I’m going to need a what?! Hearing that you need an ostomy for the first time can be shocking. In fact, many people given the option of an ostomy choose to suffer for quite a while before even being willing to let their doctor explain it further. Once the initial shock wears off and you decide going through with the surgery is just something you’ve got to do, you can start thinking about how to prepare for the surgery. You likely have a laundry list of things to get done beforehand from getting time off at work to making sure you have help lined up for your recovery to getting your home in order and seeing your friends. It can be pretty overwhelming!

Take a deep breath. You’re going to get everything on your checklist done.

If you can, try to eat well and exercise in the time leading up to your surgery, ensuring you’re in the best possible health. Going in stronger makes for an easier recovery. If there’s no way you can exercise (ie. you have IBD and are in a huge flare), don’t worry, you’ll be fine too.

Another suggestion is to see if there’s a support group in your area that you can attend before your surgery. There’s just something about going into a room full of people with ostomies that is comforting – they all made it through surgery and they’re sitting there looking like they could be meeting to plan the next neighborhood food drive. Sometimes it’s fun at those meetings to try to pick who you think has an ostomy, since some people bring their caregivers or friends for support – I’ll admit, I’ve picked wrong!

If you can’t make it to an in-person support group, join a facebook group or forum or email someone who writes an ostomy blog and say “hey! I’m having surgery, what are your tips for getting ready?” or ask about tips for after, or just introduce yourself and let them know you’re having surgery. It’s incredible what nice, supportive virtual communities exist.

Before your surgery, you’ll probably meet with an ostomy nurse and get “marked” for your ostomy location. This marking let’s the surgeon know where the ideal location of your ostomy is going to be. Having this marking is great and can help avoid having your ostomy put in a place that just really doesn’t make sense. When the surgeon has you on the table, they don’t have a great idea of where your body contours are, how your abdomen might hang, or if you have any dips in your abdomen. The ostomy nurse takes a lot of factors into consideration when figuring out where to mark you, including where your rectus abdominus muscle is (you want your ostomy to come through this muscle), the shape of your abdomen, where your pants sit, and more. In emergency surgery you often don’t get the chance to be marked and your surgeon will do their best to find a place that will work for you as well as for them.

If you’re lucky enough to have avoided a hospital stay up until now, here are some suggestions for things to pack and have your support system bring you at the hospital. You can bring them when you go in initially, but they’ll be moved to all the different places you go and you might not want to risk having your stuff lost.

When it’s finally time to have your surgery, once they give you the anesthesia I dare you to count down from 10 and tell me how far you get. I don’t remember getting to 9. The next thing you’ll know, you’ll be in the recovery room. Your throat might hurt a little because they put a tube down it during surgery. Sometimes the nurses are nice and give you ice chips if you ask. After being in recovery for a bit, they transfer you to your room where you’ll hang out until your doctor releases you. Ask your doctor how long they expect you to be there. Mine told me about a week and kept me a full 7 days after the operation.

You’ll probably be on a clear liquid diet for a day or two while your body comes back to life and then they’ll graduate you to the next post-op diet of easily digestible foods and so on. The nurses will likely encourage you to get up and try walking either that evening or the morning following your surgery. You don’t have to go far, but do at least let them help you stand up. It will hurt and be awkward and you’ll probably need their help, but it’s really important! Walking frequently post op can prevent you from getting a blood clot in your leg so go slow, but do it!

Use visual reminders to stay positive. While I was in the hospital I drew encouraging words and quotes for myself with crayon and hung them up where I could see them all the time. I wrote words like “Relax”, “Smooth Surgery”, “Patience”, “Positivity is everything”, “Smile, it’s more fun”, and other encouraging statements as they came to mind. Looking at these multiple times a day was really encouraging for me; so encouraging in fact, that I hung them up in my room when I got home from the hospital for continued reinforcement.

You’ll probably be visited by a stoma nurse to show you how to change your ostomy pouch and take a look at your stoma – if possible, have them come when you have someone else in the room with you. Your memory may be groggy and this is important information that you’ll use for as long as you’ll have your ostomy. If you don’t catch it all, you’ll have other opportunities to learn, so don’t stress too much if you don’t have someone else to listen with you. Usually the doctors want your ostomy to start working before they let you go home but your doctor may have other requirements too.

Ask for a home health nurse to come help you change your ostomy pouch at home until you feel comfortable changing it on your own. Request a nurse with ostomy experience and if you are not comfortable with the nurse they send, call the company and ask for a different one. Be your own advocate!

I strongly encourage you to attempt to change your ostomy pouch on your own and use the nurse more as moral support and verbal instruction rather than letting them change it for you. This is a life skill you’ll need for as long as you have your ostomy so the sooner you learn it, the better off you are. Of course, there are some instances where you may not be physically able to change your ostomy pouch immediately after surgery. It would also be recommended that you have a caregiver, family member, or friend learn to change your ostomy pouch for you too, just in case you have a leak and need help when the nurse is not available.  Remember to lean on the online support groups while you’re healing and ask them all the questions you can think of.