Anyone on here a T1D with an ileostomy? How do you approach diet for both?
Barrett
Oct 06, 2022 6:56 pm
Rose Bud 🌹
Oct 07, 2022 5:20 am
I'm T2. I know it's a little different, but I had a hard time because I wasn't a diabetic before I got my ostomy... long story. All I was told was to eat what your stomach can tolerate... which was extremely frustrating from my GP and dietician. If neither of them can help you, I'd try small things at first, then add things into your diet. What may work for one may not work for someone else. Like I've heard and read, rice and toast thicken output, but as you know, we must be careful with carbs, and unfortunately, even when I am, they run through me like water. Don't give up hope; it eventually will come, and don't be discouraged if it's mostly watery until things get figured out. That's unfortunately one of the downsides of an ileostomy, but like I said, everyone is different. Hope this helps some.
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Posted by: Karen & Stella
Fay,
I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that led to the loss of much of my small intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse - ET nurses who can help you problem-solve over time. It's been five years since my initial surgery, and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying, I would have problems. My ET nurse helped my husband and me make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two-piece high output bags and allows for continual drainage. It isn't pretty, but it has been a real lifesaver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There are a lot of great suggestions to use. I hope things get better quickly for you.
Karen
I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that led to the loss of much of my small intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse - ET nurses who can help you problem-solve over time. It's been five years since my initial surgery, and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying, I would have problems. My ET nurse helped my husband and me make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two-piece high output bags and allows for continual drainage. It isn't pretty, but it has been a real lifesaver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There are a lot of great suggestions to use. I hope things get better quickly for you.
Karen
StPetie
Oct 09, 2022 12:20 am
Rose Bud has it right, I believe. Adding things one at a time and watching the effects is really your only choice. My GI guy said, "Whatever you do, eat A not B." My endocrinologist said, "Whatever you do, eat B not A." So you're kind of on your own and have to find what works for you. I prioritize glucose control and have learned what works for me as far as the stoma is concerned. But you and I have very different GI issues, so our tolerances will likely be different. Be patient, pay attention, and you'll find a diet that works for you and that you enjoy. It's a process, but you'll get there.
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daniel902
May 18, 2023 5:09 am
I'm not a T1D with an ileostomy myself, but I can understand how managing both conditions could be challenging.
Some tips for managing both conditions include:
Eating small, frequent meals throughout the day to avoid blood sugar spikes and ease digestion.
Choosing low-fiber, easily digestible foods such as cooked vegetables, lean protein, and whole grains.
Monitoring blood sugar levels closely and adjusting insulin doses as needed.
Staying hydrated by drinking plenty of water and avoiding sugary drinks.
Working with a registered dietitian or healthcare professional to develop a personalized meal plan.