Ostomy: Adapting to life after colostomy, ileostomy or urostomy

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

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.

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

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.

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!

Will do. Thanks.

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!

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.

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

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.