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Fortunately, most people will never have to even think about what it is like to have to wear a “bag” (of shhhh – you know what) hanging off their abdomen. And, even though I had Ulcerative Colitis for over twenty years, I never thought I would have to wear one either! It was only mentioned once to me, by a consultant who was trying to get through my ‘denial’ that I had a serious condition. (I do denial extremely well!)
But, when it happens, the Colostomy/ Ileostomy bag becomes the most important thing in your life!
I went into hospital to have one of the most major surgical procedures a human being can have and instead of being concerned about getting through it, i.e. coming out alive and well, my only thoughts were, how was I going to live with the “bag” afterwards. I had a six-month lead time up to my surgery; I went to see a Cognitive Behaviour Therapist, I met with people who had had bowel surgery, I searched the internet, I drove myself mad coming to terms with the fact that I was going to have to wear a “bag”, and I did not think about how I was going to recover from the surgery. This shows the affect it had on me. However, good news, the perception of having to wear a “bag” was, in many ways, worse than the reality.
That is not to say that it is easy living with a bag! I have an Ileostomy, which, in my case, has to be emptied between 7 and 10 times a day. A Colostomy bag has to be emptied 2-3 times a day. The biggest difficulty, by far, is the fear that the bag will leak; and it inevitably will. This is dreadful when it happens in your own home, but it is devastating when it happens in a public place.
You have to carry a spare bag with you at all times in anticipation of the bag leaking! It can have a devastating effect on people’s lives; some people will not leave their homes at all, some will not stay in other people’s homes or in hotels for fear of the bag leaking and soiling bed sheets, some people will bring their own bed linen or plastic sheets when visiting cannot be avoided. Using toilets in their workplace or in other situations can be another major problem for people. It can be very debilitating!
Following surgery, your Stoma Nurse will have fitted a bag to you, and you may continue to use that type of bag or you may choose to change to a different type when you have recovered. There is a huge variety of stoma pouches available on the market. Each manufacturer has their own ‘take’ on what is best for the ostomate and offer a variety of sizes, shapes and features. The only way to find the right one for you is to get samples, which they supply free, from the different companies and try them. However, apart from size, shape etc., there are two distinctly different types; a one-piece and a two-piece. The one-piece version is a complete system with bag and adhesive flange permanently attached that you simply stick to your abdomen over your stoma.
The two-piece version is where the adhesive flange and the bag are separate. This means you can change the bag part without removing the adhesive part from your skin every time you have to change the bag. The advantages of this system are; a) if you have sensitive skin you don’t have to remove the adhesive section every time you have to change the bag, b) you can throw away the ‘full’ bag and simply replace it with a clean one. The other main differences between the bags are; some are drainable and others are permanently closed. The drainable versions have a sealable system to allow the person to open it and then reseal it when empty. The closed version, normally used with the two-piece system, cannot be emptied and is disposed of when full. The Urostomy bag is similar to the Colostomy and Ileostomy bags, but has a tap at the bottom that allows it to be emptied and also allows it to be attached to a night drainage bag.
There are a lot of large companies that make Colostomy and Ileostomy bags. They are all made to a very high standard; they are well designed, the materials are thoroughly tested for strength and endurance, a lot of technology goes into their construction and a lot of research goes into the affect it will have on skin care, but, at the end of the day, it is simply stuck to your skin with a temporary adhesive, and, it will come loose!
When I first came up with the concept for STOMAPROTECTOR I simply wanted a device to allow me to wear my normal clothes when I returned to work. However, the lengthy design process threw up several unexpected advantages. There were many of these (as you will have seen on the website) but the best of them was; after wearing the device for a period of time I noticed the bag was really stuck to my skin. The constant pressure on the adhesive flange had created a much better seal onto my abdomen. Prior to wearing STOMAPROTECTOR, because of the constant fear of leaks, I was changing my bag nearly every day to ensure it had a good seal. I now change my bag only every 5/6 days. The confidence it has given me is fantastic; my commute to work is a 20min drive, a 60/70min train journey and then a 30min walk. I could not do this without fear if I was not wearing STOMAPROTECTOR. I also wear it while playing golf, gardening, and any other physical activity, and I don’t worry about leaks anymore. I have not had a single leak since I started wearing it regularly.
I hope you found this information helpful and good luck with living with your stoma.