (ileostomy, subsequently reversed).

Mine was done during emergency surgery so, although I had to consent to the possibility of it, I didn’t really get my head round it in advance. The stoma nurses in hospital were amazing, snd there was support afterwards (phone numbers or walk in stoma clinics). I was in hospital for nearly 2 weeks after my surgery so was competent with it all by the time I was discharged.

For honesty’s sake I should probably admit that I really hated having it, got on the reversal list as soon as I possibly could, and am fighting tooth and nail against the possible prospect of another one in the future!

Practically speaking, though, I did get used to it and had no real disasters, although there were a couple of times when things almost went wrong in an embarrassing way. I am not sure whether those happen with colostomies though.

I had a temporary ileostomy which was reversed about six months later. Mine was due to cancer. I didn’t enjoy having one but it was very manageable. A couple of things - when you wake up from the surgery there is a very confronting enormous clear bag. This is very different to the bags that you go onto use. It’s to enable the nurses to better monitor the output post surgery. Ileostomy output is watery and changing can be messy. Eating a few marshmallows 10 mins or so before hand can help firm up output for changing bags. It’s not fun but you do get used to it

Oh I didn’t know about the enormous clear bag! I was in intensive care and barely knew my own name for the first couple of days after surgery, so didn’t see any of that.

Sorry for my negativity in the night. If it is needed there will be loads of support and it will be fine. And if it is an ileostomy, as Violet25 says, the stoma nurse recommend things like marshmallows and gummy sweets for “firming” (as well as lots of loperamide if it’s an overactive stoma) plus daily crisps (!) for extra salt/sodium which is not as easily absorbed.

Thanks. We’ve seen the stoma nurses this week. We’re not sure whether it will happen at all yet, or whether it will be permanent or reversed. He’s had 20 + years of pain and trouble with his bowel, five operations and four hospital stays in the last six months. So we’rre almost hoping it would be permanent.

Ah well it sounds as though it might well be a blessing after all that. Best of luck to your DH, whatever happens

Hi OP
This website/blog may be of use? Although it is written from female perspective but hopefully some transferable information? Sam Cleasby is on twitter too
www.sobadass.me

Thanks, I will have a look.

Hi I have both sides to give perspective on, I am a nurse who works in this area but also have a DH who will likely need one in the future. From a medical perspective it seems awful at first it looks strange and the smell can be difficult, however the stoma nurses are amazing also they are easy to care for although life alteringm

For us now like you, It would almost be a good thing, years of awful drugs and uncertainty. Is am not saying it is completely easy but not the worst thing either.

Everyone is different and I have some patients who hate them and never get on with them others are glad to have them, I have seen them performed for all reasons and seen them close and personal. If it does happen don't assume it's the worst.

Hope all goes well with your DH.

Thanks. You too.

My Stepdad had a stoma created due to rectal cancer when he was about 75 (I think. He's almost 88 now).

He learned to cope with it pretty easily and quickly. He's continued to have twice-yearly cruises and swim in pools regularly. He has developed a pretty large hernia under the stoma but the doctors don't want to operate as it's not likely to be successful.

I know my parents have had a few nasty moments when SD has had a stomach bug and diarrhoea has been a problem. I think they've had their bedroom carpet changed a few times because he's woken up to a burst bag, but it's not a common event and they've learned to deal with it.

He did go for a gastroscope every couple of years and he found the bowel prep to be distressing, but the doctors seem to have decided that, at 88 and still independent and driving, they'll leave him be.

I thought it was going to be much harder for my parents to adapt to his stoma than it actually has been.