Skip to main content

Psychosocial aspects of having an ostomy

This past Saturday, Tiffany and I had the honor of speaking at the United Ostomy Associations of America's Regional Midwest conference. I was assigned the task of speaking to the patients, and Tiffany addressed the partners or caregivers. I wanted to share with you some of the highlights from my talk. I only had an hour for my session, and with about 100 people in the room, it was not nearly enough time. I love bullet points, so here you go:

We are all different! Every ostomate is different and not one size fits all for the emotional/mental aspect either.
Who had months to talk about an ostomy and weigh pros/cons? Who was this a more sudden decision for?
Who had cancer? Who had IBD? Something else?
Who had an ileostomy? colostomy? urostomy?
Who has a temporary? Permanent? Multiple temporaries?
What age where you when you got your ostomy? Under 20, 20s, 30s, 40s, 50s, 60+
Who was single when they got their ostomy? With a serious partner when they had it?
Some find a stoma life-saving, others it is devastating.
Some people have strong social supports and some people are isolated.

The goal is to be true to your own experience and not compare yourself and acknowledge that it takes time to heal physically and emotionally. As author Brene Brown says, "“Owning our story and loving ourselves through that process is the bravest thing that we will ever do.” 

· Think back to when you first got your stoma. Do you remember how you explained it to people? Everyone is different in the level of disclosure they feel comfortable with, and that is ok.
·However much you choose to disclose is up to you, but it can be harder to hold it in and have anxiety about keeping a secret from others.
·When you are ready to disclose, start small, and potentially share it with other ostomates and close family or friends
·Rehearse explanation for acquaintances or colleagues. Have a way to deflect intrusive questions like "I don't really like talking about it a lot, I just wanted you to know the general idea."
·It is sometimes helpful to start by asking whoever you are telling if they've ever heard of an ostomy.
·Your ostomy does not have to define you, and its your choice of who you tell.

Photo Credit: People Skills Decoded
Social life
· It is very common for ostomates to have anxiety about accidents, odor, or noise. Although there are some pieces outside of your control, there are very concrete ways of decreasing this anxiety.
-Be prepared with an extra set of clothes and spare supplies.
-Control the pieces you can like diet, odor-reducing products, finding the right pouching system, and clothing you feel confident in
·Activities and sports should not be impacted. According to most experts, patients should be able to resume normal activities, and in the case of high contact sports there are protective products and belts for extra support. Also, emptying the bag before activities and locating bathrooms around the activity decreases anxiety.
· Eating and diet can be tricky. Everyone is different so ask your doctor or ostomy nurse about their recommendations. In general, there are foods that are easy or hard to digest and can cause blockages, but most ostomates can eat almost anything. Add new foods in gradually. For specific advice, meet with a nutritionist. 
 Photo credit: Dr. Oz

 Mental health
·Statistics: a diagnosis of anxiety happens in up to 45% of ostomates and depression in up to 33% of ostomates
·There is a strong mind body connection- when your health is affected, your mental health is impacted.
·There are many different phases of grief and adjustment to having an ostomy. There is a very real loss of a natural body function of being able to control when you poop. This loss is not minimized even if the ostomy saved your life. When we were kids, we learned how to control this function, and used the toilet privately and appropriately. Now we have to learn all over how to manage this bodily function and it can feel out of control and make us feel dependent and anxious.
·This loss is sudden and significant and makes ostomates feel different or separate from others.
·Some studies draw parallels to amputees, except ours is a hidden amputation.
·All sorts of emotional reactions can come up:  Shock- unable to process, lots of fear/tears, denial/retreating/minimizing, anger/fear,  Denial, Anger, bargaining, depression, acceptance, apathy, bitterness. All these reactions are normal.
·Ultimately, its normal to have the thoughts of "Why Me?" but those can get patients stuck. Once you are ready to move forward, instead of focusing on things you cannot control, focus your energy on steps you can take to improve your quality of life. It is important to recognize what is in your control and be proactive in managing your illness and your stress. The focus should be on moving forward and what can you do from this point on.
·Important thing is to have places to express your feelings such as a support system, therapist, journal, or online community.
·Don't underestimate the mental and emotional impact. Be open to getting help and receiving support and acceptance from others.
·Support groups are a wonderful way for patients to share experiences and gain encouragement about their situation. It is also a place to feel normal and to swap ideas.
·Tell your story. Talk to others, write a blog, journal it. 
Photo credit: Career Rocketeer
·Appearance changes can cause feelings of inferiority, disfigurement, loss of femininity, feeling alienated from your body, or feeling angry at your body.
·Losing a function like being able to control pooping or passing gas can change your self-concept.
·What messages do you believe about your body or tell yourself when you look at your stoma- write a few down? Look at this list and identify any negative messages you tell yourself.  It is important to challenge unhelpful messages. Some questions you can ask are: Is it true? What evidence do you have to believe it or not believe it? How do you react when you believe that thought? Who would you be without the thought? What else can you replace that thought with? What would you tell a friend who is struggling with that thought? 
·Reframe your perspective- What did you lose by getting a stoma? What did you gain? Realize the lack of options you had and how severe the illness was that you had to do this. Appreciate that you get another chance at life and reconsider your life priorities.
·Change your view of yourself as a victim to a fighter/survivor
·Define yourself and live out your purpose. An ostomy is just one small part of you- it doesn't define you.
·Embrace your scars, they tell your story of what you have overcome and are your battle wounds, so be proud!
·Buy clothes that you feel confident in.·Stop believing in the media's version of beauty and look for beauty all around you. Cut out media that is clouding you with unhelpful messages (like TV, magazines, music). Check out Awestomy's "You have a right to remain sexy" campaign.
·Write messages of affirmation and put them around house or in your phone as reminders.

Photo credit: Biola University
·One thing I hear a lot with ostomy patients is the stress about when to disclose your ostomy if you are single and dating. In my opinion, the earlier the better, but definitely once you are approaching intimate moments, you need to bring it up. Honestly, its a good test- a good partner will truly be with you for you, not for how you poop, and will be happy you are healthy enough to date because of your life-saving ostomy.
·Disclose using simple language and don't get too technical. Emphasize why you chose it and what it did positively for you. Your partner will most likely take their cues from you. If you portray it as a devastating and sad, they may be concerned. If you portray it as positive and life-saving, they may not think twice about it.
·It is important to have an ongoing open dialogue with your partner as they may have questions or concerns. Also, talk through expectations for sex and make sure to ask for what you want and need. It can be helpful to talk about your fears and hopes regarding sexuality.
·Control pieces you can to decrease anxiety such as emptying your pouch before intimate moments, and also there is wonderful linergie that can make people feel more comfortable.
·Check in with yourself about your sexual desire. Low self-esteem, medications, or mood disorders can decrease this so its good to talk about this with your doctor or therapist.
·Experiment with different sexual positions, and have patience and humor as you do this.
·Allow yourself to be touched and held as is comfortable, even if you don't feel sexy.
·Your biggest sex organ is your brain! Identify thought patterns that are not helpful during your intimate moments.

·This is an inventory that is used in research to see how ostmates are adjusting to their ostomy. It’s a helpful tool when looking to see if you have accepted your body with your stoma, or if you still are struggling and may need some help. If you decide you would like to accept your stoma more, please reach out!

Popular posts from this blog

Let's Talk About "All In Your Head"

If I had to vote for a phrase, just 4 short words, that cause more problems in our society than most others it would be these:
All in your head.
To hear these words as a person with medical symptoms brings about such a cascade of thoughts. Anything from "My doctor doesn't believe me" to "Are my symptoms really happening?" with corresponding emotions of anxiety, confusion, anger, even rage.
I spend a lot of time undoing the damage these 4 words can do in the patients I see. They've been told, either directly or indirectly, their disease is psychologically based. And that means it's really not that bad, that they should just get over it and move on. It's a running thread in most of the patients with any "functional" diagnosis I've seen, such as irritable bowel syndrome, but also appears in those with "organic" conditions - those diseases perceived as real like inflammatory bowel disease.
These 4 words are part of the fundamenta…


I've been thinking a lot about how we live in an era of infinite access to infinite information (thanks, internet tubes!) yet we still fall into many of the well-established psychological laws, if we can call them that, of human behavior.  Don't worry, this isn't going to be some drawn out post on social psychology. Wikipedia is great for that.

I want to talk about bubbles.  Information bubbles, that is. And how each one of us lives in one to some extent, no matter how educated or enlightened we see ourselves to be. And even if we know we live in said bubble, it takes being shown information that directly conflicts with how you think things are, or should be, and the result is you feel kinda ew - the technical term for "ew" being cognitive dissonance.

I live in a bubble.

In my bubble is the world of academic medicine, academic health psychology, and a circle of psychologists dedicated to people living with chronic digestive illness.  I live in Chicago, a major me…

Medical PTSD

“It is just an illusion here on Earth that one moment follows another one, like beads on a string, and that once a moment is gone, it is gone forever.”  - Kurt Vonnegut, Slaughterhouse Five 
A few years ago, my gastroenterologist wanted me to have something called an esophageal manometry to better understand how my newly diagnosed eosinophilic esophagitis may have been affecting how the muscles in my esophagus were functioning.  I work with the guys who wrote the book on esophageal disease, and these guys do a lot of manometries. I know all about esophageal manometry.

My mind immediately went to images of a small bowel enteroclysis I'd had at least a decade prior. My body grew tense and it was almost as if I was back in that cold room with the cold metal table and the cold radiologist, who just didn't believe me when I told her how bad my gag reflex was before she placed a tube down my throat to inject my small intestines with barium.

It took what seemed like forever to get th…