When they told me I’d need a ileostomy, I thought my life was over. I was wrong. It was a huge adjustment — I won’t argue with that — but it was doable. Mine was temporary, about three months while my lower anterior resection healed. Here’s what I learned the hard way so you don’t have to.
Follow the Diet. I Mean It.
They’ll give you a list of what to eat and what to avoid. Follow it exactly. I made the mistake of going outside that list early on, and it landed me back in the hospital.
Here’s why: your intestine and the stoma opening are both extremely sensitive after the procedure. Any inflammation or even the smallest obstruction can turn into a nightmare fast. That’s exactly what happened to me.
The Weekend From Hell
Shortly after my procedure, about twelve inches of my small intestine leading to the new opening became inflamed and nearly completely obstructed. It was one of the worst pains I’ve ever experienced.
And it happened over a weekend. The surgeon wasn’t available.
I laid in bed for two days drenched in sweat, curled in the fetal position, vomiting because of the blockage, wondering if I was dying. They filled me with opioids that didn’t work and constipated me further. Two days of that.
When my surgeon came in Monday morning, the fix took thirty minutes. She did a quick x-ray, saw the inflammation, inserted a flexible silicone tube, and it was like a ten-ton weight lifted off my abdomen. The nausea vanished almost immediately.
Thirty minutes. After two days of agony.
Demand Help. I Cannot Stress This Enough.
If you experience something like what I went through — don’t ask, demand to be helped. Don’t let them tell you the surgeon isn’t available or that you’ll just have to wait. Make some noise.
If you’re a quiet person, don’t be quiet in this situation. They can call in the off-duty doctor. They can bring in another surgeon. The fix exists and it can be done now. Don’t suffer through a weekend because someone told you to wait.
This applies to everything in your cancer journey, but especially post-surgical complications. Advocate for yourself like your life depends on it — because sometimes it does.
About the Noise
I asked ahead of time whether the bag would be unsightly or make any sounds. “Not really,” they said. “It mostly just outputs bile and liquid since it’s attached to the small intestine. Maybe a squeak here and there.”
Maybe for some people. Not for me.
Mine was a noisy appliance. I lost my sense of humility very quickly. The upside is that you learn to time it — mine was almost always active about thirty minutes after eating. Predictable, at least. But “quiet” it was not. There were many situations that became laugh-or-cry moments, and I chose to laugh. It was completely outside my control, and once I accepted that, it got easier.
Bag Changes and Skin Care
Changing the bag is a hassle at first. But like everything else, you adapt. You learn the rhythm — how the adhesive works, what your body tolerates, how to do a clean change efficiently.
Pay attention to your skin. I had to switch to sensitive adhesive removers and sensitive bags because my skin reacted to the standard ones. If you notice irritation where the bag adheres to your skin, say something immediately. The sooner you address it, the less it escalates. They have powders and skin prep that can seal and treat the irritation — but only if you speak up early.
It’s Livable. I Promise.
If your ostomy is temporary like mine was, know that it’s a finite chapter. It ends. The adjustment is real but it’s not permanent.
And if yours is permanent — know that many people live completely normal lives with an ostomy. There are actors, singers, public figures walking around with one and you’d never know. Permanent setups are designed differently than temporary ones, built for the long haul. It’s not the end of your life. It’s a different version of it.
Don’t become discouraged. You’ll adapt faster than you think.
— Aaron M.
Keep reading:
The CRC Roadmap 
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