Hi
Thanks for the posts.
It's good to hear from a fellow sufferer. I really know what you're going through, especially the bit about the clothes hanging off your body. I just can't seem to put any weight on. I look so thin. I hate looking in a mirror. My self-esteem is very low at the moment. I think the worst for me is that I constantly feel dehydrated. I just feel thirsty, but when I drink, it literally spurts out almost immediately from my fistulas. So, I dare not drink too much, as if the bag leaks, then I'm dead, as the fistulas during the day are deadly. My dream is to drink a huge bottle of lemonade all at once, one day perhaps. The only window I have to change the bag is in the morning when I get up, as I haven't eaten anything and they are relatively inactive. So, I can change the bag reasonably well without having to deal with an erupting volcano all the time. The real bummer is that the damn bags, no matter what method I use, always leak after a day or a day and a half. So, I literally have to change every morning. The stoma bag stays on for two or three days, but I generally change after two as I get itchy.
Slowly getting into a routine, but it's hard to come to terms with the fact that you're never going to be what you were before.
I cry a lot too. I have lost control of my emotions. I just sometimes spontaneously burst out in tears. It's hard to explain to people who don't understand.
Thank goodness for the local stoma nurses. They're brilliant. I don't know what I would have done without them.
I'll try bicarbonate of soda, but I hate the taste. I would love to know how to hide the taste.