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Ostomy help

I am almost 2 years post surgery. In the hospital and for a few weeks at home I had an Ostomy nurse. Once the nurse determined that my husband and I could change the pouch and there were no major issues we were on our own. So far we have been dealing with issues by searching the internet- is this how it happens every where or is it just here that you are left to sink or swim on your own (I live in a major city)

  1. @LoisB, you should be able to contact the Wound Care office at the hospital that you had your procedure at to talk to the WOCNs (Wound & Ostomy Continent Nurses). Even though you have been discharged from home care, they can still see you at the hospital. Many major cities also now have outpatient ostomy clinics. Many of the WOCNs I know will Zoom or Facetime with patients due to COVID in order to help them work through any issues. You can also check the United Ostomy Associations of America website for a support group near you. The direct link is: https://www.ostomy.org/support-group-finder/. Many groups have continued to meet via Zoom throughout COVID.
    There is also an app for your phone or tablet now, Ostomy 101, which offers lots of tips and has virtual meetings across the US under their events tab.

    1. So sorry you weren't given more support you needed. I wanted to check in and see if you were able to get any additional support. How has adjusting to life with the ostomy been? - Jada (BladderCancer.net team member)

      1. @Lois B - Unfortunately it appears that stoma or wound care nurses are few and far between in some areas. I would suggest that you see if your health coverage has other WOC nurses or home health care who could assist. Another suggestion is to reach out to Coloplast customer service. I do not know what wafers/bags you are using but they are very helpful and will send out samples quickly. Also some patients are sent home with flat wafers and find that they actually need the convex wafers which tend to "fill in the gaps" which means we do not have a perfectly flat abdomen. A convex wafer may be what is needed if leaks are the issue. I wish you the best in this journey. I hope you find the help that you need. It does get better once you have the system down that works for you. Please keep us updated. Linda ( moderator, BladderCancer.net team member)

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