living beyond the bag an interview with two ostomates

Welcome back to Emily's Gut Check! Today we will be continuing our discussion on ostomies! If you missed the previous post, I encourage you to check it out using the link at the bottom of this page. In it, we define what an ostomy is, briefly discuss ostomy care and management, and finish with addressing some ostomy-related myths and questions. This information will hopefully aid you in your understanding of the material presented below. I'm so excited to share that today's post is actually an interview with two of our own IBD Connect team members- Meghan and Laura. As the social media director, Meghan helps the IBD Connect team by managing our social media platforms. She does an amazing job curating and posting written material, graphics, and images that seek to promote IBD education and inform IBD Connect members of upcoming events. Laura, on the other hand, facilitates a monthly virtual young adult support group through IBD Connect. There is such a need for IBD support for this age group, and Laura does a wonderful job making these young adults feel welcomed, listened to, and understood. Meghan and Laura have more than their connection to IBD Connect in common, however. Both of them were diagnosed with IBD and have ostomies! In today's interview, we discuss how their ostomies have impacted their physical, mental, emotional, and social lives. We cover topics like ostomy surgery, evolving relationships with friends and family, and some of the unforeseen challenges of ostomy life. It is my hope that this discussion not only broadens the readers' overall understanding of ostomies, but allows the reader to apply the clinical knowledge reviewed in the last post to practical, real-life situations. As they reflect back on their IBD journeys, Meghan and Laura provide thoughtful and insightful answers to these common ostomy-related questions. I have faith that readers will find support and encouragement from their beautifully articulated thoughts and feelings. Please enjoy the interview!

Can you please introduce yourselves? Tell us a little bit about yourself and your connection to IBD Connect!

Meghan: My name is Meghan Brown, and I am 31 years old living in Central Virginia with my husband, our two children, and lots of pets! I love spending time with my family, playing in the garden, escaping to the beach, and relaxing with a cup of coffee. I was so fortunate to be introduced to IBD Connect through a mutual friend and quickly stepped in to help with social media. It has been so much fun being able to use my creative side to support a cause that is so near to my heart – pediatric IBD.

Laura: Hi everyone! My name is Laura Castrigano, and I'm a teacher and mom living in northern Vermont. I recently joined the IBD Connect team as a facilitator for our virtual Young Adult support group. We're working on building a community where young people living with IBD feel welcome and understood - please feel free to join our monthly meetings to see if it's a good fit for you!

If you feel comfortable sharing, can you please summarize your IBD journey? How old were you when you were diagnosed? How did your diagnosis impact your daily life?

Meghan: I was diagnosed with Crohn's Disease when I was 13 years old. I began having the typical symptoms of diarrhea, pain, and bloody stool. My parents took me to the doctor, but my symptoms were immediately dismissed, and I was labeled as a nervous child. Thankfully my parents were not going to accept that diagnosis, and a few months later I was formally diagnosed with IBD. My Crohn's was so severe that I had to be homeschooled my freshman year of high school because I literally could not get out of bed. My body was incredibly weak, and I was constantly in and out of the hospital. I began taking biologics and thankfully fell into remission, allowing me to return to high school the following year.

Laura: I was diagnosed with Ulcerative Colitis when I was 25 years old. My disease progressed rapidly, and within six months I had already been through multiple medications and hospitalizations without any improvements. While I continued to work full time through the fall semester, the situation became untenable and I took a leave of absence after the holiday break. It was so frustrating to feel like nothing I was doing was helping my symptoms. I was exhausted physically and emotionally, and spent my days resting, getting infusions, visiting doctors, and waiting on hold with my insurance company.

"I was exhausted physically and emotionally, and spent my days resting, getting infusions, visiting doctors, and waiting on hold with my insurance company" -Laura

What ultimately led to the decision to get an ostomy? Was it a life-threatening situation? Was medication therapy failing or losing effectiveness for symptom management? How old were you when the procedure was performed?

Meghan: After being in remission for five years, I started getting sick again while I was in college. I had formed immunity to the biologic that had previously helped me get into remission, and now had to go through my options. Unfortunately, I was failing all the available medications. When I was 24 years old, I went in for a routine colonoscopy and was feeling the best that I had felt in a while. It turns out, that wasn't the case at all, as my doctor discovered high grade dysplasia deep within the tissue of my colon. I was deemed precancerous and given the options to do nothing, have my colon partially removed and continue with routine colonoscopies to monitor potential cancer risks, or have surgery to remove my colon and rectum, and live with an ostomy bag for the rest of my life. Of course, I wanted nothing to do with an ostomy, and to be honest I didn't really know what one was. However, an intimate conversation with my surgeon ultimately helped me to realize that an ostomy was the best decision for me, and I am so glad I went through with surgery.

Laura: One day in February (shortly after my 26th birthday), I suddenly began feeling extremely unwell. I was in severe pain, and when I called my doctor, he told me to go to the emergency room. Twelve hours later, I had emergency surgery to remove my colon. It was shocking to me, as up until that point I was unaware of ostomy surgery as a treatment.

Could you walk us through the process of getting an ostomy? What was it like before, during, and after the procedure?

Meghan: I had a month's notice before having surgery for my ostomy. Before my procedure I tried to research and learn as much as I could, which was difficult as people didn't really talk about it too much on social media. I found a few blogs and YouTube videos, but that was about it. I also met with my stoma nurse the day before surgery so that she could mark my stoma site. We discussed where my stoma would be placed and considered different factors, such as where my pants sit on my waist. She used a black sharpie and drew four spots on my stomach, marking the preferred spot with an #1, but also giving the surgeon options if something went array.

My procedure lasted 8 hours as I had my entire colon removed, my rectum removed, and an ostomy bag placed.

After the procedure I stayed in the hospital for five days while my bowels “woke up.” It's important to be able to pass gas and output before going home. While in the hospital I also had to work to regain strength and ate a very basic diet. Grilled cheese sandwiches and tomato soup were my go-to, and I was instructed to very thoroughly chew! My stoma nurse also visited and taught me how to change and empty my bag. Before I could leave the hospital, my care team wanted to ensure that I knew how to care for my stoma on my own.

Laura: I might not be the best person to ask, as I was pretty incoherent both leading up to and following my procedure… I basically got a crash course in ostomy anatomy and placement from a WOC nurse right before surgery. She talked me through where it would go and what it would look like. She examined my abdomen and drew Xs in a few areas to show the surgeons where she recommended the stoma be placed. After the surgery, she visited me regularly to assist me in changing the appliance. Due to the severity of my disease, I was in the hospital for ten days before being discharged, so I had ample opportunity to ask questions and watch skilled nurses change my appliance for me.

Emotionally, how did you feel post procedure? Again, from an emotional standpoint, what was it like navigating the process of learning how to care for your ostomy?

Meghan: I was in a very positive mindset after my procedure. However, before my procedure, I felt like my life was over. I was adamantly against having an ostomy bag and truly felt that it would ruin my quality of life. I was miserable and felt lost in this deep tunnel of negativity and felt horrible about myself. After having that life-altering conversation with my surgeon, I made up my mind that I was tired of feeling so terrible and decided that an ostomy was going to be my second chance. By this point I had been sick with Crohn's for 10 years and missed out on so much of my life. If I had to have an ostomy, I was going to make the best of it. This mindset helped me navigate how to care for my stoma. I think the most difficult thing was finding appliances that worked best for me, but that is a learning curve that most people will encounter.

Laura: Because my surgery was unplanned, it was really hard for me to initially accept that my ostomy would be a part of my life. While I was certainly grateful for the life-saving procedure, it was hard to come to terms with my new normal and how I would navigate my formerly active lifestyle with an ostomy. At first I was tentative to change my appliance at home, and became anxious any time things went wrong - like when I had a skin issue or a prolapse. With time, I became more comfortable both changing the appliance as well as accepting that thinking about it would be a part of my daily mental load.

How has your life changed since getting an ostomy? Has it improved your quality of life in any way?

Meghan: My life has completely changed for the best since having surgery. Of course, I still have Crohn's Disease, but I'm finally able to live. I had been sick for so long, I thought feeling that way was normal. I'm no longer in pain, I don't feel anxious trying to find the nearest bathroom or wondering if I'll make it to the toilet in time, I'm able to eat foods that I once couldn't, and I can be present in the moment.

Laura: While my recovery wasn't straightforward (I actually had 3 additional surgeries to create a J-Pouch, which ultimately failed within 4 months of take down), I now live a life similar in many ways to my life before my UC diagnosis. In the last few years, I have been able to return to work full time, travel, run a half marathon, and continue to push myself physically and mentally. Most importantly, my ostomy has allowed me the stability and health to have a successful pregnancy, and I am now a mother to the most amazing toddler.

"My life has completely changed for the best since having surgery. Of course, I still have Crohn's Disease, but I'm finally able to live." -Meghan

What were some of the biggest challenges you faced when adjusting to life with an ostomy, and how did you overcome them?

Meghan: I think the biggest challenge was accepting that this would be my new normal, forever. I will never be able to see my stomach without a bag or stoma, and I'll never use the bathroom “normal” again since my ostomy is permanent. What helped me most was connecting with other ostomates on social media. There is a huge community of ostomates out there, extremely supportive, helpful, and open armed. It's really amazing to be able to connect with people you've never met in person and bond over something so personal. I've quickly become best friends with a lot of the people I've met online, and we talk almost daily. Having that support system, knowing that they are experiencing the same things (physically and mentally) that I go through, and vulnerably putting ourselves out there together is what has helped me to accept my ostomy. Positivity has also been a coping strategy through just being thankful to be alive. Celebrating the small wins and learning to not stress over the little things – my perspective on life totally changed after going through surgery.

Laura: It's really hard to explain to people that while I'm no longer “sick,” I'm also not unaffected by my disease. I struggle with dizziness, dehydration, and fatigue, as well as with intestinal blockages if I'm not careful about the foods I eat. I also have chronic pain associated with my scar tissue and failed JPouch, which tends to flare up when I am stressed or sick. While these things are minor in comparison to the symptoms I used to experience with UC, they do impact my day to day life and mean I need to be thoughtful about getting adequate rest and communicating what I need to my loved ones.

How has having an ostomy impacted your relationships with friends, family, and significant others?

Meghan: My ostomy has given me my two biggest blessings – my children! I chose an ostomy because I didn't want the threat of cancer to impact my ability to be a mother. I could never fathom being a young mom dealing with something like that. The only way to ensure this wouldn't happen was to have ostomy surgery. I had my daughter three years after having surgery, and now we also have a little boy. I was able to experience pregnancy with my ostomy (twice!) and thankfully had two healthy births. I would love to have more children, and I can't help but smile when I think about how my ostomy has given me that possibility, as well as the ability to be here to watch them grow.

Laura: At last month's Young Adult meeting, I was reflecting on how interesting it is to meet new people who don't already know about my medical history and ostomy. My family moved two years ago, and I have met many new friends and colleagues since. Now I have the choice of how and when to share my story with new people, and I'm finding myself not sharing it more often than not. I think this demonstrates that while my ostomy is still something I think about each day, it's no longer a defining characteristic for me the way it was for the first year or two I had it.

As for how my ostomy has impacted the relationships I already had with family and friends - my family and friends are wonderful, but it's hard for them to understand what I've been through. I'm hopeful that my work with IBD Connect will help me develop new friendships and understanding with those with similar experiences.

Was there anything that has surprised you about getting an ostomy?

Meghan: I think the most surprising thing is the ostomy community! There are a lot more people out there that have an ostomy than you know. It's not something as uncommon as you would think, and it's not limited to one demographic. People of all ages have ostomies, and they are all so supportive of one another.

Laura: It took me a while to figure out how to sleep comfortably with it. And while it rarely happens, it can make some pretty interesting noises at inopportune moments!

Finally, do you have any words of advice for a parent of a child who may need an ostomy? What encouraging message could you share?

Meghan: My biggest piece of advice is to not get too sucked in – meaning that there is a lot of information out there, both positive and negative. It can be easy to fall into a negative spiral, but just remember that everyone's experience is unique. You and your child get to decide how to perceive an ostomy and you get to choose your own mindset. Don't let anyone or anything influence how you feel, because at the end of the day the most important thing is that your child is alive, happy, and healthy.

Ostomy life can be a beautiful life. It can be a second chance to live the life you never knew you were missing, and it can bring on so many new opportunities. It's up to you to decide how you want to live.

Laura: Oof, this is a hard one.. As a mom, I always want what's best for my child. It's so scary and overwhelming to have a sick child and to feel like you might make the wrong decision when you are trying to help them feel well again. The advice I would give would be to trust your gut, and to trust that if an ostomy is medically what's best for your child, that you as their parent will be able to provide the love and support they need to physically and emotionally recover from the changes that having an ostomy will bring for both your child and your family.

The advice I would give would be to trust your gut, and to trust that if an ostomy is medically what's best for your child, that you as their parent will be able to provide the love and support they need to physically and emotionally recover from the changes that having an ostomy will bring for both your child and your family." -Laura

This concludes our interview. Clearly, Meghan and Laura unpacked a wealth of knowledge related to the physical, mental, emotional, and social changes that come with an ostomy. If you are looking for more information or would like to receive support, please feel free to contact me. My email is linked at the bottom of this page. I can direct you to an individual on the IBD Connect team that can help. Even though today's post was not clinically heavy, I still want to remind everyone not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child's individual treatment plan, please seek out the professional medical advice of your child's doctor. Before we wrap up this post, I want to give a huge shout out to Meghan and Laura. Their eagerness to participate in this interview speaks volumes about the hearts they have for supporting this cause. Thank you so much Meghan and Laura for an awesome interview! And as always, stay strong IBD Warriors/IBD Warrior parents!

"Ostomy life can be a beautiful life. It can be a second chance to live the life you never knew you were missing, and it can bring on so many new opportunities. It's up to you to decide how you want to live." -Meghan