Rachel received compensation from Coloplast to provide this information. Each person’s situation is unique so your experience may not be the same.
Rachel is ‘Rocking 2 Stomas ‘ - here she shares her story and how she has found hope to live the future she wants.
I was staring at myself in the mirror looking at my ‘ileostomy’ and my leg bag on my calf from my Suprapubic Catheter (SPC) and I was full of fear and the unknown...
It was the start of the summer and that morning I was told the results of my routine ‘cystoscopy’ (investigation of the bladder). It was not good news, my bladder was extremely small, damaged and the biopsy results confirmed that the cells had mutated. I had my SPC for 7 years and now there was no other option but for my bladder and lymph nodes to be removed within 2 weeks and a urostomy (medical term ileal conduit) to be formed.
As I stared in the mirror I felt heartbroken, angry, and fearful. I just kept thinking ‘How on earth will I cope with 2 stomas?’ I didn’t even like the ileostomy at the time because it had prolapsed and that affected my body image back then. I knew in my heart I had to have this surgery. There was no other option not only because the cells had mutated and were starting to turn cancerous but I was getting horrific bladder spasms from the SPC that stopped me living and I was barely existing.
So, in June 2015 I arrived at the hospital in a wheelchair and had an 8-10-hour operation in a combined effort by my Urology surgeon and Colorectal surgeon to remove my bladder, form a urostomy and fix my prolapsed ileostomy. My body struggled throughout the surgery but I had amazing anaesthetists and surgeons that got me through. I woke up in Intensive Care Unit and it wasn’t long before I went to High Dependency Unit and then the urology ward.
It didn’t take me long to realise that maybe this was the best thing that had happened to me.
I started to see the glimpses of a new ‘positive’ life with my second stoma. When my Stoma Care Nurse first changed my urostomy it squirted all over her so we named it ‘Squirt’ and I knew we would be friends!
I was about to be discharged after 10 days when unfortunately, I caught Clostridium difficile (C.Diff) off another patient and I was extremely poorly so my stay ended up being 3 months in isolation and I had many interventions to help get me through. Even though this happened I still didn’t regret the surgery.
When it was time to be discharged, I was adamant I wanted to walk out of the hospital (leaning on a wheelchair) and I did. When I went home I slipped on a summer dress that I had not worn for 7 years because I always wore my leg bag on my calf and had avoided dresses! At that moment, I knew I had been given a ‘second chance’ of life again and vowed to embrace both of my stomas because I could see and feel the ‘freedom’ that they had given me.
When I am in the hospital my life doesn’t stop and I make it part of my life and treat it as a mini break.
Seeing the positives and almost making a gratitude list I started accepting both my stomas even the prolapsed ileostomy. When I felt overwhelmed I would think of life before them and how horrific it was and that helped put it all into perspective. Since then I have had other challenges with the 8 failed refashion surgeries for my prolapsed ileostomy and having sepsis 10 times but I try to not let those experiences get me down or blame my stomas. I adapt, and when I am in the hospital my life doesn’t stop and I make it part of my life and treat it as a mini break.
During all those admissions since requiring my second stoma the nurses on the ward would get me to speak to new ostomates which I loved. I realised there wasn’t many young urostomates or many ostomates with 2 stomas. Surfing the internet I found lots of brilliant blogs about colostomies and ileostomies but not in terms of a urostomy or 2 stomas. So, this was when my blog rocking2stomas was born and life has never been the same since!!
I saw how important ‘identification’ was and connecting with other ostomates who just ‘get it’.
I originally started this to help other ostomates not feel so alone and isolated as I had felt but I had no idea how much my blog would help myself with my own journey of acceptance. I found an online community on Facebook that I never knew existed.
Bearing in mind I had my ileostomy in 2012 due to Pure Autonomic Failure and my bowel failed to function, I never thought to search for groups. I saw how important ‘identification’ was and connecting with other ostomates who just ‘get it’. I started getting a lot of messages from ostomates with 2 stomas like me feeling like they were the only ones. I wasn’t even aware before I started my blog that we were called ‘Double Baggers’ I had no idea! After receiving more and more messages, I decided to set up a Facebook group called ‘Double Baggers Support Group’ for anybody with 2 stomas, about to have a second stoma or are family members of somebody with 2 stomas. This is not even a year old and we have nearly 300 members all over the world which is amazing!
Urostomies can sometimes be forgotten about amongst Healthcare Professionals and the public. However, when you have 2 stomas we are even less acknowledged because we have a small incidence in comparison.
Without them (my stomas) I would not be here.
Where I am at today is, I am truly grateful for both my stomas, without them I would not be here but also, I would not have reached this deep level within myself. I worked as an ex Healthcare Professional before my rare illness Pure Autonomic failure hit making my bowel and bladder fail to function normally. Now I am doing a similar thing but in a completely different capacity. Advocating in healthcare raising both urostomy and ostomy awareness and supporting new ostomates have given me back a purpose and drive again.
I am truly the happiest I have ever been but it hasn’t always been that way. I have had dark times but I have worked through them and now come out the other side to be able to help others. This takes time and acceptance doesn’t come overnight but by setting small goals I built up my confidence which helped me appreciate the gift my stomas have given me. Not only have my stomas saved my life but they have given me amazing friends, met fellow advocates, have a purpose again but the most surprising…they even helped me find a man called Steve who also has an ileostomy. So together we are Rocking 3 stomas!!!!
Coloplast Care would like to thank Rachel for being so open and honest, Rachel says
There is hope, there is a future and when I embraced my stomas and found gratitude for them - amazing opportunities have come my way.
