Embracing Change

Living with an ileostomy has been a transformative experience for me, filled with both challenges and opportunities for growth. I want to share my journey from diagnosis to adaptation, offering insights, tips, and encouragement to those who might be navigating a similar path. Understanding and accepting this new chapter of my life has been crucial, and I hope my story can help others feel less overwhelmed.

Understanding My Ileostomy

Some of you may be wondering just what an ileostomy is. In simple terms, it is a surgical procedure that creates an opening (stoma) in the abdominal wall, allowing waste to bypass the colon and exit the body directly from the small intestine. For me, this was necessary due to a number of large polyps that had developed within the J-pouch that I had as a result of a battle with colon cancer 16 years ago, which had become unmanageable. Although the thought of living with an ileostomy was daunting, I knew I only had 2 options: have the procedure or wait for cancer to return.

The Emotional Rollercoaster

The first 2 months following my surgery, I faced one complication after another, leaving me feeling defeated and not putting forth my best effort on the road to recovery. First and almost immediately, a rather large blood clot developed against the inlet of the stoma, effectively blocking any waste from exiting my stomach and resulting in me sporting an nasogastric (NG) tube for the majority of the first 3 weeks. A NG tube is a thin, soft plastic tube that's inserted through a nostril, down the throat, and into the stomach to relieve pressure as a result of an obstruction. Once the original incision healed enough, my surgeon went back in to remove the blood clot, and a week later I was discharged from the hospital, believing that I was ready to take on the world and all of life's new challenges. But life has a way of reminding us just how little control we have, and 3 days later I was readmitted to the hospital with a stomach infection. Following a week of constant antibiotics and debating the necessity for a third procedure, I was once again considered well enough to be discharged. Over the course of the next month, I returned to the hospital a total of 7 more times for dehydration and severe malnutrition (I lost 67 lbs. in 6 weeks). It was finally determined that my body was not absorbing fluids or nutrients properly, and ultimately, I needed to have a peripherally inserted central catheter (PICC line) inserted in my upper left arm and was prescribed at-home IV fluid, Imodium (to slow the stoma output), and multiple supplements in order to stop this downward spiral. A PICC line is a thin, flexible tube that's inserted into a vein in the arm, leg, or neck and guided into a large vein near the heart. I've now been home and hospital-free for 2 weeks and can confidently say that I am on the road to recovery! While I occasionally wonder when or what the next hiccup will be, I know the worst is behind me, and I am mentally and emotionally stronger because of the challenges I've faced.

Practical Tips for Daily Living

1. Mastering Ostomy Care:

Learning to care for my stoma was a crucial part of the adjustment process. My healthcare team provided detailed instructions to me and my wife on how to change my ostomy bag, maintain skin health around the stoma, and recognize signs of infection or complications. With practice, these tasks have become second nature.

2. Finding the Right Supplies:

There are various types of ostomy bags and accessories available. Experimenting with different products helped me find what worked best for me. I took advantage of free samples offered by companies, which allowed me to try different options before committing to a particular brand or style.

3. Dressing with Confidence:

Wearing an ostomy bag doesn't mean sacrificing comfort. Modern ostomy products are designed to be discreet, and I discovered specialized clothing lines that provide additional support and concealment. Soft-waisted pants, loose-fitting tops, and ostomy belts have helped me feel comfortable and confident in my attire.

4. Navigating Social Situations:

Feeling self-conscious about my ostomy was natural, but I’ve learned to control how much I share with others. Practicing simple explanations has eased any awkwardness. For instance, I might say, "I have a medical condition that requires me to use a special bag," if someone asks.

Staying Active and Healthy

Living with an ileostomy doesn’t mean giving up my favorite activities. I'm regaining the ability to lead an active, fulfilling life, participating in exercise, traveling, doing housework, and pursuing hobbies. Staying active is important for my overall health and well-being, and with a little planning, I can enjoy the activities I love. I always consult with my healthcare provider before starting new physical activities to ensure they are safe for me.

Dietary Considerations

My diet required some adjustments to accommodate my ileostomy. Here are a few things that worked for me:

- Chewing food thoroughly to aid digestion.

- Staying hydrated by drinking plenty of fluids throughout the day, aiming for half of my body weight in ounces and often far exceeding it.

- Avoiding foods known to cause blockages or excessive gas, such as nuts, seeds, those with skins or peels, and carbonated beverages.

- Introducing new foods gradually to monitor their effects on my digestion.

Leaning On My Support System

Building a strong support system has been essential for my emotional and practical support. Friends, family, and healthcare providers play crucial roles. My wife, in-laws, children, and mom have been invaluable throughout my life and even more so over the last few months. Connecting with others who had gone through similar experiences was incredibly reassuring. The Advocate Voice community and online support groups became a lifeline, providing a safe space to share my feelings, ask questions, and receive practical advice from people who truly understood what I was going through.

Living with an ileostomy is a journey of adaptation and empowerment. While the initial adjustment period was challenging, I’ve found that I can lead a fulfilling, active life with the right knowledge, support, and mindset. Embrace your journey with confidence, knowing that each day brings new opportunities for growth and resilience. Remember, you are not alone on this path; there is a community ready to support you every step of the way.