Never feel terrible asking questions; we're here to share our experiences and to help where we can.
Do you mean "do you have an odour at times other than when you are emptying your bag"? If so, the answer should be "No". If you do have an odour, there is something wrong - your bag might be leaking or you might not have cleaned the opening properly when you emptied it last. (Others might be able to think of other occasions) But there should be no smell at ordinary times.
There will be smell when you empty your bag and you will be very aware of it because it is right in front of you. But most of the time - and if your gut is working reasonably well - it shouldn't smell much worse than when your husband or anyone else goes to the toilet. There are things that you can get to put in your bag that will help reduce the smell; your stoma nurse should be able to tell you about what is available in your area. I find that eating fish affects me worst in terms of smell, but I eat it just the same because it is good for me.
Pouch leakage varies from person to person. You might take a bit of experimentation until you find what brand and style suits you best - again your stoma nurse should help with this. And you need to take care when changing and to learn to recognise when your pouch needs changing. I can go for 4 days if my output is in good condition, but might need to change every day if things are not so good. And, it must be said, sometimes you get leakage for no reason that you can fathom. I have had an ileostomy for 12 years and still get the odd problem.
But the advantages far outweigh these disadvantages!!! You can start living a normal life again and, with luck and care, you should be able to do almost everything that you were able to do before the onset of the Crohns. I travel to all sorts of out-of-the-way places and, in 2010, spent 10 days snorkelling in the Galapagos Islands.
If you have any more questions, ask away. Nobody on here is going to be embarrassed. :ghug:
