Video Vignettes: Through Their Own Eyes: Living With Ostomy

“The same thing could be said about guys who go to war, that unless you’ve been there you can’t really understand what it is like and so your really best buddies are the ones that have been warriors like you…Those are the people you can really relate to the best, even more so than your own family.”  ~member of the Ostomy Support Community on Inspire.

People who have been through the operation that removes all or portions of their colons, ileums or bladders must live with and adapt to an enormous change.  The experience transforms them.

Nearly 1 million Americans today live with ostomies.  Over 100,000 more undergo this surgery yearly.1

Reasons for Ostomy Surgery

Broadly, there are three types of ostomies; colostomy, ileostomy and urostomy.  An ostomy is the surgically created opening that allows for waste to leave the body.  In the case of colostomy, a portion of the colon or rectum is removed due to (most commonly) cancer, diverticulitis, imperforate anus, Hirschsprung’s disease or trauma. 2  The remaining segment of colon is moved to the abdominal wall and an opening is created.  Waste can leave the body through the stoma (the end of the colon that protrudes through the opening in the abdominal wall.)

The most common reasons for an ileostomy include ulcerative colitis, Crohn’s disease or familial polyposis and for urostomy, bladder cancer, spinal cord injuries, malfunction of the bladder and birth defects such as spina bifida. 2

An ostomy is a major treatment route to take but it is often a life-saving recourse.  Dana Jennings described his experience in a 2010 New York Times article: “After being chronically ill for more than two years, I was  relieved to have the colon gone.” 3  As a member of Inspire’s Ostomy Support Community revealed in this video, her ostomy saved her life  and those who have “been there” on Inspire helped.

Coping with an Ostomy

Bodily functions and wastes can be difficult to talk about and the process of adapting and returning to a functional life can be daunting after this surgery.  For urologist Dr. Joe Salisz, a surgeon who performs ostomies, becoming a patient with a urostomy was life- and career-changing.

“After having ostomy surgery in 2011, I was distressed by the red colored stoma and appliance on my side. In an effort to feel ‘normal’ again I had to face the issues I was having and start finding solutions. How could I change out of street clothes into scrubs in the hospital or gym locker room without feeling self conscious? How could I exercise without worrying that my wafer and appliance would fall off? How could I feel confident during intimacy? How could I stop worrying?” 4

His care of patients has changed.  “I have a deeper understanding and empathy for people with illnesses, and I feel blessed with the unique opportunity to assist ostomy patients overseas with quality of life issues.” 5

Issues with Acceptance

Adjusting to an ostomy and accepting it can be a difficult journey.  When a member of the Ostomy Support Community on Inspire expressed significant frustration with his appliance leaking, other group members immediately answered his cry for help with supportive questions and guidance.

“Where are you leaking from?  Is it under the wafer or does the entire appliance come off during the night? If under the stoma, do you have wrinkles where it is leaking?  We need more information from…you before we can help you….If your bag gets too full during the night, maybe you can set your alarm to empty during the night. If leaking under the wafer and the appliance stays on, then you have to give us more information.”

Other members attempted to reassure.

“You have been through so very, very much and I can appreciate why you are so discouraged. This isn’t what any of us expected to find at the end of our rainbows, and at some point in our journeys, we’ve all been where you are now (and, at times, I am still very much there). That said, I am BEGGING you to listen and to respond to the pleas of those in this group who want to help you–the people here are WONDERFUL and they truly do care!!”

Still others wanted to assure this fellow ostomate that they have also experienced the desperation and pain that he/she feels.

“If you backtrack [through] my posts I too am very upset that I have an ostomy (cancer). In fact on some days I hate it.  I felt that if I were to hate my new life and expose that, that meant that I wasn’t grateful, but that is far from the truth. Even my oncologist agrees with me, that this is terrible, and that coming from her, helps me to heal. In fact I appreciate it also when close friends say to me, “boy that must be difficult”. However; I am not powerless over living my life and I do live with a stoma, to the best of my ability. “

“I understand your frustration I’ve woken up in the middle of night with leaks that covered me clear down to my feet! Leaks are not fun and they cause so much anxiety as well as the skin irritation. Getting leaks under control is the key to living with an ostomy.”

Members of Inspire’s Ostomy Community provide guidance for odor control.

“I can alway smell an odor, even after I change the bag….At night the smell that comes out is almost as bad as when I’m changing the bag. During the day after the bag starts to fill the odor seeps through the bag onto my clothes and skin. Is it the product or me?

Members offered solutions.

“Sounds like a call to your WOCN [Wound, Ostomy and Continence Nurse] for an evaluation, and perhaps a change of appliances might be in order. Not everyone gets perfect results with every manufacturer, but odor isn’t normal and you shouldn’t have to live with it. Your WOCN can take a look at what’s going on firsthand and make a recommendation. Don’t change your pouch right before you go, though–you want her to be able to actually witness the problem so she (or he) can correct it. Good luck–”

“________[company name] will take care of any odor you could have. It is a lifesaver for me. Never go without it! It is the only one that works.”

“I have an ileostomy and have been using M9 drops for years. “

“I put…[breath mints] and a little bit of [company name] mouthwash in my bag every time I empty. I also rinse the bag with mouthwash helps with odor in the bag and also covers the smell in the bathroom…I am only 4 months out since my ileostomy and still learning it takes time to figure out what works for you.”

Still others worry about how to talk about their appliance and how to experience intimacy again.

“How do you regain a normal relationship again with your spouse after ostomy surgery? I had my surgery in July 20__ and still do not share a bed with my hubby. Have tried sex twice and it was uncomfortable both times.”

“The first thing that I do is empty the pouch, then I tape it up so it is out of the way or sometimes I use a wrap depending upon my mood. The pouch bothered me more than my husband. I didn’t feel comfortable at all in the beginning and thought the same thing that it was going to hurt my stomach or leak. It just took some time and my husband was very understanding. ________[company name]  just came out with a new black lace wrap that I am thinking of buying….

There is nothing that is out-of-bounds for this group.

“After the colostomy, I felt that this pretty much ‘sealed’ any chance at intimacy, so I have avoided any close friendships-at all. Now I am finding this isolation to be harder and harder. I have recently met two very interesting men, and have seen one for coffee. He has expressed quite an interest in me, and I am holding back because at some point, I will have to tell him and I have NO idea where to even start.”

A fellow member replied:

“I think I would be perfectly honest. Tell him you have a problem you need to tell him about and then tell him. Tell him you hope it won’t make any difference but if it does you’ll understand. Honesty is always the best policy. You don’t have a lot invested yet in this man so now’s the time to tell him.”

Final Thoughts

Members of the Ostomy Support Community on Inspire provide a tremendous amount of encouragement and assistance to each other every day.  Although the surgery is often life-saving, the trauma of losing  body parts that function to remove waste cannot be underestimated.  Wound care nurses are go-to advocates for patients.  And the Ostomy Support Community members on Inspire are quick to refer fellow ostomates to them.  But, sometimes it is helpful and easier to describe to people who are dealing with the same issues that may be causing embarrassment or interfering with living life to the fullest.  Ostomy Support Community members on Inspire are like fellow soldiers who have been in the trenches.  Their empathy, selfless honesty and encouragement have made the difference between being unable to leave home and interact in the world to being able to embrace life again.

For more information about this support community, any of the over 200 support communities or starting a support community on Inspire, click on the links or please contact us at team@inspire.com.

See our eBook “Experts by Experience 2017”

Download eBook

Inspire offers a trusted community to patients and caregivers.  Our goal with this blog, this website and our content is to provide the life science industry access to the true, authentic patient voice.  In so doing, we support faithful operationalization of patient-centricity.  Take a look at our case studies, eBooks and news outlet coverage.

Reference:

1http://www.ostomy.org/uploaded/files/ostomy_info/uoaa_ostomy_101_infographic_2017-08.pdf?direct=1

2 http://www.ostomy.org/Home.html

3 https://well.blogs.nytimes.com/2010/03/02/life-with-a-pouch-on-the-side/

4https://ostomyconnection.com/news-and-culture/the-team-that-created-a-technology-based-ostomy-pouch-cover

5 https://ostomyconnection.com/news-and-culture/the-team-that-created-a-technology-based-ostomy-pouch-cover