Struggling with Weight Gain after Iliostomy Surgery - Any Advice?

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Alloy59
Oct 31, 2022 6:20 am

Hi everyone, my name is David. I am a 45-year-old who is close to 5 weeks out from my ileostomy surgery and no matter how much I eat, I can't gain any weight. I've actually lost 7 pounds or more since I've been home from the hospital. Has anyone else experienced this? My surgeon said I don't have very much small bowel there before my ileostomy and that I will suffer from absorption problems. I feel embarrassed and very self-conscious about seeing anyone I know.

Axl
Oct 31, 2022 6:53 am

Hello David

I wouldn't be concerned. I typically lose 30 pounds after our type of surgeries and have done it several times. It can take 3 to 4 months easily for me to get back to normal weight. You're only 5 weeks in and your body is still having a stroke about the trauma it has been through and trying to learn its new ways. For now, just enjoy eating anything you please.

Axl

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HenryM
Oct 31, 2022 7:27 am

Hah, "no matter how much I eat I can't gain any weight."  Enjoy it while you can.  I was exactly the same way following my ileostomy.  Once you gain some years, believe me, you'll gain some pounds.  Then you'll pine for the skinny days, or the fjords, if you're a Monty Python fan.  

Meadow Snow
Oct 31, 2022 9:51 am

Hey David,

It'll take some time for your body to adjust. The small bowel needs time to learn how to do the job of the large intestine as well as its normal job. You're only five weeks post-op. It takes some months for your small bowel to figure it all out. For now, just enjoy being able to gorge on whatever you feel like eating. Maybe speak to your doctor about Ensure drinks. They're a small prescription drink that contains a lot of calories. I personally really enjoyed the taste of them, but I know not everyone does. Another hot tip I learned is when you get things like milk and yogurt, get the full-fat version. If you get a reduced-fat or zero-fat version of a food or drink, buy the full-fat, sugary version instead. That also really helped me in the beginning.

And just a side note - putting electrolyte sachets/tablets in a drink of water is a really good way to keep hydrated. I still do that to this day, to make sure I'm not dehydrating. I know a lot of people use a company called Liquid IV. I use tablets called O.R.S. There are loads of different brands to choose from.

Ben38
Oct 31, 2022 10:24 am

It's normal in the early days, but as you say most of your small bowel has been removed, that will have a big impact on your output. I'm guessing that you have a high output stoma? If you do have a high output, you will have problems gaining weight. Are you on any meds or a combination of meds to slow the stoma down? How many times a day does your bag need emptying?

 
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Poopsie
Oct 31, 2022 12:32 pm

At five weeks, your body is using all the fuel you give it just to heal. But once you're six months out or so, if you still can't rebuild, have your GP look for some other cause. In my case, it was my thyroid that had gone overactive, preventing any weight gain or further recovery. Hang in there; things will get better.

Justbreathe
Oct 31, 2022 1:02 pm

I have an ileostomy and it took me well over a year to start gaining some weight back.
Enjoy eating whatever you want in the meantime and ;- chew, chew, chew. JB

ron in mich
Oct 31, 2022 2:16 pm

Hi David, I've had an ileo for 30 some years and haven't been able to gain back any weight, but like others said, you can eat all the foods you like and not worry about being overweight. And like others said, it's early on in your recovery, have patience and enjoy the foods you like.

AlexT
Oct 31, 2022 3:28 pm

There are a lot of high-calorie powders on the market that you simply mix with water or preferably milk. You can take in 1000+ calories per drink.

Alloy59
Nov 01, 2022 9:08 pm
Reply to Axl

Thank you, Axl. That is very helpful!

Alloy59
Nov 01, 2022 9:14 pm
Reply to Ben38

I have extremely high output like 2 litres a day. I meet with a surgeon tomorrow, they are going to up my Imodium dose to 25mg I think. I'm always hungry and always thirsty! I'm just hoping in time things will improve. It can be scary.

Trigger
Nov 07, 2022 7:35 pm
Reply to Axl

Can't gain weight and it's been over 2 years and have lost between 35-40 lbs. Has anyone been able to gain weight and how did they do it?

Blanca
Nov 08, 2022 1:09 pm

Hi. I have the same problem. I have had my ileostomy since 2017 and I cannot gain weight no matter what I eat or do. I did lose 10 lbs when I came out of the hospital and have never gained it back. I am lucky if I reach 105 lbs!! . Do not be discouraged.

gentlejohn
Nov 24, 2022 3:59 pm

It could take months for your small bowel to be able to change and do more absorbing. There are dietary supplements that could be easier to absorb than regular food. Make sure you and your internist are monitoring your vitamin and protein levels. B12 is the most common problem.

BagLady1955
Dec 14, 2022 9:26 pm

It is still early, however perhaps blood work could be done to check for vitamin deficiencies that might make it more difficult to gain weight. Absorption of certain vitamins only occurs in specific portions of the small intestine. A friend of mine needs to have vitamin B12 shots for life after her ileostomy because they had removed most of the portion of her small intestine responsible for absorption of B12. Good luck to you.