Ostomy: Adapting to life after colostomy, ileostomy or urostomy

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!

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.

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’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.

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

@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?

Am being pushed to have a bag hanging around my waist No help form doctors to talk to a nurse or????????? about this issue. to get some answers to questions. Just this is it lady take it or go die And how does one have this 5 gallon pail hanging on your waist & take care of 70 animals plus ride a horse competitive. No help at all from medical staff just have this done and go away CVestor

@greg68, this chronic diarrhea is obviously affecting your quality of life, both practically and emotionally. If you'd like to consider a second opinion at Mayo Clinic, you can submit a request here: http://mayocl.in/1mtmR63

I can understand why you're additionally concerned about the potential health complications that can develop as you age too. Have you considered a colostomy or discussed the potential health benefits of having one over your current situation?

Maybe see what a Infectious Disease Doc can ascertain about your condition.

Have your doctors done biopsies? That would give your doctors an idea of the status of your colon? You will still have the diarrhea with an ostomy but at least you won't have to rush to the bathroom or wear adult diapers. We have a great ostomy group here in Tucson. The members are so supportive. Hope you find out some answers soon. Take care, Annie