Having a stoma for whatever reason is a life changing thing. Whether it is expected and planned, or done through an emergency with no warning, it is physical and mentally one of the hardest challenges you will face. Your support network is everything. But what if your support network becomes a negative influence on your recovery? Social media is saturated with positive posts, body positivity and disabled bodies awareness. But what I haven’t seen is individuals speaking out when they have had a negative reaction to their stoma from their partner.
I am married. The surgery was planned and essential to get my life back. My partner knew what to expect and had seen stomas before due to a friend of the family that has needed one. Despite this, they have not responded the way I would have liked. Our brains do not expect to see one of our internal organs on the outside of our body. The emotional reaction to seeing it for the first time can be fine for some and devastating for others, partners included. The British Journal of Nursing shares that:
‘More than 20% of stoma patients experience long-term significant psychological challenges and concerns that, unrecognised, can affect and impact not only the patient, but also their family, friends and work situation’ (Notter and Chalmers, 2012; Black 2018)
Partners have to work through the feeling of loss too, knowing that their partners body won’t be the same and that they will be integral to the recovery and acceptance to the new stoma. But what if the partner can not accept it? What if they do not feel the want for sex and intimacy anymore? I certainly worried that this would happen, and if you search through the social media support groups you will find lots of ostomates worrying about it. Most of the time ostomates report that they have found their way and life is different but better. An article based in the United States of America investigated the ways in which husbands and male partners affect the psychosocial adjustment and HRQOL (health related quality of life) of female cancer patients with permanent ostomies.
The report details three types of partners, those that were fully supportive, those that partly supported them and some that did not. Of a collective of 22 ostomates, 4 report that their husbands were not accepting of their stoma and sex and intimacy stopped. From personal experience I can say that it is certainly possible that partners can not accept it, and all intimacy stops. It is simply heart breaking. You make the decision to go ahead with stoma surgery to give you a better quality of life. The chronic pain stops. You can return to work. You can live again! Yet a dark dark cloud hangs over you, that the person who is supposed to love and support you no matter, what can not see you for your beautiful and strength, but for the bag of stool that you carry. It is all about perspective. When you are both on the same page magic can happen. When you are not, the darkness casts over you and being the ostomate that has been rejected personally, it affects most aspects of your life.
If you are experiencing something like this the following helps me get through:
Talk to someone trusted about your feelings and don’t hold back. If you partner won’t face and talk about the problem you still need an outlet. If you don’t feel comfortable talking about it, journal it instead.
Do you want to spend your life with someone who doesn’t see you for the survivor that you are? A hideous decision to make but an important one. You both deserve to be with someone who makes you truly happy. Really think about this.
Couples counselling or individual counselling is an option for talking through issues with a mediator there. It can be positive to have a fresh perspective from someone who isn’t in the relationship or knows you personally.
Be honest with how you feel and encourage them to be honest. This can be brutal. It feels like after all the fighting through illness your best friend is stabbing you in the back. Do they want to work through their problems and thoughts? Can you come to a resolve?
When being intimate ensure your bag is empty before it, don’t risk it or the worst may happen! If a leak happens try to laugh about it. It may be the first time and not the last time.
Give yourselves time. Don’t expect to go straight back to the sex and intimacy you once had. It will take time to learn how to navigate intimacy with your new device. Waistbands, corsets, body suits and many more options are available if you would like to keep your bag concealed during intimacy.
Here are some options below to feel confident and sexy:
Most importantly know your worth. It is their problem not yours. You are perfect the way you are. We all have ‘something’ whether it be glasses, wonky teeth, allergies, or a stoma. Own what you have been given. Reach out to friends, family, social media support groups, or stoma ambassadors that say their inbox is open. You are not alone. You deserve happiness.