Ostomy: Adapting to life after colostomy, ileostomy or urostomy

It takes time to become comfortable with an ostomy — a surgically created opening in your abdomen that allows waste or urine to leave your body.

Many questions may run through your mind as you practice good ostomy care and live your life. It can help to talk to others who have been there. Perhaps you'd like to ask others questions like: What can I eat? What about leaks? Can I go back to work after colostomy? Can I ride a bike with an ileostomy? Will everyone figure out I've had urostomy surgery just by looking at me? What about intimacy?

Welcome ostomates. Let's talk frankly about living with an ostomy. Why not start by introducing yourself? What type of ostomy do you have? How's it going?

Interested in more discussions like this? Go to the Ostomy Support Group.

@busyyaya

I’m facing the same (Total Colectomy) and not sure what to expect. Will I be able to swim anymore, for how long? Have you had success with this?
And as far as eating/bag management how often does it have to be emptied? I’m wondering how to stay hydrated since I know waters absorbed by large intestine which I won’t have anymore? Seems like getting nutrients will be a challenge as well. I’m worried I will have fractures as vitamin D is absorbed by large intestines which I won’t have anymore. How do you get those fat soluble vitamins? I feel like like this will be the beginning of many more problems ahead! So scary!

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I have had a COLOSTOMY BAG now for 27 months now. I still have my ascending and transverse colons though. I have had to modify my diet. No more greasy foods.
Mainly high FIBER.
DO get tired and exhausted much quicker. Hardest part is, I can't do what I used to do! Very distressing to me
Learn as much as you can on your condition.
That alone has helped me a great deal. Contact ConvaTec Inc. for support: 1+800-422-8811. They were very supportive with me during my new transition in life 🧬💘.
But at least I am still ALIVE!!!!!! LIKE I SAID,
Do as much homework as you can. Good Luck.

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@busyyaya

I’m facing the same (Total Colectomy) and not sure what to expect. Will I be able to swim anymore, for how long? Have you had success with this?
And as far as eating/bag management how often does it have to be emptied? I’m wondering how to stay hydrated since I know waters absorbed by large intestine which I won’t have anymore? Seems like getting nutrients will be a challenge as well. I’m worried I will have fractures as vitamin D is absorbed by large intestines which I won’t have anymore. How do you get those fat soluble vitamins? I feel like like this will be the beginning of many more problems ahead! So scary!

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I had complete complete colostomy 46 years You can do anything you want to do For eating you got to try different foods and lots of water I empty my bag about 4 or 5 times a day Hope you have good luck with your like I did

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I had my total colectomy 57 years ago. You should have no limitations
You will be able to swim as much as you desire. There are no restrictions.
Some foods you eat take longer to digest. For example, when I eat my bowl of oatmeal with blueberries, apples, almond butter and sesame seeds in it every day, which has a lot of fiber, it will take 3-4 hours to digest through my system. You just have to experiment what foods work their way through your system more than others. Additionally, one has a large amount of small intestines, so its not like what you consume goes through your system immediately.

Vitamin D is absorbed in the SMALL intestines, as are the majority of nutrients. In fact, the main function of the LARGE intestines is to absorb water and electrolytes. The only vitamin you may need to supplement via a monthly injection (and you can give this to yourself at home) is B-12, as B12 is absorbed in the ilium, which you may have removed with an ileostomy.

I cannot stress enough the importance of staying hydrated. I learned the hard way. When I was working, I was drinking too much coffee and not enough water and that caught up with me over 55 ;years when my kidneys failed due to chronic mild dehydration. I was lucky enough to get a kidney transplant 1.5 years ago. So, drink more than the amount required of a person who has not undergone this surgery. I drink 2.5 -3 liters per day with electrolytes in it. With an ileostomy you lose a lot of your body's electrolytes.

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@05mick

I had complete complete colostomy 46 years You can do anything you want to do For eating you got to try different foods and lots of water I empty my bag about 4 or 5 times a day Hope you have good luck with your like I did

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Thank you for your reply. Are you able to swim and maintain good seal? If so what supplier do you use? Online or in store purchase? Trying to prepare mentally and financially

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@csjxvcsjxv

I had my total colectomy 57 years ago. You should have no limitations
You will be able to swim as much as you desire. There are no restrictions.
Some foods you eat take longer to digest. For example, when I eat my bowl of oatmeal with blueberries, apples, almond butter and sesame seeds in it every day, which has a lot of fiber, it will take 3-4 hours to digest through my system. You just have to experiment what foods work their way through your system more than others. Additionally, one has a large amount of small intestines, so its not like what you consume goes through your system immediately.

Vitamin D is absorbed in the SMALL intestines, as are the majority of nutrients. In fact, the main function of the LARGE intestines is to absorb water and electrolytes. The only vitamin you may need to supplement via a monthly injection (and you can give this to yourself at home) is B-12, as B12 is absorbed in the ilium, which you may have removed with an ileostomy.

I cannot stress enough the importance of staying hydrated. I learned the hard way. When I was working, I was drinking too much coffee and not enough water and that caught up with me over 55 ;years when my kidneys failed due to chronic mild dehydration. I was lucky enough to get a kidney transplant 1.5 years ago. So, drink more than the amount required of a person who has not undergone this surgery. I drink 2.5 -3 liters per day with electrolytes in it. With an ileostomy you lose a lot of your body's electrolytes.

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Wow- 3 liters of water you must drink non stop? Scary and sorry to hear you lost a kidney.
Does the bag stay on if in the pool an hour or more? I love to swim and that would be life changing to give up. I am sure suppliers tell you it works just want to know from someone who really swims with ostomy the truth. And I have super sensitive skin, could never tolerate any adhesives. Always need to wrap wounds with Ace & bandages. So not sure if I’d tolerate a bag adhesive. It’s giving me nightmares as I’ve had sling breakdown with any bandages

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@busyyaya

Wow- 3 liters of water you must drink non stop? Scary and sorry to hear you lost a kidney.
Does the bag stay on if in the pool an hour or more? I love to swim and that would be life changing to give up. I am sure suppliers tell you it works just want to know from someone who really swims with ostomy the truth. And I have super sensitive skin, could never tolerate any adhesives. Always need to wrap wounds with Ace & bandages. So not sure if I’d tolerate a bag adhesive. It’s giving me nightmares as I’ve had sling breakdown with any bandages

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Skin breakdown

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@busyyaya

Thank you for your reply. Are you able to swim and maintain good seal? If so what supplier do you use? Online or in store purchase? Trying to prepare mentally and financially

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I use convatec 2 piece had use a belt to hold the bag on Buy my supplies at a store

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@busyyaya

Wow- 3 liters of water you must drink non stop? Scary and sorry to hear you lost a kidney.
Does the bag stay on if in the pool an hour or more? I love to swim and that would be life changing to give up. I am sure suppliers tell you it works just want to know from someone who really swims with ostomy the truth. And I have super sensitive skin, could never tolerate any adhesives. Always need to wrap wounds with Ace & bandages. So not sure if I’d tolerate a bag adhesive. It’s giving me nightmares as I’ve had sling breakdown with any bandages

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I use coloplast extended wear wafers, they hold up.

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@busyyaya

Thank you for your reply. Are you able to swim and maintain good seal? If so what supplier do you use? Online or in store purchase? Trying to prepare mentally and financially

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Coloplast convex extended wear wafer. I buy through Cardinal Health (Edgepark Medical Supplies). They send supplies to my home.

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@busyyaya

Wow- 3 liters of water you must drink non stop? Scary and sorry to hear you lost a kidney.
Does the bag stay on if in the pool an hour or more? I love to swim and that would be life changing to give up. I am sure suppliers tell you it works just want to know from someone who really swims with ostomy the truth. And I have super sensitive skin, could never tolerate any adhesives. Always need to wrap wounds with Ace & bandages. So not sure if I’d tolerate a bag adhesive. It’s giving me nightmares as I’ve had sling breakdown with any bandages

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I need to drink that much to keep my new kidney healthy.

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