I have always had a positive attitude regarding my stoma, it changed my life for the better, but that does not mean there have not been challenges along the way. Those challenges can go right back to the beginning when I first had my stoma surgery.
Whilst recovering from the ‘barbie butt’ surgery, which is a painful recovery and major surgery in itself, I was having to get used to having a stoma. This was made more complicated in the first few weeks of my stomas life, she’s called Sydney in case you didn’t know, because I was lying down whilst starting the recovery period! During those first couple of weeks I was pretty much bed bound. Whilst dealing with the recovery pain, I was attempting to change my colostomy bag whilst lying down. This was certainly a challenge and made more difficult because I also had a sealed vacuum pump all over my bottom area, so movement was not easy and painful! I can now lay down and change my colostomy bag with my eyes shut and it’s fine, but back then it was all so new and I was in pain. These are the challenges that are not really spoken about when you are discussing having stoma surgery.
In those early days, not only are you getting used to changing your colostomy bag but you are also presented with another challenge. Just when you are getting used to the stoma, it goes and changes size! You are just working out what size holes to cut in your bag and you are becoming familiar with that, then all of a sudden something doesn’t feel right, all of a sudden you start to feel a little uncomfortable, things feel a little wet on your skin, there is a faint aroma coming from your bag area that is not normally there, so you have a look and find you are leaking because you had not realised your stoma has changed size and got a little smaller and the bag has now leaked! Hahaha it happens! It’s all part of the journey though. I had to remind myself that everything was swollen and it would of course all settle down to a natural size and I wouldn’t need to cut the holes, I could eventually order pre-cut bags.
Yes those early days are certainly a challenge, as I mentioned it’s part of the journey and I embraced that. Once everything has settled down and the stoma settles to its natural size the next challenge I certainly faced was finding the right bag that suited me. There are so many different suppliers, there are so many different types and styles of bags, I could not believe how many different bags there were! Now I needed to find the right bag quite quickly as another challenge presented itself… ‘pancaking.’ Pancaking is a term used when the poo does not go down into the bag. The poo manages to fill the area under the base plate of the stoma bag, and then it squeezes out of the sides of the base plate, it gets flattened by the base plate hence the term ‘pancaking.’ This was happening to me regularly, and at times I certainly found it upsetting. My output is thick so it would not go down into the bag. I had to find a solution to this and fast! I spoke with my stoma team and we decided to try convex bags. My stoma does not protrude very far, so with using convex bags they push the stoma slightly further into the bag and this prevents pancaking. I had now found the right style bag for me! No more pancaking for me so that was that challenge overcome.
Whilst the pancaking problem was solved there is always the possibility of a bag leaking. I rarely get leaks, but it does happen. I have always found the leaks happen at the worst possible time, just like if your car breaks down it will always be at a junction or on a roundabout! I have found it no different with a leak, it has almost always happened when I am out or at a party with friends or family! On a couple of occasions I have had to go home as I did not have a change of clothes with me or worse still I had forgotten to take supplies! But like I say I rarely have leaks now. To prevent leaks I ensure I have the right bags, so it is really important to find the bag that works for you. You do not need to put up with leaking or pancaking, there will be the right bag out there for you. Respond have a fantastic range and there will be the right one for you. You can also get extra adhesives to apply to the bag, and there are also bag extenders that help increase the size of the baseplate to make it more secure. Overall I do not worry about leaks. Yes they can and will happen from time to time but they can certainly be minimised. In the last twelve months I would say I have only had two leaks. I now always keep some supplies in my car, so this reduces any stress or worry about leaks as I know I have provisions with me.
If I go out for the day I will take supplies with me, I do not take loads and it will all fit in a small bag or rucksack. People do ask me if there are any challenges with going out for the day, mostly the answer is no. I don’t think about my stoma when I am out until I can feel the bag needs changing. Probably the biggest challenge is finding a clean, suitable place to change the bag. So many public toilets are not clean and the disabled toilets are often locked. I carry a ‘radar’ key which unlocks the majority of disabled toilets, but even then some of the disabled toilets are not clean and there is no shelf to put your supplies on. There have been many occasions where I have changed my bag at the back of my car with the boot open so people cannot see me, I can then use the boot to lay my supplies out. I would much rather do this than use a dirty public toilet.
Using disabled toilets can certainly throw up an unwanted challenge, there have been numerous times when I have walked out of a disabled toilet to find someone waiting to use it. They see a man walk out with no obvious disability, they see a man that looks perfectly fit and well, what they do not see is what is underneath. So many times I have been verbally abused by people waiting to use the toilet, I have been sworn and shouted at. They do not think I should be using the disabled toilet. It used to upset me, but it does not anymore, I just smile and walk away not letting their ignorance affect me.
As I said at the beginning, I embraced my stoma, and for me the majority of the challenges were in the early days. I never really see my stoma as a challenge anymore. I will tell you all about the positive way my stoma has helped me, but you will have to wait for that in an upcoming blog, so look out for that one!
I enjoyed typing and thinking about this blog and it made me laugh many times when I think back about the early days of pancaking and leaks. I hope you enjoyed it too!
Kind regards,
