Got your message and hope you are doing ok. In answer to your questions, it is all a bit trial and error. What appliance (pouch) are you using? I am using the Welland Freestyle Drainable which I must say is very good, the flange does stick however I do get a leakage directly around the stoma area. I have just spoken to someone at Clinimed about this as they make a Convex version - I'm going to speak to my Stoma Nurse about this. I do have a bit of a moat around my Stoma like it dips inwards. I trialed this week the latest Coloplast pouch that folds up and has two vents that is supposed illiminate air in the pouch. Can't say it did. The first one I used leaked. The second one I used caused an itchy rash around the flange area. So I have gone back to my trusty Welland products! Reading through some of the messages on this forum, Coloplast tends to come up as a non-sticking appliance quite regularly. I guess though it does depend on your skin. I'm sure there are many people that use Coloplast with no problems. I also use every other day Cavilon - which is a barrier film that protects the skin. I find this helps.
Have you joined the IA? If not, do, if you want the address details let me know. I recieved this morning my first batch of information from them. There is a great journal included which gives loads of advice and also advertisments for different appliances. Also talk to your Stoma Nurse about trying different things until you find what's right for you.
I'm 35 by the way! I am a single mum to a 3 nearly 4 year old - I don't always get a chance to log on as it's a full time job looking after him. Hence the delay in responding to you!
Am I scared of the next operations - not really, I guess I just want all this to come to an end, so the sooner the better for operation number 2. I am seeing my surgeon at the end of April and going to try and commit him to a date when we can operate and build the pouch. I'm kind of hoping on July. Not looking forward to the operation itself as had a nightmare with the first one - my epidural only worked on one side so I had full feeling on my right hand side where they had operated and around the Stoma, etc. I'm not sure how I coped with the pain, it's all a bit of a blur but I'm here today to tell the tale! My only really worry is what if the j-pouch doesn't work? I try always to look on the positive side of everything, but I do worry about this as I've read so many bad reports. However, no-one really ever talks about the good things do they?
I wouldn't wish this situation on anybody, I can't imagine being 17 and having to deal with this. Yes it is a nightmare and I sympathise greatly. However, you are young and you should do well. I do hope things improve for you, keep in touch and if you want to ask anything, just mail me!
Take care Liam
Pentasa Suppository 1 each night
Predsol Suppository 1 each morning