If you like to read, I’ll expand more below. But in a nutshell, here are the key points to caregiving for someone from before surgery to after. The two types of support you might offer are physical and emotional.
There are different kinds of support you can offer to someone who’s just gotten an ostomy and it mostly depends on the relationship you have with them. Family or close friends find themselves offering physical assistance, emotional support, and encouragement, sometimes even before the surgery has happened.
It’s really helpful for you, as a family member or friend of someone with an ostomy, to learn about their ostomy. The good news is, you can learn a lot from reading the other pages on this website. Learn what kind of surgery they are having and what kind of ostomy they have/will have.
If you’re a close friend or family member who is going to be providing some physical assistance for the new ostomate, try to be at the hospital when the stoma nurse comes in to show them how to change their appliance/bag. While it’s really important for an ostomate to learn how to take care of their ostomy, having a second set of eyes and ears when everything is being explained can come in pretty handy later on. In the hospital, they’re probably pretty drugged up on pain medication so remembering all the steps to taking care of their ostomy can be really overwhelming and scary. If you think of questions about the ostomy or ostomy care process, write them down so you can remember to ask the doctors when they come by.
An overview of the physical aspect to healing from surgery that results in an ostomy:
Today, a lot of abdominal surgery is done laparoscopically (just a few small incisions in the abdomen and “robotic” instruments with video cameras that go in those incisions to perform the surgery). The laparoscopic surgeries are supposed to hasten recovery, but it’s still a pretty intensive surgery. It’s important to remember that the new ostomate has just had their abdominal muscles cut through, nerves moved, and body parts moved (and removed!) – naturally, it takes time to heal from that kind of stuff, regardless of the size of the scar(s). Though the surgeon might project a recovery time of about 8 weeks, that’s just for when the patient might start to feel more up to getting back into the swing of things with work and life. It takes about a year for the body to really adapt to the changes that were made.
Driving is off limits until the pain meds are gone and they feel like they can slam on the their brakes without hurting or straining themselves. Your friend or family member who’s recovering from surgery might really appreciate you cooking for them, doing their laundry, driving them around, and helping them change their bag. It doesn’t last forever though, and it’s important to continue to encourage them to try to accomplish these tasks on their own or with your help, little by little as you see their strength and energy returning.
Encourage them to walk, even though it hurts and is much easier to just lay in bed. Get them out walking, start with short walks and gradually increase the length (and go with them, of course). This will help build their confidence as well as their strength…two things they need to build!
Speaking of encouragement…
Emotionally, finding oneself without a colon/with an ostomy can be very scary. Having an ostomy and learning to care for your ostomy is a really steep learning curve and can be really overwhelming. Everyone copes differently, so ask them how they cope with difficult situations. Help encourage them to practice positive coping skills. Common coping techniques include prayer, meditation, humor, talking, relaxation, and walking.
Many people experience a loss of self-esteem and confidence. Some people become really self-conscious, they don’t have a clue what to wear, they hurt, and on top of all these new experiences they’re having, they’ve got a ton of emotions to work through. Encourage them to resume normal activities and do things with them that you both enjoy, like watching movies, shopping, playing games, or just talking. Showing them they can do things they did before surgery (and stuff they didn’t do too!) will help re-build their self-esteem and confidence.
Be encouraging to them and help them find the positive in their situation if they’re struggling. Be patient and understanding. You may not know what they’re going through, or know how to make it better, but I bet they’ll appreciate having someone to vent to and share their concerns with. Encourage them to join a support group, either online (facebook has a lot of ostomy-related groups) or see if there’s a local UOAA group.
Let them know it’s okay to be sad. It’s okay to be scared. It’s okay to be frustrated and upset. Emotions are natural. You’re there to support them while they work through their emotions. If you feel like they’re having a really rough time with the adjustment, a therapist who specializes in grief/loss and depression might be a good avenue for them.
Be prepared for post-surgery medical emergencies and complications (though I hope you don’t run into them). Know who to call if you suspect something is wrong. We kept a list of phone numbers for the hospital, surgery team, ostomy nurse, and home health nurse handy.
Post surgery, be prepared to monitor their meds, help them change their appliance if they want/need, remind them to stay hydrated and keep foods that will be healthy for them handy. You can see a list of foods that are ostomy-friendly on the food tab of this website.
Teenagers want to be like all of their friends, and it’s hard to be like all of your friends if you’re the only one with a pouch on your abdomen. This can be hard to deal with for both the teen and their parents. Get help for them, get help for yourself, seek advice, and stay positive! Show them that having an ostomy isn’t a bad thing by offering love and acceptance.
On a positive note..as hard as it may be to believe, they will start to feel “normal” again. They’ll be able to live normal, active lives. Their ostomy will only stop them from things if they let it. Love is possible. Active lifestyles are possible. The sky is the limit!
One way to help your minor stay positive is to help them meet people going through a similar situation. Youth Rally is a wonderful camp that does just that. It’s for kids and teens who have bowel and bladder conditions and it’s staffed by volunteer counselors who also have bowel and bladder conditions as well as RNs.
Maybe you aren’t with your friend every hour after surgery, but you’re a close friend who’s scared and worried about them. They’ve just had a pretty intensive surgery, after all. Be there to listen to your friend. If you accept their ostomy, it will help them accept it too. Visit them in the hospital if they’ll let you. Visit them at home during recovery if they’ll let you. Be supportive and check in every couple days. Try not to forget about them once they’re home from the hospital; recovery goes on for weeks after the actual surgery.
Talk to them about what’s going on in your life. Sometimes hearing about other people’s problems can help your friend escape what they’re going through (momentarily). Talk to them about current events or any other topics you both enjoy talking about. If they want to talk about their ostomy, let them, but try not to let them talk negatively about it.
Offer to bring them food or take them to a store, see if they need any errands run or help around the house. Your support, no matter how little, will be appreciated.