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Oct 07, 2022

Starting Chemo with Ostomy Bag - Need Advice

Starting chemotherapy when you already have an ostomy bag can feel overwhelming, but knowing what to expect and having some tips can make the journey a bit smoother. Here’s some advice and insights shared by others who have been in a similar situation:

1. Side-effects to watch for:
- Diarrhea and increased output might happen, so keep an eye out for dehydration, loss of electrolytes, malabsorption, and irritation around the wafer.
- Nausea, changes in taste, and appetite swings are common. Some find comfort foods like grilled cheese sandwiches and regular Coke help settle the stomach.
- Fatigue tends to build up over time, so plan for extra rest.
- If your treatment includes oxaliplatin, you might experience cold sensitivity in your hands, feet, and face. It's best to avoid cold drinks and objects.
- Hair loss can occur depending on the drugs used, though 5-FU alone rarely causes it. Radiation might lead to localized hair loss.

2. Access for the drugs:
- Many recommend getting a port implanted for comfort and to protect your veins, instead of using arm IVs repeatedly.
- Some people receive weekly 5-FU injections or use a 48-hour home pump. Make sure to clarify which method you will be using.

3. Ostomy-specific pointers:
- On challenging days, expect faster and looser output. Empty your pouch more often and carry extra supplies.
- A good wafer seal is crucial, especially when your skin becomes more fragile. Some people apply a skin-prep film and an extra "cement" layer to prevent leaks during activities like swimming or gardening.
- If your skin becomes sore, seek support from a stoma nurse promptly.

4. Comfort at the infusion center:
- Infusion rooms can be cold, so bring warm clothing or your own blanket.
- Pack snacks or lunch, water, books, magazines, headphones, a phone charger, and anything else to help pass the 3-4 hours.
- Nurses are a great resource, so don't hesitate to ask them any questions.

5. Nausea and bowel medications:
- Get prescriptions for anti-nausea drugs in advance and take them even if you feel fine initially.
- Keep loperamide (Imodium) handy in case of uncontrolled diarrhea.

6. Immune protection:
- Chemotherapy can lower your resistance, so try to avoid crowded indoor places, especially during flu or COVID waves.

7. Mindset and support:
- Seeing others in the infusion room can remind you that you're not alone.
- Reach out to fellow patients or online communities for moral support. Some people even offer personal email contact for support.
- Many have emphasized that life does return to normal, with people being cancer-free for 8, 20+ years after similar treatments.
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