As the summer is coming to an end, I still can’t believe the progress I’ve made with the way I feel about my ostomy. When I went to the Cleveland Clinic on that fateful Thursday, looked the nurse in the face and told her that “I wasn’t going anywhere with that fucking bag,” to now showing my closest friends my ostomy, I’ve come such a far way.
Being a girl with an ostomy is tough. I miss my tight tops and my jeans, but lets face the facts. Going to the bathroom 60 times a day vs. eating whatever I want and having to wear leggings and cute baggy t’s for a few months, it’s not difficult to choose the winner. Basically life vs. death. I pick life. Thankfully fall is coming and big sweaters are in this season. Perfect.
Trust me, I still have some break downs. Those are tough and its hard to pull yourself off the emotional roller coaster. Some people prefer “kum by yah.” This is TEMPORARY. That’s my new mantra.
I’ve been talking with a girl who is basically the same person I am and she has bravely decided to go forward with the surgeries. UC sucks. It’s a liar and a thief, like a bad boyfriend. But with surgery comes victory. She had some really smart questions that I wish I had the answers too when I was going through the process, quickly preparing myself in a short 3 days to have my colon removed.
After surgery, you finally can sleep again, any way you want, even on your stomach. I do every night now. It definitely beats the fetal position. Unfortunately, you do have to change your wardrobe for a few months. Try to highlight the other good parts of your body. Wear leggings that show off your legs and butt. Trust me, guys love a good butt 🙂 Find cute, flowly tank tops or t-shirts. When you wear a flowy top, no one knows you have an ostomy, except for you.
One of the greatest pieces of advice that the ostomy nurse told me before my surgery was that you aren’t going to be walking around with a stamp on your forehead that says “ostomy.” NO ONE will know but you and the people you choose to share with. I never thought I’d be showing anyone but my parents, of course. Now I proudly lift my shirt and show my close friends, who are more interested than disgusted like I thought they’d be.
I’m not going to lie, the bag they make you wear after surgery is gross. It’s see through and the nurses have to help you empty it and measure the contents. I would cry thinking how gross and this is truly awful, just like I knew it would be. But once you gain your independence, stand up and hold your head high it is not even close to as bad as you think its going to be. The flesh colored pouches I wear are so easy. I take them off, throw them away in a gray plastic bag. Soooo simple. I really only have to change them 5 times a day at the most.
The fact that I can now eat whatever I want is the best part about the surgery. I missed coffee and caffeine so much! There are a select few things that are still restricted. I am now lactose, which is fine, I’m used to not being able to have lactose products anyways and there are so many great substitutions! Alcohol is still tough for me, it makes my stomach hurt. But honestly, all I care about right now is being as healthy as I can. My next surgery is around the corner and I want to look and feel my best for it. Salad or any kind of lettuce is tough too, which sucks when you are dieting to try and fight off the steroid weight. I can eat it, its just hard on my stomach. Nuts are off limits, which I don’t mind, and so are shellfish? Which is weird to me, but oh well! That list is much shorter than it was 10 weeks ago when all I was eating was bagels, jell-o and Graham crackers. Truthfully, I was FORCING myself to eat. I remember watching my hands shake as I brought the food to my mouth as I talked myself through chewing. Now food is fun again!!
Does it make you smell? Like the intelligent Joe Richardson was so kindly stating, ostomies make you smell. Ummmm, I have an ostomy and I smell pretty damn good. Unless you are a filthy pig who doesn’t care for your body the right way I promise, you’ll probably smell better than before your surgery. Having this temporary attachment on my body right now makes me want to care even more for myself. I clean and take care of it the way I was taught. I shower normally (the bags are waterproof) I can still take baths and even go swimming.
Is caring for the ostomy hard? It can be. Changing the flange (the part the pouch attaches too) is tricky and honestly, annoying. I’m still getting used to the long process. I try to put myself in a good place before I do it. They tell you to do it in the morning, but I like to do it late at night. I light a candle, try to relax and get into a mode. There are a lot of steps involved, including seeing your intestine sticking out of your stomach, which is still scary to me. Once it’s done you feel SO much better. You need to take care of your body during this process. If you need someone to help you during this that’s fine. I personally preferred learning how to do it by myself from the get go. The ostomy nurses that come and teach you care after surgery are AMAZING. I changed it myself while the nurse watched me 3 days after my surgery. I’m a 24 year old adult and it was time I took responsibility for what God gave me to deal with. I still cringe on the days I have to do it (every 5-6) and in fact, today is one of those days. But I tell myself to buck up and get it done.
Can you work out? Working out has become such an important part of my daily routine. 3 weeks after my surgery I was DETERMINED to get back in the gym. I’m still struggling with the steroid weight, which has honestly been harder than the ostomy itself. I am not an over weight person on the norm and right now I feel like I look that way to people. It’s something I have to get over. The steroid weight will fall off naturally and exercising doesn’t hurt. It has helped my healing process and helped me regain some of my self confidence, which I am still working on. I’m now doing sit-ups, push ups, running, you name it, I can do it. Oh, and I am still using shopping as a form of cardio, which doesn’t include sprinting to the nearest bathroom anymore.
Intimacy? Honestly, that’s the tough one. I haven’t even been THINKING about sex for almost a year. When I look in the mirror I still don’t see MY body, which is difficult. I still have a lot of learning and appreciating to do for myself. Normally, I have a very flat stomach and have always thought it was my best feature. Now that it’s still swollen from surgery and prednisone, I have trouble finding MYSELF sexy, let alone my boyfriend thinking I am. I miss my confidence and I’m working hard to gain it back. Every day before I shower or get dressed, I force myself to look in the mirror and appreciate the GOOD features I have right now. I’ve been working out my lower body pretty hard, since I’m wearing leggings all the time, so I try to focus on the fact that my butt and legs look pretty good 🙂 When you feel comfortable enough, sit down and explain to your significant other that sex and intimacy isn’t what’s important right now. Get back to the basics. Go on dates, go out to EAT!!!! Just spend time together enjoying each others company. I’m sure they’ll appreciate not having to sit alone while you spend most of the time in the bathroom. It’s crucial to love yourself no matter what and girls are going to struggle with that when their bodies change, but I have confidence I’ll get there. Until then, patience, again is a virtue. Not just for me, but for EVERYONE involved in my journey.
To make it short and sweet, life with a temporary or permanent ostomy is better than no life at all. If you are one of those people that have stigmas about ostomies, educate yourself, ask others who have been through the process. Be brave. The only way to get through this is to hold your head up high and be thankful for the life that your ostomy has given you.
Remember, above all, ostomies aren’t gross, but ignorance is.