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Stephanie Hughes family The Stolen Colon ostomy bag blog breaking down the ostomy barrier

3 tips to prepare you for ostomy surgery

Regardless of whether you have been talking about surgery for a long time, putting it off for just as long, or it may have just recently come up, but there comes a time where you know it’s inevitable. At least that’s how it was for me. I went through weeks and months of hoping for another option, but ultimately, I knew what I had to do. (You can look back at some of my very early posts to hear a little more about it.) But once I officially knew it was happening and had about 2 weeks until the surgery, I didn’t really know what to do during that time. Having been through it now and looking back, these are the things that helped me prepare before surgery or that I did after surgery and wish I had done sooner.

Find someone to talk to.

So so important! I can’t tell you what a difference it made just talking to someone else who had been through the surgery. I was blessed to be connected with a friend-of-a-friend…of-a-friend… who had an ostomy and had gone through surgery at about the same age that I was. (You can read about my initial meeting with her.) She had lived with it for a while, had kids, and done many other things that I had hoped to be able to do. It was so comforting to hear from her and to see that she did not look any different from any other person.
There are UOAA groups that help to connect individuals who live in the same area and you can also speak with the nurses who are helping you prepare for surgery about trying to find another person to speak with about living with an ostomy. However, not everyone is able to get connected in person with someone else in a similar position face-to-face, but there are many great options for talking to people online. I do, however, advise caution in looking online, because while there are great positive resources out there, there can also be a lot of negative ones, as well. And if you need someone, I always try to be that person to others whenever I can.

Order supplies.

If you know surgery is coming, order some supplies now! All of the major ostomy suppliers have programs where you can sign up to receive free samples of their products. (Links to their request pages: Hollister, Coloplast, ConvaTec) This was great for a number of reasons. First of all, I have said before that everyone is different and the supplies that work for me may not work for you, and vice versa. I think it’s best to try out the many different options and figure out what fits best into your life and what feels the most comfortable. Plus, each of the samples came with a kit and a lot of good information. The companies followed up with me to answer questions and send additional supplies, when needed. When I came home from the hospital, I had a very large, transparent bag on and I felt so uncomfortable. Once I switched it out for an opaque bag I felt much more confident. It was a little change, but it made a big difference and I was so glad that I had the option once I got home. Finally, getting the supplies will last you for several weeks after surgery, so it’s nice to not have to place a large order right away.

Break the tension.

I was terrified before my surgery. I was hopeful, because I had to be since I had run out of other options, but I was still terrified. I booked my surgery for as quickly as possible because I was afraid I wouldn’t go through with it if I thought about it for longer. (I even asked my surgeon how much of a heads up would be appropriate if I changed my mind! I assured him I wouldn’t, but it made me feel better to know that I could.) But the night before my surgery, I was laying in bed with my husband and looking for ideas for what to wear under my clothes with the ostomy. Thankfully today there are some really great and sexy underwear options out there, but a few years back, that was not really the case. I found some really hideous options and I showed them to my husband and we started laughing hysterically. It was one of those moments where if you don’t laugh, you’ll cry, and I really needed to not cry. I realized that I had to break the tension and not focus on everything I was afraid of happening. I encourage you to try to find something like that to help you get through those difficult times.
Going through surgery is not easy, no matter what situation you are in or what your health is like prior. But hopefully, these tips can help you to prepare the best that you can. I know there are things that others have done that can help, too. What is something that helped you prepare for surgery? Or that you wish you had done beforehand?
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4 Comments

  • Reply Danny Reich

    What helped me prepare was the positive attitude that I’ll wake up and feel a whole lot better. No longer would my wife have to lift the packages or empty the car, or walk the long walk of hospital corridors in the middle of the night, The other side of surgery gives you your life back with no limitations. I’ve scuba dived on the Great Barrier Reef and ran a 1/2 Ironman in Miami. No days lost to bleeding, pain, stomach upset.

    May 31, 2018 at 7:31 am
  • Reply Carol Bone

    I also had a positive attitude going into the surgery (ileostomy). I felt that I had tried all avenues before surgery and was at the correct decision. My husband and son went with me to my pre-surgery appointments and asked questions that I didn’t think of. They were very supportive. I woke up from surgery happy to be starting a new life after years of severe colitis which limited everything I did. I walked as much as I could while in the hospital. I went back to work wIthin 6 weeks and started golfing right after that. I ride a bike and work out at the gym. I am 71 and am happy to have a normal life now. I wish I had known to talk to someone before surgery about preventing hernias and weight gain so that I had control of that immediately after surgery.

    May 31, 2018 at 8:34 am
  • Reply David NYC

    I wouldn’t sweat the supplies. If you’re going to a reasonably large hospital, the nurses (or hospitalists) there will send you home with some supplies. In my case (albeit in New York City) the hospitalist called the supply company of my choice and ordered them for me.
    Ostomy nurses know that this is new to you. They’ll help with the supplies. That’s not something you need to confront right away.
    Good luck. I’ve had an ileostomy for 38 years. I’ve taught five, sometimes six, days a week, traveled (Russia, Switzerland, Italy, UK, Greece) and gardened. It’s all possible. The ostomy is a minor inconvenience compared with the horrors of bowel disease. Good luck!

    May 31, 2018 at 9:44 am
  • Reply Steve

    I’ve followed your posts for some time. Happy for you and the challenges you faced head on. Many people will thank you for being a wonderful advocate and inspiration for what is possible with health and happiness.
    I am the point of lesser options after 30 plus years of the diseases. I am considering hospice now but I have had a good life considering what I have been through. Take care of your self and be as healthy as you can. Steve

    June 1, 2018 at 12:32 am
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