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.

All the surgeon in Milwaukee gave me the option of go away & die Even thou her report may say otherwise SHe insisted I wait 8 weeks for another MRI when most other sites say 4-6 weeks. And then after that MRI she cannot tell me the results for another 12 days Thats really great patient care Thats why I am coming to Mayos but patient care is %^&*( poor also. Keep the patient in the dark Nobody will tell me anything I am just about ready to say screw it & just go away & die Thats what everybody wants Makes their job easier

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@cvestor

All the surgeon in Milwaukee gave me the option of go away & die Even thou her report may say otherwise SHe insisted I wait 8 weeks for another MRI when most other sites say 4-6 weeks. And then after that MRI she cannot tell me the results for another 12 days Thats really great patient care Thats why I am coming to Mayos but patient care is %^&*( poor also. Keep the patient in the dark Nobody will tell me anything I am just about ready to say screw it & just go away & die Thats what everybody wants Makes their job easier

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I’m sorry you’re experiencing so much stress and not being heard. I don’t know all the details but just saw your post. I had a loop ileostomy done in Madison last January. If you don’t get answers at Mayo please consider seeing a surgeon at UW Digestive Health named Dr. Lawson. She is wonderful, caring, and very straightforward. I wish you all the best.

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thanks for the referral I will not have any 5 gallon pail hanging on my hip People are very mean and do not want to be even near a person that has a bag Besides they stink leak and and you do not have a life. I would not be able to do my regular life stuff, 70 animals need to be taken care of 4 times a day. And am not going to just sit around & wait for death I can arrange that myself Good luck to you but I have no luck

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I have an illeostomy for about 10 years now. In last couple of years I have been feeling like a lump and pain where my rectum use to be. So far after several doctors, etc. have not found much relief. Any advice would be appreciated.

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@kenc

I have an illeostomy for about 10 years now. In last couple of years I have been feeling like a lump and pain where my rectum use to be. So far after several doctors, etc. have not found much relief. Any advice would be appreciated.

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Ken, maybe repost this question in a new post? That way it would be seen by more eyes (I think.) And hopefully someone can give you advice!

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@cjay

Ken, maybe repost this question in a new post? That way it would be seen by more eyes (I think.) And hopefully someone can give you advice!

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Will do. Thanks.

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@cjay

Ken, maybe repost this question in a new post? That way it would be seen by more eyes (I think.) And hopefully someone can give you advice!

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I tried to post it as an original statement, but was told I already posted the same message previously, and recommended I contact the moderator to resolve the issue.

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@kenc

I have an illeostomy for about 10 years now. In last couple of years I have been feeling like a lump and pain where my rectum use to be. So far after several doctors, etc. have not found much relief. Any advice would be appreciated.

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@kenc, you can't post a duplicate message. We do this to prevent spammers from spamming the community. If you start a new discussion, add a bit more to your post and it will go through.

I wonder if your question is related to this discussion:
- Rectal Stump Mucus causes extreme pressure and discomfort (no pain) https://connect.mayoclinic.org/discussion/rectal-stump-mucus-causes-extreme-pressure-and-discomfort-no-pain/

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@hanseron

Total Colectomy.  The attack happened so fast that I didn’t have time to worry.  I was rushed to the hospital and surgery was performed within hours.  Luckily, I had a great GI surgeon who had previously performed the operation successfully.

 I was in the hospital for about 3-4 weeks and at home recovering for at least a month and a half.

 

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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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@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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