How to Take Extra Care of Your Ileostomy or Colostomy

Cancer, inflammatory bowel diseases, and other devastating illnesses of the digestive tract are hard to cope with just in themselves for patients of these illnesses and their loved ones. Often times these illnesses lead to a patient undergoing temporary or permanent ostomy surgery. In 1998, I was diagnosed with Crohn's Disease, and last year I was rushed to the emergency room with a perforated colon. I woke up from one of the surgeries that followed with an ileostomy. This guide is for patients, their loved ones, or anyone with general interest of ostomy surgery: how patients can learn to cope with their new ostomy, as well as traditional and innovative methods of ostomy care.

What is an ostomy?

Ostomy surgery is required when an area of the colon or urinary tract is injured or permanently damaged. A surgeon reroutes the way the body eliminates waste, and the patient no longer uses either his rectum or urethra to remove waste from the body. Instead, urine, feces, or bile, depending on the type of ostomy, is eliminated from the body into an exterior appliance -- a bag. The patient then empties the bag into the toilet, or removes the used bag and disposes of it in a sanitary container.

Types of ostomies:

There are generally three types of ostomies: Colostomy, ileostomy, and urostomy. The colostomy and ileostomy patients both eliminate waste from a piece of colon or intestine that leads outside of the patients midsection. This piece of intestine forms a small, dark pink stump called a :"stoma." The stoma, visible on the surface of the skin, can be round, oval, or irregular in shape, and has a small opening in the center where the body's output of waste comes out. The patient cannot control when he or she will output, therefore, the patient must where an ostomy appliance at all times. I will explain later what the different types of ostomy appliances are and how to apply and function each of them -- it will help you chose the right appliance for your individual needs.

A colostomy is given to a patient who has use of most of, but not all of, his colon. Food is broken down in the stomach and travels to the small intestine. Here, the nutrients are absorbed and used to create enzymes that give the body energy. The energy is used for cell replication and overall body function. The unused food, now broken down into a thick, acidic liquid (the acid is leftover from the stomach's digestive enzymes and stays with the food to aid in further breaking it down) then moves to the remaining length of colon. Here, some of the water is removed, helping it form nearly solid feces, and is eliminated from the body through the stoma. The stoma on a colostomy patient is usually placed on the left of the patient's midsection, 3-4 inches from the naval.

A ileostomy is given to a patient who has no use of her colon at all. The small intestine is normally about 26 feet long, and it is divided up into three sections. Ileostomy surgery is named for the bottom section of the small intestine, or the ileum. Just like the colostomy patient, the ileostomy patient's food is digested in the stomach and is absorbed in the small intestine. However, no water is removed from the stool, and food high in fiber (such as fruit and roughage) material is hardly digested at all. The liquid stool passes through the stoma, which is usually located on the right hand side of the ileostomy patient, 3-4 inches from the naval.

A urostomy is given to a patient who has complications with the bladder or urethra of his urinary tract. Besides the patient being given an external stoma, it is possible in some cases for the urostomy patient to have what as known as a "continent urostomy," which is a pouch fabricated using part of the small bowel. The internal pouch can be emptied with a catheter.

Disclaimer:

In 2006, I received emergency colectomy surgery due to complications with Crohn's Disease and colitis -- that is, 2/3 of my colon was removed. I most likely will never have use of the remainder of my colon, so I also received ileostomy surgery. Because I am not very familiar with complications of the urinary tract, I will not directly discuss urostomies. However, this information can be useful to urostomy patients as well.Changing your ostomy appliance: The Basics

Changing your ostomy appliance for the first time without the help of a nurse may make you a little nervous at first, but after practicing these steps a few times, it'll be a breeze:

1. Familiarize yourself with all the tools and appliance pieces:

Knowing the names of all of your ostomy supplies and what each of them do before trying to change the appliance yourself will not only help you figure out what method and brand of supplies work best for you, but it will also help you communicate with nurses, doctors, and medical supply companies when discussing your ostomy needs.

A. The wafer - Also known as a "flange," this is the round, sticky piece of latex or light weight but durable, bendable plastic that makes contact with your skin and fits around the circumference of your stoma. The hole where the stoma slides into can be precut by the manufacturer or hand cut by the patient. Some wafers, such as the moldable convex wafer by Convatec, allow the patient to "mold" the opening with his fingers.

B. The pouch - Also known as a bag, this contains the output that is eliminated from your stoma and dangles from your body. The pouch is either attached to the wafer in a "one-piece" system, or it can be removed from the wafer and replaced in a "two piece" ostomy system. The pouch can be open-ended. This means that the bottom can be closed with a clip or by folding sections of Velcro at the spout. The open-ended pouch is reuseable and can be drained into a toilet or sanitary container. The pouch can also be close-ended, allowing the patient to do activities where he cannot chance a possible leaking pouch, like when he's camping or swimming. There's even smaller, more discreet pouches available at medical supply stores for intimate moments.

C. The adhesive remover wipes - These wipes are used to gently remove the wafer and any excess adhesive without tearing the skin around the stoma.

D. The skin barrier wipes - These wipes are used to protect the skin around the stoma from damage from output and from tearing from the adhesive. The skin barrier wipes are especially important because they also help make the skin a little more tacky to allow the wafer to stick to the skin better.

E. stoma powder - When applied to the skin, under the skin barrier wipe's solution, stoma powder helps heal up any weak, weepy skin. It also dries up any excess moisture that might keep your wafer from sticking well, and it smoothes out any uneven skin.

F. stoma paste and barrier rings - Both of these are used to hold the wafer firmly around the stoma, give the patient a little extra security in knowing that the wafer won't come off, and helps fill in any dips and valleys in the flesh around the stoma. It gives the wafer a smooth surface to stick to, and helps trap and direct wetness into the pouch.

G. ostomy belt - This belt attaches to either side of your wafer and helps the wafer last a little longer by applying pressure to either side of it. The sides of the wafer are less likely to curl up and pull away from the skin if something is holding the sides against the skin.

H. A wet wash cloth, antibacterial soap, a dry washcloth, medical scissors with a curved blade, a small make-up mirror, and a pen that writes well on the wafer's backing - All of these are needed in addition to your ostomy supplies.

2. Wash your hands!- After you've collected all of your ostomy supplies and placed them in a logical order, wash your hands thoroughly with anti-bacterial soap. You should lather your hands long enough to be able to sing the happy birthday song twice before rinsing them off and drying completely.

3. Set up your ostomy supplies - Set your supplies near you in a logical order. Make sure there is at least five removal wipes, a bottle of stoma powder (lid removed) three skin barrier wipes, one barrier ring or tube of stoma paste, one wafer, one pouch, and everything listed in "letter H" above.

4. Cut out or mold the hole in your wafer - If you don't know the size of your stoma, skip to step 5 before completing step 4. New ostomy patients usually have a wafer that needs to be cut to the right size to fit over the stoma. I always cut my wafer before removing my old appliance, using a stencil I made myself. Most ostomy patients know what size their stoma is, based on the measuring cards given by the respective brand of supplies they use. Your wafers should come with a measuring guide -- a piece of flexible cardboard with holes cut out. Each hole is labeled with the measurement of its respective diameter in inches.

Carefully wipe any stool around the stoma with a damp washcloth. Choose a hole on your measurement guide that is similar to the size of your stoma. fit the hole over your stoma and use your hand mirror to inspect the card's fitting. The hole should be as close to the size of your stoma as possible, plus 1/18 of an inch of space between the stoma and the edge of the circle. If there aren't any circles on the stoma guide that are close to the size of your stoma, or if your stoma is not round, just guess! Then, to ensure a good fit, cut a hole in your wafer that is close to the size of your stoma, and give it a test run by checking to see how well it fits around your stoma. Remember: Leave 1/18 of an inch of space between the stoma and the edge of the hole in the wafer.

Quick Tip -- If you have an oval, mushroom, or irregular shaped stoma, practice the free-cutting method each time you change your ostomy appliance. Once you have achieved a perfect fit, save the plastic or paper backing from your wafer to use as a stencil! You can also speed up the process of achieving the perfect fit if your wafer has a plastic backing. Just place the clear backing over the stoma, tract around the stoma with a thin-tipped marker, and cut out the traced shape. Viola! A perfect stencil!

5. Removing your old wafer - Remove your ostomy belt, if applicable, by sliding the plastic notches through the holes in the wafer, carefully. Beginning at the top of the wafer, gently lift the edges and apply the adhesive remover to the skin in a brisk sweeping motion. As the adhesive remover moistens the skin and the wafer, it will dissolve the tacky areas of them, causing the wafer to become loose and the skin to become free of adhesive. Continue to lift the wafer away from the skin as it loosens, and be sure to wipe at the barrier ring or ring of stoma paste to loosen it as well.

The wafer and barrier ring should easily peel off, leaving the skin free of any old adhesive, but don't be alarmed if not all of the barrier ring or stoma paste comes off. Just continue to rub adhesive remover onto the tacky area, opening a fresh packet of adhesive remover if the one you're using ever becomes too soiled or too dry. Do not attempt to remove loosened adhesive by scratching it off with your fingernails. Scratching any skin around your stoma or underneath the edges of your wafer will damage or break the skin, which will cause you highly uncomfortable pain and itching later when you apply the skin barrier wipe and clean wafer. Instead, use a damp washcloth lathered with a little squirt of anti-bacterial soap and gently wipe away the loosened adhesive. Never use bodywash or bar soaps that contain moisturizer to clean any skin that will be covered by a wafer, as these soaps will cause your skin to be too slippery -- your wafer will not stick.

Once you have removed all of the adhesive, pat your skin dry with a dry wash cloth or towel, and move on to step 6. If you haven't cut or shaped the opening on your ostomy wafer yet because you were unsure of the size, dry your skin and follow the instructions in step 4 before moving on.

6. Applying stoma powder and skin barrier - Output, especially from an ileostomy, is very acidic. Therefore, it is important that you keep your skin protected from making long term direct contact with output from your stoma. First, inspect the stoma and the skin around it, and use your small make-up mirror to see the skin underneath it. If any stool is visable, carefully wash the stoma and skin with your moistened washcloth and anti-bacterial soap and pat dry. You cannot hurt your stoma by gently washing it -- there aren't any nerve endings in it, so you won't feel anything. When you dry your stoma and surrounding skin, you might also notice a tiny bit of blood. This is normal, so don't worry.

Once the skin is clean and dry, inspect it again and note any skin that is damaged, thin, or weepy. You might even notice some skin that is uneven. If this is the case, you will need to use stoma powder to help even out and strengthen your skin. Stoma powder also helps absorb any wetness, but too much wetness will make it pasty and messy; be sure you dried your skin well before applying.

Apply the stoma powder by squeezing out generous lines, forming a "box without a lid" around the sides and bottom of the stoma, leaving about an inch of space in between. Be careful not to get any powder on your stoma, and never apply powder directly to it. Sweep the powder towards your stoma, carefully, with a clean finger. Then gently massage the powder into the skin by sweeping in an arcing motion, back and forth along each quarter segment of the circle. Make sure powder covers the entire surface your wafer will take up, and shake, blot, or blow off any excess.

Next, apply the skin barrier wipe by making the same sweeping, arcing motion that you made with your finger while applying the stoma powder. Be sure you put just enough skin barrier down to completely moisten the powder. The powder will fill in any gaps, and the skin barrier will protect your skin and help make it tacky. Brace yourself if you happen to cover broken skin with skin barrier -- it will burn beyond your wildest imagination! It might be necessary to dab a little skin barrier over broken skin, though, because getting output inside broken skin will irritate you a long more and a lot longer than the wipe will, and you will end up with a red, bumpy, itchy, rashy mess.

Once the skin barrier is generously applied, let the skin air dry for a few seconds or dry with a clean, lint-free cloth. I don't recommend using a regular terry cloth towel to blot dry skin barrier, as the skin is so tacky that it often rips some of the fibers off of the towel. When the skin is dry, move on to step 7.

7. Applying the ostomy appliance -- the final step - There needs to be a protective ring around the stoma to help trap in wetness and prolong the life of the wafer. There are generally two types of protective rings: stoma paste and barrier rings. Stoma paste is a tube of flesh colored paste that acts like quick drying cement between the skin and wafer. Put a ribbon of paste around the stoma or circle the hole that you cut out of your wafer. The ribbon should be thin in width, but just high enough to give you enough security. Allow the stoma paste to dry for about thirty seconds before applying the wafer to the stoma, and make sure you remove the protective backing off of your wafer before applying. Hold the wafer, inside of the plastic groove (near where you applied the paste), with your thumb and index finger. Apply pressure while arcing your thumb and index finger in a sweeping motion while holding the wafer in place. Do this for a few seconds, then smooth the edges of the wafer in place.

Barrier rings - or cohesive seals are pre-molded, flexible rings of tacky paste. I prefer barrier rings over stoma paste because I think they're easier to apply and remove. Remove any packaging or backing from the ring and hold it with your thumb and index finger. Mold the ring with your fingers and hold it up to your stoma until you formed a ring that will fit snuggly around your stoma. Slip the ring over your stoma, and gently press on all sides. Let the ring stand for just a few seconds before applying the wafer and applying the same pressure as described when using stoma paste.

If you have a two-piece appliance -- that is, the wafer and pouch are separated; the last step involved when applying your appliance is snapping on your pouch. Place the pouch over the wafer and match up the plastic circles. Press around the edges in a counterclockwise motion. You should either hear clicks or feel the edges of the plastic part of the pouch stick around the edge of the wafer -- sort of like a Tupperware lid. Some pouches, like the Assura model by Coloplast, have closure snaps that slide together. Slide them counterclockwise until you have them positioned in a comfortable place, then snap together to close. Your pouch, if open-ended, will either have a Velcro or clip closure. For the clip closure, position the flat part of the clip behind the tail of the pouch and fold the tail down over the clip. Snap the clip to close -- literally. You will hear a snapping sound that indicates the pouch is properly sealed. I prefer the Velcro closure pouches, because there isn't a separate clip to mess around with, and the tail flap can be folded a second time up inside a pocket on the side of the pouch. It makes wearing clothing more comfortable, and the pouch is even more discreet. I always press the "dots" on Velcro pouches together when I'm setting up my supplies. After the pouch is securely fastened to the wafer, I fold the little "butterfly wings" into the rectangular strip, fold the tail up a second time, and then tuck the whole works into the little pocket on the front of the pouch. I feel more secure, cleaner, and comfortable than with the clip closure pouches.

Tips, Tricks and Helpful Hints

The following comprehensive list is useful, even for someone whose had an ostomy for a number of years. Some of the hints on this list you may want to run past your physician before attempting for the first time. I'm just an ostomy patient -- I am not a doctor!

Empty your pouch quickly and discreetly

At home, keep an eight ounce plastic cup on your bathroom sink. Fill the cup with lukewarm water and use it to rinse your pouch. It'll keep your pouch fresh and will prevent staining -- you'll feel much cleaner. You might even want to carry a syringe (no needle, obviously) when you go out. Use the disabled person's stall, as they usually have a sink, and fill the syringe. Squirt lukewarm water inside the pouch, and then drain. I've also heard of some patients putting a little bit of baby oil inside their pouches and rubbing the sides together; this could help prevent stool from sticking.

You might even want to carry baby wipes with you in case you have spotting on your skin or the outside of your pouch -- just make sure to buy the kind that do not contain moisturizers.

Keep plastic grocery bags in your bathroom for disposal, and save any sanitary bags your ostomy manufacturer may have supplied you with for when you're on the road.

How to prepare yourself for accidents when not at home

Most important of all: always, always carry at least two full sets of ostomy supplies with you. If you were not given a travel case with your starter supplies in the hospital, I recommend using the toiletry bag from a luggage set. It's safe and easy to clean if you happen to spill your supplies, and it's compact and discreet enough to carry in a tote bag, knapsack, or briefcase. Be extra sure to keep spare supplies with you at work, at school, or any place you spend a long period of time each day, and make sure you have a few sanitary bags with you.

You may also want to carry an extra pair of pants and underwear or keep it at your desk or locker, and make sure a friend or family member is familiar with your supplies in case you happen to accidentally forget something at home. Always refill your ostomy supplies at your local medical supply store when you notice you're starting to run low.

Summer is here! You can still enjoy the warm weather with an ostomy

You may perspire under your clothes and underneath your pouch, causing your wafer to become loose. I use a light sprinkling of baby powder on the skin underneath my pouch. It keeps my skin dryer. You may also consider using an antiperspirant around your wafer and under your pouch to absorb wetness. If all else fails, try to stay cool -- that's 100% affective against accidents.

You might want to try swimming with your ostomy, which is possible if you bring the proper supplies. Make sure you have lots of waterproof tape -- not the flimsy, cheap stuff, either. It should be durable and live up to the name "waterproof." Give your tape a test run by sticking a small piece to your ankle. Submerge your ankle in water for a few minutes, then pull it out. Check and see how well the tape stood up to the water to determine whether it's good tape to swim in.

Once you have picked out the perfect tape, cover the exposed sides of your wafer with it. Tape all the sides down snuggly. After all, you don't want your wafer slipping off in the pool! I also recommend the cellophane plastic storage covers that you find in the freezer bag section of the grocery store -- the ones with that gathered sides that are used to cover bowls and plates in the refrigerator. The medium sized covers are just the right size to slip around your pouch and help keep it dry. Also, don't forget to bring your close-ended pouches to wear in the pool!

Unfortunately for some, ostomy patients cannot use tanning beds. The heat from tanning beds is so great that it causes a significant amount of sweating, and that will loosen the adhesive on your wafer. What could be more embarrassing than loosing your wafer in a tiny tanning booth? You wouldn't even have any clothes to cover yourself with! Opting to remove your wafer would be risky as well, not just because you might output, but because the UV rays can potentially damage your stoma. Remember, your stoma is part of your small intestine -- it's an organ. You don't want to expose it to UV rays.

Instead of tanning beds, try getting color naturally with the sun. If tan lines bother you that much, maybe opt to using self-tanning lotions. Check with your doctor first before seeing a professional spray tanner, though, as there might be dangers associated with spray tanning.

Again, don't forget to carry extra supplies in your car or beach bag.

A few tips for women who want to look sexy this summer

An ostomy can damper anyone's spirits and make them feel unattractive -- especially women under 40. I have exciting news, though: You don't have to give up skin tight jeans, short-shorts, and skimpy tops for your ostomy. If those kind of clothes made you feel good before your surgery, wait until you see how great they will make you feel now.

Myth: "I must always wear loose t-shirts and hoodies since I have an ostomy

If you happen to have a small frame, try my bandanna trick. Fold a corner of a bandanna 1/3 of the way to the adjacent corner. Tie the knot in front of you, and shimmy the whole works around so that the knot is in the back and the bulk of the bandanna is in the front. The top half should look like a tube top, and the bottom half should have a little "flag" that covers any part of your ostomy that might be sticking out of your shorts. It's a great way to draw attention to your back and shoulders. If you are worried about your new top slipping down, add a complimenting bikini top underneath. It'll give you extra support, it'll look sharp, and it'll save you from embarrassment if the bandanna happens to slip down to your belly.

Myth: "I can never wear tight pants again" - Fact: Sure you can, as long as you wear a pouch with a Velcro closure that has a discretion pocket in the front. Roll the end of your pouch up inside the pocket, and wear your jeans low on your hips. Don't wear lowriders, as they might rub your wafer away from your skin. Instead, wear regular bootleg pants that are normally a little snug in the bum, and close the button right at your hips. Don't worry about them riding up or falling down, because good sturdy jeans made of stretchy material aren't going to move on you. Wear a pretty shirt dress or a long top over your pants to hide the fact that your ostomy is hanging out over your jeans. Trust me, no one will ever know it's there.

Myth: "My ostomy will make my skirt pouf out and my shorts balloon - Fact: If you always empty your bag when it's 1/3 of the way full and wear a breathable pouch with an air filter feature, no one will ever see your clothes begin to bulk up and budge out.

Other Helpful Tips
Get on-line - Google ostomy suppliers such as Convotec, Hollister, and Coloplast. On their respective websites, they have options for signing up for home mailing lists. When you sign up for these mailing lists, you will receive offers for trying out samples of their products. You can even ask your ET nurse if she can get you samples of different products. Try them out. You may find that a different pouching system altogether is better suited for you. You might even discover more accessories than the ones listed here. There's even a website that sells special underwear and panties with Velcro closures and front pouches to help support your ostomy. It's your body, isn't it worth the extra research?

Find support groups - Ostomy surgery can be a devastating time in your life, and there are lots of people out there going through the same coping process that you are. You might even find that you are taking your new lifestyle in stride better than others, so maybe you can be of assistance. Look on-line for ostomy support groups or call your local hospital for the group in your area.

Talk to your spouse or partner - This change in your life isn't just scary for you, it's scary for the one you love as well. Confide in each other of all the reservations and fears that you may have, as communication is foundation to solid relationships. It is possible to become intimate again after ostomy surgery as long as you can wait until your body healed, and only you know when that may be. If you are comfortable being extra close, you might want to try using an intimacy pouch. It's a small, closed-ended pouch, that is much shorter than your everyday pouch. For even extra comfort, I've heard of using t-shirts or even women's halters or tube tops to hold your ostomy in place. Pull one down around your waist, minimizing the chance your pouch could slip off or your stoma getting injured.

You will discover that ostomy surgery isn't the end of the world, and it doesn't change your world as much as you may think. It actually will open doors for you that weren't there before, as your disease or injury is finally under control.