This latest guest post is written by my good friend Rachel of rocking2stomas blog fame about what is like for her as a double bagger; to live with both an ileostomy and a urostomy; for more on her story (which she feels she has now told a thousand times) please visit her blog via the link above.
It was June 2015, I had just been told after a routine Cystoscopy that my bladder was extremely small and damaged after 7 years of long-term catheter use. Although this news did not necessarily surprise me, I was shocked to discover that a biopsy result confirmed that my cells had mutated. I would have to get my bladder removed completely and a urostomy formed (the medical professionals call this an ileal conduit). I didn’t know how to process this information. I had always assumed I would have my Supra-Pubic Catheter (SPC) for life and I wasn’t even aware there were other options.
I remember the night I got told the news I was in my underwear and I glanced at myself in the mirror. I kept staring and all I could think of was…’how on earth would I cope with 2 stomas bags?’ At the time I didn’t particularly like my prolapsed ileostomy and the thought of having a second stoma was too much. The 2 weeks waiting for surgery was a blur but I remember lots of tears.
I didn’t have long to wait and the day arrived when I had to have my bladder, lymph nodes removed and a urostomy formed. Before this surgery, I had no life; the pain from the SPC was horrific and I ceased living… I was just surviving. I went into the hospital that day in a wheelchair because walking was extremely painful. The Urology surgeon had linked with my Colorectal surgeon and decided to do 2 operations in one. The plan was to swap the ileostomy over to my left-hand side (by now I think I had 3 refashioned surgeries for my prolapsed ileostomy, all of which had failed) and form the urostomy on my right-hand side. However this did not happen because my Colorectal surgeon damaged his hand a week before my surgery and when I woke up the stomas had not been swapped over.
Years later this surgeon approached me and apologised for not annotating correctly on the plan and that the future refashioned surgeries I had could have been avoided if the plan went ahead. I was blown away that he apologised and took responsibility, it didn’t really bother me but it meant so much him approaching me and being honest. I never did take it further because I was grateful for what they had done and understood that mistakes happen. For me having the apology was enough.
Anyway back to that day, the surgery went well and I was under for about 8 hours, I went to ICU then HDU due to the enormity of the operation and my blood pressure kept going dangerously low. I was here for a few days and then I went to the Urology ward. I was doing really well and I started having glimmers of hope that actually life with 2 stomas may not be as bad as I first thought! I named my urostomy ‘Squirt’ because when the stoma nurse first changed it, it literally went all over her like a waterfall! The change was simple and I was just so happy I no longer had an SPC and leg bag.
On the 10th day the day before I was due to be discharged and I caught C-Diff via another patient. Now C-diff is not nice to get but C-diff with an ileostomy is horrific! I was really poorly and my output was bright green! I was emptying 8 litres a day and had to wear a high output ileostomy bag attached to a night bag because it was filling up so quickly. The smell was nothing I had ever smelled before and a nurse knew I had it before the colour change because of the smell. Quickly I was put in isolation and ended up staying there for 3 months. This admission was definitely my hardest, I had C-diff cleared it then re-infected myself again, Sepsis from my PICC lines, I was nil by mouth and put on Total Parenteral Nutrition (TPN). After the C-diff had gone my stoma decided to play up and completely stop working – a scan confirmed the refashion was too tight and although the liquid output went through anything more solid couldn’t. I had to have another refashion surgery a month after I got discharged.
Even though lots of complications occurred I was still very grateful for the surgery. I started to see how amazing it was without the SPC even though I was very poorly. The horrific pain that felt like my bladder was giving birth to my catheter had gone, which was amazing. I had normal recovery pain but it was so freeing after 7 years to get rid of this. Eventually, I was discharged and I have to say I walked out of the hospital leaning on a wheelchair but I walked out. I had hope again, hope that I would get my life back and hope for a future which involved more than staying in my living room barely functioning.
I soon realised that life as a Double Bagger was pretty awesome. I was balanced so I had a bag either side and I could wear dresses again! Having a catheter for 7 years I always had the leg bag on my calf and I missed wearing dresses. It didn’t take long for me to see that life was a 1000x better with a urostomy even after my complications. I had a second go at life again!
I have been in hospital a lot because of the many refashioned surgeries and Sepsis. It was during these admissions as a ‘Double Bagger’ and having a urostomy I started to see the general lack of awareness particularly around urostomies by some members of staff on the wards. I then decided to go online and saw lots of blogs from ostomates who had a colostomy and ileostomy but I couldn’t see many regarding a urostomy, let along 2 stomas!
I decided to write a blog called rocking2stomas about living life to the full with 2 stomas. Having this blog has helped me join the ostomy community online and connect with the associations. I soon realised and noticed the huge lack of awareness of urostomies. Since then I have been concentrating on urostomy awareness because having both I can see that the urostomy is the ‘forgotten stoma’. However this has got better over the last year and more advocates, companies and ostomates are including urostomates. There is nothing more humbling than somebody reaching out to you before surgery or who has had an ostomy and is struggling. Identification is so important and connecting with somebody who has been through a similar event and can ‘understand’.
I decided to set up a support group for Double Baggers called the ‘The Double Baggers and Ostomy Support Group’ we have been going now for 7 months and have over 250 members which is bloody amazing! I remember thinking I was the only person out there with 2 stomas and felt so alone. It warms my heart to know that ‘Double Baggers’ now have a support group on Facebook and are being recognised more as well.
One of the hardest things I have dealt with in regard to my stomas has been ‘body image’. Loving my body again has been a long process and I have worked hard on this. I do a lot of self-development and soon I realised that for somebody to love me I had to learn to love my stomas first! I wrote a lot about this issue and did many affirmations daily. Soon I began to like my body…then love my body and now I see the miracle that is my body. My huge scar and bags show how amazing my body is and what a warrior I am. Now I would say I am more confident about my body now than I ever have been before I got ill. I even did a lingerie photo shoot for Jasmine Stacey Collection and this helped build my confidence more and step out of my comfort zone. At the end of March, I am taking part in the Purple Wings catwalk with Stephie which again will be another milestone for my building my confidence.
I am so grateful for my stoma bags because without them I would never have known myself on this deep level. Being a double bagger has given me absolutely amazing friends, a possible career and a brilliant man (with a stoma) all I had to do was embrace them!
To read the last guest post please click here!