Sink or swim
Finding perfection in the ostomy bag world, that prefect set up at the end of the ostomy rainbow.
Upon waking from my first operation, I was gifted the site of two strange bags attached to my body.
What the hell are those I thought to myself in my semi-conscious state, all was going to explained, I guess. At first, I wasn’t having anything to do with them nor was I bothered about what they were doing there as I had other things to worry about like ‘what the hell is going on’.
As the next few days passed by it was explained to me what had happened to me, at this point you can either SINK OR SWIM and get out of this thankfully I chose to swim but still to this day I have the odd few days were MIND OVER MATTER is challenged.
After about 2 weeks the stoma nurses said that I needed to manage this myself, but as the bags were clear this wasn’t in my plan of life skills but guess it was going to be. The first couple of weeks were challenging because of leaks, bags coming off (1-piece system), not being very active and of course the smell. But as time went on, I slowly became ok with the bag change and sorting out a routine, got to be honest I thought the mucus fistula bag was worse than the ileostomy in regarding the smell. I remember having to empty my bag contents into a cardboard type pot and calling the poor nurses over who then had the task of emptying and measuring the output from this small mobile cesspit, I guess it was part of their job. No questions asked just to come and collected it and disposed of.
I eventually started to get out of my sleeping chariot and made it to the chair from which I could start to plan how I was going to change the ostomy bags myself (goal 1), luckily the mucus fistula output slowed so didn’t have to change as much, phew!!!! This had to be done as I wasn’t going to be released until I could do it. (goal 2) I achieved this and was released about 6 weeks after my operation. Still using the clear 1-piece system also.
I return to the hospital after a week to check my progress and to see if everything was ok and I was coping ok. I asked then and was agreed that I could change to a covered non see through bag, the stoma nurses seemed to be happy with my ileostomy and how I was dealing with system I was given. I did see couple of other bags, Although I was having a leak here and there and skin issues, but this is what I kept. (1-piece drainable pouch). As I was having a reversal within 12 -16 weeks and depending on my recovery the bag would be no more. At this point I wasn’t aware of any other products that I could have tried apart from the discussed ones with the stoma nurse.
Ohhh Little did I know!!!!!!
2nd op day. 27th September 2017
So, it was 6am I was collecting all my things I needed for my reversal surgery which I was in quite an upbeat mood about and off we went. I arrived at the hospital booked in and then went through the paperwork as you do to check this and that. I was then informed that my surgery had been delayed due to the complications of the persons surgery before me. It was about 11:30 the I had my marching orders I said my goodbyes to my lovely and off I went. After going through the surgery (another story) I finally had my reversal done but wait NO!!!! due to unforeseen complications during my surgery (another story) I was replumbed and given a looped ileostomy. After about 4 days I was taken from ICU to ward 7, when back on the ward I noticed that the mucus fistula was gone but I still had an ileostomy which was explained to me why. I had another bag on clear on which is standard practice after surgery so the stoma can be viewed without the bag removal. I eventually started using a 2-piece system which in fact I still use to this day.
I find the 2-piece system fantastic it allows me to change my bag more frequently without removing the base plate and causing undue skin issues. I have had no issues with leaks and soreness unless I’ve been stupid and not kept to my routine.
As the days went on, I started to look at different products that are available so started to contact the supply companies to see if I was able to try any samples!!! This is where things started to get interesting, I asked for samples and all these questions started to arise, was i convex, did I want flat drainable or non-drainable, one piece two piece, my ostomy world had just opened up, I was so being asked if I wanted to try this try that, I was like a ostomate in a ostomy suppliers Christmas shop so before I went ahead with a choice I thought it would be best to go back to the stoma team as find out to which I could and couldn’t use.
I eventually got to speak to them and arranged a meeting to nail down what I could or couldn’t use. They sent my home with a few samples and of course I called up the companies and got more samples from them. So, I went about trailing different things from different size bags, different types of 2-piece systems, some stick together and some clip together. They are all great and individual to each company but ultimately, they must work with me. I was finding each time I trailed a different system I was getting issues from sores and rashes on my skin, to bags leaking not staying on or just not fitting correctly, so back to the original 2-piece I would go. To be honest I’m not sure as to why the leaks as it was the same place for every plate, I used apart from the dansac 2 piece I was using, I don’t have any dips or creases in my skin no bumps anything to explain why. I investigated the possibility of washing powder change my own personal cleaning products but nothing, I didn’t realize that changing ostomy products could cause some many problems,
I always though went back to the 2-piece. Was this the sign not to change (if it’s not broke don’t try and fix it)!!!
Over the last 2 years I have tried various different products but ultimately I also ways come back to the same plate and bag, I don’t have any leaks or skin issues so I don’t know why I keep wanting to try different item, nature of the human being I guess.
All I can say is when you find that perfect set up system which ever it maybe try and stick with it unless it needs to be changed medically.