meet Harley

meet Harley

I was diagnosed with Cervical cancer at 24 years old in 2017 which led to multiple surgeries, chemotherapy, radiotherapy & brachytherapy. Due to radiation damage, I had a perforated bowel/ sepsis 6 months after treatment finished which led to further colostomy & ileostomy surgeries that were fully reversed in the summer of 2019. 

My first encounter with a stoma was awful, I hated my body & prayed for the date of my reversal surgery. I wore loose-fitted clothing in darker colours in the case of leakages. The ileostomy in particular was very active and I rarely went out. Red wine and spice in my foods were triggers which were also my faves! Due to this, I spent the majority of my time at home until my reversal. 

Fast forward to January 5th 2022, I receive confirmation that my cancer had returned. I was given the option of a major pelvic clearance surgery or palliative care. I have been living with a permanent colostomy and urostomy since my pelvic exenteration surgery in February 2022.

Since leaving hospital, a month post-surgery in March. For the first six weeks, I remained at home in loose-fitting clothing to allow my stomas to do as they please without waistband pressures and also omitted any clothing items preventing my surgical scars from healing. Top tip: wear a nightie! The freedom it allows especially in those first couple of months is a revelation! 

Due to the seasonal temperatures increasing, the adhesives on bags can fail due to interactions with moisture such as sweat. If the weather is hot or likely to increase further in the day, I usually add flange extenders to the base of my one-piece bags for added adhesion. In addition, I use ring seals around my stoma before applying my bags as this adds to the strength of the seal between my stoma & the bag eliminating leakages. 

As time & my recovery progressed, I wanted to go for regular long walks to build up my stamina. The weather in the UK in spring was typically nippy! With the odd burst of sunshine. Here I wore high-waisted gym legging sets or light shorts & T-shirt sets that allowed movement with ease. I was able to sit the waistband above my stoma site which enables the bags to fill up freely. I chose navy blue and black due to worries of leakage and the bags were less noticeable under the clothing when partially filled. I also carried with my loose-fitted jumpers to wear if the weather got colder or I needed to hide my bulging bags. 

 During the cooler days, I relied heavily on jumpsuits or high-waisted trousers. These allow for the feeling of security should something happen with a bag and I would be confident to reach a toilet to attend to the issue if need be. I am tall so I purchased mainly from next & boohoo. I also chose items with patterns as these draw the eye away from any bulge that you may feel is seen when your bag is filled. 

I avoided denim due to the lack of stretch from the material and the pressure this can have along the line of the stoma sites which could in turn block the exit of waste to the stoma bags or cause the adhesive flange to come away from the skin. Unfortunately, I will have to finally throw away a number of lower-waisted jeans. On the flip side - more shopping!

During the summer I like to wear ditsy dresses as these are light and flare out. Perfect for BBQ or drinks in the garden. I have various colours now including white! Underneath I wear nude or black Spanx-style underwear depending on the colour of my outfit, which enables my bags to be tucked in and to sit flat against my body. I prefer a thong back to remind me I am not quite ready for Bridget jones pants! 

For work, I mostly wear high-waisted skirts with a pattern and a plain top. The pattern distracts from any bulge and a plain fitted top adds a nice outline of my upper body but allows the skirt to be the star of the show. Trust me, you will look great and no one’s eyes will be diverted to your bag! 

High-waisted clothing in any form is my greatest friend at the moment as both of my stomas are just below my belly button. As my confidence grows, I aim to experiment with new clothing ideas like cute high-waisted Co-Ord sets, especially for future holidays. 

Sometimes I add accessories to my outfits such as belts (above stoma sites), bags and my all-time favourite - hats! I also add a shoulder bag when wearing casual clothing as I can position this in front of my stoma bags when they are active and I am out. Accessories like these add va-va-voom to an outfit! 

Personally, in the last few weeks, I have felt dressing up in comfortable, stylish outfits really helps me forget momentarily that I have two stomas. That in itself is a real gift. I am only 4 months post-surgery and I hope to see further improvements as time goes by. 

It is important to try to embrace your new style as a positive, try styles that may not have been your choice before but now may really well with your new bag/s. Experiment! Even if you are not confident, try something different, you may be pleasantly surprised. 

Clothing as an ostomate in summer time is daunting to say the least. We have adhesive issues from sweat that can cause leakages. We want those nice cute clothes but they are in light colours and we do not want to risk an incident! We tend to worry often which causes a lot of anxiety and effects our confidence, working lives, relationships, hobbies & socialising. It is not easy but there are ways to reduce our anxieties and to feel confident again in everything we wear.