Welcome back to another #UroStories and today we have the amazing and inspiring Sarah who is 35 and lives in West Yorkshire.
Take it away Sarah...
- Can you tell me a little about how you got your Urostomy?
I was diagnosed with cervical cancer in 2013 and received a combination of chemotherapy and radiotherapy. I was rather unfortunate in that I experienced very severe side effects from the radiotherapy, known as PRD (Pelvic Radiation Disease). As a result of PRD, I had a serious bowel blockage that caused the majority of my small bowel to die and perforate so I had an emergency ileostomy in 2014. Following this, I then developed strictures in my ureters which in combination with radiation damage to my bladder, caused recurrent UTIs and hydronephrosis in my kidneys. I went through over a year of different treatments to try and solve the problems I was having, which included: ureteric stents, nephrostomies and subcutaneous stents. One of my urology team decided enough was enough when I developed 5 fistulas in my abdomen which leaked urine. They suggested that if I had enough healthy ureter tissue, I could choose to have a permanent (ileal conduit) urostomy. ‘Over the moon’ doesn’t quite describe how happy I was with the prospect of having a Urostomy. My fantastic Colorectal surgeon led my surgery and used my ileostomy stoma for my urostomy and formed a colostomy with my remaining (transverse) colon at the same time. I went from having 3 bags (bilateral nephrostomies and an ileostomy) to having 2 (a urostomy and a colostomy). I’m happy to stop at 4 different types of ostomies now though!
- What do you feel is the toughest thing to deal with when living with a urostomy and how do you overcome this?
I have never had a problem accepting any of my ostomies, they were necessary and in some cases saved my life, so I wouldn’t say I’ve ever found it tough. There have been some practical challenges like getting used to bag changes and finding the right products but with the right support from my fabulous Stoma Nurse Lisa, it was never a problem.
- What piece of advice, hints or tips, would you give to anybody who is about to have urostomy surgery and start this journey?
- Take things at your own pace, everyone is different. If you find it really tough just take each day as it comes, things will get easier.
- Be kind to yourself, your body has been through major surgery and that is a big ask both physically and mentally.
- Get plenty of samples from different companies, you do not have to stick with what the hospital provides you with, that goes with delivery companies as well! (Many stoma nurses are reps for specific brands so unfortunately have to push the brand they rep for).
- GET SOME FORM OF SUPPORT WEAR – around 70% of stoma patients end up with a hernia, avoid becoming that statistic if you can help it.
- Generally speaking, you will be able to do all the things you could before surgery, they just sometimes take a little time and a bit of adjustment.
- Get on social media and follow real-life ostomates, you will pick up far more practical tips than anywhere else (in my opinion). Similarly, ostomy support groups can be helpful but some people can be very negative so always remember ‘everyone is different’.
- It’s ok to not be ok, don’t struggle on your own, always ask for help.
- Are there any support groups, associations or online groups that have helped you live and accept your urostomy?
I’ve never had issues accepting my ostomies but I know not everyone looks forward to getting theirs. I love following people on Instagram and seeing the experiences of others with ostomies. I have also found posting about my own experience on social media to be very cathartic and rewarding. If you want to check out my Instagram profile I’m @badassbaglady
I’d also highly recommend giving these fabulous people a follow:
@msjearleantaylor (double ostomate fashion model)
@gutlessandglamorous (non-profit organisation empowering & erasing the stigma of ostomies)
Although some of these accounts aren’t people with urostomies, you will find that there are many similarities between all those with stomas, no matter what type (and the reason for getting them). Alternatively, you could search for these hashtags to find people to follow: #urostomy #ostomylife #stomalife #getyourbellyout #ostomyawareness #ostomytravel
- Do you feel there is a different level of awareness with healthcare professionals regarding urostomies compared to other stoma types?
I’m afraid that unless you are speaking to someone who specialises in urology (there are a handful of exceptions) most people either don't know what a urostomy is or have come across somebody with one. It’s always best to be patient with healthcare professionals because most people won’t be familiar with a urostomy. It is important that you remember that you are the expert on you and that you must advocate for yourself! It is absolutely OK to question your healthcare professional if you don’t think they have considered your ostomy or whether they need to do something differently (taking a proper urine sample for example).
- How do you feel we can raise awareness for urostomies within the general public?
I think, on the whole, we all play a part.
I know not everybody wants to whip their ostomy bag out at any given opportunity and I understand that it can take time to come to terms with having a stoma. If you are comfortable talking about it, when you are ready, just talking to friends and family about it will help to spread awareness and remove the stigma.I am proud to be an ostomate and, quite frankly, will tell anyone about my colostomy and urostomy. I have never come across any negative reactions to my ostomies and will happily explain things to people if they ask.
- When you are having a down day what one thing do you do to keep positive that you find helps?
I would consider myself a pretty positive person but when I’ve had a particularly difficult day I look at an album I have created on my phone, where I have gathered all the pictures of me in hospital or during times when I’ve been very ill, to remind myself how far I’ve come and that I should be proud of the progress I have made.
Wow, Sarah, thank you so much for taking the time to answer these questions. I am sure your answers will help many people and your positivity really does shine through. It is an honour to call you a friend.
Please join us next week when we have Matt Elkins joining us.