Struggling to Gain Weight After Ileostomy

Has anyone else struggled with gaining weight since having an ileostomy? I seem to lose it really quickly and cannot seem to regain it?

Do you have high output?

I empty my bag about four times a day, but I'm also on weight-gaining shakes too.

I eat loads and don't seem to put too much weight on.

Handy when I'm pigging out, but not so good if I have been ill.

I'm currently trying to get healthier and gain muscle and some weight, so I'm trying supplements and protein shakes.

Is it really a bad thing? Unless you're losing excessive weight and it's making you unwell? Erm, my weight fluctuates quite quickly; some weeks seem really slim, and then others I seem to pile it on. Diet is fairly constant too. Not sure what to suggest otherwise. Do you eat things that slow your output down? Carbohydrates, etc.? Rice, mashed potatoes?

Avoiding Ostomy Bag Leaking | Managing Ostomy Leaks with LeeAnne Hayden

Emptying 4 times a day is really good for an ileo. What did you have your ileostomy for, as that might be the reason why you're having weight loss problems?

I have been prescribed high-calorie shakes twice a day from my GP. In the first month, I gained 3 pounds, and in the next month, I lost 8 pounds.

Colonic dysmortality

To me, it's a bad thing, yes, because I cannot keep it on, and my BMI is low due to it, and yes, I do

If there are no other underlying health issues, do you eat meat? High protein? The only other thing I can think of is to try to build up fat intake alongside the shakes and light training to turn it into muscle mass slowly.

You must take in more calories than you burn or expel through output. If you eat healthy, that's great, but you need to eat more “junk” food to bulk up your caloric intake. The shakes can help, but remember they probably go through you, being liquid, much faster than any type of solid food.

G-Day Ashton,

If your photos are current, I would not bother too much about putting on weight, but if it is bothering you, then build up on carbs until you fill out and then take up a little workout.

You really have had a bad run, so I hope you can get over this.

Regards, IGGIE

Often, the culprits in the failure to gain weight are malabsorption and high output. Malabsorption can occur since your ileostomy bypasses the colon; your body has less time to absorb fluids, fats, and certain vitamins and minerals (like vitamin B12, fat-soluble vitamins A, D, E, and K). High output means food passes through so fast that your body doesn't have a chance to absorb all the calories and nutrients, although four times a day is not a lot for an ileostomy.

Assuming you are eating sufficiently, the key is to increase calories without significantly increasing the volume of food you eat and without causing a surge in output.

Your eating pattern is just as important as what you are eating:
    ■ Instead of three large meals, aim for 5-7 smaller meals/snacks throughout the day. Large meals can overwhelm your system and lead to high output.
    ■ Eat slowly and chew thoroughly. It is the first and most important step in digestion and helps prevent blockages.

Concentrate on low-volume, high-calorie food choices and adding calories to the foods you are already eating comfortably:
    ■ Fats are essential to weight gain — choose easily absorbed ones. Fats have more than double the calories per gram compared to protein or carbs.
      • Drizzle olive oil, avocado oil, or canola oil generously on vegetables, pasta, rice, and proteins.
      • Avocado — soft, easy to digest, and packed with healthy fats and calories.
      • Smooth nut butters — peanut butter, almond butter. Avoid whole nuts due to blockage risk.
      • Mayonnaise, creamy sauces.

    ■ Lean proteins — but add calories to them.
      • Choose tender, well-cooked meats, eggs, tofu, and smooth fish.
      • Cook chicken or fish in oil or sauce. Add gravy or cheese sauce.
      • Incorporate protein shakes or powders. Look for ones that are not high in simple sugars, which can increase output.

■ Complex carbohydrates
      • White pasta, white rice, oatmeal, and peeled potatoes are generally well-tolerated and provide good energy.
      • Caution with high-fiber carbs. Foods like whole grains, corn, and seeds can increase output and cause blockages. You may need to limit them, especially initially.

Manage your output because you can't absorb calories if food passes through too quickly:
    ■ Eat foods that thicken output. These help slow things down, allowing for better absorption.
      • Soluble fiber — bananas, applesauce, white rice, oatmeal, smooth peanut butter, pasta.
      • Starchy foods — potatoes (without skin), white bread, pretzels.

    ■ Foods that increase output — limit these.
      • High-sugar foods (candy, soda, juice).
      • Caffeine (coffee, tea, chocolate).
      • Alcohol
      • High-insoluble fiber foods (raw fruits/veggies, leafy greens, nuts, seeds — especially with skins).

Use oral nutritional supplements. These are a fantastic tool for weight gain without having to eat large volumes. Don't replace meals with them. Drink them between meals as a calorie-boosting snack.
    ■ Liquid supplements — drinks like Ensure Plus, Boost Plus, or Resource 2.0 are designed to be nutrient-dense.
    ■ Medical food supplements — items like your prescribed high-calorie shakes.

Finally, loperamide (Imodium) is extremely useful for individuals with an ileostomy.
    ■ Loperamide is an anti-motility agent. It works by:
      • Slowing down the muscular contractions (peristalsis) of the intestines.
      • Increasing the absorption of water and electrolytes from the gut.
     ■ By slowing things down, food and digestive juices spend more time in the shortened digestive tract. This allows for better absorption of calories, fats, and nutrients, which is directly tied to your goal of gaining weight.

Loperamide is extremely useful for individuals with an ileostomy. If you are struggling with high, liquid output and difficulty gaining weight, discussing a scheduled loperamide regimen with your doctor can be a game-changer for achieving better hydration and weight gain. If your doctor prescribes loperamide, the strategy is different from how a person with an intact colon would use it for a bout of diarrhea. 

I agree with what everyone else has said. I might add that you should eat throughout the day. Instead of aiming for three large meals, have snacks up to six times a day. If you keep eating throughout the day, then you will both even out your output and maybe even make it less, and you will add calories. Those weight gain shakes just go through you and out of your bag. There is nothing to stop them. You need to eat actual food too. Things like bread, potatoes, and protein. They say to eat some protein every four hours. So if you try to do that, it doesn't have to just be meat all day long. Eat cheese. It's high in fat and good for calcium. Swiss cheese is good for blood pressure, so I have read. Buy some Lunchables. Then you get meat, cheese, and crackers. Increase your fluid intake of electrolyte drinks too. Making sure you get enough fluid is important too, but the right kind of fluid. Truly emptying four times a day isn't bad unless you are letting your bag get really full before you empty it or you are using high-volume bags. I empty about six times a day when my bag gets about half full. I don't like the weight of a full bag. Is the consistency of your output very liquid? If so, eat things that will thicken it up, like sweet potatoes, pumpkin, bananas, and bread. Squash is another good one for thickening up output. These things might also slow down your output, giving the shakes a chance to digest and do their job.

I had the same problem. As soon as I went off TPN, I began losing weight fast, and almost 3.5 years later, I can't gain anything. I do have high output, no matter what I eat. Even when taking Imodium, it only slows it down 80% and makes it a little thicker. They did tell me to up my protein; I didn't gain any weight from it, but I did gain a little muscle mass back. I'm just wondering if you've had your thyroid checked out. Two years ago, I went from 135 to 104 in 2 months, and they checked my thyroid. It became overactive; now it's back to normal, but I haven't been able to gain anything for a while. I just got back to 125, which took about 4 months. They told me when you're sick, your thyroid can temporarily get out of whack and go back to normal.

My cortisol levels are really bad at the moment. I have a specific test next week to see if I have something called Addison's.

Well, please do let me/us know how it goes. I knew it had to do with something other than just food if you weren't gaining. I hope someone can help you. Half the time, I drink my food (protein shakes and soup). My issues with my bile ducts, kidneys, and pancreas make it hard to want to eat most of the time, but I try my best because I really don't want to go back on TPN. I've had a dietitian try and help, and honestly, the only thing that did was I was told when I can't eat solids, make sure I get some kind of high protein so I don't lose muscle mass because I've been considered malnourished for the past four years, just to finally be tested and have it come back normal for once, but nowhere near the 1800 to 2000 calories every day I'm supposed to eat. It's a struggle, and just know you have my support. Any info I can find, I'll be glad to share with you or anyone else! Take care 🫂

I had recent blood tests that came back as borderline malnourished, and it sounds like a bumpy road for you too! I hope everything smooths out for you!

It's more the fact that the GP has said I'm underweight and classified as borderline malnourished, and the fact that I am due to have surgery again. They've said it doesn't look like it would be able to go ahead due to my BMI.

And the fact that I have to drink whole milk does not help, as whole milk seems to run through me like a tap!!!

This is what my GP is trying to have me do because I am due to have another surgery, but they're concerned about my weight and BMI, meaning the surgery won't go ahead. So they're trying to make me gain weight to be healthier for the surgery.

Thank you.... I'd be happy if my issues just stay stable.... the longer you're considered malnourished, the more your body breaks down, and it can be extremely stressful.... if that point comes... just do your best. My kidney doctor gave me the best advice and said don't just focus on one part of the body... think of the whole body..... It's when I started eating more... I stayed away from certain foods because of being diabetic and having a bad pancreas and, of course, ileostomy... but started eating other foods I used to... (low-fat hamburgers... French fries and pasta again... sometimes fast food)......

When taking loperamide (Imodium) with high output, the dosage must be higher to be effective:

"Bowel transit of loperamide may be faster in individuals with short bowel syndrome or a high output stoma. This can reduce how much loperamide their body absorbs, and higher doses may be required to overcome this disruption.

Although it may vary, the usual starting dose is 2 mg to 4 mg four times a day. This can be increased by a further 2 mg per dose (8 mg per day) until the output reaches the desired consistency. The lowest effective dose should be used, although 12 mg to 24 mg four times a day may be required. This equates to a maximum daily dose of 96 mg.

Some specialists advise that doses above 12 mg four times a day (a total of 48 mg daily) are rarely required."

https://www.sps.nhs.uk/articles/using-loperamide-in-high-output-stoma-or-short-bowel-syndrome/

You've gotten some great advice here. I will just add one thing. I had the same problem as you after a few hospitalizations for blockages, when they weren't feeling me for days at a time. I finally got my ileostomy, but I was down to 85 lbs, and nothing seemed to help putting the weight back on until I added sugar to my diet. I know it's not good for you, and it was only temporary, but it worked! I naturally have a sweet tooth, so I just indulged it for a while, and I got my weight back to normal. I don't have any problem maintaining it now. Good luck.

Terry

I am naturally slim and fairly active; putting on weight is quite a chore for me. I need to make sure I don't skip meals, which I have a long history of doing. I also take 2 to 3 protein/meal replacement drinks per day; they are hospital strength as well. The upside is it works for me, and I can eat all I wish, but I have to keep it up, as weight will fall away quickly if I'm not careful.

I have the same problems too; malnourished for the surgery I need on my stoma, but I can't gain weight. Lots of complications; it's a horrible situation to be in. xxx

Yes, I'm very much the same. I had my surgery 12 months ago and thought I'd pile the weight back on like a lot of people seem to do, but it's not really worked out like that for me. I have gained about 10 pounds since then, but that was early on.

I can gain weight very slowly, a pound or so every few weeks, but as soon as I have an issue, I lose a good half a stone really fast, then have to start over, and it's so frustrating. I was given Freshubin drinks by my specialist, but didn't see much change. I've just recently switched to a very high-calorie weight gainer that I buy online and mix with milk. I've recently started lifting weights, and I think it's very slowly starting to work. I've noticed that I start to make a bit of progress when my hydration is consistent; that's something I've really struggled to get on top of since my operation, but I know it's a big factor.

👋🏼Ashton' :-)

.. how are you getting on? I hope you're staying positive as much as possible?
Also, that the potential for “Addison's” has been eliminated..

At the time of my end ileostomy op (2018), I was around 48 kg; my healthy weight is around 76 kg.

These days, I hover steadily around 69 kg :-/

To hopefully help in some small way..

* For me, it took some time for my body to adjust to its new “way of operating.”
* Shakes did/do help me; I still use them if I notice my weight dropping back down slightly.
* It also took me a fair amount of time to find the balance of when and what to eat.
* When and what I eat has an effect on my weight over a period of time (obviously :-) eating later helps with weight gain but has caused the occasional problem.. leaks while sleeping, leading to slightly broken sleep patterns to check all is okay bag-wise:-)

* Worth remembering: AN EMPTY BAG DOESN'T LEAK!

* Personally, I don't eat a lot of carbs. “I know carbs help well with putting weight on!” My diet is more protein/good fats based..
* I'm 35 yrs pescatarian.
* 🐟🫒🐟🫒🐟🫒🐟🫒🐟🫒

* Small ‘ish meals regularly throughout the day seem to be good long term.
* Certain foods affect an ileostomy output in different ways: watery/dry.. you'll find your balance fairly quickly:-)

I believe what is important to remember is..
“Our bodies don't all react in the same way.” There are variations; what works well for one may not for the other!”

~ Experiment with your diet; remember or make notes until you do remember what works well for you ~

..the “small” problem is, this takes a little time, patience, and effort..

🙂
I just spotted a reply to your question from a profile here: “aTraveler”.. along with a stack of other helpful, uplifting support..

We're all so fortunate to have this wonderful, supportive, hard-earned info, worldwide network to lean into when we feel the need :-)

..bit of a mouthful, lol..

Anyway, I'll end my ramblings here 🙂

All the best,
🙏
Paul..

Thank you for all this very helpful information. I, too, struggle to gain/maintain my weight. One thing I have trouble reconciling, though, is having multiple meals a day. The issue is hydration. I've been told to avoid drinking water during meals, as well as half an hour before and after meals. The idea is to avoid washing away the nutritional value of the food. With that restriction, eating 5 to 7 meals a day would make it nearly impossible to get in all my water. It's a catch-22.

Hi... I too have an ileostomy and cannot gain weight. Mine is also high output, so gaining weight is virtually impossible no matter what or when I eat or drink. Fortunately, my weight has stabilized and only fluctuates a couple of pounds either way, so I am happy to stick with that. My advice to your good self would be to stick to whatever your stable weight is and try to avoid keeping losing weight, or you could end up on the dreaded feeding tube.