By: Carina Diaz
It’s been a year and four months since my ileostomy surgery, and I’ve been in a reflective mood about it. This was my first and so far only surgery I’ve had for my Crohn’s Disease. I had first learned about ileostomies and ostomy bags on Instagram and then later on YouTube when Hannah Witton shared videos about her surgery. To be honest, it sounded like the worst case scenario. Little did I know that years later, it was a decision I would have to make.
There was so much I didn’t know about this surgery and what living with an ostomy is really like. I didn’t know that it was reversible (in some cases) and that it’s not considered an invasive surgery. While in the hospital, I accepted a job and ended up moving to a new city a month later The first month post surgery was very hard, and I had not been well prepared by the hospital staff before being discharged. Here is what I learned post-surgery and advice I wish someone had told me:
Get the name and number of an ostomy nurse before you leave the hospital. This is so so important. I did have a home nurse come for a few days to help me get familiar with changing my bag, but after that I was basically on my own. I ended up having a lot of blow outs and skin issues and didn’t know of anyone to contact. Make sure to ask your hospital nurse or health insurance for a recommendation.
You don’t get to choose how long you can wear a bag for, your body does. One of the hospital nurses told me that some of her patients could change their bags up to once a week and I thought to myself, “That’s perfect, I don’t need to change it too often.” But this wasn’t the case for me. I have eczema, and the skin where the bag goes was not happy about it. It took me almost a full year to nail down a changing routine that worked for me and it ended up being every other day. Everyone is different and there are so many factors when it comes to how long to keep your bag on for. The only way to know is through trial and error.
There are different kinds of ostomy bags for different types of stomas. The bags that hospitals supply you with are the cheapest of the cheap. Mine were clear and seeing not only my output but also my intestine was disturbing. Thankfully there are more options out there than just cheap ones with no air filter to let out the gas that can cause a stoma bag to balloon. There are also all kinds of products to help your skin and keep the bag in place.
Your weight could fluctuate…a lot. I was underweight before my surgery and had been for several years. Post surgery, I got back to my normal weight and then some. This has been one of the hardest things about an ileostomy for me. I was finally absorbing what I was eating instead of it immediately going through me. Body image is something that I’ve really struggled with since being diagnosed with Crohn’s, and gaining more weight than I’m used to honestly hasn’t helped that.
Something that I keep reminding myself of when I got through hard things is that what I need is time. Eventually I will get through it and another difficult time will come, but by then I will be better able to handle it. Living with IBD is hard, and it’s best to be kind to yourself through it.