Postby GreenLakeGirl » Sun May 23, 2021 3:37 am
Skin sensitivities to the adhesives. No real talk about how different brands may work for your skin, and how to try new styles.
Little real talk about disposable bags versus reusable bags, especially with regard to insurance reimbursement.
Doctors feeling like ostomies are a failure and a last resort.
Lack of skilled ostomy nurses.
Lack of knowledge about ostomy placement and ostomy care. Surgeons don't always do a thorough walk-through to get buy-in from patients.
Surgeons who feel like their responsibility ends with the surgery and don't follow up on the ostomy success...which is not just the surgical success, but also the quality of your life with the ostomy. This is not only due to your ostomy nurse! Surgeons should feel pride in your quality of life with an ostomy *after* you've healed from the procedure. Too many are just happy if you don't have any open wounds.
And finally? Openness about ostomies versus Jpouch. They are both called 'pouches', and I think it causes a lot of confusion. Internal versus external is really confusing when you are dealing with a new diagnosis and so much new information about cancer (or inflammatory bowel disease). Surgeons often make you feel like one is a failed option of the other instead of acknowledging that there are surgical complications that might cause one outcome over the other.
2009, age 37 with a 2yo: CC, IIIB (T4N1M0). IBD history
2010-11: FOLFOX, 12 rounds. 5 surgeries (3-step Ileal j-pouch, infection, VATS)
Currently NED.
Mom, you can go the hard way if you want, but the easy way is much easier. ~my 3yo