Living with an Eating Disorder at 57 and Post-Surgery Challenges

I have had an eating disorder for as long as I can remember. I am 57 years old now. I had surgery about 4 and a half weeks ago. I thought my disorder would just go away. I was wrong. It scared me. I was so scared I messed up my stoma. I woke up and it was fine; I just had to empty it. I set my alarm for the middle of the night and about 4 times in the morning. Does anybody have the same problems?

Hi there. Welcome to the site.

Emptying during the night is pretty much the new norm for us with an ileostomy.

The number of times during the night varies.

I go at least 3 times. I can clock each hour as it seems to be always around the same times.

Usually 3 a.m., once before, once after. It sucks.

It's exhausting.

Some will say eat before a certain time like 4 or 6 p.m.

You need to find your rhythm on your "go" times. For example, if you ate at 2 p.m., when would you need to empty? That amount of time is important to know about digesting food, especially for decent sleep.

It will ease those midnight empties.

I don't need an alarm clock. My internal one seems accurate enough.

Let us know if this works.

The welcome wagon is on its way with other suggestions and advice.

Welcome again.

Lots of various eating disorders out there, you’ll need to be more specific if you wanna find someone that may have the same thing. As far as emptying at night, ostomy or not, everyone has to go. You may need to empty multiple times, once, never at night. It all varies for each of us. 

Emptying at night is normal for sure. I mean, for me, I've had a kidney stone so now I consume a ton of water during the day so I go anyway, lol. There are many disorders out there; if you can be more specific, you might find someone here who has had similar experiences. Only if you're comfortable sharing, of course.

I agree with what everyone said; emptying in the night is normal. It is not that you messed up your stoma with an eating disorder. My concern would be if you are purging, then you may cause yourself a hernia or cause yourself to get dehydrated. With an ileostomy, you can get dehydrated really fast.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Daisymae, thank you for sharing such a private piece of information about you. I had anorexia in my early 20s, just flat out stopped eating. It's exhausting and debilitating. I'm grateful to be way past it, although I do still eat the chips out of cookies and leave the cookie, and eat the icing on cake and leave the cake. These are called food rituals and sometimes they remain...

You say you thought your disorder would just go away, that it scared you and messed up your stoma. Can you be more specific? Why would the surgery affect your eating habits? I want to help, just not clear on what it is exactly that's concerning you. We all wake up at least once at night to empty our bags, sometimes more depending on how much and how late we ate, that's perfectly normal.

Unfortunately nighttime dumping is just a fact of life with those who have an Ileostomy. But there are things one can do to reduce the nighttime dumping and get some sleep.

1: With a good bag on, eat from am to about 2 pm. Frequent small and nutritional meals. After that only very small hunger avoiding tiny snacks. This will give time for your stoma to clear out. 

2: Sleep only on your back with your upper body slightly raised, with pillows under each arm to train yourself to remain put. This will avoid a lot of issues and cause content to drain to the bottom of the bag.

3: Train yourself at night to tap your bag to check if a dumping is required. Feel around the stoma if a pancaking bubble is forming because if ignored it will force the wafer off and cause a leak or a blowout even.

4: After each dumping, put in a couple of drops of liquid antibacterial dish soap into the bottom of your bag followed by some water and gently (don't squeeze!) wash it out. Follow by two rinses where one (if necessary or in the case of pancaking) lay down and massage/rinse the upper part of the bag and dump. Then perhaps a final rinse. Leave a drop of the dish soap and a tiny bit of water in the bag to control future odor. Say goodbye to stinky bags!

5: Clean stoma area in shower using nothing but antibacterial liquid soap (kills infection of weeping wounds also) and after each spewing as it contains oils that interfere with adhesion, apply nothing else. Blow dry area very well so even wounds feel very dry to the touch. Adhesives like rings, paste, wafer flanges and barrier strips only stick to clean, dry, dust and oily free skin. Alcohols used get trapped under things and cause allergic reactions. Antibacterial liquid soap works best to kill infection and clean the skin of oils, drys out wounds to allow bonding. As long as nothing else added to it at factory, why I prefer to use antibacterial dish soap free of any aloes or skin lubricants. 

6: If you use paste, consider using no-sting paste free of alcohol. Premix some paste with stoma powder to get it to activate and spread a 1/2" thin ring around stoma focusing on wounds first using a flat stick to press it down. If it doesn't stick then remove, and discard off stick using toilet paper. Blow dry and try again. Then about 1/3" away from stoma, put two thick rings of paste, score the tops and sprinkle in a little stoma powder, mix and cover any powder with paste or it interferes with bonding to skin and wafers.

7: If you use a ring, stretch to the size of your stoma and any gaps you press the ring flatter and closer to the stoma to cover the skin. Rings are good for flat areas and good clear skin. Paste is better for unevenness, wounds, dips or graneolumas on the skin.

8: With a wafer hole cut to be just a hair bigger than your stoma (cut an oval if your stoma is oval) press the wafer on and ensure paste or the wafer does NOT cover the stoma or it will clog. You can test fit the wafer and make reference marks on the edge of the flange and ones skin to line up later with. Some weaken their wafer horizontally so it flexes some for bending so it's not so stiff, like for belly folds.

9: Diet and quantity control is important for those with an Ileostomy.

 

 

 

 

Signs of a clogged stoma.

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 not lined up correctly or paste covering the stoma. Also could be caused by eating hard food. Remove appliance if necessary and wait in shower washing output away. If badly clogged a severe pain will appear and a trip to the ER is 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.

What is "pancaking?"

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 in your mouth to get a balance. For instance eating toast mixed with tea in your mouth so the dry bread is soaked and the tea causes more runny stool.

What is "ballooning?"

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. You can "burp" the bag of excess gas while dumping or just opening it up a little and pressing the gas portion out. But the best control method is diet control.

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.

Eating Guide

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.

Foods That May Cause Blockage (very bad avoid!)

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)

Foods That May Cause Gas or Odor

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.

Foods That May Help Relieve Gas and Odor

Buttermilk

Cranberry juice

Parsley

Yogurt with active cultures (Greek yogurt)

 

Foods That May Cause Diarrhea (looser or more frequent stool)

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)

Foods That May Cause Diarrhea (looser or more frequent stool)

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 

Foods That May Help Thicken Stool

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 didn’t read any of that post but it’s gotta be the longest one I’ve seen on here. 👍 Hope you copy and pasted all of that and didn’t actually type it all out. 🥵 

he posts most of that to everyone

Indeed he does.

This is the seventh time I have seen it in as many days.

Slight overkill, don't you think?

Thankfully, there is a scroll.

Praise be to the scroll key! 🤭😉😅

My bloody mouse set on fire scrolling down that load of repeat. I am trying not to say what I really want to say. IGGIE

Too late, my friend. You already said it in another topic.

It's hard keeping one's tongue bitten, as to not say anything.

Especially when one feels something needs to be said.

Calmer heads prevail.