For today's #UroStories we have the lovely and inspiring Laura Mackenzie joining us! Laura is 41 and lives in Wemyss Bay, Scotland. Laura is amazing and has done so well. It has been an honour to watch her grow and see how much she has achieved all before her first stomaversay!
- Hi Laura, can you tell me a little about how you got your urostomy?
Late August 2017, I started to pass faeces in my urine. This was obviously very alarming but not nearly as frightening as the journey that lay ahead. It was a Friday night and my symptoms worsened over the week and I got an emergency appointment with my GP on a Monday Morning. After an appointment with a urologist, a CT scan and a cystoscopy at a private hospital I was then passed to a colorectal surgeon because there was so much foreign matter in my bladder that they could not see much. He looked at my blood results taken the day before and took one look at me and told me to get to a NHS hospital straight away. He told me I could have 1) Crohn’s Disease 2) ulcerative colitis or 3) Cancer. The “C” word – it had been said. I was in a state of shock. We didn’t even come home for my stuff and just went straight to A&E where I was admitted to a pre-surgery ward. I was in for three days and during that time I had a blood transfusion and a sigmoidoscopy. It seemed like the worst day of my life. At this point, the responsible colorectal surgeon told me on the first night before the sigmoidoscopy that if it was cancer – best case scenario I would need some radiotherapy and worst case I was going to see one of UK’s leading consultants in the Glasgow Royal and I would need a very major operation. After the longest 3 days until that point in my life, I got to go home.
The first plan was for me to be re-admitted the following week for a temporary ileostomy to divert everything away from my bladder. I went for the pre-op and was even marked up for the stoma. This was mid-September and 2 weeks after my sigmoidoscopy, I was called in to get the results. It was confirmed I had cancer but not in the bowel as suspected, elsewhere and it was thought to be in the bladder and was a large tumour. At this point, urologists got involved and looking at the scans and decided that they would not proceed with the ileostomy and I needed to see the consultant at the Glasgow Royal. After a couple of consultations, I had an MRI scan and a PET scan, it was confirmed I was very ill and required a total pelvic exenteration. As it was described to me I sat speechless as they described one after the other what would be removed. Part of my bowel, my bladder, ovaries, womb, cervix and vagina would be removed. I think I took the news worse than I had the fact I had cancer. At the time, the next sentence which would have been obvious to a logical person in a good place (and that wasn’t me then) I heard the words “bags”, “won’t be reversible” , colostomy and some other word which would have been a urostomy but I never heard this word before. All I could imagine in my mind was the stereotypical as I thought at the time, an old man who can’t pee properly and needs a bag. I was devasted. 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. However I found the strength I never knew I had and that combined with my husband who was my rock throughout all this, I stayed positive and started to work on how I was going to get through it all. I was only 40 years old at the time and I still had so much I wanted to do and places I wanted to see. This couldn’t be it I told myself. 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. 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. I was kept in for 9 days as my various daily blood tests came back with low this or high that. It was critical everything was in best shape as possible in preparation for what was to be a major complex invasive surgery lasting around 12 hours. I was home for just over a week and that possibly was the worst time of my entire life and this journey. As the urine was now diverted through the bags attached to my kidneys on my back, there was only solid faeces passing through my urethra. I was literally screaming the house down in pain. Nothing helped. I had to go for a second PET scan because without it my consultant wouldn’t do the operation, to see if there was spread to anywhere else in my body. the operation could not go ahead and 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 killed me and chemotherapy also has limited effectiveness for the type of bladder cancer I had Squamous cell carcinoma. Waiting for this at home was a very emotional time for me. While apart from cancer, I was overall a healthy person with no other medical conditions, I knew it was 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 wrapped all my nieces Christmas presents. I remember telling my husband in tears what was for who and he was to give them to them if I wasn’t here. It was a surreal time. Then I started to feel overwhelmed by everything and wanted to take control so I started cooking lots of food – well I sat and cut things up and my husband cooked, following my instructions. I love cooking it is a real passion but I didn’t have the strength to do it myself. I made sure he had meals all ready for when I was in the hospital. I labelled all the freezer drawers so he could get things easily. I then started making a list of all the things I had managed to do at home and then I started making a list of goals for post-op. I was taking control and I was going to kick Cancer’s ass! I spent the last few days seeing friends and family and with only a few days to go before the planned operation date, I got the green light it could go ahead as the PET scan showed there was no spread. On Halloween 2017, I was admitted to hospital. The day was a bit of a blur and I was marked up for my two stomas, I saw the anaesthetist and my consultant to go through step by step what was involved in the operation and all the many, many risks involved. The first 48 hours would be the most critical. That night was awful I was literally bleeding from everywhere – ironically I got my period, blood was passing from my anus and through my urethra. I had to call my husband to come and spend the night with me.
Then the moment came for me to be taken down to the operating theatre. I will never forget the moment the lift doors closed as my husband disappeared from view. So on that day, 11st November 2017, my life changed forever. I was thankful and the operation went really well. I am claustrophobic and the first thing I remember saying was could I take off my oxygen mask which they said yes to but said if I wasn’t breathing well it would need to go back on. I was asking for my husband and I was never so happy to see him when he arrived in the recovery area. I spent just two 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 had new challenges – getting in and out of bed – no longer bars to support you on the bed, climbing stairs etc. I was about 7.5 stone when I got home. Gradually, day by day, week by week with the amazing 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 and while I had gone to the local pub as a February goal, I made it there on the 30th November 2018, the day I got the pathology results and got the all clear. All 40 lymph nodes taken during the operation came back clear. It was such a relief and gave me the motivation I needed to go from strength to strength. It is now late February, I am back to just under 11 stone, a healthy weight for me. I have 3 holidays booked and life is starting to get back to normal, well my 'new normal'. Funnily, I thought the colostomy (named Jack after Jack and Victor - the characters in Still Game) would have been the harder ostomy to deal with but in actual fact, it has been pretty much plain sailing and while no major issues, the urostomy (Victor) has been harder to deal with.
- What do you feel is the toughest thing to deal with when living with a urostomy and how do you overcome this?
I think the toughest bit is being scared about a leak. My stoma bags got pre-cut at under 4 weeks on the advice of the stoma nurse which I had felt was a bit early. Then I started using them and had some leaks and thought about a week before Christmas I might be back in the hospital. The fear was heightened because my stoma had retracted. I was told it was retracted after 3 days the way it normally would be after a few years so I thought this was causing the leaks until I thought about it logically and got an uncut pouch and cut a new template and it solved the problem. I have had leaks mainly at home but then again at the beginning, I was mainly at home. I have had a few 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. To resolve this I went back to using the night bags which is working well for me. Also at the start, I was changing every second day but now with more mucus building up, I can go max 24 hours or I have a leak. Reading lots of online advice on Facebook Groups and medical sites, I got the cohesive rings which has definitely provided more security and less bag erosion. 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 bags and moving to one with Vitamin E which was much kinder to my skin.
- What piece of advice, hints or tips would you give to anybody who is about to have urostomy surgery and start this journey?
Firstly, remember, the likelihood is that regardless of why you need a urostomy, the chances are your life will improve for the better. Mine certainly has – all the pain and misery has gone but furthermore it saved my life and in the hard days I remind myself of this. All that said, equally don’t expect too much of yourself, regardless if it is life-saving, it is a big adjustment and you need to allow yourself to grieve for the old you, the body before. If possible, speak to someone who has one, not just the stoma nurse. Join closed support groups on Facebook or other social media. I only found them after my operation and wished I had found them sooner or thought to look. 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. Get back to doing things you like as soon as you are fit and medically safe to do so. This makes you realise you can still do almost anything, even with a urostomy. Be prepared for the fact that many people don’t know what it is -I didn’t before I had one.
- Are there any support groups, associations or online groups that have helped you live and accept your urostomy?
Yes, I am a member of quite a few groups. One of the best is Double Baggers Ostomy Support Group. This is particularly good for me as I really did feel I was on my own because I didn't just have 1 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. Also as I have got stronger and with some experience, I feel I am also able to help others which is good too – “pay it back”.
- Do you feel there is a different level of awareness with the Healthcare Professionals regarding urostomies compared to the other stoma types?
Yes – my GP was fascinated and didn’t understand much about it and wondered how I only changed my bag every couple of days until I showed him and explained that I opened and emptied it and for a urostomy, you don’t have a closed bag. Also, my stomas nurse doesn’t have much experience either as in my local hospital where she is based, they only do colostomy surgery so she doesn’t see many.
- How do you feel we can raise awareness for urostomies within the general public?
I think Facebook is a great way and blogs like Rocking2stomas reading through the different advice for different situations has really helped me and as people starting reading things they see shared, they can be educated too. Also recently there was a government partition to make accessible toilets “stoma friendly” which explained that a shelf, hook etc makes all the difference to someone with a stoma. I shared it on Facebook and some of my friends signed it so in my little way I hope I am starting to raise awareness.
- When you are having a down day what one thing do you do to keep positive that you find helps?
Reading advice and posting in a support group – there is always someone there to listen or offer advice. I also remind myself who lucky I am to be alive. The pathology results showed I had stage 4 cancer, so I know how lucky I am to still be here. 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, many I know are not as forunate and if all else fails I cuddle my husband and don’t let go.
Wow, Laura, I can't believe how much you have been through but also how positive you are! You are helping with ostomy awareness in a BIG WAY and it is a pleasure to call you a friend. You are incredible and should be very proud how much you have achieved in a short time post-op!
Please join us next where we have the lovely Jeff Kamm joining us!