Oh Susan!!
I sympathize! I've had MANY bags come off from my ileostomy. In the beginning (25 plus years ago now), I regularly used to wake up at 3 AM in the morning—shit EVERYWHERE! I'd begin to cry... Hubby would calmly tell me to dry my eyes, get under the shower, and clean up. By the time I'd get back to bed, my husband would have changed the entire bed, and I'd be able to put a new bag on. And we'd go back to sleep.
But, yes, I can still recall the first few weeks, when my bag would constantly come off, every few hours. Here in New Zealand, we have District Nurses, and they were wonderful, REALLY! They'd come out four or five times a day. And my skin would be absolutely raw and bleeding.
Now though, having my ileostomy is completely normal. Most people in our community aren't even aware that I have a bag.
I don't like to talk about my illness.
New Zealanders tend to be very friendly, and it's common for complete strangers to say "hello" and "how are you" as you pass in the street. One generally says "I am fine, thank you for asking, and you?"
That was until I went to the doctor, sick as a dog. He asked me "How are you?" and automatically I replied "Fine, thank you"; and he replied drily, "If you are fine, what are you here for?".
I have stopped telling the people who matter to me that I am fine, because 9 out of 10 times I'm not fine... But not everyone appreciates my honesty. I have had to say to some that if they do not want to know how I really am, they shouldn't ask me how I am!
It's the Dutch in me I'm afraid. We're not people who sugarcoat things. We're sometimes brutally honest, direct, straightforward, and if our opinion on a subject is asked for, we don't always keep it polite, depending on the situation.
In all honesty, I can be forgetful, rather clumsy, and impulsive. And when we are in a hurry, I don't always bring my ostomy changing bag or another bag to put on... which has sometimes led to some awkward accidents. Once when my husband quickly had to grab some things from the supermarket, my bag had popped off, and I hadn't brought anything with me!! So my husband went into the supermarket, he also bought a lot of paper towels and then a security guard noticed that I was stuffing anything absorbent into my pants, and as he had a colostomy, he immediately walked up to the window of the car and asked me if my bag had come off? I replied yes, and I forgot to bring anything to change, and it's an hour's drive home, so he told me that he'd be back in a minute.
The security guard quickly came back with a small packet of nappies, just before my husband came back, he pulled one out of the bag and told me to use that as it would help get me home...
That a stranger I'd never met took the time to buy the nappies for me was so incredibly kind!! An hour later we were home and everything I was wearing went into a bucket to be washed, while I went under the shower.
These days, depending on how long I will be gone, I still bring a change of clothes, and my ostomy changing bag, with a precut baseplate, and I have filled a small bottle with Brava's lubricating deodorant, so IF I have to empty my bag when I am visiting someone, I can make sure that I can add some to my bag afterwards.
I do wish that I could find toilet spray in a small spray bottle which could fit in my bag—I no longer bother with a handbag and just carry a small backpack with me. Some people have told me that you can get trial packs that come in small packs, but I have never found any.
And now I have to stop chatting, as my husband is complaining that he's hungry, and would like something for his dinner...
Have a good day!