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Community Insight Submitted by Gali Member
Jul 09, 01:07 PM

Surgery: Why I chose a permanent ileostomy for Crohn's disease

By Andie - Gali Ambassador

Maybe ‘chose’ gives me too much credit, but now that time has passed since having my surgery, I have no regrets because it gives me the freedom to live a healthier, more fulfilling life that was not possible before.

What is a permanent ileostomy?  

A permanent ileostomy means that I have a stoma formed from the end of the small intestine, just before where it would have connected to my colon. You can either have your colon and rectum removed, or just your colon removed and a ‘detached’ rectum that hangs out and serves no purpose.

The permanent part means that I will always have a stoma and need an ostomy pouch to collect waste because my small intestine cannot be surgically reconnected inside my body, such as in a J-pouch formation.

A permanent ileostomy was the best choice for me.

Crohn’s disease, unlike ulcerative colitis, can hit any part of the digestive tract and even ‘skip’ around different areas. This means that if a diseased portion of the bowel is in contact with a non-diseased portion, it can spread over to and inflame the healthy bowel. This is why I chose to have a permanent ileostomy. By having the majority of my diseased bowel removed and then left unconnected, I gave my non-diseased small bowel a chance to stay healthy.

Now, I’m not going to say there weren’t any tears when I learned that having surgery was an inevitability. I was absolutely terrified. Terrified that I would lose my relationships, terrified that it wouldn’t help, but most of all terrified that I would despise my body even more. (I’m not being dramatic; I definitely dove headfirst into thinking this was the most apocalyptic catastrophe since a giant meteor decided to take the Dino-Detour).

I struggled. I learned. And one day, I realized that I didn’t have pain… I didn’t cringe away from eating vegetables or spend the entire day on the couch. I was healthy.

That’s when I knew that my permanent ileostomy was the right choice.  

Do I worry about having an ostomy forever?

Eh, sometimes. I worry about having to change my bag if I ever decide to get pregnant or when I become older and less dexterous. However, the years spent being in either of those two stages of life is far fewer than the time that I have gained from having a better quality of life overall. To me, that makes it worth it.

My biggest struggle living with a permanent ileostomy is my body image.

I’m going to be absolutely frank with you, dear reader, because this is probably the biggest obstacle for many people with ostomies of any kind. Having surgery that visibly alters your body composition can be incredibly difficult to adjust to. I’ve never been fabulously confident in my body image to start with, so this was especially hard for me.

After my surgery, when I was walking in the mall and saw a clothing poster of a woman in a bikini, I thought to myself, “I can’t wear that, I would never have the confidence to”. And it’s true, I probably won’t ever have the confidence to- but I’m not a fan of bikinis anyway. What I found though, was that even if I had to work a little harder, I did find clothes that let me express myself and have confidence in my body.

Rather than trashing your current wardrobe, try to reimagine it with an ostomy – my biggest secret is that I wear boys’ compression shorts under all of my outfits. They are high-waisted enough to prevent the top of the bag from ballooning over the top of my pants and they keep my bag hugged to my body without squashing or tugging on it. That little trick has allowed me to wear everything from shorts to pants to skirts to rompers, without any problem.

Another trick, as overstated as it is, is to exercise. Exercising not only wards off depression and boosts mood anyway, but it also improves your body composition which can give you more confidence in your skin – bag and all. After four years of having an ostomy, I can tell you that when I look in the mirror, yes I see a bag, but I also see a body that I know my pre-surgery self would have been envious of and I love it.

The last thing I want to mention, if you are worried about your body image and an ostomy – in the four years of having one, I have never once had someone realize that I had one without my telling them so. Not once. And I work with nurses and physicians, the people who would know what an ostomy even is (because, I’ll tell you what, the general public probably doesn’t even realize you can live without a colon, just saying).

The world will only see what you choose to let them see. If that’s you rocking it in a bikini with an ostomy, show them what you’ve got! But if that’s you just wearing your favorite outfit on a good day, then having an ostomy should not keep you from feeling and looking your best.

If I could go back and do it again, I would.

I had a unique experience in getting my ileostomy, by that I mean I had so many complications due to the severity of my disease that I ended up staying in the hospital for three months. HOWEVER, despite that fact, yes, I would have my surgery again in a heartbeat, even if it meant having to relive every part of my journey to now. Why? Simply because my disease was robbing me of years that I could’ve spent enjoying life and my ostomy gave me that opportunity back.

Since having my surgery, I’ve been able to have experiences that seemed incredibly difficult before; even something as simple as attending a barbeque took an immense amount of pain and energy when struggling through a flare. I’ve traveled to different countries, finished my degree (finally!), got married, and have been able to enjoy food for once all thanks to the freedom that my ostomy gave me.  

Having a permanent ileostomy has taken time, patience, and determination to get the hang of, but now I can’t imagine my life without it. If you’re thinking about having this surgery or it’s already in your future, do not let the fear of the unknown keep you from striving for a better quality of life. You deserve a good life and a permanent ileostomy was my key to that, I hope that it may be the same for you as well.

For more information and tips on living with inflammatory bowel disease from the medical and patient communities, download the Gali friend for IBD mobile app and she will create a personalized feed of articles just for you!

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