Valuable tips I've learned having an illeostomy
Posted: 2026-08-17 14:16:18
There is so much to learn it's going to take awhile. An ostomy nurse and even an ostomy dietitian can help but ultimately it's going to come down to ones own experience and abilities.
So I've compromised this list of what I've learned that might apply in your case or it might not. I have an illeostomy in a belly fold with a chest scar divot to work around so I learned a few tricks.
1: Learn to sleep on ones back. Not only beneficial but it prevents a lot of accidents. One can train themselves by sleeping several nights with a pillow underneath each arm. After that it might become automatic and no pillows needed.
For an illeostomy eat slowly, not swallowing extra air, (no straws or carbonated drinks), chew ones food in small bites and into the consistency of baby food. Clogs occur as the output diameter is smaller than the original pathway out of the body. If you can't chew it into pudding, spit it out, it might cause a clog.
2: First out of surgery with scab type wounds around the stoma is really hard. A product called Medline Marathon (expensive) will form dry scabs so skin prep can be applied then ostomy paste then ones wafer. Unfortunately it will take time to heal and scabs come off so more frequent wafer changes will occur until that skin heals up. Feel pain from a leak, change the bag even if you have to sit on a plastic chair in the shower and rinse the output off your skin until it stops enough you can put any fresh bag on. Because with an illeostomy the output contains powerful digestive enzymes that will eat skin fast. It will eat it even faster if the output is more acidic, like after drinking coffee or other caffeine or tomato sauces..etc. Less so if you eat low fat meals with a lot of starches like plain pasta, rice and mashed potatoes.
3: It will take time of no output burning to eliminate the scabs and heal the skin better. Once the scabs are gone life will become easier and only shallow leak wounds which after cleaning a one grain high coat of stoma powder just on the wounds covered by a thin coat of skin protectant. This is called "crusting" sometimes another layer is needed. As long as everything is dry afterwards (dry toilet paper dab and fan for one minute) so the ostomy paste (or rings etc) can stick and provide a waterproof seal. Eventually no stoma powder will be needed and only skin protectant that's where you want to be.
4: Biggest mistake I made for long time was using paste as a filler between the wafer and my skin. Paste only works when it's thin, it runs out if too thick. So what needs to be done is bring the harder stronger wafer material closer to the skin and only use paste as a thin gap filler. Unfortunately rings don't always work as a filler because they melt as well. I've found using the wafer cutout piece, cut into circular strips and placed around the wafer hole (sticky side towards skin) to work well in doing this as well as filling both sides of my belly fold. Wafer material doesn't melt. There are also convex wafers that bow to get the wafer closer to the skin around the stoma. I use a combination of both, convex to get it down further and wafer cutout pieces to fine tune to the body and belly fold. Paste used to seal the tiny gaps.
5: Using an ostomy suppliers body contour check will assist one on getting the right appliance for their body contour. Losing weight and creating a flatter abdomen will help also, especially if the stoma is recessed below the skin surface. But everyone is different so they have to experiment. Ostomy makers will send out free samples for one to try and find what works for them. If despite losing weight etc. ones stoma doesn't clear the skin surface, a revision (surgery) may be required.
6: One thing I had to learn was ensuring the skin, especially around the stoma, was absolutely clean, dry and oil, dust, dirt etc. free. The best soap when cleaning the area is to use is Ivory pure like soap free of moisturizers etc that will interfere with bonding. The only thing that goes under the wafer is stoma powder and skin protectant. The best thing I've found to remove remaining near invisible adhesive off the skin is oil free eye makeup remover, then followed by three washings of ivory soap and water for squeaky clean skin and fingers.
7: In the case of an itchy skin fungus, athletes foot powder can be used in lieu of stoma powder but has to be covered with skin protectant just the same way as the adhesive won't stick to powdered skin..use only once until itchy skin resolved because stoma powder works much better to seal for weepy wounds than athletes foot powder.
8: Another thing I failed to do early on is apply sufficient heat and pressure after the wafer is applied using a toilet paper tube through the wafer to get the barrier adhesive (paste or rings) to bond well to the skin. With scabs this might not be possible as they might break and leak blood, but once the skin is better healed up a firm 5 minute even pressure will keep the seal lasting longer.
9: Another thing I learned is that any air gaps under the wafer is going to grow itchy mold, then erodes the barrier adhesive causing a premature leak. So ensure the wafer adhesive is flat to the skin and/or fill in areas with strips of cut barrier strips (extra adhesive strips that go around the wafer adhesive and strengthen its hold). Thing about wafer adhesive and barrier strips is when properly applied they seal the skin and prevent mold from growing and protect the skin. However they are weak on their edges (for later removal) thus can't be placed immediately around the stoma because it produces liquid output..it gets underneath and causes a leak. The only thing that goes right around the stoma and seals the skin is either paste or a ring.
10: One can most certainly take a shower with an ostomy bag on, no waterproofing of the bag is needed. Many have the ability to roll the end up under a shield so downward water pressure goes right past the end. If your early on like I was in my illeostomy adhering learning experience you might want to take more lukewarm showers and keep as much water from hitting the bag directly as possible. It's because sweat can loosen the seal if it's not applied well. Humidity can also develop if there are air pockets causing mold to grow. Once your ninja skills have improved substantially, you can even use the pool and hot tub no problem. To dry the bag, use a blow dryer, especially underneath where it touches the skin. That's the most annoying when that part is wet.
11: With an illeostomy diet and salt replenishment is paramount. There is a huge list of things not to eat or drink. My advice is to download an AI program and research everything well before you consume it. I've learned that anything hard like nuts, hard parts of meats, indigestible fibrous foods like vegetables and fruit, seeds and candies can cause a painful clog that might require hospitalization. Soft lean meats, cheese, dairy, pastas, breads and non spicy, not overly spicy, not acidic (like coffee, tea and tomato sauces), nor contain artificial ingredients (even if naturally derived) are good. Also keeping meals between 5-10% RDA of fat. Consume only a small portion of protein at a time or else it draws more water into the intestines and thus into the bag causing dehydration and salt loss. Starches are excellent (plain pasta, mashed potatoes and rice) at adsorbing bile salts which can irritate the stoma os (opening) and prematurely erode the wafer seal or causing painful leak burns. Also eating regularly (especially after a dump has finished) is important to keep bile flushes down because the body is creating bile all the time, so best to keep things occupied, plain bile can be extremely corrosive.
12: One with an illeostomy will lose a lot of water and salt to otosmy output lacking a colon in play to extract these back up. So they would have to be replaced more frequently. I've made my own weakened oral rehydration solution (not a medical ORS) to slow drink during the day for maximum abortion. I also use a little lite salt on thin lean pork steaks for flavor and replenishment.
My diluted ORS is 64 oz water, 4.5 tablespoons of sugar, 1/2 teaspoon of salt, 1/8 teaspoon of Lite Salt (well shaken first) mixed and then two shots of regular sweetened natural red cranberry juice (no artificial ingredients).
The sugar helps get the salt and water get absorbed into the intestines. If not then usually it just runs right out into the bag. If ones ears are ringing that could be a sign of dehydration or lack of salt. Don't overdo salt or it creates a diarrhea situation as your body tries to get rid of the extra salt. Fine tuning this will take time, especially fresh after surgery as your intestines need to adjust to taking up the slack of no colon. As always check with ones doctors etc. before starting any ORS or diet routine. Often illeostomy types need loperamide (Imodium AD) to slow down their system so intestines have more time to uptake water etc. better. Ones doctor will know that and set up a schedule, usually 2mg every four to six hours and one before bed time.
13: Keeping ostomy supplies in the car. You never know when you'll need it. But try to keep it in a cool spot and check regularly as heat will ruin the adhesives. Don't forget cleaning supplies, spare clothes and a case of water with a box of Drip Drop (with sugar) for making rehydration solution on the road. The empty water bottles are good to use to rinse the bag out as well. Just take the empty into the bathroom, fill, rinse the bag and discard. No need for anyone to know. Always wash ones hands with soap after using the toilet, especially with an illeostomy. Never get illeostomy output on ones genitals as it can cause a UTI or worse. Digestive (and cleaning type) enzymes are bad and you don't want them lose inside your body, will cause a severe infection.
14: Nutrition with an illeostomy is of utmost importance. Since so much causes problems with an illeostomy one is prone to avoid nutritious food on account of the side effects. (Especially beans that clog or cause severe gas). Usually diets high in starches, medium protein and low (but not no) fat is ideal. My advice is to use AI and ask it what the effects will be on their illeostomy before one consumes it. Then try a small amount under 4 oz. Too large of anything will cause excessive output and frequent dumpings so quality of energy and low quantity more frequently during the 24 hour period is better than three huge meals. Since there is no colon the intestines are taking up all uptake so slow and steady is best. Anything liquid is just going to come right out of enough is ingested..so focus on solid foods and less on protein or whey isolate drinks etc. Maintain a list of what one has tried, it's quantity and it's effects as everyone is slightly different, also mixing foods will cause different effects. Like plain pasta will come out wonderful but mixed with tomato sauce will be gassy and watery, acidic may irritate the stoma. I only use a slight amount of lite mayo or a tiny bit of shredded cheese for flavor on pasta as the effects are minimal. Too much protein consumed at once causes water to be drawn into the intestines and cause watery output which causes dehydration. So I learned that about 3 skinless chicken breast medallions portions (enough for a sandwich) is just enough..a small thin lean plain pork or lean steak is good enough also. Downing a huge plate of BBQ chicken wings or a large plate of spaghetti is not. Portion control is vital because what isn't taken up by slow digestion just gets dumped into the bag. Many times I've fell asleep after downing a huge plate of spaghetti with meat sauce only to wake up in the middle of the night with a huge mess as it blew my bag clean off.
15: Which brings me to my next point, until ones bag adherence and diet control ninja skills improve its likely best to plastic sheet protect ones mattress..they are expensive to replace and one will never get the smell out.
More to come later
So I've compromised this list of what I've learned that might apply in your case or it might not. I have an illeostomy in a belly fold with a chest scar divot to work around so I learned a few tricks.
1: Learn to sleep on ones back. Not only beneficial but it prevents a lot of accidents. One can train themselves by sleeping several nights with a pillow underneath each arm. After that it might become automatic and no pillows needed.
For an illeostomy eat slowly, not swallowing extra air, (no straws or carbonated drinks), chew ones food in small bites and into the consistency of baby food. Clogs occur as the output diameter is smaller than the original pathway out of the body. If you can't chew it into pudding, spit it out, it might cause a clog.
2: First out of surgery with scab type wounds around the stoma is really hard. A product called Medline Marathon (expensive) will form dry scabs so skin prep can be applied then ostomy paste then ones wafer. Unfortunately it will take time to heal and scabs come off so more frequent wafer changes will occur until that skin heals up. Feel pain from a leak, change the bag even if you have to sit on a plastic chair in the shower and rinse the output off your skin until it stops enough you can put any fresh bag on. Because with an illeostomy the output contains powerful digestive enzymes that will eat skin fast. It will eat it even faster if the output is more acidic, like after drinking coffee or other caffeine or tomato sauces..etc. Less so if you eat low fat meals with a lot of starches like plain pasta, rice and mashed potatoes.
3: It will take time of no output burning to eliminate the scabs and heal the skin better. Once the scabs are gone life will become easier and only shallow leak wounds which after cleaning a one grain high coat of stoma powder just on the wounds covered by a thin coat of skin protectant. This is called "crusting" sometimes another layer is needed. As long as everything is dry afterwards (dry toilet paper dab and fan for one minute) so the ostomy paste (or rings etc) can stick and provide a waterproof seal. Eventually no stoma powder will be needed and only skin protectant that's where you want to be.
4: Biggest mistake I made for long time was using paste as a filler between the wafer and my skin. Paste only works when it's thin, it runs out if too thick. So what needs to be done is bring the harder stronger wafer material closer to the skin and only use paste as a thin gap filler. Unfortunately rings don't always work as a filler because they melt as well. I've found using the wafer cutout piece, cut into circular strips and placed around the wafer hole (sticky side towards skin) to work well in doing this as well as filling both sides of my belly fold. Wafer material doesn't melt. There are also convex wafers that bow to get the wafer closer to the skin around the stoma. I use a combination of both, convex to get it down further and wafer cutout pieces to fine tune to the body and belly fold. Paste used to seal the tiny gaps.
5: Using an ostomy suppliers body contour check will assist one on getting the right appliance for their body contour. Losing weight and creating a flatter abdomen will help also, especially if the stoma is recessed below the skin surface. But everyone is different so they have to experiment. Ostomy makers will send out free samples for one to try and find what works for them. If despite losing weight etc. ones stoma doesn't clear the skin surface, a revision (surgery) may be required.
6: One thing I had to learn was ensuring the skin, especially around the stoma, was absolutely clean, dry and oil, dust, dirt etc. free. The best soap when cleaning the area is to use is Ivory pure like soap free of moisturizers etc that will interfere with bonding. The only thing that goes under the wafer is stoma powder and skin protectant. The best thing I've found to remove remaining near invisible adhesive off the skin is oil free eye makeup remover, then followed by three washings of ivory soap and water for squeaky clean skin and fingers.
7: In the case of an itchy skin fungus, athletes foot powder can be used in lieu of stoma powder but has to be covered with skin protectant just the same way as the adhesive won't stick to powdered skin..use only once until itchy skin resolved because stoma powder works much better to seal for weepy wounds than athletes foot powder.
8: Another thing I failed to do early on is apply sufficient heat and pressure after the wafer is applied using a toilet paper tube through the wafer to get the barrier adhesive (paste or rings) to bond well to the skin. With scabs this might not be possible as they might break and leak blood, but once the skin is better healed up a firm 5 minute even pressure will keep the seal lasting longer.
9: Another thing I learned is that any air gaps under the wafer is going to grow itchy mold, then erodes the barrier adhesive causing a premature leak. So ensure the wafer adhesive is flat to the skin and/or fill in areas with strips of cut barrier strips (extra adhesive strips that go around the wafer adhesive and strengthen its hold). Thing about wafer adhesive and barrier strips is when properly applied they seal the skin and prevent mold from growing and protect the skin. However they are weak on their edges (for later removal) thus can't be placed immediately around the stoma because it produces liquid output..it gets underneath and causes a leak. The only thing that goes right around the stoma and seals the skin is either paste or a ring.
10: One can most certainly take a shower with an ostomy bag on, no waterproofing of the bag is needed. Many have the ability to roll the end up under a shield so downward water pressure goes right past the end. If your early on like I was in my illeostomy adhering learning experience you might want to take more lukewarm showers and keep as much water from hitting the bag directly as possible. It's because sweat can loosen the seal if it's not applied well. Humidity can also develop if there are air pockets causing mold to grow. Once your ninja skills have improved substantially, you can even use the pool and hot tub no problem. To dry the bag, use a blow dryer, especially underneath where it touches the skin. That's the most annoying when that part is wet.
11: With an illeostomy diet and salt replenishment is paramount. There is a huge list of things not to eat or drink. My advice is to download an AI program and research everything well before you consume it. I've learned that anything hard like nuts, hard parts of meats, indigestible fibrous foods like vegetables and fruit, seeds and candies can cause a painful clog that might require hospitalization. Soft lean meats, cheese, dairy, pastas, breads and non spicy, not overly spicy, not acidic (like coffee, tea and tomato sauces), nor contain artificial ingredients (even if naturally derived) are good. Also keeping meals between 5-10% RDA of fat. Consume only a small portion of protein at a time or else it draws more water into the intestines and thus into the bag causing dehydration and salt loss. Starches are excellent (plain pasta, mashed potatoes and rice) at adsorbing bile salts which can irritate the stoma os (opening) and prematurely erode the wafer seal or causing painful leak burns. Also eating regularly (especially after a dump has finished) is important to keep bile flushes down because the body is creating bile all the time, so best to keep things occupied, plain bile can be extremely corrosive.
12: One with an illeostomy will lose a lot of water and salt to otosmy output lacking a colon in play to extract these back up. So they would have to be replaced more frequently. I've made my own weakened oral rehydration solution (not a medical ORS) to slow drink during the day for maximum abortion. I also use a little lite salt on thin lean pork steaks for flavor and replenishment.
My diluted ORS is 64 oz water, 4.5 tablespoons of sugar, 1/2 teaspoon of salt, 1/8 teaspoon of Lite Salt (well shaken first) mixed and then two shots of regular sweetened natural red cranberry juice (no artificial ingredients).
The sugar helps get the salt and water get absorbed into the intestines. If not then usually it just runs right out into the bag. If ones ears are ringing that could be a sign of dehydration or lack of salt. Don't overdo salt or it creates a diarrhea situation as your body tries to get rid of the extra salt. Fine tuning this will take time, especially fresh after surgery as your intestines need to adjust to taking up the slack of no colon. As always check with ones doctors etc. before starting any ORS or diet routine. Often illeostomy types need loperamide (Imodium AD) to slow down their system so intestines have more time to uptake water etc. better. Ones doctor will know that and set up a schedule, usually 2mg every four to six hours and one before bed time.
13: Keeping ostomy supplies in the car. You never know when you'll need it. But try to keep it in a cool spot and check regularly as heat will ruin the adhesives. Don't forget cleaning supplies, spare clothes and a case of water with a box of Drip Drop (with sugar) for making rehydration solution on the road. The empty water bottles are good to use to rinse the bag out as well. Just take the empty into the bathroom, fill, rinse the bag and discard. No need for anyone to know. Always wash ones hands with soap after using the toilet, especially with an illeostomy. Never get illeostomy output on ones genitals as it can cause a UTI or worse. Digestive (and cleaning type) enzymes are bad and you don't want them lose inside your body, will cause a severe infection.
14: Nutrition with an illeostomy is of utmost importance. Since so much causes problems with an illeostomy one is prone to avoid nutritious food on account of the side effects. (Especially beans that clog or cause severe gas). Usually diets high in starches, medium protein and low (but not no) fat is ideal. My advice is to use AI and ask it what the effects will be on their illeostomy before one consumes it. Then try a small amount under 4 oz. Too large of anything will cause excessive output and frequent dumpings so quality of energy and low quantity more frequently during the 24 hour period is better than three huge meals. Since there is no colon the intestines are taking up all uptake so slow and steady is best. Anything liquid is just going to come right out of enough is ingested..so focus on solid foods and less on protein or whey isolate drinks etc. Maintain a list of what one has tried, it's quantity and it's effects as everyone is slightly different, also mixing foods will cause different effects. Like plain pasta will come out wonderful but mixed with tomato sauce will be gassy and watery, acidic may irritate the stoma. I only use a slight amount of lite mayo or a tiny bit of shredded cheese for flavor on pasta as the effects are minimal. Too much protein consumed at once causes water to be drawn into the intestines and cause watery output which causes dehydration. So I learned that about 3 skinless chicken breast medallions portions (enough for a sandwich) is just enough..a small thin lean plain pork or lean steak is good enough also. Downing a huge plate of BBQ chicken wings or a large plate of spaghetti is not. Portion control is vital because what isn't taken up by slow digestion just gets dumped into the bag. Many times I've fell asleep after downing a huge plate of spaghetti with meat sauce only to wake up in the middle of the night with a huge mess as it blew my bag clean off.
15: Which brings me to my next point, until ones bag adherence and diet control ninja skills improve its likely best to plastic sheet protect ones mattress..they are expensive to replace and one will never get the smell out.
More to come later