• Now I have some insight on CIPN, I'm worried about maintaining my ostomy.

    Asked by Juliana on Wednesday, February 20, 2013

    Now I have some insight on CIPN, I'm worried about maintaining my ostomy.

    Tank you all for your responses to my previous question! I really appreciate it. I'm learning all the Cancer vocabulary, phrases, and acronyms as I go. I'm a little worried about this CIPN, because I have a permanent ileostomy and it does interfere with my maintenance of my stoma. Does anyone else have this problem???

    4 Answers from the Community

    4 answers
    • LauraJo's Avatar

      What kind of problems are you having? Cleaning? Getting a tight seal? If you would rather discuss off line let me know & I can send you my e-mail.

      over 3 years ago
    • GregP_WN's Avatar

      Juliana, it's kind of like learning a whole new career, having cancer. We have so much to learn about, and the more you know, it seems like the less we know. It can be overwhelming.

      Feel free to ask anything of the community, lots of people here that know most of the terms and procedures.
      I wish you well.

      over 3 years ago
    • RobbieFlores' Avatar
      RobbieFlores (Best Answer!)

      I didn't have that particular problem but i did have a great ostomy nurse. Is there a nurse that is guiding you and answering your questions? I have a permanent colostomy and have tried to learn everything about it and it's gone very well for me. Anytime you want to ask a question feel free to ask. :)

      over 3 years ago
    • CrazyHarry's Avatar

      I happen to be the only "XXX" at home (for now) with both my wife and daughter having total colectomies with permanent ileostomies. My wife has a very difficult to manage ileostomy and is now getting peripheral neuropathy (non cancer related). My daughter is a paraplegic with limited upper body movement due to spinal fusion.

      Some recommendations are that first be calm, and even in the face of what can be incredible challenges, like very active ilieostomies or skin breakdown, the care is still the same. Protect the skin. Take time to make sure the area is clean and dry before placing appliances. My daughter uses a mirror to assist her which works quite nicely.

      We have been through, I think, every kind of materials to adhere. This and that, etc. My recommendation is that you use as little of what ever you use to keep the seal.

      Also, don't be afraid to ask for help from friends and family. Of course these need to be the very best friends. :)

      And like what was stated before, it's important that you have an excellent Ostomy Nurse. Although some insurance companies are balking at those.

      I'll be having my surgery in 2-3 months so I'll have my own personal experiences to share.

      Please feel free to send me a private message if I can be of any more help.

      over 3 years ago

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