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Reply to "What's your #1 piece of advice for a brand new j-poucher?"

@athena posted:

In a word, Calmoseptine. It’s the best diaper-rash ointment/barrier cream according to the ostomy nurses who helped me, and it does wonders on butt-burn. You can order it via Costco’s pharmacy (it’s over the counter, but they’ll special order it for you), or pay a bit more to have Amazon send it to you, or pay a lot more to get it at a regular drugstore.

A few things all help, though. I was torn between Calmo and patience as the best advice. It’s a big change, and it takes time to adapt. It gets a lot better over time, unless you have a leak internally or recurrent pouchitis.

1. Don’t try to go back to a normal diet immediately. Take your time, try new foods slowly, and don’t go too nuts on the insoluble fiber/seeds/nuts/hard veggies. Soluble fiber is great and will help you regulate your stool consistency, which is immensely helpful when it comes to how you’ll feel about leaving the house.

2. Sip your fluids. If you pound them, they’ll run right through you. Same for thin soups...

3. Sleep on a bed pad/wear incontinence pads to bed for a bit. Leakage is common with j-pouches (liquid stool); once you get the consistency worked out, it may happen less, but I saw a stat that almost everyone has anal leakage (joy, joy). You get over it, but it’s wise to protect your clothes/sheets.

4. The colon helps you ‘neutralize’ spicy foods. Even black pepper. The first time you eat hot sauce or chili powder or black pepper in your food, you may regret it. It took a long time for my intestine to adapt to that. And fatty foods tend to be poorly tolerated, too, in large quantities—don’t have to give them up, just have less and eat w something starchy. I couldn’t eat peanut butter or Nutella anymore with a spoon, for instance.

Tons of things you’ll learn as you go; each of us is probably somewhat different in what foods work and how soon, but it will get easier. It’s like anything else, I guess; the human organism is pretty good at adapting to changes in its environment.

I celebrated by donating my spare ostomy supplies—there are various charities that accept them, by the way... but I didn’t donate them until I got used to my pouch, just in case!

Best of luck!

I celebrated by donating my spare ostomy supplies—there are various charities that accept them, by the way... but I didn’t donate them until I got used to my pouch, just in case!

Planning for the worse! That is really smart!!!

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