Confessions of a Woman Who Had Her Entire Colon, Rectum, and Butthole Removed

1. Why did you have your entire colon, rectum, and anus removed?

Answer: I had ulcerative colitis for 16 years. At my worst, I was having explosive diarrhea with blood and mucus 20 to 30 times per day. Eventually, I completely lost control of my bowels and would have accidents in public places, in my car, and in supermarkets. It was hell.

I tried every available medication, including participating in clinical trials. Either the treatments didn’t work, stopped working, or caused unbearable side effects.

Initially, the surgeons wanted to preserve my anus, but there was still inflammation and diseased tissue around it, preventing a painful fistula from healing. Removing it was necessary to get rid of the remaining disease.

As soon as it was gone, I felt like my whole body had finally gotten rid of something that had been making me sick.

2. How do you poop without a butthole?

Answer: My small intestine pokes through a hole in my belly called a stoma. I have a bag attached to my abdomen that collects the waste.

I have no control over when it comes out. My stoma produces waste throughout the day, about 8 to 10 times daily.

Because it comes directly from my small intestine, it’s not really normal poop. It’s more like partially digested food and is much more liquid.

Everything goes into the bag automatically. I empty it several times a day and change the whole system every two to three days.

3. What happens to the place where your anus used to be?

Answer: It’s completely gone. Right now, there’s a long incision with stitches extending from the top of my butt cheeks toward my vagina.

Once everything heals, it should become a smooth scar.

They actually call this a “Barbie butt” or “Ken butt” surgery because, once healed, the area looks like the smooth backside of a Barbie doll.

I’m still recovering, so at the moment it looks like a battlefield. But I’m hoping it will look much nicer once the swelling goes down and the stitches are gone.

4. Can you still fart?

Answer: My stoma can fart! I have absolutely no control over it, but if it happens at an inconvenient time, I can cover my stoma with my hand to muffle the sound.

Luckily, my stoma is pretty quiet. Some people’s stomas make a lot of noise.

But I can’t fart the traditional way anymore, and I actually miss it!

5. How often do you have to empty your bag?

Answer: I empty it around 8 to 10 times per day, although I don’t wait until it’s completely full.

It takes me about two minutes to empty it because I like to rinse it afterward. Changing the entire system takes about 10 to 15 minutes.

I prefer doing full bag changes at home, lying on my bed, because there are several steps involved and you want to make sure everything is attached properly to avoid leaks.

When I’m out, I try to find accessible bathrooms because I need more space and access to running water. But I’ve even used portable toilets at music festivals when I had no other choice!

Emptying my bag 8 to 10 times a day might sound like a lot, but when I was sick, I could spend hours on the toilet with bloody diarrhea up to 30 times a day. Compared to that, my life now isn’t so bad.

6. Does the waste smell like normal poop?

Answer: Mine doesn’t really smell like normal poop. It smells more like whatever I’ve eaten recently, only partially digested.

I’d say it smells more like vomit than poop, and the smell is generally less strong.

If I eat fish or eggs, for example, you can sometimes smell that when I empty the bag.

7. Can your ostomy bag leak or explode?

Answer: It can definitely leak if you’re not careful. The system is pretty secure, but you need to attach it correctly and change it regularly.

I always carry spare clothes and extra supplies with me, just in case.

If the bag gets too full, it can swell up and potentially detach from my skin. That happened to me in the hospital after my first surgery because nobody had properly explained how often I needed to empty it!

Now I’m very careful about it.

But I’ve decided that the fear of leaks isn’t going to stop me from doing the things I love.

8. Can you still eat whatever you want?

Answer: Yes! And that’s one of the best parts.

Before surgery, there were so many foods I couldn’t eat without suffering afterward. Now I can eat raw vegetables, fruit, spicy food, dairy, and pretty much anything else I want.

I can drink alcohol, too, although alcohol and fermented foods tend to make the output in my bag more watery.

I just make sure to chew everything really well, especially foods that might cause a blockage in my stoma.

I also have to be careful about dehydration because the colon normally absorbs a lot of water. I drink plenty of fluids and take electrolytes.

But having the freedom to eat things I couldn’t enjoy for years is wonderful.

9. Does having an ostomy affect sex and intimacy?

Answer: I was already in a long-term relationship when I had my surgeries, and my partner has been incredibly supportive. He’s never made me feel anything but beautiful despite my ostomy.

I have a nice-looking wrap that covers my bag during sex.

Penetrative sex has been difficult because of all the trauma and surgeries in my pelvic area. But we’ve found other ways to enjoy intimacy that don’t involve penetration.

It turns out sex can still be very nice without it!

I’m hoping pelvic floor therapy will help me eventually return to penetrative sex, but I’m very lucky to have such an understanding and patient partner.

10. Can you swim, exercise, and live an active life?

Answer: Absolutely!

Even between surgeries, I’ve been able to ride my horse, swim, travel, go to parties, and attend music festivals.

I love electronic music and techno. Sometimes we bring a wheelchair to festivals so I can rest when I get tired from dancing, but we still stay out until 6 a.m.!

I even learned to DJ while I was bedridden recovering from surgery, and now I play music at parties.

Swimming requires a little planning. I prefer one-piece swimsuits because they hold the bag more securely. I also have to be mindful of the adhesive and dry everything properly afterward.

But honestly, I feel more confident doing all these things now than I did when I had ulcerative colitis.

Back then, I was constantly terrified of not being able to find a bathroom in time. Now that fear is gone.

11. How did the surgeries change the way you see your body?

Answer: It’s been difficult, especially emotionally.

When I first got my bag, I went through about two weeks of grief. I’m very sensitive to things touching my skin, and I thought having something permanently attached to my stomach would drive me crazy.

But the freedom I felt from no longer having my old symptoms quickly became the dominant feeling.

Having my anus removed was a bigger shock. It’s still very recent, and seeing such a large stitched-up wound where part of my body used to be was overwhelming.

One evening after coming home from surgery, I broke down crying and asked, “What have they done to my body?”

I’ve lost so much of my body in such a short time, and sometimes that realization hits me all at once.

I’m working with a therapist, and I have an incredible support system of family, friends, and my partner.

I let myself cry and get angry when I need to. But I also try to enjoy every good moment I have.

12. After everything you’ve been through, do you regret having the surgeries?

Answer: I actually wish I’d done it sooner.

For years, I was terrified that having an ostomy would mean the end of my life as I knew it. I fought against surgery for as long as possible.

But I had become so traumatized by losing control of my bowels in public, by the constant pain and embarrassment, that getting my bag felt incredibly liberating.

I even had the option of considering a J-pouch, which could have allowed me to pass waste through the usual route again. But after everything I’d experienced, I didn’t want to risk going back to worrying about finding a toilet.

My quality of life has improved so much. I can travel, ride horses, go to festivals, work, swim, and enjoy food again.

It’s not perfect. I’ve had complications, and I’m still recovering. But the terrible pain I used to live with is gone.

Life is good.