In 2017, I decided to undertake a PhD in Clinical Sexology to further my career, but it wasn’t until my final year in 2019, when writing my dissertation, that I felt emotionally strong enough to use my suffering as a basis for my work. What I had found in my own ostomy journey was that there wasn’t a lot of information on how my ostomy might have affected my sexuality, self-esteem, and overall emotional well-being. There was plenty of information on how to manage an ostomy from a practical sense, but no one wanted to talk about what it felt like to live with a bag.
My story
I remember the first time I was told that I should be grateful because my ostomy had saved my life. I felt so alone, isolated and confused by the conflicting emotions I was feeling.
In a world dominated by social media, I felt far from grateful and far from perfect. I felt broken and ashamed! Perhaps now would be a good place to tell you a little bit about me. I am a 50-year-old currently reversed ostomate. To date I have had 10 surgeries – seven bowel and three as the result of collateral damage.
My medical journey started at 14 years old in the UK; after a routine appendectomy, I had years of gastrointestinal issues such as weight loss, acid reflux, fainting, headaches and severe constipation. I was in and out of the emergency room but in 2013 we were finally able get answers. I had surgery and a cluster of my bowel (more than 12 cm in diameter) that had fused together and was blocking the flow, was removed.
Unfortunately, within 6 months my symptoms re-surfaced. An ultrasound highlighted a large, black mass at the joint of the re-section and I needed more surgery. Within a couple of days, I had a high fever and I was rushed back into the operating room; I had developed sepsis. The area was recut, removed, repaired and an end ileostomy and Hartmann colon pouch were added – a bag. After that surgery, my recovery was slow, and for the next year, I fought to adjust to my life as an ostomate. I battled with my bag leaking and falling off, low self-esteem, intimacy concerns, shame and trouble accepting my new body. I felt unprepared for an ileostomy and overwhelmed by how quickly things had transpired.
A year after my last surgery, I elected to close the ileostomy. Surgery was uneventful, but on day six I began to deteriorate and develop abdominal pain. A CT-scan showed a large volume of gas in the abdominal cavity due to a leak. My bowel had thickened – again. I was taken into the operating room and during surgery, required resuscitation. When I entered the ICU, I crashed and was resuscitated for the second time, then placed into a medically induced coma. Waking up from a coma after 9 days, tied down (for my own safety), fully immobilised with a breathing tube down my throat was indescribable. I was unable to walk and one of my lungs had collapsed. I was diagnosed with PTSD as a result my harrowing ordeal. There were certainly times in the months to follow that I wished that I hadn’t been resuscitated.
I did not understand the reason for my suffering or why life had to be so cruel. What I know now is that I have an adhesive disease wherein my body develops adhesions quickly after surgery, and they result in a variety of chronic symptoms, such as abdominal distension, pain, nausea, and abnormal bowel movements. Unfortunately, there is still a paucity of literature regarding the evaluation and management of patients with suspected abdominal adhesive disease, and so patients like me just slip through the cracks, often being told it is psychological.
Reversal of the most basic bodily functions
What I noticed over the years of living with an ostomy was that no one talked about how the reversal of some of the most basic bodily functions and the loss of control over those processes (i.e., defecation, noises, leaks and smells) would affect how I felt about myself. As an ostomate, I had different feelings about my body than before, not only because of a heightened awareness of the physical change, but because my body with a stoma was oftentimes perceived as unattractive or unusual by others; I was pitied, and it created a rift between my body and myself. At times I felt excluded, inadequate, guilty, and shameful. The challenge for me was to re-establish a sense of identity that was unrelated to just to my body, so that I was recognised for ‘myself’, despite the way my non-conforming body with a stoma made me feel.
A confusing relationship between body and self
Now when I looked in the mirror, I saw lines and scars where there used to be none and when I looked at my newly reconstructed body, there was a disconnect. As a therapist, I knew that central to the process of reconnecting with my body was the need to develop a new sense of self with my stoma. I needed to do this by getting to know myself once again, listening to my body and mind and taking charge. My stoma had disrupted my unconscious relationship between my body and myself, and what existed before surgery now felt different. I knew that grief, shame, and anger were not far behind my traumas, and I felt a tremendous amount of anger towards myself and/or my body. Whilst I knew this type of shame, disappointment, and anger would only hold me back from reaching my healthiest and happiest life, I had to find it in myself to forgive my body for betraying me.
Lovers versus caregivers
As a sex therapist, couples will often ask why the dynamic of their relationship has significantly changed post-surgery. What I learned in the early years of living with an ostomy was that, while undergoing surgery and treatment, it was normal for there to be less emphasis on the sexual aspect of the relationship. For what was a considerable amount of time, I needed my partner; to drive me to doctor’s appointments, to fetch my meds and to be strong for both of us. My partner took on a role of caregiver in the relationship and whilst they were able to be pragmatic, making light of noise, dismissing occasional leaks as unfortunate accidents to minimise embarrassment, and quickly running baths and changing bedclothes as the need arose, they were not always able to adjust to these transposed roles as caregivers and lovers.
The new you
As an ostomate, I did not feel like the same woman I was before I was sick. For those around me who had not gone through that directly, it was hard for them to understand. The truth is that after an ostomy surgery, we aren’t the same but with new health we can be so much more. What I needed to learn post ostomy was that my fight had taught me a lot about who I was and what I was made of. For me, this fight for health created a fire within and a new perspective on life that wasn’t there before.
Sometimes it can take something extreme to make changes in our lives. For me it was an ostomy. Through DocLeBrocq, I teach female ostomates how to reclaim their body, mind and sexuality using my proven tools to heal past their pain and step into their personal power.
The kintsu method
Through my ground-breaking Kintsu Method, I guide my clients through the process of collecting their broken pieces (the pieces that make them whole) and patching themselves back together while adding something into the mix that makes them unbreakable. I have called my method ‘kintsu’, in reference to the Japanese art of mending broken pottery by sealing the shattered pieces together with GOLD; therefore, making the pottery more beautiful and stronger than ever before. Through the art of repairing the broken self with GOLD, my programs teach female ostomates to reclaim their health and sexuality.
Discovering GOLD: from Surviving to Thriving for Ostomates
The GOLD kintsu method allows you to:
- Guide your belief that you are more beautiful for having been broken
- Overcome your feelings of bodily betrayal
- Liberate your endless possibilities for living with an ostomy
- Demonstrate your mastery over any personal challenges.
I can help
There are a few more ways I try to help other people with a stoma:
- I have published a book called Discovering GOLD: from Surviving to Thriving for Ostomates
- I run a course, ‘Finding normalcy’, which is designed to help female ostomates connect with their feelings and addresses how an ostomy can affect a woman’s self-esteem, confidence and body positivity (or lack thereof). It also normalises the concept of being betrayed by the body. Female ostomates will learn resilience despite their medical traumas and the associated implications for their overall wellness.
- I run a programme called ‘Bodily mastery – transforming your life’, in which I teach female ostomates everything they need to know to thrive post-surgery. It contains immediately actionable advice as well as cutting-edge therapy methods based on years of research and client experience.
- I also run a coaching group of anyone who has taken my courses, called the Golden Hour.
If any of the above sounds valuable to you, please get in touch.
Dr Suzie Le Brocq is a board‑certified sex therapist
Website: www.doclebrocq.com/gold
Instagram: DrSuzieLeBrocq
Twitter and Facebook: DocLeBrocq