I have a permanent colostomy because radiation damaged my colon and small intestine, during cancer treatment. I also had an ileostomy for about six months. I spent months in the hospital and almost died. I’ve lost almost all of my colon, I have a tiny piece, and about 1/3rd of my small intestine has been removed as well.
Life Before My Ostomy:
I worked in sales very successfully, enjoyed my two great children, had an amazing boyfriend of three years, and was just plain happy! Everything was going ‘right’. I was a very optimistic, kind, joyful person who had a smile for everyone. I’m no supermodel, but people have always told me things like, “You’re a classic beauty.” “You should be a model.” I am not a shallow person, but without realizing it, I had placed some of my own self worth in my appearance. Right after my 32nd birthday, I was diagnosed with cancer.
Waking Up to an Ostomy:
When I woke up from surgery and saw my ostomy, I remember screaming, “No, no, no! Why?” Then the nurses gave me something and I was out again. At first, I cried constantly, felt repulsed by my own body, and my hands shook so hard when I tried to change it that the nurses had to help me. Surgery after surgery, feeding tubes, and drains left scars all over my abdomen. I couldn’t look at myself undressed. I felt like a monster. Any disfiguring surgery when you’re young (I consider 32 still young), can be devastating on your psyche.
After months in the hospital, I finally got to go home to my children, my family, and my boyfriend who had stuck by me through two years of fighting cancer; ostomy and all. I was very sick at first and intimacy wasn’t even on my mind. I had a feeding tube, an IV, and weighed about 90 pounds (I’m 5’11). I was elated to be home! There were times I wasn’t sure if I would ever get out of the hospital. I was thankful that I had lived, but there was a little voice in the back of my head telling me, “You’re life is over. You’re disgusting now.”
This little voice got louder and louder. My ileostomy leaked. I went to the bathroom so much that I couldn’t stay hydrated. I had to go to the hospital every other day for eight hours of hydration. Driving somewhere for 20 minutes was an absolute nightmare. Finally my surgeon reconnected the tiny piece of colon I had left and I lost the IV. After recuperating, I realized it had been just over a year since my boyfriend and I had been intimate. I had been too sick until now and it really wasn’t even a possibility, but now that I was feeling better; I was terrified.
Overcoming My Fears:
I won’t say this was easy, but what worked for me started with the people who love me. If you’re feeling ashamed of your body, ask yourself some of these questions and you please don’t give up on yourself. You aren’t alone.
- Do the people who loved you before surgery, still love you? I bet they do.
- Look at your body. Really look at it. The rest of your body is just the same as it always was. You just have a little pouch now. That’s a really small percentage of your body. Everyone has scars; inside or out. The rest of your body is just the same as it always has been.
- Love your body. It just got you through an amazing ordeal.
- Do you hurt less? Most people who have an ostomy were in pretty bad shape. The ostomy has saved your life. Isn’t it nice to be out of horrible pain?
- Think about your own values. Would you tell your children to judge someone because of their body or what’s on the inside? Take your own advice.
- Realize we are usually harder on ourselves than others would be.
- Think about where you live. We are bombarded by fake beauty, starving ‘perfect’ models, etc.. America has a really screwed up perception of what matters; money, looking perfect, etc..
- If you really loved someone, and you found out they had an ostomy; would it change your feelings? Of course not! Apply this to yourself.
- If you’re a younger person, it can feel like everyone with an ostomy is much older than you. Not true. There are over 500,000 people in the U.S. alone with an ostomy, according to my ostomy nurse.
- Give yourself a year; one year from now, look back and see if you feel the same way you do now. You may surprise yourself. I never thought I would get my confidence back. I feel just as beautiful today with my ostomy as I did when I was ‘normal’.
Intimacy and Tips:
I’m a pretty private person when it comes to this subject, but it was really hard for me to overcome my fears; even with a really loving and understanding partner, so I hope this helps someone who’s feeling ugly, uncomfortable, or insecure.
It took a year and a half after getting my ostomy for me to be intimate again. For the ladies reading this; if your colon or rectum was removed, it can feel a little different; but not bad. It takes a little while to get into your comfort zone with someone again. One of the biggest problems, if you’ve been treated with radiation (for a woman), is that it can cause scarring inside your private parts and cause the vaginal canal to shorten. If you didn’t use the dilators during radiation, you may need to visit an adult store and get something to help you or it can be really painful. Another problem that we forget sometimes; your partner is really nervous too and doesn’t want to hurt you. The first twenty times can feel awkward and be full of, “I’m sorry’s, and are you okays?” I cried the first time we were actually able to for an hour; the emotions I had held in for so long just boiled over. For a time, I thought that part of my life was over. I also had deeply missed the closeness with my partner. It’s not easy at first, but it’s worth the effort and the raw emotions you’ll probably feel.
If you feel embarrassed by the bag, there are lots of things you can do. Mine are tan colored and aren’t see through. Make sure everything is clean and sealed properly before hand. I tried some different lingerie out. Corsets are cute but honestly not very comfortable. You can leave the laces at he bottom looser, but I recommend baby- doll nighties for women. They come in all styles; cute, pretty, sexy, flirty; whatever you prefer. Also, you can get the pretty lingerie that is like a cross between a girdle and a garter belt. It covers your stomach and is made of stretchy material. I got a cute one that had ruching at the back and pink bows that makes me feel really pretty. I’m actually going to sew some myself. That way I can put a little pocket on the inside for my ostomy pouch. You can also just lay a sheet over your stomach or if you feel more comfortable over time, you may find it doesn’t matter to you anymore. I don’t have a lot of tips for men on covering it up; I’ve heard men say they leave their T Shirt on. Just find out what your partner likes. As a lady, I don’t think I’d care if I saw it or not; as long as I couldn’t see through it. I would be happy to still have my loved one alive and well!
If you are single and afraid to date someone because of your ostomy, there are ostomy dating websites online, but you shouldn’t limit yourself! You have nothing to be ashamed of! Everyone goes to the bathroom! If you date someone and they don’t want to continue after you tell then about your ostomy (that’s the very worst thing that could happen), then so what? Do you want to date someone, let alone sleep with someone, who is so shallow? No one can make you feel embarrassed unless you allow them to. Remember that. If you feel confident and take care of yourself, you will be just as cute, or pretty, or handsome as you ever were. All it takes is one good experience with a cool, kind, loving person and you’ll never feel ugly or bad about yourself again. I can’t promise you anything; I don’t know what type of person you are, but I can tell you from my own experience that it’s all in how you look at it yourself. Just like anything else in life. If you walk around feeling gross and ugly; people will probably treat you that way. If you are confident, funny, kind, take care of your body; people will treat you accordingly. It does take time, but don’t let this illness beat you! Best of luck to you. Hope this helped a little bit.
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