Struggling to Gain Weight After Ileostomy

Hi Ashton, I'm struggling as well with chronic weight loss. Pre-op I was 79 kg; this week I weigh 53.4 kg. I eat little but often, a full-fat diet, and have recently been prescribed milkshakes and desserts that are high in carbohydrates. I was advised to use extra virgin olive oil when cooking and in salads as a dressing. I've just weighed myself, and I've gained 4 kg in the last two weeks. Hope you're doing okay, and this helps a little. Kindest regards.

Yes, you are right about the water catch-22.

I am about a year and a half post-ileostomy and pretty much follow the guidelines which a traveler offered.

I would just like to add that I worked with a dietitian who understood problems associated with this procedure, and that was very helpful. I also used Lomotil in accordance with the doctor's advice and understand that I may continue to need it for the rest of my life, though I have managed to reduce it to about two pills per day.

I would also add not to be discouraged. It took me this long to start to regain my weight.

I had an ileostomy in 2019 and know I lost a lot of weight, but I'm not sure how much. I probably weighed 115 lbs. A year later, I had reversal surgery, which also caused chronic constipation. Again, I can't remember my weight at that time. In 2024, I had another surgery. Thankfully, the surgeon did a colon resection with no need for a bag. My weight now is 82 lbs. I'm an elderly person but still very active. Everyone tells me I look so frail, but I feel okay. It is a dilemma for me how to gain more weight, other than drinking Ensure. It is a good idea to eat smaller meals throughout the day. I wish you luck.

H. West

I had an ileostomy in 2019 and know I lost a lot of weight, but I'm not sure how much. I probably weighed 115 lbs. A year later, I had reversal surgery, which also caused chronic constipation. Again, I can't remember my weight at that time. In 2024, I had another surgery. Thankfully, the surgeon did a colon resection with no need for a bag. My weight now is 82 lbs. I'm an elderly person but still very active. Everyone tells me I look so frail, but I feel okay. It is a dilemma for me how to gain more weight, other than drinking Ensure. It is a good idea to eat smaller meals throughout the day. I wish you luck.

H. West

Avoiding Ostomy Bag Leaking | Managing Ostomy Leaks with LeeAnne Hayden

I too have a problem gaining weight! I have had my ileostomy for 2 years, weighed 115 most of my life, and am now weighing in at 92 lbs. Sometimes it jumps up to 95 lbs; that is the most I have ever gained since my surgery. I try eating and snacking throughout the day, protein shakes, you name it. I did have a heavy output, and through this site, I found out anti-diarrhea pills have helped the heavy output; however, I still can't gain my weight back! Good luck to you. 👍

Thank you for this great info. I am doing much of what you posted, but maybe eating too much sugar, thinking it will help with weight gain, and I do sweet iced tea plus lots of water! 👍

Also, not to mention none of my clothes fit anymore. 🙁

Maybe you have a lactose issue. This could explain the inability to gain weight, as every time you have dairy, you are flushing your system. Maybe try coconut milk for a while.

Not an expert, just know my body loves the idea of cheese, but then we pay a heavy cheese tax. X

• You are correct; with a high-output ileostomy, standard advice is to separate fluid intake from solid food consumption by about 30 minutes or limit fluids with meals to small sips (e.g., no more than 125 mL or ½ cup). This is to prevent "flushing" food through the small intestine too rapidly, which can increase stoma output and reduce nutrient absorption.

• However, you are at a much higher risk of dehydration and electrolyte imbalances. Because of this, the concern about "diluting digestive juices" or "washing away nutrients" is irrelevant compared to the very real and dangerous risk of dehydration.

• Most importantly, drink fluids between meals. Sipping fluids consistently between meals is the best way to stay hydrated without rapidly flushing food through your system.

• Drinking large amounts of liquids with meals can cause food to move through your stoma too quickly, leading to a more liquid and voluminous output.

• The 30-minute rule is your friend.
    ■ 30-60 minutes before a meal: Try to stop drinking most fluids.
    ■ 30-60 minutes after a meal: Again, limit fluid intake.

• This creates a "window" where the food can be digested without being rushed through by a large volume of liquid, helping to thicken your output.

• Since you need to limit fluids around meals, you can choose hydrating foods. These provide hydration in a form that moves through your system more slowly than plain water. Examples are:
    ■ smoothies
    ■ soups
    ■ purees
    ■ yogurt
    ■ custard
    ■ ripe melons
    ■ grapes
    ■ cucumbers

• Not all fluids are equal.
    ■ Water is good, but sometimes plain water can go through too quickly.
    ■ Oral Rehydration Solutions (ORS) are often recommended. They contain a specific ratio of sugar and salt that helps your small intestine absorb water more efficiently. Sipping on these throughout the day is one of the best ways to maintain hydration.
    ■ Avoid hypertonic fluids like sugary sodas and some fruit juices in large amounts, as they can draw water into the intestine and worsen output.

• It does not have to be a catch-22 to not drink fluids before and after meals while still staying hydrated. A 6-meal plan follows. This plan assumes a wake-up time of 7:00 AM and a bedtime of 10:30 PM. Meals are spaced approximately 2.5 hours apart.
Adjust the times to fit your own routine.

7:00 AM - Wake Up
■ Begin your day with 1 cup (8 oz) of water or an Oral Rehydration Solution (ORS).

7:00 AM - 8:30 AM → HYDRATION WINDOW 1
■ Sip fluids consistently. This is your first major opportunity to hydrate. Consume the majority of your morning fluids here.

8:30 AM → Stop Drinking
■ Cease fluid intake 30 minutes before your first meal.

9:00 AM - MEAL 1 (Breakfast)
■ Eat your meal. Keep fluids to an absolute minimum (only a small sip or two if necessary to swallow).

9:30 AM - 10:30 AM → DIGESTION WINDOW
■ Avoid fluids for about 60 minutes after eating to help thicken output.

10:30 AM - 11:30 AM → HYDRATION WINDOW 2
■ Resume sipping fluids consistently.

11:30 AM → Stop Drinking
■ Cease fluid intake 30 minutes before your next meal.

12:00 PM - MEAL 2 (Lunch)
■ Eat your meal. Limit fluids during the meal.

12:30 PM - 1:30 PM → DIGESTION WINDOW
■ Avoid fluids for about 60 minutes after eating.

1:30 PM - 2:30 PM → HYDRATION WINDOW 3
■ Resume sipping fluids consistently.

2:30 PM → Stop Drinking
■ Cease fluid intake 30 minutes before your next meal.

3:00 PM - MEAL 3 (Afternoon Snack)
■ Eat your snack. Limit fluids.

3:30 PM - 4:30 PM → DIGESTION WINDOW
■ Avoid fluids for about 60 minutes.

4:30 PM - 5:30 PM → HYDRATION WINDOW 4
■ Resume sipping fluids consistently.

5:30 PM → Stop Drinking
■ Cease fluid intake 30 minutes before your evening meal.

6:00 PM - MEAL 4 (Dinner)
■ Eat your meal. Limit fluids.

6:30 PM - 7:30 PM → DIGESTION WINDOW
■ First, avoid fluids for about 60 minutes after eating.

7:30 PM - 8:30 PM → HYDRATION WINDOW 5
■ Resume sipping fluids. This is your last major hydration window.

8:30 PM → Stop Drinking
■ Cease fluid intake 30 minutes before your final snack.

9:00 PM - MEAL 5 (Evening Snack)
■ Eat a small, settling snack. This can help thicken output overnight. Limit fluids.

9:30 PM - 10:00 PM → FINAL HYDRATION
■ You may have a few final sips of water if needed, but try to taper off fluids 1-2 hours before bed to minimize nighttime output.

10:30 PM - Bedtime

• During hydration windows, consistent sipping is more effective and gentler on your system than drinking large volumes at once.

• Incorporate Oral Rehydration Solutions (ORS) into your hydration windows, as they are absorbed more efficiently than plain water.

• Since you're limiting fluids around meals, include foods with high water content as part of your meals (e.g., yogurt, smoothies, soups, ripe fruits).

• This is only an example. If you feel thirsty during a "no-fluid" window, take a small sip. The goal is to manage output, not to make yourself miserable.

• This example was only to show it is possible to avoid the catch-22. Create yourself a plan that fits your wake-up and bedtime.

This is great! I will try this! I do drink fluids with most of my meals, thank you for posting this info! I am sure others will benefit from your very helpful post. 👍

U/C Crohn's. Went from 186 to 107, pre-op ileo. Had trouble gaining weight. Went to a dietitian. Ate 4 meals a day and lots of fattening foods. Love tiramisu! Got up to 153 and remained there. Warning: At 60, you can get vascular disease from pigging out. Look at poor Morgan Spurlock. My carotid is now 50% occluded, so I cut way back!

I have the same problem. I often wonder if I am absorbing all my important nutrients. I am told I am doing everything right, but at five feet tall and weighing only eighty pounds, I have to wonder.

Yes, I have the same problem. I am told I do everything right, but I have high output. I take two medications for it, but they don't fix the problem that much.

I am 5 feet tall but only weigh 80 pounds. I guess I just have to live with being skinny!