Living with Crohn’s disease can affect nearly every part of daily life, from your energy and nutrition to your work, family time, and everyday routines. For Darlene, years of symptoms, testing, medication changes, and an intestinal blockage eventually led to ileostomy surgery.
At first, the thought of having an ostomy was frightening. But with support from ostomy nurses, encouragement from someone who had already been through ostomy surgery, and help finding the right ostomy supplies, Darlene began adjusting to life with an ileostomy.
In this 180 Medical Community Story, Darlene shares her experience with Crohn’s disease, ileostomy surgery, finding support, and learning the daily routines that help her feel more confident.
Darlene’s Crohn’s Disease Diagnosis at an Early Age
Darlene was just 19 years old when she began experiencing sudden, unusual symptoms of diarrhea. “I felt like I couldn’t go anywhere because I never knew when I would have to go to the bathroom. And when I had to go, I had to go,” she says.
Next, she began feeling unusual pain and fatigue. When she lost over 100 pounds within just a month, her parents took her to the hospital.
“From there, I went through just about every test you can imagine – from x-rays of my pancreas and various tests like an endoscopy and colonoscopy,” Darlene says. Given the inflammation in her colon, the doctor thought Darlene had ulcerative colitis.
She began taking 22 pills a day and had regular colonoscopies and other checkups to make sure everything was going alright. Things seemed to get better for a while. However, after she gave birth to her first child, her symptoms took a turn for the worse.
Growing more concerned, Darlene decided to see a new GI (gastrointestinal) doctor. After some extensive tests, he discovered Darlene didn’t have ulcerative colitis; she had Crohn’s disease. He changed her medications to treat the correct condition. Things improved for a while, but not long after, Darlene developed an intestinal blockage the size of a softball. To her dismay, her doctor told her it was time for ostomy surgery.
Facing the Fear of Ileostomy Surgery
At first, Darlene was scared of the idea of having an ostomy. Luckily, her sister introduced her to a friend who had an ostomy after surviving colon cancer.
Darlene says, “Once she explained her circumstance and literally showed me her stoma and pouch, that helped me immensely. Seeing that she made it through all that really put me at ease.”
Her ostomy nurses also greatly helped her with the transition to life as an ostomate. “After I had the surgery, I had three fantastic ostomy nurses,” says Darlene. “They came in the very next day after my surgery. They started explaining to me how I go about doing what I needed to do, such as how to clean my stoma, what to watch out for, and the basic ostomy guidelines.”
Looking back, Darlene says her ostomy nurses were truly a saving grace for her. Having that friend to talk to about living with an ostomy was also a huge part of getting past her fears.
180 Medical Was There for Darlene’s Ostomy Supply Needs
After Darlene got back home, she said it took at least a few weeks to get used to living with her new ostomy. “My biggest fear was having leakage or an accident where the pouch could pop off.”
Luckily, 180 Medical was right there for all of Darlene’s ostomy supply needs. “Whenever I had issues, I knew I could call 180 Medical. The ostomy specialists were very knowledgeable and walked me through every scenario.”
Plus, 180 Medical connected her with Convatec’s team of certified ostomy nurses for additional support.
Even when she dealt with challenges like skin irritation and stoma prolapse, 180 Medical and her ostomy nurses were there through it all.
“Whenever I had issues or had to change from size to size, 180 Medical always sent me ostomy samples and gave me anything I needed.”
Darlene’s Tips for Adjusting to Life with an Ileostomy
Now that Darlene has lived with her ostomy for a while, she has learned a thing or two. Here are a few of Darlene’s tips for life with an ileostomy, colostomy, or urostomy.
Tip 1. Contact 180 Medical to find the right ostomy products for your needs.
The first tip Darlene has for others with ostomies is to find the right supplier.
Through 180 Medical, she has found new ostomy accessories that have really helped her ostomy routine. For example, she loves the skin protection of eakin Cohesive® Seals. These ostomy seals help provide more security from leakage.
Also, she likes to use an ostomy belt. “Using that ostomy belt just gives me a little more support. Now it’s just second nature to me. I put it on every day. Those pouches can get a little heavy sometimes!”
Tip 2. Find others with ostomies, such as a local support group.
“Through my local hospital, two ostomy nurses lead a support group. When you go, you know you’re not alone. There are ostomy patients with all types of ostomies: urostomies, ileostomies, and colostomies. And it’s really nice to talk to different people and hear their experiences and have camaraderie with them.”
In addition to finding a sense of community in a support group, attendees often receive educational opportunities and other helpful ostomy resources.
Tip 3. Listen to your body and take care of your health.
Before her ostomy surgeries, Darlene had to avoid certain foods due to her severe IBD. However, after ostomy surgery, she’s also learned to stay away from some types of foods that can cause issues with her ileostomy, such as corn and nuts. Also, certain foods, such as cruciferous vegetables like broccoli, may cause more gas in people with colostomies or ileostomies.
You should consult with your doctor or a qualified ostomy nurse to determine if you need to avoid any foods after your ostomy surgery.
Next, Darlene mentions that she drinks a lot of water every day because her ostomy nurses told her to. “With an ileostomy, you may not be absorbing as much water because you don’t have the same length of bowel anymore,” she says. “I drink at least 64 oz. of water a day. I drive a school bus part-time, and I always take my thermos with me so I can make sure to drink my water.”
Plus, Darlene regularly takes vitamins to ensure she doesn’t have any nutritional deficiencies due to her ileostomy.
“Since my ostomy, I’ve just naturally become more conscientious of my health,” she says.
Tip 4. Pay attention to your pouch and empty it regularly.
“I typically empty my ileostomy pouch when it’s about a 1/3 to 1/2 full. I probably empty my pouch 10 times or more a day. A normal person with an ostomy may get away with fewer times per day, but because I have Crohn’s and an ileostomy, I have higher output. You just learn your own routine and roll with it.”
So why is it so important to regularly empty your pouch? It can help reduce the risk of ostomy leakage, skin irritation, and more.
“Sometimes it’s not just the weight of the pouch,” Darlene says. “It can also be the pressure of the liquid output under the seal. It will try to find the weakest point and come out.”
Darlene even sets her alarm in the middle of the night to empty her pouch if she needs to. “During the night, your bowels aren’t as active, but if you have a lot of liquid in there, you need to get up and empty it,” she says. This will help you avoid messes in bed and pajama changes in the middle of the night.
She also tries to sleep only on her side or back, never on her belly, to avoid disturbing the pouch or the skin barrier’s seal.
Tip 5. Stay positive.
Darlene says the biggest part of getting used to life with an ileostomy (or any other type of ostomy) is to try to stay positive.
She says that while she knows firsthand it isn’t always easy, it’s better to remember the positives. “My health is better, and my life is better. Occasionally, your stoma might have gas, and you just have to laugh about it. If I have a leak, okay. We just do what we have to do. Laugh about life a little. Life goes on. An ostomy is really not that bad.”
One of the turning points for Darlene was when she was in the hospital at 19 years old. “I was having a real rough time of it with all the pain and medication. My father came to see me and said, ‘Darlene, you can do one of two things. You can let this disease control you, or you can take control of the disease.’ When he put that into perspective for me, it really made sense. I decided this disease would never defeat me, and today I am in a better place with everything. My father was a man of few words, but when he said that to me, it made all the difference.”
Darlene Is Living Life to the Fullest with Her Ileostomy
Despite challenges along the way, Darlene is healthy and happy today. Her Crohn’s has been in remission for going on four years, and she’s currently not taking any medications.
“Here I am, six years later, and what I’m doing is working for me now,” she says. “If I have issues, I know I can pick up my phone and call 180 Medical.”
Plus, she has a great support system with her family. In fact, she counts her family among the main reasons she has been able to get through all the hurdles. “Through all my surgeries, my sisters and my husband were there for me. My son has been there for me. Just knowing they’re all there for a hug makes a world of difference for me. Having a good support system goes a long way.”
She enjoys her part-time job of driving a school bus while also taking time to enjoy simple pleasures like cuddling with her Boston terriers. Also, she stays active with gardening and playing with her grandchildren.
Speaking to Darlene was truly a pleasure and an inspiration. Above all, we’re honored to be Darlene’s ostomy supply provider and to be there any time she needs us.
If you’re looking for an ostomy supply company, reach out to us at 180 Medical. We’re ready to provide you with high-quality ostomy supplies along with our friendly, reliable customer service.
Disclaimer: This article is for informational purposes only and is not intended as medical advice. Information provided on 180medical.com should not be used as a substitute for medical advice, diagnosis, or treatment from a qualified healthcare professional. Please consult your healthcare provider with any questions about your condition, treatment, or medical supply needs.
