Laura's Bladder Cancer Story: Working and Traveling with 2 Stomas

The Editorial Team at BladderCancer.net is highlighting people in the bladder cancer community. To kick it off, we talked to Laura who shares her bladder cancer diagnosis story and her personal experience with adjusting to life with 2 stomas.

Laura's diagnosis story

In August 2017, I started out of the blue, to pass faeces in my urine. This turned out to be due to a fistula caused by the stage 4 bladder cancer. I had a cystoscopy which couldn’t show anything, as my bladder was full of debris.

I then had a sigmoidoscopy as they thought it was bowel cancer, then had a CT scan, MRI scan and a PET Scan to confirm diagnosis and staging. Radiotherapy wasn’t an option due to the location and type of bladder cancer (squamous cell carcinoma, which is less common) and could have caused life-threatening sepsis. Chemotherapy wasn’t effective for this type of cancer.

Surgery was my only option

Surgery was the only option to save my life. The operation was a 12-hour total pelvic exenteration in November 2017 (after having temporary nephrostomies fitted for 6 weeks due to kidney function at below 60%), which involved removing all reproductive organs, part of my bowel, my bladder, and 40 lymph nodes.

As a result of the operation, 29 days later, I got the all-clear with negative margins. All 40 lymph nodes were clear, which was a bit of a miracle and even a shock to my consultant. Currently, I'm still cancer-free as per my last scan – December 2019.

Two stomas takes a lot of adjustment

Editorial Team:How did you transition to life with 2 stomas?
Laura: The emotional recovery was even harder than the physical one. It all happened so quickly beforehand; it was only post-op that it really hit me.

Physically, I recovered well. I was back working part-time after 2.5 months and full-time after 3 months. I am based at home which helped, and I didn’t resume business travel until 6 months later. I was very tired at first, but I think being back at work helped my mental wellbeing.

New experiences with my stomas

Having two stomas takes a lot of adjustment. They are life-saving but equally life-changing. I made lots of goals pre-op: first pub visit, first overnight, first weekend away, first short haul flight, first long haul flight, and I smashed all the calls.

This helped me to adjust to stomas as a part of life of which travel is a big part. In the two years with two stomas, I have taken many trips in the UK, been to Portugal 3 times and flown long haul twice to Mexico and to the Dominican Republic from Scotland.

Support from my husband and social media

This weekend, I am flying to London and then 12 hours onwards from Gatwick – I have adapted to allow me to do the things I like to do. Having the unwavering support of my rock, my husband, both emotionally and practically with accidents, especially in the start, was key to my recovery and acceptance.

I also started a Facebook page: “Bags for Life” which helped not only my own recovery but I help others, too, with my tips and sharing experiences, good and bad.

Tips for flying with two stomas

Editorial Team: What are the challenges of traveling with two stomas? Any tips for someone who's never done it?
Laura: With two stomas, it is double everything – double supplies and double spare clothes. My urostomy is very retracted so is prone to leaks, but I have found new ways of managing this most of the time as time as gone on.

Top tips and lessons learned from my first flight:

• Contact your airline and get extra hand luggage allowance and carry all ostomy products in it.
• I have now ordered a 50 mL water bottle to add to my emergency kit to use to clean my colostomy stoma in absence of suitable facilities.
• I came home with lots of spares, so now having done it once, I would say taking the amount you would bring for your worst day, and add an extra half as much again instead of double would be fine.
• Definitely double bag and bring extra nappy bags to put in until you can dispose of them is a good idea, and I will continue to do this.
• Watching diet the days before flying, certainly worked for me.
• I took drainable colostomy bags (I use closed ones normally) and didn’t need to use them but would always take in case your body reacts differently to a climate or diet change.
• Have two spare clothes changes at all times (I limit what I bring by choosing light clothing like thin dresses abroad or leggings in the UK with underwear, etc). My approach is, if I have an accident and use my only clothes, I would then want to go home/panic it will happen again and then what would I do? I always have liked big handbags, so that is good

Most importantly, prepare well and then enjoy your trip – flying with a stoma doesn’t need to be scary!

Naming her stomas has helped with acceptance

Editorial Team: Have you named your stomas? If so, how did you come up with the name?
Laura: Yes, I have. It helps with acceptance and if I have an issue in public, I can let my husband know, without announcing exactly what is going on. I called them Jack and Victor after characters in Scottish comedy series, "Still Game".

Working full time after surgery

Editorial Team: What are the challenges with working full-time since diagnosis? Did you tell your employer?
Laura: I was lucky to get the all-clear 29 days after surgery. Yes, I told my manager who I already had a good relationship with. Since the day I told my manager, they supported me every step of the way even when not at work.

Reduced workload to start

When I returned I had a few weeks part-time before going back full-time and initially had a reduced workload for the first few months which helped me get back into the swing of things. My main challenge is work travel which especially initially filled me with fear (not having my husband to help or explain to people if required) and still makes me anxious.

Be kind to yourself on "off" days

Editorial Team: Anything else you'd like to add?
Laura: Stomas are life-altering but they don’t have to completely change your life and your lifestyle. Be kind to yourself. Take time to adjust. Expect you will have “off” days. Things do get better. A positive attitude helps as much as any bills. Look in social media for support – a wealth of experience among the ostomy online community.