Connect with people
This for me is most important. Connecting with other ostomates is what got me through the first few months of ostomy life. I already had a son who’s ostomy I had been managing for 5 years. Despite this, I found having one myself completely different. When I woke from surgery I was almost repulsed by my stoma. That may sound extreme and believe me when I say I am not averse to stomas, they save lives and I asked for stoma surgery. Yet my initial reaction was to be horrified. Our brains are not used to seeing our internal organs on the outside of our bodies, and there’s me thinking I'd boss it and be completely fine. I was completely wrong! But you know what, that’s ok. I went with it and got used to it and by a few weeks I was absolutely fine. It was chatting to new found friends through my instagram account @gutsy.mum that got me through those few weeks, sending photos and voice notes with my random concerns. There was no judgement, just support and what felt like the biggest virtual hug. I will be forever grateful.
Wear a bag for the day
You may be feeling very anxious about what it will feel like to have a bag on, how it will fit in your clothes and what it will feel like when it fills up. Now you can’t have a dummy run on all of that but you can certainly order samples from an ostomy supply company to try wearing one to see how it feels. Some companies even send you guidance in paper form with a fake stoma leading up to surgery (actioned by your stoma nurse) for you to put on your tummy, with a solution to add into the sample bag for you to wear to get a sense of the weight and what it feels like. It is important to remember that until the day you won’t know exactly where your stoma will be formed as this is done on the day by your stoma nurse before going to theatre. Even then this may change if your anatomy doesn’t accommodate the desired positioning when the surgeon has you on the table. Be open to it being on either side of your tummy and just use these ideas as an experiment to ease you in.
Eating following stoma surgery can be quite daunting. It is so different between two ostomates as to what one person can tolerate compared to the other. The general advice is to stay away from high fibrous foods, grains and foods with skins on. These can be difficult to pass through and even swell causing blockages. Think of it as a pipe that is oddly shaped and struggling to force such foods through. It gets to the end - the stoma - and bursts through when it can creating such force it creates a leak in the base of your stoma appliance. For me I have to stay away from certain vegetables and foods with skins on. Nevertheless, I do have a few ostomate friends that can eat everything and anything! I would be lying if I said I didn’t have food envy, but I would much rather miss certain foods than have problems with my bag. Take the small wins! Check out the link below for guidance on eating created by Colostomy UK.
Write a list of questions - rid yourself of the fear
Lots of questions will pop in your head, some big important ones such as how your diet will change, being able to exercise and how to change your bag. Small questions will also be floating about concerning things like how to sit on the toilet if at all when emptying your bag. Any questions big or small are important and shouldn’t be kept in as this can create anxiety and worry unnecessarily. I kept an A5 book just for my stoma surgery and leading up to it, any question or worry I had went into it. I made sure I took it with me to all my appointments. I wrote the answers and more advice in it and it became my go to guide.
The skin around your stoma site is called the peristomal skin. It is going to have quite the shock as your stoma starts to function with stool getting onto your skin before the need to change your bag a high possibility. You will then need to start to find the right bag for you as you heal if the one you were given at first isn't quite right. Everyone is different. Your stoma nurse will recommend which products to use to support peristomal skin health. This may take the form of a barrier wipe, spray, cream or even calamine lotion. This may change according to what your stoma nurse sees gets the best results and what your skin reacts well too. It takes a few tries before you find the right product for you. Be patient. It's not a race, it's a marathon.
The monthly deliveries of ostomy supplies will need somewhere to go. You want to make sure you are organised and you can get to supplies quickly, and store them in a way that you can keep a check on amounts in case you need to ask for more than you anticipated. For me, with two ostomates in the house I bought a 3 tier craft trolley and used that in the bathroom with supplies for a week, all set up ready to go. Some people prefer their supplies not to be on show and go for a closed box or drawers to store it in. Find what works for you and what you want on show.
Until next time, Rach x
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