Ostomy: Adapting to life after colostomy, ileostomy or urostomy

When someone replies to my posts I get an email telling me they did and I get an email every day showing me what has been updated every day

@hanseron Okay, your comment here is not recent, but responding in case someone reading can help. We cannot find an ostomy nurse anywhere in the Chicago area that can help my mother-in-law. She is now 92, has managed her ileostomy bag and care independently for over 50 years. She is in good health physically, but is having memory issues and an ostomy nurse would be very helpful. We have not been able to find an ostomy nurse who works outside of a facility. She lives in a facility, but they do not have any staff that can help. Family is helping, but she is getting worse at handling changing the bag, and so the future is scary.

@colleenyoung
I have joined this group because I have a prolapse colon and am facing surgery. Because of my anal cancer radiation My tissue is severely compromised. With surgery I may end up with a colostomy and I’m terrified that I can’t handle it. Since my anal cancer 13 years ago I suffer with incontenance. It’s exhausting. I can’t imagine any thing more. I want to know what I’m facing if I end up with a colostomy.

@walkerlsroche Chances are you'll be so much better off with a colostomy that you'll wish it had occurred long ago. You'll master the complications quite easily...it's a short steep learning curve...and we are all here to answer your questions. There are excellent ostomy forums on FB. I live in Canada so I belong to Ostomy Canada which has been so helpful in answering my questions. At two years in, I am quite at home with it all. All best to you.

@katieliz , I am heartbroken to think of your mother in law having these problems and your trying to find help that is available in a home care facility. the care nurses from the hospital who join our ostomy monthly meeting, they don't work outside of the hospital, you may need to find an independent person to go in and help, I have heard that the facilities don't take care of ostomy patients. That it is the families responsibility. Maybe you could talk to someone at the hospital and ask if they know of an independent person who can do this for you. I wish I had more information to give you. Maybe put an add in a paper or on a website.
I have thought of this for myself. I am 78 and not sure what my future will be and am worried about care in a home if I have to go. I have no family around that can be a help to me. God Bless you and good luck

@klancee47 Hope that you can find help if you also need it at some point. I will mention to my husbands family, to possibly try an ad. That is the problem, we can’t find anyone who is trained who works independently, or is contracted out. You’d think there would be someone - (just one person!) in an area as big as Chicago - we will keep looking. My husband and I don't live there, we are 1,000 miles away, his sister has been the hands-on person managing things, but it is taking a toll on her and we’re all concerned about the future. Will be thinking of you, thank you for responding!

Here are a couple of possible resources in Chicago:
1) Nursing care for colostomy patients
https://apex-health.com/chronic-disease-management/colostomy
2) Ostomy volunteer organization
https://www.idealist.org/en/nonprofit/26ce29a84e2c48e7ad6800b694ec166a-united-ostomy-association-of-chicago-chicago
3) A continence nurse society
https://www.wocn.org/chapters/location/midwest-chapter/
I think that between these resources, you should be able to find someone who would like to make a little money on the side and who would commit long term. Verify that the facility allows an outsider non staff to come in for this purpose, otherwise she needs a facility that does. Believe me - the thought of what happens if/when I end up at a nursing home, who will take care of regular ostomy changes? Scary.