Crohn’s Update: Life as an Ostomate – What I’ve Learned So Far

Well, it’s been a little over a month since I became what is known as an “Ostomate.” This is a person who’s insides have been altered to create a new opening for his or her intestine to empty through (aka a stoma).

Hopefully, to assist the few other new ostomates who may stumble across this blog here are a few things I’ve learned so far. Some the doctors, nurses and dietitians warned me about. Most, they did not:

No matter how careful you are, no matter how often you empty your appliance, you will have accidents. It might be a leak or a blowout – but it will happen.
Some of these will occur at an inopportune time like work (once), before a social function (once), or in bed (three times so far).
Invest in a mattress cover. Don’t skimp on this. I got one that’s breathable and noiseless. Sheets can be cleaned. Mattresses, not so much.
Have emergency kits on hand in your car and at work (a pre-cut appliance, powder, solvent, whatever you need to make a change). I also have spare underwear hidden in my office.
Follow the doctors’ and nurses’ orders. I know, this should be a no-brainer, but it’s worth repeating.
Be patient. It takes a while to adjust to life with your new friend.
Try a pouch support of some kind. I have a band that I slip into with a built in pouch. Check on line there are several styles out there.
Guys, suspenders are better than belts.
Chew, chew, chew. The stomach is an amazing organ and very efficient at breaking down what you eat. But it can’t do it alone. Avoid “chunks” and chew carefully. Trust me on this.
Share your story with friends and family. My first instinct was to not let people know what I was going through. But, there are more of us than anyone realizes. It doesn’t help to keep it a secret.
Red dye is forever. Before you panic because you think your bag is filling with blood, take a deep breath and think, “what did I eat?” One popsicle or glass of Hawaiian Punch can put a very quick scare into you.
Having stated the above (#9), remember it’s okay to be discreet. I don’t tell everyone I meet that there something different about me.
You are going to learn a lot about how your food is digested. This can be interesting and disturbing at the same time. For example: fish smells like fish going in and coming out.
Try to focus on the positive of your situation. Is your pain from Crohn’s, Ulcerative Colitis, or whatever issue gone? Hemorrhoids cleared up? And I bet you don’t miss having to strain to relieve yourself anymore.
Don’t focus on what’s changed in your life, focus on what’s the same. Get back to your normal routine as quickly as you can and your energy allows. Remember, your life didn’t change – only your plumbing did!

Don’t get me wrong, I have my moments of despair and depression, too. I have times when I hate that this thing was done to me and that now I’m not “normal.” But, I then focus on why it was done – literally to save my life – and that perhaps I was spared by God for a greater purpose. I just need to figure out what that is.

You know, like everyone should.

Onward!

P.S. – you’ll also get really good at estimating how many milliliters of liquid there are in any container. You know why…