Post-Ostomy Self-Care
By Lisa Febre
I awoke from surgery probably like all new ostomates: confused, frightened, angry, overwhelmed, sad, and a little grossed out. A cancer diagnosis and a colostomy were more than I could handle for one morning. It's a lot to take in, and I wasn’t ready to face any of it.
Until I had my colostomy, I did not know what this was. Sometimes I would hear vague references on a tv show to “a bag,” but no proper descriptions or explanations. Now, I had a bag with no idea what it was or what to do with it. Afraid to look at it, I thought I might see something so gross it would prevent me from taking care of myself. Would I need to rely on someone else to take care of me from now on? Did all my independence just go out the window with one surgery?
Though knowledgeable and well-meaning, the ostomy nurse at the hospital left me feeling overwhelmed. The information she was sharing came at breakneck speed. Words like “flange,” “wafer,” “stoma,” “output,” and “pouching system” were being thrown around as if I already knew what they were. Demonstrations of things like ostomy powders and barrier tape only confused me more. All I remembered from the half-hour spent with the ostomy nurse was how to measure my stoma and how to cut the barrier to size.
The ostomy nurse had a lot of information to cover in a short period, and she thought all of it was important. The point was not lost on me that she did not have an ostomy, so what she thought was important actually wasn't. Taking care of my new ostomy, while recovering from major surgery, needn't have been so stressful. Afraid of failing, I was certain that I was going to make terrible mistakes. I doubted my ability to do any of this.
Amidst my stress over the new colostomy, I was also recovering from major abdominal surgery. A colectomy is devastating to the body. In my case, I had a large vertical incision that needed care, along with the sutures around my new stoma. Five days post-op, I was still easing into my post-op life with a soft-solids diet, gradually introducing new foods according to the guidelines my surgeon and nutritionist had set for me. Exhausted, sore, depressed, and worried about the future, I had a lot on my plate.
YouTube to the rescue. Hollister has several “how-to” videos for their products, which are straightforward and helpful. I spoke with a sales representative from Hollister a few days after I got home, and he gave me the best advice: “keep it simple until you get the hang of it. Then you can try the fancy stuff.” His explanations were simpler and this time, he instilled me with confidence. He took the time to answer my questions and used language that made it clear to me that this wasn’t rocket science. Don't be afraid to make phone calls to the ostomy supply companies like Comfort Medical (who I used). Their customer service people can be the most helpful people you'll encounter with your ostomy.
Get to know the parts of your pouching system (see below). Hospitals will send you home with a particular brand, so begin there. In my case, they gave me Hollister products. I had a 2-piece, filtered, drainable system with a flat barrier. I decided to stick with what the surgeon had stuck on me, copying that for a few weeks. Thankfully, it can take up to a week after surgery for the gut to work again, so I had time to get to know the appliance before having to deal with output.
Caring for the colectomy and ostomy incisions was no different from other surgeries. Just follow the hospital's discharge instructions, which usually involve keeping the sutures dry when bathing (there are excellent waterproof dressings readily available online and at your pharmacy). Trim your barrier adhesive patch to avoid your midline incision until it is fully healed. Even though the sutures around your stoma are being exposed to output, don’t panic. Gently wash the area with mild soap and water with each appliance change.
Activity Limits
Your surgeon will give you important instructions regarding activity limits, not lifting over 5 pounds for several weeks, and they will tell you to walk as much as possible. This aids in jumpstarting your digestion again, so walk every day! Always follow your doctor’s instructions: many people are at high risk for parastomal hernia. Your surgeon will tailor your lifting and activity limits to your needs, and it is in your best interest to follow those instructions diligently.
Keep it Simple
Easy does it as you adjust to your new ostomy. Don’t burden yourself by wondering about all the extra items floating around in the “Starter Kit.” When people in your support group talk about tricks and tips, don't worry, you'll soon reach a point when you're the one giving the advice. It’s overwhelming in the beginning, but you'll understand these sorts of things after you recover and feel confident about caring for your ostomy. For a month after surgery, I only dealt with the wafer/barrier and bag. Simplicity helped me feel confident.
Stoma Size
After surgery, your stoma will be inflamed. As it heals, it will continue to change for the next 8-12 weeks before settling into its permanent size. Each time you change your barrier, use the stoma template that comes with your supplies. And don’t worry if your stoma bleeds a little – this is completely normal and should stop quickly. If the bleeding is heavy, it won’t stop, or you know for a fact you cut your stoma on a sharp edge, call your doctor or ostomy nurse.
Stomas Move!
Don't be afraid: stomas move before and during output. Your stoma is a living piece of your intestine and your intestines move! It is normal for it to retract and pucker. It will let you know when something is about to happen. This is very useful when you’re not home; you'll feel more confident about knowing when to find a bathroom.
Be Brave
By the end of the first 6 weeks, I was feeling much more surer of myself about taking care of my colostomy. Then, I tried all kinds of pouching systems along with many accessories. When I changed brands, I went through the process all over again, speaking to sales representatives and using all the free samples they sent me. Just remember you’ll need a prescription for your supplies from your surgeon, so once the hospital sets you up with a supply company, give that to them. And if/when you change brands, you’ll need a new prescription for that. Don’t worry, it sounds confusing now, but your supply company will handle these details for you.
It's normal to be overwhelmed in the beginning, so aim to keep things simple. If your ostomy nurse was like mine and raced through the material, it's difficult to feel confident on your own. Hit reset and try to copy what the surgeon put on you after surgery. Your home health aide may or may not have experience with ostomies, so do your own research and practice with sample supplies. Join a support group as soon after surgery as you can. Armed with information, experience, and support, you, too, will find the confidence you need to care for your new ostomy.
It helps to learn the names of the basic parts of your prosthetic and familiarize yourself with what they do:
Barrier/Wafer: the baseplate held on your skin with powerful adhesives attaches to the pouch.
Pouch: simply put, this is 'the bag' everyone talks about. It can be open at the end (drainable) or not (closed); there may be a filter (or not) that lets out excess air; and it may be clear or opaque. I preferred drainable clear bags with filters – this not only prevented my bag from blowing up like a balloon, but let me empty it whenever I wanted, and because it was clear, I could see how much was in it.
1-Piece system: the barrier and the bag are already connected. To change the bag, you need to remove the barrier from your skin. I chose not to use this system because I have sensitive skin and more frequent barrier changes would have likely irritated my skin more.
2-Piece system (shown at left): the barrier and the bag are separate. The bag can be removed any time you want while leaving the barrier on your skin. I liked this because I could change the bag without changing the barrier, which gave me more confidence when I was out in public. I could also remove the bag when I showered or wanted to clean around my stoma.
Adhesive Remover: wipes or spray, this is absolutely necessary to get the barrier off without irritating your skin. Although some barriers look like regular first-aid bandages, they are not the same! Trying to rip the barrier off your delicate tummy will be painful and leave you with damaged, broken, inflamed skin that the next barrier will not stick to.
Skin Prep Wipes: Before placing the next barrier on your skin, use these wipes to create a much more receptive surface for the adhesives. It also protects your skin from irritation.
Bandage Scissors: Specialized scissors with a rounded “nose” to cut the barrier without leaving behind sharp edges. These are great. If the hospital did not send you home with a pair, get them yourself for just a few dollars at a pharmacy or online.
