Bags for life: a remarkable recovery
Thursday, September 12, 2019
Laura MacKenzie recalls the frightening illness that led to a rapid and successful recovery and two healthy stomas
It was on a Friday late in August of 2017 that I noticed that my urine was much darker than usual. As alarming as this was, it turned out to be not nearly as frightening as the journey that lay ahead.
These symptoms got worse, and I went straight from a GP to a urologist to a colorectal surgeon. A CT scan and cystoscopy couldn’t reveal much through all the foreign matter in my bladder, and I was told I had either Crohn’s disease, ulcerative colitis or cancer. In a state of shock and without a chance to go home for my things, I went straight through A&E to a pre-surgery ward, where I had a blood transfusion and a sigmoidoscopy.
After the longest 3 days of my life, I went home to await the results. It was 2 weeks later when I was called in and told I had cancer. I had been told this would mean an ileostomy and anything from some radiotherapy to a major bowel operation. However, my tumour turned out to located not in my bowel as expected, but in my bladder.
" ‘it turned out to be not nearly as frightening as the journey that lay ahead’
After a couple of consultations with Glasgow Royal’s urology specialists, an MRI scan and a PET scan, I learned I did not need a temporary ileostomy after all. However, I did need something called a total pelvic exenteration. I sat speechless as the consultants listed what would be removed: part of my bowel, my bladder, my ovaries, my womb, my cervix and my vagina. I would be left with an irreversible colostomy and would need to use a bag for the rest of my life. I took the news of the treatment far worse than that of my illness. All I could imagine was becoming the stereotype of an old woman who can’t pee properly.
However, I found strength I never knew I had. With my husband, who was my rock throughout all of this, I stayed positive and started to work on how I was going to get through it all. I was only 40 years old; there was still so much I wanted to do and places I wanted to see. This couldn’t be it, I told myself.
I was also told I had a blockage and needed a stent put in to ensure my kidneys weren’t damaged, and this was planned for a few weeks’ time. A few weeks later, after more blood results, my consultant’s secretary called and asked me to be admitted earlier than planned. At this stage, my kidneys were only functioning at 60%. I had the operation, but they weren’t able to put the stent in because the blockage was too great. I knew this was a possibility and so woke up with two nephrostomies instead. This wasn’t pleasant, but it did the job, and my kidneys returned to full functionality.
" ‘there was a chance I would not pull through’
I was still very ill, but already I started to look a bit better, and the consultant was surprised at what a difference it had made. It was critical everything was in the best shape possible in preparation for what was to be a major complex invasive surgery lasting around 12 hours. My urine was now diverted through bags attached to my kidneys on my back, but what was still passing through my urethra made me scream the house down in pain. Nothing helped. My consultant insisted I had a second PET scan before he would do the operation, to see if there was disease spread to anywhere else in my body. If the operation could not go ahead, palliative care would have been the only option. My consultant said he honestly wasn’t sure what that would be, as I couldn’t have radiotherapy. Due to the type of cancer, it would have given me sepsis that would have almost certainly killed me, and chemotherapy was not very effective for the type of bladder cancer I had.
Facing up to the possibility
While, apart from the cancer, I was a healthy person overall, with no other medical conditions, I knew this would be a major operation, and there was a chance I would not pull through. I am always organised anyway, but I wanted to be extra organised, and so I wrapped all my nieces’ Christmas presents. It was then that I started to feel overwhelmed by everything and wanted to take control, so I started cooking lots of food, helped by my husband. I made sure he had meals ready for when I was in the hospital. I started making a list of all the things I had managed to do at home and another list of goals for after it was all over. I spent the last few days seeing friends and family. With only a few days to go before the planned operation date, I got the green light for it to go ahead, as the PET scan had shown there was no spread. I was admitted to hospital on Halloween in 2017. That night was awful. To cap it all off, I had my period, and so I was bleeding from both sides. I had to call my husband to come and spend the night with me.
The moment arrives
Then the moment came for me to be taken down to the operating theatre and for my life to change forever. I will never forget the moment my husband disappeared from view as the lift doors closed.I am immensely thankful to say that the operation went really well. I am claustrophobic, and the first thing I remember saying asking was whether I could take off my oxygen mask. They said yes to that, but added that, if I wasn’t breathing well, it would need to go back on. I was asking for my husband, and, when he arrived in the recovery area, I was never so happy to see him.
A rapid recovery
I spent just 2 days in ICU and then 15 days in enhanced recovery before going home. I did really well and was eating and drinking from day 3. I was also changing my own bags from day 3. I was walking after about a week without a zimmer frame, albeit not properly and still very weak. I knew that was one thing that would keep me in the hospital, so I was determined to move around a bit. I was very weak when I got home and weighed about 7.5 stone. Gradually, day by day, week by week, with the support of my husband, I got stronger and stronger and put on weight.
I went back to work at the end of January—initially part-time. By the middle of February, I was back full-time. I work at home, so this definitely helped me to exceed my goal here. I smashed most of my pre-op goals. I had ‘going to the local pub’ as a February goal, and I made it there on 30 November 2018, the day I received the pathology results and got the all clear. All 40 lymph nodes taken during the operation came back clear. It was such a relief.
I am back to just under 11 stone, a healthy weight for me. I have three holidays booked, and life is starting to get back to normal—well, my new normal. My stomas are named Jack and Victor, after the characters in Scottish sitcom, Still Game.
Laura recovered remarkably well
Life with a stoma
Funnily, I thought the colostomy would have been the harder ostomy to deal with, but, in actual fact, it has been pretty much plain sailing. The urostomy (Victor), while having no major issues, has been harder to deal with.
The toughest bit is being scared about a leak. The leaks I have had have mainly occurred at home, but then I did spend most of my early recovery in the house. I have had a few leaks when I’m out, but I have dealt with them and moved on. I always have an emergency kit with me, including a spare pair of leggings and pants. I have also noticed that, as I healed and slept better, I wasn’t waking up as often, so I had a few accidents. Another, lesser, but still tough, thing to deal with was the skin irritation. It just looked awful, even though it wasn’t that sore. I was prescribed an asthma inhaler to spray on before attaching the bag, and it healed up quickly. This also triggered a move to try new pouches, and I found one with Vitamin E that was much kinder to my skin.
It is good to get back to doing things you like as soon as you are fit and it is medically safe to do so. This makes you realise that with a urostomy you can still do almost anything.
" ‘I have dealt with them and moved on’
You will however have to be prepared for the fact that many people don’t know what it is—I didn’t before I had one. My GP didn’t understand much about my urostomy. He was fascinated and wondered how I only changed my bag every couple of days. I showed him, and explaining how I opened and emptied it, as urostomies don’t have a closed bag. My stoma nurse didn’t have much experience either, as she is based in a local hospital that only does colostomy surgery and had rarely seen a urostomy.
Stoma-friendly accessible toilets
People with a stoma have additional needs when using the toilet; even a simple day trip can be a potential source of anxiety. Because the condition is not visible to others, they often face discrimination in being challenged or criticised for using accessible toilets. In Colostomy UK’s recent survey, more than 30% of respondents stated that they had experienced problems of this nature in shops, sporting venues and visitor attractions etc.
Many organisations, including Sainsbury’s, have made their toilets stoma-friendly. The following changes are simple to implement and can make a huge difference to the experience of people living with a stoma.
• Plastic hook on door, at a height where items will not touch the floor—to hang clothing, handbags and luggage while changing stoma bags; this provides more space in the cubicle
• Shelf space, to enable ostomates to spread out their items easily and avoid having to use unsanitary surfaces; the shelf should be easily accessible and a person able to stand in front of it
• Mirror, to enable users to see their stoma while changing their appliances
• Disposal bin in every cubicle, to avoid embarrassment for men and women having to dispose of their stoma bag in public view.
• Accessible toilet signage, to highlight the right of ostomates to use the toilet; this reduces risk of hostility for ostomates when using an accessible toilet, and the Colostomy association offers free-of-charge stickers
• Well-stocked accessories, including toilet roll, paper towels and handwash
Source: Colostomy UK
Expectations and advice
If you have to have a urostomy, regardless of why you need one, the chances are your life will improve for the better. Mine certainly has—all the pain and misery has gone, and when I’m having a hard time with my stomas, I remind myself that they saved my life.
That said, people with a new stoma shouldn’t set impossible goals for themselves. Even if a stoma saved your life, it is still a big adjustment, and you need to allow yourself to grieve for the old you, the body before. If possible, it is worth speaking to someone who has a stoma of their own, not just the stoma nurse. Real advice from real people living it daily is the best and really makes you feel you are not the only one going through this, although you probably feel like that at first.
" ‘you need to allow yourself to grieve for the old you’
I have appreciated blogs, such as Rocking2stomas, that have advice for different situations that has really helped me. As people start reading things they see shared, they become educated too. I’ve also appreciated Colostomy UK publication’s on making accessible toilets ‘stoma friendly’.
It can help to join closed support groups on Facebook or other social media. When I feel down, I find it helps to read advice and post in these groups—there is always someone there to listen or offer advice. I only found them after my operation, and I wish I had found them sooner or thought to look. I am a member of quite a few Facebook groups. One of the best for me is Double Baggers Ostomy Support Group, as for a while I really did feel on my own, with not one but two ‘bags for life’. There are also urostomy-specific groups, which are good too for urostomy-specific issues. I think over time I may remove myself from some, but for now the more advice the better. As I have got stronger, and with some experience, I feel I am also able to help others.
Laura has gone back to a fairly normal life
As well as reaching out to other people when I am down, I also remind myself how lucky I am to be alive. The pathology results showed I had stage 4 cancer. I also play some of my favourite happy tunes, a particular favourite being ‘It’s 5 o’clock somewhere’ by Alan Jackson—it takes me straight to a beach with a cocktail in my hand. I also remind myself how strong I have been and how far I have come. I also consider myself lucky, as I have gone back to a fairly normal life again, while many I know are not as fortunate. If all else fails, I cuddle my husband and don’t let go.
Laura MacKenzie lives and works in Scotland with her husband and her two stomas, Jack and Victor