Ostomy: Adapting to life after colostomy, ileostomy or urostomy

@cvestor, when you go to your appointment at Mayo Clinic, talk about your options with them. An ostomy may not be necessary or it may be temporary. If you do need an ostomy, talk to your team about your activities and lifestyle. Ask questions about getting back on the horse and how soon you can do it.

Given that you are a competitive rider (wow!), you are likely in really good shape. That will serve you well for recovery from treatment. What type of riding do you do?

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 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.

@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/

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!