The first two months after ileostomy surgery were very difficult. Someone who had been through it before told me that the first two months are terrible, and after that it’s wonderful. That’s exactly how I would characterize my experience.
In the first few weeks after surgery, I was dealing with the pain of the surgery itself. My bum was tender and it was difficult to sit. My body was swollen, my abdomen tender, and I was on painkillers. It ‘s hard at this point to be convinced that you’re really going to be better. I had been sick for so long and none of the medications had worked, so it was hard to really have faith that my disease was gone. Until the pain was gone and I started putting on weight and feeling energy, which doesn’t happen immediately, I was just faced with this disgusting pouch hanging off my belly and no guarantee whatsoever that there was going to be a payoff.
Not only was I dealing with physical pain and psychological adjustment to this huge transformation in my body, but I hated how dependent I felt on the nurses. I was so afraid that I didn’t have the supplies I needed, and that even if I had them I didn’t know what I was doing.
For the entire first two months, every single time I changed my pouch I was convinced that I had done at least one thing wrong. The next time, I would focus so much on doing right what I had done wrong the previous time, that I did something else wrong. On top of learning this whole new process – which isn’t easy – the stoma is still changing size during those first two months, so you can’t have everything ready to go before you take your pouch off.
I was terrified that I wouldn’t measure the stoma correctly, that I’d miss an essential step in the process, that I wouldn’t cut the hole in the flange right, that my output would be getting all over the place as I struggled to get my new pouch on. Then I’d finally get everything on, and I’d think to myself, “I didn’t get it right.” Then I’d fret for the next several days, wondering if it was leaking or getting on my skin at all or whether it was going to explode off of me at some point. It’s really a psychological rollercoaster. Not only that, but at first my output smelled so bad I thought I was going to puke, and I had to put scented oils into a bandana and cover up my face to get through it. I have a friend who had ileostomy surgery, and she didn’t experience that part, so maybe it was just me. I think it was just in that first week or two, when I was probably getting rid of lots of toxins from the surgery. Anyway, I was very grateful when the bad smell abated.
By around the two month mark, my stoma stopped changing size which made it easier to have everything prepared before I took my pouch off. I was also feeling a lot more confident about the process. I knew when the best time was to change it in terms of not having much output activity. And each time I took off the old pouch and verified that in fact my previous attempt had been successful, I stressed out less.
By two months out, I was doing yoga and hiking and getting ready to start up with kung fu. The pain was gone, I felt independent again, and it truly has been great ever since. Now I usually change my pouch three times a week, which is on the high side, but because I’m so active with kung fu and yoga (including hot yoga, which involves a lot of sweat), I just feel more confident if I change it more often. It usually takes me about ten, maybe fifteen minutes to change it.