Every ostomate is different. It's not a one-size-fits-all for the emotional and mental aspect either. Some view ostomy surgery as a new lease on life, yet for others it can be devastating. Some people have a strong support system, while others feel alone and isolated.
The goal is to be true to your own experience, try not to compare yourself to others, and acknowledge that it takes time to heal physically and emotionally. As research professor and 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 okay.
- 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 it’s your choice of who you tell.
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.
2. Social Anxiety
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, but use caution in the case of high contact sports until approved by your physician.
- There are protective guards, undergarments 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. Add new foods in gradually. For specific advice, meet with a nutritionist.
3. Loss & Grief
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's 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.
- 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), fear, sadness, denial, retreating/minimizing, anger, bargaining, depression, acceptance, apathy, bitterness. All of these reactions are normal.
- 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.
Ultimately, it’s 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.
4. Body Image & Self-Esteem
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.
- 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 perspective of yourself from victim to 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!
- 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).
- Write messages of affirmation and put them around house or in your phone as reminders.
What messages do you believe about your body or tell yourself when you look at your stoma? It's important to challenge unhelpful messages.
5. Sexuality & Disclosure
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’ll need to bring it up. Honestly, it’s a good test. A good partner will truly be with you for you, not for how you poop.
- 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.
- 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.
- Wearing waistline wraps can decrease anxiety such as emptying your pouch before intimate moments, and there's also ostomy lingerie 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.
If you are struggling to accept your stoma and need some help, please reach out to me.