Better Fashion Sense with 2 Stoma Bags!
All my life I have struggled to know how to dress! I know it sounds funny but I always felt I didn’t quite have that fashion ‘sense’ that some of my friends in school or university naturally had.
However it has taken a rare illness (Pure Autonomic Failure), 8 years of catheters, an ileostomy, many hospital admissions and now a urostomy for me to not only dress well but want to look good and on trend!!
A little bit about me:
10 years ago, I was in my 3rd year of university studying Radiotherapy and Oncology and I contracted Campylobacteriosis from ready-cooked chicken purchased from a well known-supermarket chain. I was quite ill from this and lead to being admitted to the hospital for 10 days. Little did I know then that this moment would be the catalyst that triggered a chain reaction of multiple organ systems failing for the rest of my life.
My bladder was the first organ to be affected and at first, I started getting continuous urinary Tract Infections (UTI). Eventually, I noticed that I could not empty my bladder like I used to and I was in full urinary retention whilst working in a busy radiotherapy department. I started self-catheterizing but this didn’t always work and eventually, I had a urethral catheter for a while. This was by far the worst catheter for me and the spasms were horrific. Eventually, I had an operation to insert a catheter through the gap in the supra-pubic bone called a Supra-Pubic Catheter (SPC) although this was slightly better I still struggled with spasms and many UTI infections.
During this time my bowel had also started to fail and had stopped functioning. I was unable to push and the peristalsis in my bowel had failed. This resulted in using a product by Coloplast called Peristeen Irrigation where you insert rectal catheters every day and pump 2 liters of water into your rectum which you eventually expel. After a year of this not really working or helping I was eventually decided that I needed ileostomy surgery in 2012.
Now before my surgery, baring in mind I had previously worked in a hospital I did not know much about stomas. Part of my natural protection is not to remember challenging and difficult times. Due to this, I don't remember much of this time but I remembered not wanting to know much about the surgery. What really helped me was the week of my surgery on the ward I met an amazing lady who was younger than me (I was 25 at the time) and had her ileostomy for 5 years.
She showed me the ropes and this was far better than any information I could have read. She encouraged me to name my stoma and now I try to pass on this advice to new ostomates. She will never realize how much she helped me during that time. I struggled with leaks at the beginning and I remember thinking ‘what have I done.’ Eventually, I adjusted to life with a bag and it was easier. I put on weight and was in less pain regarding my bowel. I still had the SPC which was problematic but slowly I started adjusting to my ileostomy (called Bob).
During this time, however, I noticed I wore very grey and dark clothes and never wore anything tight. Everything seemed to be baggy and comfortable. I felt I was in a bit of crisis over what I could wear. I was not aware an online community existed and now it seems odd how much I struggled regarding clothing. Accepting the ileostomy came in time but I could not accept the SPC. I was a shadow of my former self and through my clothes, this was very evident. I had lost any fight in me, not because of my ileostomy but coping with life with my SPC and still at the time not knowing what had caused both my bladder and bowel to fail. Questioning if this was in my head by myself and doctors was a very very painful place but 6 years after I got ill I was eventually seen in the Neurology Hospital in London and was diagnosed with Autonomic Neuropathy in the form of Pure Autonomic Failure and Postural Orthostatic Tachycardia Syndrome (POTS). The relief I felt when I got my diagnosis is indescribable but my disease is very rare and that has brought its own complications with medical professionals.
So in 2015 after a routine cystoscopy, a urologist found my bladder was extremely small and damaged but more worryingly a biopsy result revealed that the cells had started to mutate and within 2 weeks I had my bladder removed and an ileal conduit (urostomy) formed. This happened so quickly I didn't even know this was an option and I assumed I would have my SPC for life. This was a tiny beacon of hope that I could get back my life and start living again. I was in bits emotionally, mentally and physically with the pain from my bladder so I welcomed this surgery with open arms.
I remember thinking when I was admitted the night before “How would I cope with 2 bags and how would I dress” To be honest having both balances me out! The surgery itself went really well however after 10 days I contracted c-diff off another patient and was in isolation for 3 months with numerous complications. Due to this episode, I have developed diverticulitis and pseudomembranous colitis in my large bowel (which cannot be removed due to other health concerns). Even though these complications occurred I still do not regret having the surgery. When I got home I embraced the ‘new me’ and life has never been the same again!
A few weeks after surgery I wore a dress with no leggings or tights. Now, this may not seem epic to you but for me it was. For 8 years having a catheter bag strapped to my calf continuously was difficult wearing dresses without leggings or tights to cover the bag. One hot summer day I remember wearing a dress and wearing a leg warmer over the bag but I only did this once. Having my legs free after my urostomy surgery was the best feeling in the world!
I found I wanted to embrace life to the fullest and I could see how much my stoma bags had changed my life for the better! It was in that moment I decided I wanted to relive my 20s in my 30s and embrace ‘fashion’ looking nice and being stylish. Dressing up makes me feel good and wearing different colors again, not dark dull colors is healing for my soul. There is amazing stoma support wear out there and I advise to find a product that works well for you and wear it when you go out. Not only to prevent hernias but also to help you feel better and 'flatter'
Unfortunately, my journey is still ongoing with multiple hospital admissions with sepsis and my ileostomy has prolapsed 8 inches. After 8 failed refashion surgeries this is something I have to live with. This can sometimes affect my body image and I can get frustrated but during these times I think about the depths of despair I was before my 2 stomas and life now isn’t that bad. They are a gift and today I treat them like that. Finding gratitude helps me to continue living life to the fullest, help new ostomates and want to give back what was given to me.
I love where I am in life at the moment and my stoma bags saved my life. However, I can go further than this...I have riches now beyond my wildest dreams in the form of ostomate friends, an amazing man who has an ileostomy (that’s another story :p), a blog and doing talks at my local university.
What I have found is human beings are very resilient and adaptable. My acceptance of my bags did not happen overnight and my life only really got better after my urostomy but having faith in the process and hope that life will get better eventually life really does!
I feel like I am actively reliving my 20s that were taking away from me and achieving goals I had always wanted to do. One of those is taking some pride in my appearance and wearing clothes I feel good in which I am doing! One day I would love to go to London fashion week!!