I am excited to announce the start of my #UroStories (Urostomy Stories). I have wanted to do this for such a long time and finally I have got round to it. I am so overwhelmed with the response to my post asking for urostomates to fill my questionnaire to be presented in this series. I had more than 56 people interested which means this series should last a year on a weekly basis every Monday.
The first person I would like to introduce is an awesome guy who is actually a Double Bagger called Chris Livett and he has just started a blog called 2bags-NoButt (loving the name). Chris is 41 years old and lives in Bebington, Wirral, so take it away Chris:
- Thank you, Chris, for taking part. Can you tell me a little about how you got your urostomy?
In March 2017 I went to see my GP to discuss the side effects I was experiencing from the antidepressant medication I had been taking following a breakdown the previous year (another story for another time!).
After the GP’s examination, I was immediately sent for a colonoscopy where I was told in a nice cosy side room they were 99% sure I had cancer. Bad news being delivered in side-rooms was to become a theme over the coming months as it felt after each meeting with a consultant was held in such a room to tell me my cancer and proposed treatment had become more serious and complicated.
Whilst receiving daily chemo and radiotherapy I had time to come to terms with the prospect of having a Colostomy, and the removal of my Rectum & Anus. However, my final pre-op scans revealed my cancer was also in my bladder, prostate and surrounding tissue. The only course of action which could be offered was a Full Pelvic Exenteration to remove all my large intestine, rectum, anus, prostate, bladder and creating a permanent ileostomy and urostomy.
- Wow, that must have been a lot to take in. What do you feel is the toughest thing to deal with when living with a urostomy and how do you overcome this?
I’m fortunate, ironically, that since my surgery, my focus hasn’t been on my Stomas, but on my wound from the removal of my rectum and anus which after six months, still hasn't healed. I have just gotten on with living with Donald (my ileostomy) and Theresa (my urostomy) as my wound has been far more difficult to live with impacting my day-to-day.
That being said, sleeping with a Urostomy is probably the thing I've struggled with the most. Mentally, I still haven’t got used to attaching and getting into bed with my night bag. In the hospital when you have them, they don’t seem to get in the way or are as noticeable. When you’re recovering from surgery you don’t tend to move around much in your bed, and the nurses are monitoring your fluid input and output levels and emptying your bags for you. But in your own bed at home rolling over and moving around, I can't seem to do it without getting tangled up in my tube and waking up.
The other challenge with sleeping are taking those lovely weekend afternoon naps on the sofa. I make sure I am empty before getting comfy, as believe me, its no fun being woken up by the warm trickle of your own pee over your midriff and back. As a side note to that last sentence, leather sofa’s are a godsend!
- Chris, I am loving your stoma names, made me chuckle! What piece of advice, hints or tips would you give to anybody who is about to have urostomy surgery and start this journey?
Don’t be afraid to ask the nurses or doctors questions. It doesn’t matter how simple or daft you may think they think it might be. If it's on your mind, its better to ask.
Try to be positive. I know its easier said than done, and its usually the first thing someone will say to you, but honestly, it does help. It’s always good to laugh in the face of adversity. My wife reminded me that the first thing I said when the consultant told us they would need to remove my bladder and I would have a urostomy was “ Well, it will make pub crawls easier!” Then when I got home, I stuck a bag of M&M’s and a Capri Sun to myself to see what it would be like to have two bags.
Lastly, you’re not alone! You would be really surprised how common it is to have a stoma!
- Yes, I agree with that and I found Identification has been the key to my recovery after my ileostomy and urostomy surgery.Are there any support groups, associations or online groups that have helped you live and accept your urostomy?
Your blog page Rocking2stomas was the first I have discovered and reached out to and I’m looking forward to making contact with others in a similar situation in the Facebook groups. The greatest support I’ve had is from my amazing wife who has been there through thick and thin and been my rock.
- Do you feel there is a different level of awareness with the Healthcare Professionals regarding urostomies compared to the other stoma types?
Outside of the specialist stoma care nurses, I think there is not a high-level understanding of stoma’s amongst other healthcare professionals. The care, advice and support from the specialist Stoma nurses have been fantastic, but it can be difficult to see them at short notice. It would be extremely useful if I could get a similar level of advice from my GP, community nurses or even pharmacists.
- I think you have made a good point. How do you feel we can raise awareness for urostomies within the general public?
We’ve seen over the last few years an explosion in mainstream media with programs featuring people with disabilities e.g. Countryfile, The Last Leg, Eastenders. It would be useful to see people with stomas in similar programs to raise awareness.
- Great idea! So my last question is when you are having a down day what one thing do you do to keep positive that you find helps?
Meditation has helped me a lot! When I was struggling with anxiety and depression in 2016, I found mindfulness meditation really helped. I have continued to use that whenever I am feeling down, or when particular thoughts continue to circle around in my head. You forget what you were thinking about with just 10 minutes meditation, and you come out of it feeling calm and refreshed.
I would recommend the phone app 'Headspace' which provides a course of 10 minute guided meditations. It’s free, and you can subscribe if you enjoy it and want access to additional guided meditations. If you look online you will find lots of mindfulness courses available. I went regularly to my local Buddhist centre to learn how to do it.
Chris, thank you so much for an insight into your journey. I also practice meditation regularly and find it has helped me so much alongside writing every day when I wake up and affirmations. I look forward to working with you together in the future to help raise urostomy and double bagger awareness. Not many people that have total pelvic exenteration feel comfortable to talk openly about this but I think this is needed for others to not feel alone and I think your blog will help lots of people.
Thank you for reading and if you have a urostomy or any urinary diversion and would like to get involved, please get in touch :)