Introduction

I’m from Charlottesville, Virginia. I love to travel. I love going to the beach, going on hikes, and being outside in general. I love spending time with my family.

I have Crohn’s disease as well as a permanent ileostomy. My biggest passion is disease advocacy and awareness.

Symptoms Worsen

I started having blood in my stool and horrible stomach pain. I went to see another doctor and at that point, they weren’t sure if I had Crohn’s or colitis. I continued to get worse. When I was a freshman in high school, I had to be homeschooled. I was too sick to get out of bed. It’s crazy to look back to see the 180 my life took. I was in so much pain and my body was so weak. I was in and out of the hospital all the time.

Diagnosis

I ended up having a colonoscopy and got diagnosed with Crohn’s disease. After getting a formal diagnosis, I began treatment. Compared to other people, I got diagnosed pretty quickly, but my health was rapidly declining.

Getting Diagnosed as a Teen

I turned lemons into lemonade. This was in 2006, so it was before social media and texting, but I could text 50 words a month. I was isolated from my friends. It was hard. I was homeschooled and a lot of people didn’t know where I was. All these rumors spread about me that I had died or had gotten pregnant and was sent away.

Meanwhile, I was in and out of the hospital and horribly sick, so it was hard. That was where the isolation came in plus not knowing anyone else going through this.

Before I started treatment, while driving to the hospital, I could hear my parents whispering about how they were going to have to sign a waiver saying that they would not sue the hospital if I died by taking this drug. It was that serious, but they didn’t want to freak me out.

Remicade was a scary drug. When I was responding to it and doing well, they had to decide if they wanted to keep me on it. It’s a harsh drug and I was so young. We decided to get off of it.

Going Off Treatment

I went the homeopathic route for around five years. I took different supplements and probiotics. Those bought me five years.

Getting a Colonoscopy

The conversation of having my colon removed was something I never had with my doctors. I didn’t know what an ostomy bag was when I was told that I needed one. It had never been mentioned, I had never heard of it, and I never thought I would be living with one.

At this point, I had graduated. I met my husband in college. We dated and right after graduating, we got engaged and got married at 23.

Eight months after we got married, in July, I went in for a routine colonoscopy. I had been feeling fine. There was nothing drastic or new. My symptoms had pretty much stayed the same. They were present but not how I had previously been in the past. I was able to function and have a life.

I went into this appointment excited because I thought they were going to tell me I was doing well. After all, I felt like I had been doing well. At the appointment, they came out and said, “We saw a few things. We’re sending a few biopsies off to make sure everything is fine.”

Treatment-Decision Making

My surgeon and I talked about the different options I had. He said, “We can do nothing and hope for the best. We can remove part of your colon, but you’re going to have to come in for routine monitoring probably every three months or so, possibly have colonoscopies to check for any progression and make sure nothing is happening. Or we can remove your colon and your rectum, you will have a permanent ostomy bag, but you will never have the chance of colon cancer.” I left that appointment thinking, There’s no way I’m getting an ostomy bag. I’m not doing that. I’m not having surgery. I absolutely refuse that.

A week later, my husband had to deploy and I moved back home with my parents. I had a month to make this decision if I was going to have ostomy surgery or not. In the meantime, we went for a second opinion, which I always highly suggest because it never hurts. Unfortunately, it was the same response. This is what needed to happen.

Deciding to Have a Proctocolectomy

I was ready to go into the appointment to say, “I will have part of my colon removed with the monitoring, but I’m not doing an ostomy bag.” That’s where I was at, even though my parents didn’t agree. They wanted me to do the ostomy bag because they thought this wasn’t something to joke with and we needed to be serious about this. I wasn’t ready to do that. My surgeon knew how horrified I was and how adamantly against it I was.

We had a conversation that changed my mind forever. I still get chills and goosebumps and tear up whenever I think of it. He said to me, “Imagine being a young mom and finding out you have cancer.” That put everything into perspective for me because he knew how important having a family and having children was to me. I left that appointment with my surgery booked to have my colon and rectum removed with a permanent ileostomy bag.

Mentally Preparing for a Permanent Ileostomy

There are two avenues to getting an ostomy bag: either it’s an emergency or it’s a planned surgery. I felt lucky because mine was planned so I had time to process beforehand. Even though I only had a month to figure everything out, I did what everyone else does: I went online.

This was 2016 and I was trying to find anything. There was social media, but I didn’t see a lot of ostomy on social media. I read a couple of blogs and there was one called The Stolen Colon, which offered more information and insight. Everything else I saw was the ostomy being associated with older generations. No one in their 20s had an ostomy bag.

All of the negative stigmas were popping up as well as the negative sides of having an ostomy bag. I tried to research and educate myself as much as I could beforehand. What helped was going into it with the mindset that it could only get better. I had been sick for so long. At that point, it’s been 10 years and my colon turned precancerous because of the intense scarring from Crohn’s disease. It could only get better, so why not try? It couldn’t get worse than it already is.

Going into it with an open mind, a more positive mindset, a willingness to learn, and a willingness to educate made a huge difference in my situation. Before having surgery, I felt very negative towards an ostomy bag. But as soon as I was rolled out after surgery, I never had any negative, upset, or harsh feelings. I always felt this was my second chance at life, so I’ll figure it out and get going. I felt like I missed out on so much when I was a teenager and in college. Now it’s time to make up for that.

Ostomy Care

I’m biased because I’ve had this for almost eight years. At first, it’s very difficult to figure out. Once you get the hang of it and find the appliance that works best for you, it’s so much easier.

Overall maintenance is not too terrible. I change the complete system every three or four days. You buy an ostomy bag from the distributors and you get a prescription for ostomy bags sent to your house. You take it off and clean the skin around it. A lot of times, people will tell you not to use any soaps or perfumes because you can have issues with the adhesive sticking to your skin or an allergic reaction.

You have to empty your ostomy bag daily. I got into the habit of emptying it every time I use the bathroom even if it’s not full yet. I don’t like walking around with a full ostomy bag because it’s not comfortable.

A lot of times, people would change it first thing in the morning because you’ve been asleep all night and things have slowed down.

Another tip that I love and I’m always so surprised that more ostomates have not heard of this is eating marshmallows before doing bag changes. Marshmallows, bananas, and bread can slow down your output so you can have a small window to have a clean bag change.

Knowing how to have a clean bag change is important because, a lot of times, people are horrified to have a messy one. It sounds gross, but if you get output on your hands, it’s not a big deal. It happens. You can wash it off. Also, I have two kids, so it’s nothing.

Social media was a coping mechanism for me because it allowed me to express myself. I love to write. Before Instagram reels, Instagram was about posting pictures with captions, so I would post a picture and pour my heart out. That allowed me to cope.

The biggest thing was that it allowed me to accept myself and my body because other people were so accepting of it. I didn’t know any of these people. They were random people on the Internet, but people were so kind and genuinely wanted to know more. Having an ostomy bag did not take away from me as a person. Having that positivity helped me to become more comfortable.

I kept sharing and reached more people. People then started coming to me, asking for tips and advice. It quickly became my passion. That’s honestly how I became more comfortable with it. Finally, after seven years, I wore my ostomy bag out at the beach for the very first time. It was amazing.

I’m learning not to worry about what other people think and having the mindset that life is too short. Ostomy surgery was a huge experience. It made me realize that I don’t want to grow old and look back having these regrets that I didn’t do what I wanted to do because I was worried about what other people would think about me. It’s weird and funny, but I always tell people that I feel more confident with an ostomy than I did without because I had that life-changing experience that put everything into perspective.

My biggest concern was childbirth. Because I don’t have a rectum, I was scared to death that I was going to tear, which would cause issues with my rectum removal. My worst nightmare was having a baby and then going through “Barbie butt surgery” again and having to be stitched back up down there because that was by far more difficult than the ostomy recovery, in my opinion. I didn’t do the two surgeries at the same time.

Another concern I had was automatically assuming I was going to undergo a C-section, but thankfully, I had an incredible doctor who advocated for me. Dr. Bearling at Fort Carson was amazing. She asked, “Why do you think you’re going to have to have a C-section?” I said, “I don’t have a rectum and I have an ostomy.” She checked to make sure I still had muscle function down there and I did. I was still able to push, so she said, “You’re going to have a vaginal birth. You’re fine. You can do this.”

I am so glad I had that conversation with her. At the initial appointment when I first found out I was pregnant with my son, I gave them my history and told them that story. They said, “I’m glad you shared that because if you hadn’t, we were going to schedule a C-section for you.” There’s a difference in care.

Overall, I felt lucky with childbirth. I didn’t have any complications with my ostomy or during pregnancy. I’ve heard stories of people having stomach blockages and issues where they had to go in for surgery or deliver their baby early. People have said that the baby can kick inside where your stoma is located and that can be painful. Thankfully, my babies never did that. Overall, I had a great experience.

Having a Supportive Husband

Thankfully, I have a very wonderful and accepting husband. Before my ostomy, he had only ever known me as being sick. He’d never seen me healthy. I knew he was a keeper because I was sick all the time. There were numerous occasions where we’d been driving and we’d have to pull over to the side of the road because I was in excruciating pain and needed to use the bathroom or lay down in the car. He never batted an eye. He was always there to take care of me and help me with anything I needed.

Ostomy surgery did not faze him. I’m sure he was freaked out and probably scared inside, but he didn’t let that show. He’d always been extremely supportive. He fought tooth and nail to come home when I had surgery. They told him he couldn’t go home from deployment unless a close family member passed away. I don’t know how he did it, but he did and went back before I was discharged.

When he returned from his deployment, we had to navigate each other. We had been married, but it was like we were dating again. We had to relearn each other. He’d always been supportive, but deep down, I had these fears of being a different person compared to when he left. He took it with grace.

Words of Advice

Finding a community is incredibly important. I turned to social media to find my ostomy community. You would be surprised at how many people in the world have an ostomy bag. People you know may have one, but you wouldn’t know it. Put yourself out there and be willing to find community.

I have made so many lifelong friends through social media. I’ve had the pleasure of meeting a couple of them in person. Being able to connect with someone who has gone through a situation like yours is earth-shattering. Someone could have all the empathy in the world, but it’s truly difficult to understand unless you have been through it. Having a community where you can talk about these things with other people who have similar experiences makes such a huge difference.