I have a poo bag for life AMA

[bag4life2024]

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

I am sorry no one has asked you anything! That must have felt pretty rubbish and uncaring of mumsnet. Although to be fair I thought your thread title meant a dog poo bag for life and was like... "no"

Do you mind having had an ileostomy? How much do you mind? Has it helped your IBD?

Can you feel when you are going to the toilet? Did it make you feel squeamish at first when you had to change the bag? Does the whole bag go into the rubbish each time? Has it helped with your illness, I really hope so. Sorry if these questions are strange.

Are you still on medication for your IBD or since having an ileostomy, has it meant you have you have been able to be meds-free?

There really isn't enough funding into this disease at all and diagnosis usually made way down the line, often picked up at crisis point.

I wish you the absolute best for a healthy future.

im interested to know how much it interferes with what you want to do. Can you go swimming? Do you worry about it smelling? What happens a night- do you have to be careful not to lie on it? Is there a danger of infection? Are you conscious of it during the day? What about your sex life? Have you got used to it? I imagine id find it a nuisance and that it would get me down: how do you feel about it? Have you got used to it or does it bother you a lot? Thank you x

What age were you when you were diagnosed with IBD? What led to you needing an ileostomy? Did the medication stop working?

This is of interest to me as my 12yo son was diagnosed with Crohn's Disease last year. He's in remission at the moment and doing well on Adalimumab injections. But I'm watching him like a hawk for signs of a flare.

Was it a shock that you had to get one suddenly or did you have time to prepare?

I had one for a year when I was in my late teens because I had cancer. Following with interest.

There was a similar one just a few weeks ago, so it could simply be that many MNers have no more questions.

Does it impact the amount of food or types of food you eat?

How long does it take to change it each day? And is it always at the same time each day, so you wouldn't ever need to do it unexpectedly when you were out?

Does the hole where it goes in hurt?

Do you pass anything at all from your anus or it's just entry only at this point. In fact, does it affect anal sex? (If you're into that, sorry if not!)

Thank you!

Thanks, I realised there was a similar post recently only after posting and thought that might affect replies

I don't mind having a stoma really. It was this or death really so easy decision.

It cured my IBD so I can't complain really. I was on awful medication for a year before my surgery, think chemotherapy drugs and massive steroid doses so it really wasn't fun

If I've eaten peanuts or mushrooms it can be a bit uncomfortable for an hour or so 4 hours after eating but apart from that I can't feel anything. So with ileostomy you use drainable bags so you just go to the toilet, squat over it, open flap and it just goes into the toilet, wipe the end and go on your way.

You then take the bag off every 3 or 4 days using a medical adhesive remover spray and stick on a new one.

Yep completely cured me of IBD

There are no strange questions. Used to be so much taboo around having a bag which is why the older generation often struggle the most with the adjustment. I was 22 when I got mine

You have just answered my question, I was wondering if you put the waste product into the toilet although it didn't occur to me it had a flap.

No I got to stop the medication after my first operation.

I was on high dose steroids, chemotherapy drugs and organ rejection drugs (help with severe IBD) beta blockers due to steroids causing high blood pressure, reflux drugs and a few more I can't remember!

Yes you are right there needs to be more funding into treatments especially since the age range of most diagnoses for IBD are between 10 and 30 years old. Luckily I was diagnosed within 6 months of sitting in front of my GP at 20 years old. Others take years to get diagnosed and treated.

Thank you 😊

It doesn't stop me doing anything. I go swimming, rock climbing, roll around with my children etc.

No I don't worry about it smelling, bags have charcoal filters on them so no smell gets out.

I lie on my bag after getting into bed till I fall asleep. When it fills up a bit in the night it must feel uncomfortable enough to my asleep brain to roll over and not roll back.

You can occasionally get sore skin around stoma if you cut the hole in the bag plate too big but it's not a big issue. Never had an infection.

I wear a sort of compression type belt that keeps it squashed down in the day so no I don't worry about it in the day.

Sex life is fine, not affected at all. Bag can be folded up and stuck on itself with the velcro tab so it's only about 8cm top to bottom when it's like that.

No it doesn't bother me, i had such a chronic painful disease that led me to getting it, it's really the lesser of 2 evils

I was 20 when diagnosed

The steroids and immune suppressant drugs I was on were not maintaining remission so I chose to have surgery. Felt like I'd run out of options as the side effects of the mess were awful.

Sorry to hear about your son. Crohns is an awful disease, it can be far more extensive than UC. I hope he continues in remission for a long time

I had about 6 months to prepare. Drugs weren't working anymore so I made the decision to have surgery.

Having emergency surgery is a far bigger shock for people but they get there in the end

@Funnywonder My son was diagnosed with crohns when he was 8. He is now 24 and doing really well on infliximab injections. He works full time and is doing really well.
I understand your worry about your son, I massively worried for years about mine, and we had many ups and downs with flare ups with his IBD. But for the last 6/7 years he has been in complete remission. Hope your son does the same.

Doesn't affect food amount or type. You have to experiment for first few months to realise you could experience a minor blockage if you eat a ton of chickpeas and forget to chew them!

Change every 4 days or so. About 4 minutes it takes. Empty down toilet whenever needed. Quicker than doing a wee really. I only need to empty it twice when at work over 9 hours. Never needed to change it out of my house. Have spare in the car just incase.

Hole in stomach wall doesn't hurt.

My anus was entirely removed so entry and/or exit are totally off the cards! 🤣

Thank you for your answer @bag4life2024. It must have been a very difficult step to take, even though it was forced on you. I'm glad that you're living a full and happy life😊

Thank you for sharing your son's experience @Londonnight. It's fantastic that your son has been in remission all those years. Long may it continue. And it certainly gives me hope.

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.

Is there anything you can't eat/drink?

Thanks op.

I was fascinated by your post. I don't need to ask you any questions, I was nursing over 40 years and my late lovely DM had a colostomy. It's great that it's sorted your quality of life. Of course I met people who had them in emergency situations, and of course we're very traumatised. There was one chap of 20, but a lamp post on his motorbike, what they term "a traumatic leg amputation", but he lost far more than his leg this was 25 years ago,he was in a coma when I saw him. Good luck with it all.

@bag4life2024 thank you. That's interesting. The process of changing it sounds quite quick and easy. I think it seems a bit less daunting to hear your story. I wish you the best x

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

My mum had a wee bag for life after bladder surgery. I thought it was only us with such a dark sense of humour calling it that.

Best wishes op!