I have made an entire blog by talking about things to know and understand in the world of ostomies. But if I had to sum up the most important pieces of advice I have for those living with an ostomy, it would come down to these three things: 1. Have a positive attitude, 2. Build a support system, 3. Learn by trial and error.
The first two are pretty self-explanatory. Staying positive and making the most of the situation is crucial. Let’s be honest, if you’re faced with getting an ostomy, you’ve been dealt a bad hand. And no matter what you do, you can’t change that. So you have a choice: accept what you’ve got and make the decision to continue to live a happy and fulfilling life or not accept it and be miserable. Either way, at the end of the day, you still have the same hand to play, so might as well make the most of it.
Having support around you makes a big difference, as well. For those of you who have family and friends close by who are positive and understanding, consider yourselves blessed. Don’t ever take them for granted. Even though they may not understand everything you go through, having them in your life will help you continue on when times are tough. But regardless of whether you have that support or not, it is also important to have support from others who do understand what you have gone through. Whether these are friends you meet in person at some sort of support group, or others you find through online blogs or groups, their input and support will be invaluable. For years, I didn’t reach out to anyone about living with Crohn’s disease, and I found out later how much I had been missing out on. All of my ostomy and IBD friends hold a very special place in my heart and I would not give up my relationships with them for anything!
And finally… trial and error. Oh my gosh, this is so important! We all have a different story. We’ve all dealt with different symptoms, taken different medications, been through different procedures, and had different surgeries. No two ostomies are alike.
My goal, here, has always been to tell my story in order to show that having an ostomy does not mean that you have to give up anything in this life. But my experience is not going to be your experience.
I wish I could tell you exactly what it’s going to be like for your after surgery and that you’ll be able to stay off all medication and not have any complications with your stoma. I wish I could tell you that if you use this product and do this or that to the skin around your stoma that you’ll be able to keep a bag on for 7 straight days and never have a leak. But there is no set formula. What works for me, may not work for you or for the next person.
There are so many factors that make a difference: Is your stoma protruding or flush with your skin? Is your output thick or liquidy? Does one ostomy bag stick better to your skin than another? Do you sweat a lot? Are there any creases in your stomach? Does paste work best or a barrier ring?
There is a lot of trial and error involved. I have tried so many different things. When I first had my surgery, I got tons of samples of bags from different companies and different options from within those companies. I’ve tried one-pieces and two-pieces. I’ve tried pastes and barrier rings and stoma powder and barrier wipes. I’ve tried eating at different times during the day. I’ve tried eating and drinking different things. I have tried several options in wraps and belts and other accessories. And you know what? It’s been close to three years now since I’ve had my surgery and I feel like I’m just finally figuring out everything that works best for me and getting myself into a set routine of emptying and changing the bag.
I’d love to say there’s a magic number, two or three years, that it takes to get into that sort of routine, but again… my story is not your story. I am always happy to share the things I have learned and little hacks that I have found along the way, but I hope that no one feels that I have steered you wrong simply because it didn’t work the same way for you.
So for new and long-time ostomates alike, don’t think I’m saying to not get advice from others who have been through this. Many of the things I have learned from others and what they have done has made my life a lot easier. But understand that it may not work the same for you and be willing to try new things. Don’t be discouraged if someone else’s “life-saving accessory” actually causes more trouble for you. Realize that your recovery from surgery may take longer than someone else you know. And while one person may be able to eat all of the raw veggies they want, another one may get a blockage every time they try.
One thing about living with chronic disease and with something like an ostomy is that you get to know your body really well. So listen to it. In fact… that might be my fourth piece of advice.
If you could give one piece of advice to other ostomates, what would it be?