Welcome to the second instalment of #UroStories Series. Chris' story last week went down really well and today I am excited to introduce a lovely lady Sue Cavanagh from Norfolk who will share her story. Take it away, Sue!
- Can you tell me a little about how you got your urostomy?
In 2006, I started getting recurrent UTI's (Urinary Tract Infections) at first I sorted it myself then I went to the GP. After several courses of antibiotics, I was referred for an ultrasound then a CT and finally a cystoscopy. I had 4 TURBS the last I had an installation of Mitomycin – it was only at this point that they admitted it was cancer. Then they tried a course of 6 BCG which didn’t work. So fast forward to June 2009, I was sent to Addenbrookes to see Mr Bill Turner because my local hospital didn't have the specialities to undertake urostomy surgery at the time. Mr Turner had a look, told me what the problem was and initially offered me a choice of having a neobladder, mitrofanoff or ileal conduit (urostomy). Upon further investigation they couldn’t do the neobladder because there were cancer cells in the neck of the urethra, So after much research, I opted for a urostomy because the mitrofanoff seemed to have too many complications and a longer stay in the hospital. So I opted for a urostomy on August 8th, 2009 in Addenbrookes and on the 9th August 2009 they went ahead with the op which took 12 and a half hours. They removed my bladder, urethra, both ovaries and 20 lymph nodes. I had an epidural because of post-op pain and was in hospital for 9 days.
- What do you feel is the toughest thing to deal with when living with a urostomy and how do you overcome this?
The toughest thing mmmm it doesn’t really cause me any problems but maybe sometimes a bit of general tenderness in the tummy area. I have to keep reminding myself to be careful when lifting. I find the worst thing is the leaks but luckily they don’t happen that often. Also on the odd occasions, my skin goes nuts and reacts to the base plate. However, these are small prices to pay because without Rosebud (my urostomy) I simply wouldn’t be here and that is a fact. They don’t have a reason for cancer, it is just one of those things and honestly, bladder cancer never entered my sphere of vision until it got me! I would just like to add an unpleasant side effect I have is puffy ankles and legs, mainly on my right side. The doctors and consultants agree that this is because I had 20 lymph nodes removed. Best advice to help with this is to wear supportive tights or sit with your legs raised (this is not practical being like this all day)
- What piece of advice, hints or tips would you give to anybody who is about to have urostomy surgery and start this journey?
Oh boy here’s a classic, try not to worry too much – although far easier said than done. You won't realise the truth of it until after the op.
- Are there any support groups, associations or online groups that have helped you live and accept your urostomy?
In my case, I like to know what is going to be done to me and I face it better if I can meet it head-on. I would suggest having a look at the Macmillian website that tells you about all the different urinary diversions. It doesn’t matter if you have cancer or not this site has a wealth of information about all the different operations in sensible and easily understood terms that are meant to inform not scare.
- Do you feel there is a different level of awareness with the Healthcare Professionals regarding urostomies compared to the other stoma types?
Absolutely they are all geared up to colostomies! This is a true story...I had a kidney stone lasered and afterwards they decided to keep me in overnight (unnecessarily) anyway I got put on a urological ward and the nurse came over with her clipboard to ask the usual questions. When she got to the urostomy she asked if I managed it myself – yes. Had I got my own supplies – yes then she said out of interest how do you change your bag? I said its easy takes about a minute no big deal. She said yes but how? I said I don’t get you I just peel it off and put a new one on (in simple terms). She said I get that but how when it's on your BACK! I said it isn’t it's on my stomach, you are talking about a Nephrostomy – now bear in mind I have said this is a urology ward. She then said oh but they are the same, aren't they?
Also, my GPs practice hasn’t got a clue about urostomies at all, I have to teach them. If you go to my local hospital for any other reason than to see a urologist they all just look blank when a urostomy is mentioned.
- How do you feel we can raise awareness for urostomies within the general public?
There has to be more publicity out there, posters, leaflets etc. One thing that bugs me is the Tenna lady adverts seem to imply a weak bladder is normal and if you buy these products all will be well. They should put a bit at the end of the ad that states this isn’t normal and at the very least they should go and see their doctor. I know a TV ad is very expensive but maybe a poster campaign using Facebook that the general public and Healthcare Professionals will see may help with the awareness.
- When you are having a down day what one thing do you do to keep positive that you find helps?
OK, what I find helps on down days is self-hypnosis or crochet. I also like my alone time after 9 years post op and my hubby understand this and clears off to his shed. I usually pick my crochet up and it helps calm me.
Thank you so much, Sue, for sharing your story. Your positivity and giving back to others is very inspiring and I am grateful for your continued support of my blog.