Support and Training for Mom near Greensboro,NC

[mgrancell]

Hello. I am new to this board and am seeking help on behalf of my Mom. She is in North Carolina and I am her only child in California.

Prior to her initial surgery in November, she was 100% independent and competent. But here is the situation now:

* She had complications with a planned colectomy which resulted in needing to open her back up, place a wound vac at the mid line and give her an ileostomy to allow the large intestine to heal.

* She was in the hospital for 15 days on TPN and IV antibiotics. Once stable they released her to a skilled nursing facility.

* Upon entering the SNF her stoma and surround were completely normal. In the 15 days in hospital, there was one or two leaking incidents which were inconvenient and distressing but did not cause any physical harm. Since being in the SNF she has had numerous issues with leakage. Just yesterday her appliance needed to be completely changed 7 or 8 times. Either they don't have nurses skilled in this type of care and/or they need to use different products.

* Her skin is raw. She is in pain. Her emotional wellbeing is suffering. I called her surgeon and he is seeing her today. However, I'm not confident he can/will do anything but either return her to the SNF or send her home with private pay care.

I've been back to NC twice. Once after her initial surgery to advocate on her behalf and ensure proper care and again after the two emergency surgeries when things seemed tentative. I feel like the only way for her to get better is for me to be there which isn't an easy thing to do with 2 busy kids. I called the CWON at the hospital but she cannot see my mom unless she is inpatient. Other resources are at clinics that she must go to.

Has anyone had a rough start with getting started with their ostomy and what did you do? Any suggestions?

Thank you.

[ot dave]

Sorry to hear about your mother's struggles. Sounds like the appliance isn't being effectively applied. With ostomies, you either get nurses who train specifically for them or gain knowledge through experience. Sometimes you aren't able to get either... And then you throw in the fact that each ostomate is unique in what does and does not work for them. Being a new ostomate, your mother doesn't have an established routine that she knows works for her. She really needs to get a consult with an ostomy nurse. Now, not only does she have an application issue, it sounds as though she has some skin issues, which impact adhesion of an appliance, so she's getting a double whammy right now.
If you can't get the SNF to get her a consult with an ostomy nurse, you might try getting in touch with a support group in North Carolina and see if they can lead you in the right direction for some resources. Here is a link where you can search for support groups: www.ostomy.org/supportgroups.shtml

Hope that helps some.

David