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Nov 29, 2019

Keeping My Colostomy - Weighing Risks & Choosing Life

This topic is about someone who has decided to keep their colostomy due to the risks associated with surgery while on prednisone, a medication they need for severe psoriatic arthritis. Here are some key points and advice shared in the discussion:

- The decision to not reverse the colostomy was made after consulting with a surgeon. The long-term use of prednisone increases the risk of complications if the bowel were reconnected, which could lead to emergency surgery and another stoma.

- Attempts to reduce prednisone intake led to severe inflammation, confirming the necessity of staying on the medication at a dose of 7 mg per day. Despite this, the person feels healthy and prefers to avoid further major surgeries.

- They have found a practical solution for travel by importing ostomy disposal bags from the USA, which are effective for cruising and caravan trips. Although shipping to Australia was more expensive than the bags themselves, they use affordable dog-waste bags at home.

- Prednisone is the only medication that provides significant relief for them. Other medications tried without success include Methotrexate, Enbrel, Humira, Simponi, Cosentyx injections, and Xeljanz. They are curious about Otezla and its availability in Australia.

- Even with prednisone, they are about 80% pain-free but experience side effects like thin skin and bones.

- Community members support the decision to keep the colostomy, emphasizing that it is a personal choice and commending the informed decision-making process.

- There is a suggestion to explore additional treatments for psoriatic arthritis, including newer medications like Cosentyx, Otezla, Humira (with a new citrate-free formulation), and Simponi Aria. Revisiting biologics with a doctor is recommended as treatment options have expanded.

- It is important to be cautious with prednisone, as long-term high doses can cause significant harm. Keeping the dose low, as the person is doing, helps limit damage.

- For disposal bags, imported ostomy bags are useful for travel, while dog-waste bags are a cost-effective alternative for everyday use.
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