Friday, March 07 2014
I know when I first had my stoma and for the first 6 weeks I had nothing but non stop leaks. Leaks are caused when the bag doesn't have a good seal.
I was exhausted. I was fed up. I hated my stoma.
I was told constantly that it wouldn't always be like this, that it was a 'working progress of trial and error' to find the right appliances to work without a leak.
I was having my bag changed every hour or so and my skin was so irritated!
I remember the first week I was discharged I literally just sat in the bathroom crying constantly as I was over it. No matter what I tried to do nothing was working.
I was getting no sleep as my bag kept leaking and I couldn't see anything working.
Over the first 6 weeks I worked with my stoma nurses (I had 3 at the time at two different hospitals) to try and work out how to stop the leaks, and I was going through appliances like there was an endless supply.
On the 6th week I went back in and said I didn't know what else to do to stop the leak, and then we realised what was happening.
A week after my surgery was when the leaks started and we realised that because I had lost weight and the swelling had started going down my stoma was now in a different position than when it was first sited (where the stoma was to be placed).
So where my stoma was, was now right near my scar (which had staples until week 6) and was where my waistline was, so my skin was uneven and wasn't providing a surface to stick to properly.
We found that coloplast had a range of bags used and targeted towards people with hernias called the sensura range.
We ordered some samples and tried these along with the mouldable ring, banana wafers and stoma adhesive and found that finally the bags stick (really have to reinforce with the banana wafers though).
It was such a relief when it was almost a whole day without a leak, then it was a couple of days and I can happily say that in the 9 months I have only had one leak (which was because my bag was full overnight and when pressure was applied....).
I am so happy with how well my bags stick that I can get 7-10 days out of the wafer (which is great since my skin is sensitive). Even when it gets wet it is so hard to take off, and I have so much more confidence!
I really wish I had of listened more when everyone kept saying that it wouldn't be leaking forever it would hae made me feel more hopeful.
But if you are experiencing constant leaks with your stoma I honestly suggest working with your stoma nurse to find the right method and solution for your stoma and skin, because just like a key is made to fit a lock perfectly there is a range of bags that is suited to your stoma.