I created this post because likely a lot come here for information and they are new to having an Illeistomy.
I know I wasn't completely informed when I got out of the hospital and ran into some serious issues that could have resulted in more unnecessary surgery.
1: DO NOT EAT HARD FOODS. Nuts, seeds, tough parts of meat, apple cores or skins on most vegetables, skins on sausage or other fiberous or doesn't digest foods like pineapple, onions beans, mushrooms, carrots, cabbage, spinach, corn, salads etc unless purreed into near liquid. I will provide a list at the end of this post. If you do you risk a painful clog and a trip to the ER. Hopefully not to surgery. Often prepared food may have celery or onions mixed in for flavor so watch for those. This is only initially as a precaution until you learn what your body will tolerate and by watching your stoma output. Many early Illeistomy folks using paste or cutting too small of a wafer hold will accidentally cover or constrict their stoma output and thus filtering chunky stuff which then backs up usually causing the wafer to pop off and leak as well.
2: Eat nutritional foods between early am (after a bag change and shower if needed) until about 2 pm in small quantities spaced out over time, about 1 cup per food group. (meat protein, starch, vegetable juice) Then after that just small snacks of about a pudding cup size to keep off hunger until morning. What this does is gives one more sleep time without needing to empty the bag several times a night.
3: At first, train yourself to sleep only on your back. Use pillows under each arm and that should keep you from rolling over onto your side or stomach. Learn to feel your bag during the night if it requires a dumping and since your awake some, might as well ensure it's empty. However some nights your going to be tired from a hard day, thus the eating early trick will hopefully assist in having less blowouts during the night.
4: Learn to sleep with your upper body raised at an angle. Even with a towel or pillow under your butt cheek to keep the bag level and the output flowing to the bottom away from pooling around the stoma or always draining to one side.
5: When applying your adhesive to bind to the wafer (either a paste or ring), ensure your skin is clean, very dry and free of any oils or lubricants..I would apply the skin side first and ensure a good bond before wasting a wafer. With a ring you enlarge it to just fit around your stoma and press the edges to get it closer if needed. With paste it's tricky, first apply a thin pre-coat of paste (mix with a little stoma powder to hyperactivate) using a flat stick focusing on wound areas first. If the paste sticks to the skin then press down and sideways to remove from stick. If not remove and wipe the now wet useless paste and discard. Dry and try again. Then once a nice thin pre-coat of paste around the stoma to 1/2" wide, coat the area to about 1/8-1/4" thick high around stoma. Then a second ring outside that one to a height you feel is best to level out unevenness to marry to the flat wafer. You don't want to much paste near the stoma or pressing the wafer on can cover it and cause a clog (one piece systems). With a lot of paste it's best to lay still on your back after the wafer is on to let it set up or gravity or output will cause it to dislodge. For a one piece do not squeeze the paste past the edge of the wafer hole if possible. For a two piece you just can remove the excess covering the stoma. You should see just a slight ring of paste appearing around the inside edge. Anymore and you'll have problems. If your paste stings, likely due to output caused burn wounds, switch to using no sting paste instead.
6: When cutting your wafer hole, use the measuring guide provided and cut to be slightly larger than your stoma. It comes out and needs to enter the wafer without scraping on the sharp edges. If your stoma is oval then cut an oval hole. To large or too small of wrong shape of a wafer hole will cause problems. It's wise to lay down, cut the hole smaller and then enlarge it as necessary, testing it and using paste on wafer flange edge to make skin reference marks. Then apply paste or ring to the skin, then peel the backing of the wafer and apply correctly and accurately. If you need to make reference marks on your body to line up the wafer then do so, works for me. Because if you make a mistake and shift the wafer off to the right or left, or too high or low, then the stoma can push the wafer off to cause a leak or a graneoluma to occur.
7: If your digestive enzymes from your output burn leaks or blowouts is severely burning your skin other than a dull ache, it may be stomach acid caused by the body immediately flushing out something it doesn't want, for me it was coffee. So I switched to tea and the problem reduced in intensity. But it still causes high volume of output (runaway dirrarea). So mornings with a fresh bag on is ideal.
8: Staying hydrated: Unfortunately with an Illeistomy your not using your colon which extracts water and makes poo more solid.
Make your own rehydrate solution
https://www.dartmouth-hitchcock.org/comprehensive-wound-healing/oral-rehydration-solution-recipes
So to combat the water loss you just need to keep spare bottles of water around. However you can wash out electrolytes with too much drinking of just plain water. So once in awhile it's good to have some water with electrolytes in it or gain them from other sources.
Don't substitute most other liquids for water, water needs to be undiluted so it can absorb waste and take it out in the urine.
Another big one to watch out for is vitamin B, as with an Illeistomy that section could have been removed and thus not there to uptake this most important nutrient.
If your feeling tingling or nerve pain at the end of your fingers or toes, that could be from the lack of B vitamins or diabetes. See a nutritionist and get a blood test.
My advice is to use something like Centrum Silver to supplement your diet.
Another sign of dehydration would be a lack of urine and/or thick output from stoma. The urine could also be a dark orange color and you may feel woozy.
Your urine color should be clear to a light yellow, however dark yellow or even orange could occur after taking vitamins, so back off taking them for a few days.
Work in progress.. check back later.
[b]Signs of a clogged stoma.
[/b]
No output or only watery output under pressure for a few hours after eating. Could be caused by a covered stoma by improper application of an appliance, typically hole is cut too small or too much paste. Also could be caused by eating hard food. Seek treatment by an emergency room, remove appliance if necessary and wait. If clogged a severe pain will eventually appear which hopefully will clear itself. If not a trip to surgery would be necessary. Unfortunately very high and frequent output will ensue after clearing for quite some time which will likely making putting on a replacement appliance difficult. Use stool thickening tactics (below). If going to an ER, bring your own otosmy gear and a change of clothes as hospital likely doesn't carry or doesn't know how.
[b]What is "pancaking?"[/b]
Pancaking occurs when a vacuum in the bag (likely do to a clogged filter) or super thick stool blocks stool from depositing to the bottom of the bag. Thus can force bag off and cause leaks. Controlling what one eats and by mixing and consuming stool thickening and stool softening foods at the same time to get a balance.
[b]What is "ballooning?"
[/b]
Ballooning occurs when foods eaten produce too much gas and the filter gets clogged (likely due to laying down) and thus forces bag off and causes leaks.
These two conditions can cause premature bag replacement and leaks which burn the skin. It's better to replace the appliance if there is any continuous stinging pain, don't just live with it. Keep an eye on your otosmy supply and have ample reserves.
I've found that caffeine, in coffee, tea and even chocolate causes diarrhea and can assist in controlling flow so stool is more liquid..however coffee makes output very acidic making burns worse. Dried Chinese Crispy Noodles, Cheerios or applesauce (peeled apples) are the exact opposite, a stool thickening food. By mixing these with other foods one can manipulate their stool output and counter the issues above. Also the severe thickening helps in cases where one has severe diarrhea and unable to reattach a new bag due to high flow.
[b]Eating Guide
[/b]
Partially copied from my nutritionists guide. Ileostomy Nutrition Therapy from the Academy of Nutrition and Dietetics. (This handout may be duplicated for client education.)
My recommendation is to see a nutritionist for the full guide as not all can be pasted here
I've added my own observations to further clarify
Chew all foods well to the consistency of paste.
[b]Foods That May Cause Blockage (very bad avoid!)
[/b]
Apples, unpeeled (unpeeled and applesauce are excellent thickeners, don't eat the core, chew well)
Bean sprouts
Cabbage, raw
Casing on sausage (inside fine if no tough parts, avoid swallowing if a chunk is felt)
Celery (avoid)
Chinese vegetables (stir fried crunchy, too hard, need soft veggies with no skins)
Coconut
Coleslaw
Corn (grits also, corn anything doesn't seem to dissolve in stomach)
Cucumbers (skins bad, inside chewed up good seems okay, no seeds)
Dried fruit, raisins
Grapes
Green peppers (red, yellow also) pureed or very very small seems okay in small amounts
Mushrooms (doesn't dissolve in stomach) pureed or very very small seems okay in small amounts
Nuts (totally avoid)
Peas (mushy interior okay, like pea soup, skins a problem)
Pickles (skins a problem, inside if chewed up good seems okay, seeds not)
Pineapple (liquid okay, mushy parts fine, hard parts not, tricky)
Popcorn (totally avoid)
Relishes and olives
Salad greens (diarrhea nightmare too)
Seeds and nuts (avoid)
Spinach (doesn't digest, pureed perhaps)
Tough, fibrous meats (for
example, steak on grill, well done, tough parts especially)
Vegetable and fruit skins, (any avoid)
Whole grains (no grits, oatmeal seems to be okay, Cheerios is an excellent thickener)
[b]Foods That May Cause Gas or Odor
[/b]
Alcohol
Apples
Asparagus (stink)
Bananas
Beer
Broccoli (clog hazard)
Brussels sprouts (clog hazard)
Cabbage (clog hazard)
Carbonated beverages
Cauliflower
Cheese, some types
Corn (clog hazard)
Cucumber
Dairy products
Dried beans and peas (clog hazard)
Eggs (don't digest in stomach)
Fatty foods
Fish (cooked salmon in small portions may not, nor stink)
Grapes
Green pepper (red and yellow also, clog hazzard)
Melons
Onions (clog hazard)
Peanuts (clog hazard)
Prunes
Radishes
Turnips
Soda and sipping using straws, (drink from glass instead)
Seafood (oh God does it stink!)
If your having pancaking issues a small amount of something above (like having a soda during a meal) could introduce some air into your diet and thus into the bag. Also by avoiding too much thickening foods by themselves which often contribute to pancaking.
[b]Foods That May Help Relieve Gas and Odor[/b]
Buttermilk
Cranberry juice
Parsley
Yogurt with active cultures (Greek yogurt)
[b]Foods That May Cause Diarrhea (looser or more frequent stool)
[/b]
Alcohol (including beer)
Apricots (and stone fruits)
Beans, baked or legumes
Bran
Broccoli
Brussels sprouts
Cabbage
Caffeinated drinks
(especially hot)
Chocolate
Corn (in my experience corn anything doesn't digest in stomach, just passed through and out, kernels/popcorn will clog)
Fried meats, fish, poultry (KFC, supermarket rotisserie chicken very bad, anything soaked in brine)
Fruit juice: apple, grape, orange (small amount okay)
Fruit: fresh, canned, or dried (small amount okay)
Glucose-free foods containing mannitol or
sorbitol
Gum, sugar free
High-fat foods
High-sugar foods
High salt foods (KFC, supermarket rotisserie chicken)
High seasoned foods (blackened)
Licorice
Milk and dairy foods (small amounts okay)
Nuts or seeds (bad, clog hazard)
Peaches (stone fruit, one rarely okay)
Peas
Plums (stone fruit)
Prune juice or prunes
Soup
Spicy foods
Sugar-free substitutes
Tomatoes
Turnip greens/green leafy
vegetables, raw
Wheat/whole grains
Wine
Rice (1/4 cup in mixed in food okay), refried beans (1/4 cup okay) pasta (one cup max).
Any foods soaked in brine or fried (rotisserie chicken, Kentucky fried chicken etc)
[b]Foods That May Cause Diarrhea (looser or more frequent stool)
[/b]
Alcohol (including beer)
Apricots (and stone fruits)
Beans, baked or legumes
Bran
Broccoli
Brussels sprouts
Cabbage
Caffeinated drinks
(especially hot)
Chocolate
Corn (clog hazard, even grits, doesn't digest)
Fried meats, fish poultry
Fruit juice: apple, grape,
orange
Fruit: fresh, canned, or
dried
Glucose-free foods
containing mannitol or
sorbitol
Gum, sugar free
High-fat foods
High-sugar foods
High salty foods
Licorice
Milk and dairy foods
Nuts or seeds
Peaches (stone fruit)
Peas
Plums (stone fruit)
Prune juice or prunes
Soup
Spicy foods
Sugar-free substitutes
Tomatoes
Turnip greens/green leafy
vegetables, raw
Wheat/whole grains
Wine
Soylent nutritional drink
[b]Foods That May Help Thicken Stool
[/b]
Applesauce (unpeeled apples, no cores)
Bananas
Barley (when OK to have
fiber)
Cheese (cheese food may be a clog problem, use real cheese)
Dried Chinese Crispy Noodles (severe thickening, mix with other food that causes diarrhea)
Marshmallows
Oatmeal (when OK to have
fiber)
Pasta (sauces may increase
symptoms) (in my experience more than a cup of pasta causes diarrhea)
Peanut butter, creamy only, nuts clog (makes skin oily)
Potatoes, no skin (skin clogs, more than a cup causes diarrhea)
Pretzels (salty may cause more flow water consumption)
Metamucil, mix or crackers (mix in cup of water and drink before it gells up)
I'm adding to this list based upon experience.
