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AMA
Original poster

I have a poo bag for life AMA

30 replies

bag4life2024 · 13/12/2024 19:55

I have had an ileostomy for 15 years
since my 20s due to IBD. AMA

OP posts:
anatomyk · 14/12/2024 16:41

bag4life2024 · 14/12/2024 14:52

Not really, I don't drink alcohol at all really anymore. You can get quite dehydrated so need to keep your fluid intake up especially in the summer so booze is tricky to balance

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Thanks @bag4life2024

DecemberNC2024 · 15/12/2024 01:44

Tradersinsnow · 14/12/2024 08:53

OP it sounds like you have had a dream run with yours. Fantastic outcome.

My son has one and has had issues over the years. He has an overactive colon so we sometimes need to do bag changes overnight as he has leaked. A bag has never lasted 3 to 4 days, he changes it once or twice a day. With his previous ACE stoma he had dreadful skin problems as his ACE ceased being continent and he was wearing a bag, his skin is perfect now though. We do have to be extremely careful around his diet because the overactive colon is triggered by food intolerances (known before his ileo).

He had the operation when he was 24. We were in hospital for nearly 4 weeks as it looked like he had an ileus but when they went back in his bowel was on the verge of going necrotic because of the previous stoma removal.

Would we do it again? Hell yes, even with all the issues it is better than life with a megacolon that simply didn't work.

It was a while back for me, but could it depend on what bag he’s using. The one piece bags had to be changed every day for me too, but with the two piece bags I could get a few days out of them.

raspberryripplecheesecake · 15/12/2024 10:21

The reason I asked about meds is, my DC has been on infliximab, double dose for over 6 years and immunosuppressants - (just trialling coming off Aza) Consultant won't reduce to single dose because of extent of disease when was diagnosed. If surgery is next step, it would be good to think he could live a meds-free life. x

Tradersinsnow · 16/12/2024 02:33

DecemberNC2024 · 15/12/2024 01:44

It was a while back for me, but could it depend on what bag he’s using. The one piece bags had to be changed every day for me too, but with the two piece bags I could get a few days out of them.

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His stoma nurses weren't keen on a two piece system, I am not sure what their logic was. We're due a review in the new year so I will ask then.

Original poster
bag4life2024 · 16/12/2024 06:50

raspberryripplecheesecake · 15/12/2024 10:21

The reason I asked about meds is, my DC has been on infliximab, double dose for over 6 years and immunosuppressants - (just trialling coming off Aza) Consultant won't reduce to single dose because of extent of disease when was diagnosed. If surgery is next step, it would be good to think he could live a meds-free life. x

With Ulcerative colitis, providing the entire colon and anus is removed, all drugs can be stopped. With Crohns it's a bit different as the area affected can move to small intestine etc so it's not as clear cut. I'd certainly expect your son to not need anywhere near as much biologic medication as he is getting now especially if it's currently only his colon affected. Hope this helps

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