Weight Loss Challenges After Ileostomy: Seeking Tips

Hi everyone,

I'm new to this great forum/group 👋

I had my permanent ileostomy in April 2024 after living with ulcerative colitis for 22 years. I've never been slim, but I'm now at my heaviest I've ever been, after putting on over 3 stone since my operation last year! My GP has got me signed up with a gym/PT, but I'm struggling to get to many sessions due to work, childcare, and overwhelming fatigue.

I just wondered if it's harder for those with ileostomies to lose weight? Any handy tips for weight loss, please? I just feel hungry all the time!

Hi Brummy, Welcome to the site. I have an ileostomy too, and have found no difference in maintaining, losing, or gaining weight. Sorry, but there's no magic bullet. What I would say, though, with an ileo, is it's better to eat several small meals throughout the day, rather than three big ones. Probably the best way to avoid eating is to just keep busy and active, which is good for you and hopefully helps keep your mind off food. Good luck!

Terry

Are you on any meds that can make you gain weight? I live on steroids, so I put weight on very easily. Keep a food diary; write everything down that you drink and eat, including naughty snacks that we like to forget we're having. Then look at your diet to change to healthier, smaller portions. Are you comfort eating or just eating more now that you're well enough to do so? Look on YouTube for loads of workouts you can do at home and go for more walks with your children.

Eat small meals frequently. That way you will feel like you are eating more because you are eating more often, but make them small meals like snacks instead of three big meals.

I think it can be hard to lose weight with an ileostomy or without. Losing weight is much harder than putting it on.

It's hard.... but you gotta eat much less and increase your activity level. After my ostomy surgery, I changed what and when I eat. No more fried food, junk food. I cut way back on candy, breads, no more cokes. Most days..... I only have an Ensure protein shake for breakfast. Nothing for lunch. Then salmon, chicken, or steak for dinner.... with a little mashed potatoes and rice. No rolls or butter. There are days I'll munch a little chocolate.... have breakfast, then an Ensure for dinner. I walk and bike ride a lot. And sip low-calorie hydration sports drinks during the day.

I lost 66 pounds during my medical adventure. Now, 2 years later, I gained back 30 pounds and have maintained it. Not easy... 'cause I love candy and junk food.... but enjoy being skinny more. My wife thinks I'm an alien... 'cause I eat so little.

My Ostomy Journey: Jearlean | Hollister

I have a colostomy, but I can relate to feeling hungry all the time. I am only on a low-residue diet, so my usual "go-to" of raw carrots and such is out. With an ileostomy, I think that's out for you too.

Try increasing protein and fluids to feel more full. I've been drinking a lot of decaf coffee in the mornings, which helps curb my appetite. Then, I eat Greek yogurt and protein drinks in the afternoon. The only solid food I eat is dinner, and it's helped me stabilize my weight.

G-Day Brummy,

It really is just as simple as not eating as much. I know that sounds hard, but you know it's true. I lost weight by the simplest thing: using a smaller plate; you can't fill it as much with food. As for exercise, I bought a pedal machine, and you can pedal away as you watch TV. Find a hobby to take your mind off food. You're too young to be putting on weight that you can't control.

Regards, IGGIE

It is hard to lose weight but doable. Try eating 1/2 of your usual portions of food. Since you work and are raising children, you need food for energy, so do not starve yourself. Make your snacks proteins or fruits and vegetables. Good luck.

Hi Brummy, welcome to the site. Lots of good advice here, but I have just the opposite. I can't gain weight no matter how much or how often I eat and snack.

Hi,

I have had my emergency ileostomy for 5 years, and I have always been small (5'2", 105), but now I struggle to get beyond 95 lbs!

I totally feel the constant struggle with being underweight (physically and emotionally). I want to be a healthy 100.

You seem to be the only person with this problem—thank you so very much for sharing!!!

I really do wish you all the best luck 🍀

Tiffany

I was thinking the same thing... I haven't been able to gain anything, and I eat fast food and everything else. I can't get past 125 lbs over the last 3 years. They tell me not all my nutrients are being absorbed, and I should be eating 100 grams of protein a day. I'm lucky if I get 50 to 60. Some days I eat more than others. I guess it really depends on what else we have going on with our bodies other than the ostomy. I also have CKD and bile and enzyme problems.

I'm with Ron—can't put weight on and am always hungry.

Hi

I lost around 9 kilos during and after the operation and have put on a couple since. I don't have a huge appetite now and don't often feel hungry, but I do try to drink lots of water. Maybe water or fluids would lessen your appetite. Do you not feel uncomfortable if you eat a lot as I do?

Hi Brummy! I too have struggled with weight gain after surgery. I've been focusing on losing weight. I used to be a personal trainer, so I know what I need to do, but putting it all into action has been some work on my part. Diet is the biggest factor for me. Eating lots of lean protein and healthy carbs rather than processed stuff. Also, I'm moving more...doing more walking, bike riding, and weightlifting. We can do this!

I sympathize with you. I have an ileostomy, and I am also hungry all the time, and that makes it very difficult to lose weight. One health coach told me that with my height, body weight, and age, just to maintain, my calorie intake should be 1,100 calories per day. That is only to maintain. So, in order to lose weight, I have to eat less than that. That is hardly anything. Others here say that it's easy to lose weight by doing this and that, but it's not for me. I need to lose at least 20 lbs. and don't know how I am going to do that. My endocrinologist says to eat fruit and vegetables. But that's impossible to eat much of those because they will and have sent me to the hospital with a blockage. Mainly, I am trying to avoid carbs and sugar and eat more protein. If you find a way to lose the weight and not be hungry, please let me know. Good luck.

Why don't you go walking or even running? If the food's not helping, then your only other way is exercise. I bought a stationary bicycle machine, and I can pedal away while watching TV.

Regards, IGGIE

1,100 calories? Yikes! You must be tiny.

I'm on TPN and limited to that many calories in addition to my TPN. I find it hard, but it isn't my only source of calories. I limit myself to coffee, yogurt, and protein drinks during the day, then eat a sensible dinner. And that's barely maintaining my weight.

Hi there, I am on a journey with Gasttex, a daily subQ injection to help with absorption in short bowel syndrome. I have been steadily losing weight! I also use "Berberine" and 1/4 teaspoon of baking soda in my first cup of coffee every morning, as recommended by the kidney doc.

Hi Judi, I've been plagued with kidney stones for a long time and haven't heard of that treatment. What is berberine?

Berberine is a natural supplement with some evidence of benefit primarily in reducing cholesterol, reducing high blood pressure, and improving gut health and bacteria. It is also touted for weight loss. There are no good scientific studies to support that claim, but it does help with blood sugar a bit.

I can find no evidence that it helps with kidney stones. It might improve kidney health, though.

I use potassium citrate supplements, and that seems to ward off kidney stones. Though I've had a few stones form in my urostomy bag... they must have formed there, as there is no way in hell those things passed without pain. A couple appeared too large to pass through my stoma. Anyway, I'm trying to say that I'm not sure if the potassium citrate works or if I've just been lucky.

Hi Brummy, I've been the caregiver for my wife's ileostomy for just under two years. Keeping your weight stable makes maintenance easier, for sure. I wondered whether the shortened time for food to stay in the body might affect the absorption of needed nutrients. I thought maybe that was why my wife stayed hungry, even though we are on a feeding tube that mathematically showed she was getting enough to eat. We added Loperamide (Immodium) to slow things down and help reduce water loss, and that seemed to help. If you aren't on tube feed, consider supplements that have the minerals and vitamins you need, not just protein. As somebody else here mentioned, smaller, more frequent meals also seem to help. Good luck!!

Hello, it is and always has been a struggle to keep weight off for me. After my emergency surgery just about a year ago, I spent about seven weeks hospitalized and lost over 50 pounds due to my digestive system not working. After regaining my health and the ability to eat, I've been putting weight back on. I think some of it came from just being happy I could eat again. The other part of it is waking up three times a night for emptying, and this sleep disruption affects your body's ability to lose weight. Then there is yet another new factor of getting back to work for five or six-hour shifts. I don't eat because I don't want to activate an outage, and I'm anxious and uncomfortable about emptying when I'm not at home. I don't know; it's a bad cycle. Any advice would be helpful. How do people with ileostomies work full time? With fatigue from sleep deprivation and the extra needs throughout the 24-hour period, I am feeling doubtful that I'll ever be able to return to a full-time position. A little off topic, but just really wondering how people are dealing. I want you to know you're not alone with the weight issue.

I went through a period, after several surgeries and hospitalizations for bowel obstructions, when I went down to 86 lbs, and I couldn't seem to gain anything. What did it for me was sugar. It's not good for you, and not a long-term solution, but adding sweets to your diet might just get the weight back. If you like sweet things, indulge yourself. It worked for me. Now my problem is controlling my desire for sweets!

Terry

Deja vu! Was 186. U/C Crohns wasted me to 107. Post up was a struggle to put on weight. Got bilateral kidney stones from not hydrating properly. I eat 4 small meals a day. I eat a big lunch when possible and snack for dinner. Instead of getting up in 3-4 hours to empty, I can go 6+ and have a great night's sleep.

From experience, it may be a good idea to talk to your doctor about thyroid function. I gained 100 pounds over 5 years without an increase in calories before the blood test finally showed my thyroid was underactive - a radioactive scan would have shown it much sooner. Check out the symptoms for thyroid disease/pituitary disease - in hindsight, I had all the symptoms.

Good advice!

Terry

That is a side benefit to eating a lot less.... a lot less comes out. I sometimes go 2 days with hardly any output. It's great. I don't have to drain the bag and use fewer bags and deodorizer.

Thanksgiving and Christmas, I munch more food.... and the bag is empty 3 times in a day.