Every ostomate responds to surgery differently. It's not a "one-size-fits-all" for the emotional and mental aspect either. Some view living with an ostomy as a new lease on life, yet for others it's devastating. Some people have a strong support system, while others feel alone and isolated.
It's important to be true to your own experience and try not to compare yourself with others. Acknowledge that it takes time to heal physically and emotionally. 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.”
Here are five factors that can affect a person's mental health and self-esteem.
Think back to when you first got your stoma. Do you remember how you explained it to others? When it comes to the level of disclosure, everyone is different with what is comfortable. Here's advice that I hope will help:
- When you're ready to share, start with people who care. Other ostomates and close family or friends can feel the safest.
- Rehearse your explanation before disclosing to acquaintances or coworkers. Have a way to deflect intrusive questions such as, "I don't really like talking too much about," or "Maybe I can explain more another time."
- Start by asking whomever you're telling if they've ever heard of an ostomy. If they're unfamiliar you may need to explain some basics first.
However much you choose to disclose is completely up to you. However it happens, let that be okay knowing your confidence will grow with practice.
2. Social Anxiety
It's common for any ostomate to have a bit of anxiety about pouch leaks, odor, or stoma noises. Although some things are outside of our control, there are ways of decreasing anxiety. Here are a few suggestions:
- 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. Ostomates should be able to resume normal activities but use caution in the case of high contact sports until approved by a physician.
- There are protective guards, undergarments, and belts for extra support.
- Emptying your pouch before activities and locating bathrooms ahead of time can decrease anxiety.
- Add new foods gradually until you know how it digests. For specific advice on diet and nutrition, talk to a certified nutritionist.
If you feel overwhelming anxiety and excessive self-consciousness, that could be social anxiety disorder (also called social phobia) which is a mental health condition. Seek expert advice from a doctor or therapist.
3. Loss & Grief
The term “mind-body connection” refers to the way your body responds to the way you think, feel, and act. This means that our thoughts, feelings, beliefs, and attitudes can positively or negatively affect our biological functioning. Many different emotions can come up before and after ostomy surgery, including shock (unable to process), fear, sadness, denial, retreating, anger, depression, acceptance, and bitterness. All of these reactions are normal.
Ostomates experience a physical loss due to the lack of ability to control natural body function which can make us feel different or separate from others. This loss of control should not be minimized even if the ostomy saved your life. Some studies draw parallels to amputees, except ours is a hidden amputation.
Mental grief can be a painful process through which ostomates adapt to loss. It's normal to have the thoughts of "why me?" but those can get us stuck. Once you're ready to move forward, instead of focusing on things you can't control, focus your energy on what can be done to improve the quality of life.
Be open to getting help. It's important to be able to express your feelings to a therapist, by journaling, or with an online community. Support groups are a wonderful way for patients to share experiences and gain encouragement about their situation.
4. Body Image
Appearance changes can cause feelings of inferiority, disfigurement, lack of femininity, feeling alienated from your body, or feeling angry at your body. Losing a bodily function can change your self-worth. Try these to reframe your perspective:
- Ask yourself: 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.
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're struggling to accept your stoma and need help, please reach out to me.