Monday, March 17 2014
There have been many things I have had to do for the first time since having my stoma, and some are things I thought I wouldn't be able to do.
I had heard from other ostomy members in the past year that they can no longer go swimming as their bags just fall off.
So you can imagine hearing (well reading since it was online) just how humiliating it could be.
Here in Australia we are blessed with great temperatures all year round and some of the most beautiful beaches and swimming places in the world, especially here in Coffs Harbour.
So imagine my upset when I thought I would never be able to go swimming again in public or in company of family or friends.
The summer just passed would have to have been one of our hottest summers ever and boy did I feel so alone!
My husband and family would spend days/afternoons at the beach or would go and visit family who had pools and while everyone was having fun and enjoying themselves, I was sitting on the poolside faking a smile that I was enjoying watching everyone have fun.
But the truth was I wasn't. I felt so alone and so excluded that I decided I wouldn't go along to any family functions if they involved being at the beach/pool as I just felt like I didn't belong.
Although people were quick to judge and ask if the reason I wasn't swimming was because I was fat and embarrassed with some answering "well.. just fix it".
But I would just hold my head high and say something along the lines of "I can't swim with my ileostomy". No one ever asks why, thankfully it saved me embarrassingly having to say I was worried my bag would fall off and output would go everywhere. I know it sounds graphic and gross but thats how I feel sometimes.
Last week I went away for a few days with my husband and we stayed at the Nambucca River Tourist Park. We needed a break and the last holiday together was our honeymoon in 2011.. so it was well over due.
Being mid-week in middle of March there wasn't many people staying but more the pool wasn't crowded.
I decided I would give swimming with a stoma a try, since after all we were on holidays and the pool looked so refreshing.
I did the 'get into the swimsuit' dance and made sure my bag was tucked in securely and wondered on down to the pool.
I was so anxious and nervous that my bag would fall off and it would be a disaster but much to my surprise it wasn't!
I was swimming around in the pool for over an hour and just relaxing with my husband.
He commented that he hadn't seen me so happy and smiling and having a good time in forever, that he had forgotten what happy Talya looked like.
In that hour I totally forgot that I had a stoma and was enjoying the first time in 2 years that I had been swimming.
We went back to the villa we were staying in.
I was going to change my bag but as I was going swimming again tomorrow I decided not too as once it had tried it was basically intact!
In fact even 2 days after my first time swimming when I did do the bag change (knew I wasn't planning on doing more swimming as we were leaving the following morning) it was still an effort to get the bag off, that it had that much tack to it.
So I don't know why people were saying that their bags just fall off when they were swimming, and it certainly was a lesson learnt that I should always do things first and try myself before taking the word and advice off of someone else.
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.