Ileostomy Days // 6 Tips for living with an ostomy

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1. Invest in some high-rise pants.

I love jeans — I could wear them every day. I almost do wear them every day. So, after surgery I had a hard time figuring out what to wear. I stuck to mostly yoga pants and sweats early on, which seems to be pretty typical, but even after trying on all my old clothes I was striking out. Everything sat on or just below my stoma, which poses some problems. I bought a belly band and tried various configurations, but in the end the fix that made the most sense to me was finding pants that came up completely over the appliance.

I’m a low-rise kind of person, so my wardrobe didn’t include anything that might work. I ended up dropping some money on two pairs of these high-rise jeggings from Kohl’s — a dark blue wash and the black (the black version is a bit more fitting than the dark blue). I didn’t feel too bad about shelling out the cash as I may want to avoid things sitting across that area for awhile after my reversal and I’m hopeful I will be able to wear the black pair even after I’m healed.

2. Everyones routine is different.

And sadly, you have to figure it out on your own. I’m glad for the home care I received — all my nurses were great, but during my first week home there was a stretch where I was changing my whole appliance every night due to leaks. I had to try different things because I was desperate. When I finally got it to hold, I tried not to deviate. I believe my issue was cutting things too small, but I had to figure that out on my own. I was always nervous for a little while after a bag change, even if it went well.

3. Ivory soap is boring and oddly hard to find, but it seems to work.

I tried Johnson’s & Johnson’s baby shampoo and Dr. Bronner’s castile soap before settling on plain old Ivory. I’m not sure soap was the culprit of my issues, but Ivory was what I was using when things resolved and I figured I’d stick with it.

However, I ended up with an 8-pack and I have no idea what I’ll do with the other 7 bars. Why does bar soap last an eternity?

4. Heat

If you use a barrier ring, you’ve probably noticed prolonged handling makes it pretty gummy. This is good. An ostomy nurse told me to get it warm in my hands before applying it to my skin, but there are other things I could be doing than clutching that thing. So I stick the barrier ring, in its package, in my armpit while I do other bag change prep.

On a similar note, once I have it on my skin and it’s gone through some firm pressing, I warm it all up with my hair dryer in hopes it adheres even better.

5. Ostomy belts can give you confidence.

Not a wrap, but a belt the supply companies make that hooks into the tabs on your bag. After all the bag changes that first week, I was a little stressed out about sleeping. I would wake up and check things constantly, which meant my sleep was pretty awful. I asked an ostomy nurse if she would help me order a belt and she pulled one out of her work bag. (This one). This also leads me to…

6. Ostomy nurses are awesome.

I always felt better after a visit from an ostomy nurse. Ask them questions! I started keeping a little notebook handy in the kitchen, where I spent most of my time, and whenever a random question would pop into my head I’d be sure to jot it down for my next visit. I even took a photo of my stoma during a bag change when something looked a bit off and I knew I wouldn’t be doing a change when my nurse was there. Don’t feel dumb asking a billion questions — you can’t be expected to know everything right away and you’ll feel better getting someones opinion. Trial and error isn’t always fun and if you can avoid it with some solid advice why wouldn’t you?

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4 thoughts on “Ileostomy Days // 6 Tips for living with an ostomy

  1. There are some great tips on your list. When I change my wafer, I heat it up with the hairdryer before I put it on. It works perfectly! I get 9-12 days wear time .. easily.

    Hi! I”m Janie, by the way! I just started my own blog on Saturday. I know absolutely nothing about blogging so it’s gonna be an interesting ride! ha!!

    • Thanks Janie! 9-12 days is awesome! I was never brave enough to go more than 5 days without a bag change. That first week of changing it daily really made me paranoid.

  2. Nice tips!! I might check out the belt you have because the one sent to me was so big it’s about five inches too wide on the smallest setting, haha.
    Also is there a reason you had to switch soaps? Was it irritating the skin around the wafer? I’ve just been using whatever is in the shower, I think some liquid Olay, but I have noticed some pink bumps popping up under where my wafer-sticker is. I’ve been attributing it to the swampy heat lately.
    Anyway, I dig your blog and just started one of my own if you’d be willing to check it out (: the Internet has been great for meeting people in similar situations with this ostomy deal.
    -Harley

    • Thanks Harley! I think the belt ended up mostly being a confidence boost, but it was especially nice right after a bag change.
      Changing soap was part of trying to figure out why my barrier ring was only lasting 24 hours. When things finally started to hold, Ivory just happened to be what i was using, so i kept that routine.
      I would also get bumps! And oh man would it itch under the wafer, too. Mostly where my skin needed to flex more with movement. Not fun.

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