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7 Things I've Learned From Ileostomy Surgery And Recovery

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By Sarah Crotti @sarizabeth

It's currently about three and a half weeks post-surgery. Hard to believe it's been so long. I don't remember everything that happened in order (and quite frankly don't want to write about everything I do remember). Here are some of the most important things I'd like to share about my surgery and recovery.

1. No matter how ready I thought I was for ostomy surgery, I still lost it.

My first meltdown came in the hospital after the horrible catheterization incident (aren't you just dying to hear the full story?). I was so upset that the nurses ended up giving me Ativan to calm me down. The meltdown subsided temporarily, but started up again later when I started bleeding in a very special place.

Bleeding and passing some sort of tissue was terrifying. Apparently something may have been bumped or knocked around during surgery, the medical staff said, which really helped my mindset. Oh, and a night or two later when my bag leaked twice during the night, I definitely panicked.

2. I had some unusual side effects that I wasn’t warned about.

I guess the random tissue passing could fall under this one as well, but speaking of tissues... my body stopped being able to sneeze for about three weeks post-surgery.

Every time I would start to sneeze, my body would internalize it, as if it was sucking in the sneeze. I don't know if it was my body's way of trying to protect itself from any further pain, but it sure was interesting.

3. My biopsy report was very, very interesting.

As my surgeon told me before the procedure, there are some things you really can't see until you're "in there"... or until the offending parts are out of your body and being studied carefully. Prior to my surgery, my diagnosis had floated between ulcerative colitis and indeterminate colitis.

My biopsy showed that I absolutely made the right choice, as even though I appear to have ulcerative colitis, my anal canal was also affected. I didn't know that was possible -- or that my appendix could be affected too, which it was.

4. Ostomy nurses have become my best friends.

Although I was helped by a lot of wonderful nurses during and after my hospital stay, there was no one more helpful than my surgery clinic's ostomy nurse. I had a ton of problems with leakage and skin irritation right after surgery.

She helped me in the hospital, via email while I was at home, and during an office appointment last week. I'm now trying a new system and haven't leaked at all in the past few days (fingers crossed...).

5. My house is starting to look like a medical supply store.

Not only do I have the supplies I left the hospital with, I have my first order of supplies (which came in a massive box) and two starter kits from various companies. Eventually this will settle down, but right now I'm still figuring out what works and what doesn't.

6. Don't be offended if people act like ostomy surgery is a bad thing.

While most of the people who know me understand why this surgery was actually necessary and a step in the right direction, most people who don't know much about it will think that having an ostomy is a disaster or something that needs to be kept quiet. Don't take it personally.

7. Ileostomy surgery was the best thing I've ever done in my life.

Not necessarily the experience itself, which wasn't anywhere near as fun as, say, a beach vacation or baseball game... but the end result. I'm starting to feel like myself again. Years of struggling with this disease made me feel like I’d been replaced with a shell that vaguely resembled me, but I'm back now.

Even while recovering, I feel a million times better than I did prior to surgery. Seriously.

This post originally appeared January 16, 2016 on