As she entered into her early twenties, the disease started to take over her life – she had ulcers, she couldn’t eat, was extremely weak and didn’t have the energy to do much of anything.
By the age of 23, Amber was spending more days in the hospital than she was at home. The medication that was supposed to treat her Crohn’s wasn’t working, and in February of 2016, when Amber was 25, she was hospitalized for months. That May, she met a surgeon who told her the only way they could help make her better was to have her undergo surgery to remove her colon, which would mean she’d have to live with an ostomy bag.
"I was devastated – I didn’t want to believe him,” says Amber, now a teacher in Gatlinburg, Tennessee. She convinced her doctor to give her more time to see if things would improve. But her situation got even worse, and within two weeks, the heavy antibiotics she was on killed all the good bacteria in her gut. That triggered a serious infection caused by a type of bad bacteria called clostridium difficile, or C. diff. For Amber, the infection was life threatening.
“My surgeon told me that if I didn’t have the surgery in 48 hours, I would die,” she recalls. “After praying about it a lot, I told my mom to notify my surgeon – I needed the surgery. The next morning, I had my colon removed.”
Amber’s story – although unique – is not all that uncommon. More than 750,000 Americans have an ostomy, according to the United Ostomy Associations of America. And every year, 130,000 people in America undergo life-saving ostomy surgery. But many of us don’t know what an ostomy is. Here’s a quick primer:
The surgery that removes the colon is called a colectomy. It’s performed to treat diseases such as colitis and Crohn’s disease, and in some cases, to prevent colon cancer that can develop from specific conditions such as familial polyposis. In Crohn’s disease, when the colon is removed, a new route is created for waste to escape from the body through an opening in the abdomen – that’s the ostomy, or stoma. The type of ostomy that’s created after a total colectomy is an ileostomy, which is a diversion of a part of the small intestine called the ileum.
The ostomy, or stoma, is the small, visible part of the intestine that exits the abdomen. Waste (stool) comes out of the stoma and is collected in an ostomy bag, which is typically called a “pouch.” The pouch fits around the stoma and securely attaches to the skin. Although life with an ostomy takes some getting used to, an ostomy can give people with incapacitating illnesses an entirely new lease on life.
That’s exactly what happened in Amber’s case.
It’s been one year since Amber had her colon removed, and today, she lives a very normal, active life. Her debilitating pain is gone and her energy is back. She has returned to swimming and gymnastics, is an avid hiker and has competed in multiple 5K races. She even has her own YouTube channel where she provides helpful tips* and words of hope to people who are going through the same experience she endured. We sat down with Amber to find out what she learned in the past year about living life with an ostomy.
(Amber) At first, I just didn’t feel like me. I felt like I was in someone else’s body. I thought I’d never be able to wear cute clothes anymore, much less a bathing suit. I thought I’d never date anyone again. I did feel at peace about the surgery – I had prayed about it a lot, and I knew I needed it for my health and for my life. But I remember one day, my sister came in to see me after my surgery, and she was wearing a really cute red dress. I started to cry, because I thought I’d never be able to wear anything pretty like that again.
I wish someone would have said to me, “be patient, it’s going to get better, you’re going to figure everything out.” Because now, since I’m not sick all the time, I live my life more than I ever did before the surgery. Back when I had my colon, it was inflamed, and I was always sick. Now that the colon is gone – that diseased part of me – now that it’s gone, I live my life more than I ever did before the ostomy bag. When I look at it now, I know that it saved my life – and gave me my life back.
(Amber) You would be so surprised the questions I get about this – a friend of mine thought I had a tube coming out of me! Here’s the easiest way I explain it: I had surgery to have my colon removed. So now when my body eliminates waste, it comes out of a stoma – which is the actual end of my small intestine that sticks out of my abdomen – and that empties into the ostomy bag. I have a bandage-like material called a flange that goes around the stoma; it has a circular cutout for the stoma to go through, and there’s a little round circular clip attached to the flange. The ostomy bag just snaps on to it like a Tupperware lid.
So when I eat and my body starts to process the food, the bag starts to fill up. Then I go to the bathroom to empty it out, and the whole process starts over again.
(Amber) After my surgery, there were four places around my stoma where I had stitches, and I had some kind of horrible reaction that created these crater-like sores that wouldn’t stop bleeding. They were raw and so painful. I was on blood thinners because of a blood clot after surgery, and that made the bleeding even worse. Because of these sores, I just could not get my ostomy equipment to stay on. Finally, after several trips to the ER and talking with my surgeon, he referred me to a wound care specialist and she showed me how to put my equipment on to where it would stay, because the places around my stoma were so irritated and uneven that the equipment would just not attach to my body.
But the sores kept getting worse and worse. I would try to go to football games and socialize with my friends, but my equipment wouldn’t stay on, and I was in so much pain. I was beyond frustrated, and I just wanted to give up. Then one day, when my mom and I were at the ostomy supply store, another customer told me about a product that she used that had been a lifesaver for her – it’s a 3M barrier spray. We picked some up, and it changed my life.
I started spraying it around my stoma, and it acted like a protective barrier – it provided a layer between those sore spots and my equipment and did wonders for my skin. And it didn’t sting at all. I saw results within four days. Now, I use it every single time I put my equipment on. I’m so grateful to that woman in the supply store for telling me about it, and I recommend it to everyone I know who has an ostomy – even people who didn’t have the skin reaction I had to the equipment. It’s a great protective product, too. I even made a video about it – which is how you guys found out about me! If I had to only live with one ostomy supply for the rest of my life, I would choose that one.
Editor’s note: For individuals pre- or post-ostomy surgery, a Wound, Ostomy and Continence (WOC) nurse can be a resource for education, treatment, support and ostomy care. Learn more about these specialty nurses and find one near you at www.wocn.org/patients.
(Amber) A lot of people tell me that, after seeing what I’ve been through, they are inspired by how positive I’ve remained. People send me notes of gratitude for making the videos, because they’re new to living with an ostomy, and they couldn’t really find any honest and real content about it online.
A lot of people think it would be so uncomfortable to talk about an ostomy bag, so they seem really appreciative for my willingness to share. For me, it’s about paying it forward. So many people helped me and supported me through my ostomy experience – nurses, doctors, family and friends. So if there’s even a slight chance that my talking about something uncomfortable will help even just one person who’s going through this, then I definitely want to do it.
(Amber) Be patient! The first few months after surgery you’re just figuring things out and getting used to your body. But know that there is going to be a light at the end of the tunnel, so have patience.
Do your research. In my situation, I didn’t really get to talk to someone beforehand and do the research I should have done. But if you have gastrointestinal issues, I recommend really taking the time to research the surgery – talk to someone who has an ostomy bag, and learn about what it’s like to live with one. I didn’t even know what an ostomy bag looked like until I woke up with one – which was a lot of undue stress. Also, I wish I wouldn’t have been so afraid of surgery – that I would have educated myself more about it. That way I wouldn’t have been so terrified of something that really wasn’t so terrible. I thought my life would be over. And it really wasn’t. I have way more of a life now because I’m healthy.
Lastly, just get up and live your life. I didn’t think I’d start dating again, and now I have a boyfriend! It’s an interesting story, actually – his grandma has an ostomy bag, and he learned on his own how to help her. When he saw my videos on Facebook, he messaged me and said he wished he would have had that information when he was learning to help his grandma change her equipment. So, funny enough, the first conversations with my boyfriend were about an ostomy bag!
(Amber) Don’t be afraid of different seasons in your life. I relate it to a passage in the Bible: For everything there is a season. During those first days and weeks after surgery, I remember thinking that this is going to be the worst season of my life. But, just like the seasons change, this time in my life won’t last forever.
And now, looking back on it one year later, this has turned out to absolutely be the best season of my life. And I never in a million years thought I would be able to talk to someone and say that I’m living life with an ostomy bag, and this is the happiest that I have ever been.
I feel like that’s the main thing I want people to know: Whatever season you’re going through, it can turn out to be something that really blesses your life. It can be a positive experience if you’re willing to be patient; keep working on it never give up hope.
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