So for the last 5 weeks every Friday I have been doing the #UnderstandingUrostomies series and I have really enjoyed it. It is lovely having the positive feedback and seeing how many people the series is helping.
If you have seen from my Facebook Blog Page I have been in hospital this week due to a stubborn kidney infection and I haven’t had chance to put anything together in detail so I have decided for today’s post to write about my fantastic weekend at the Urostomy Association (UA) event 3 weeks ago on the 9th and 10th September in Staverton Park Hotel Northampton.
As a young urostomate and ileostomate, I have been working hard to raise urostomy awareness both online and in the media. A few months before this event, I linked up with Brian (UA President) and Don (UA journal editor) about raising awareness and helping start the UA twitter). They invited me to attend this event and very kindly suggested to put a request in for Valerie King Fund to help me pay for my room since I am unemployed. I am very grateful for this because it allowed me to experience something very special, a community where everybody had a common bond.
I was really excited for the weekend; however, I would be lying if I didn't say I was slightly nervous and anxious. I arrived at the hotel after a 5-hour train journey and checked in. I asked the hotel receptionist if anybody from UA had arrived and she told me to look out for the blue lanyard and UA card. Just that second, I could hear roaring laughter behind me and when I turned around there were about 8 beaming, happy faces that to my delight were wearing the blue lanyard! I just walked over and introduced myself. Straight away they made a joke about my luggage but were so kind, I felt instantly accepted. Everybody was quite surprised I was a ‘double bagger’ but mainly how young I was with a urostomy. If you managed to speak to me you will know that I talk A LOT and I am very passionate about Urostomy Awareness and representation for younger urostomates not due to cancer. Morgan one of the members husband was the perfect gentleman and kindly carried my luggage to my room. That evening I planned to have food in the restaurant on my own. I was about to go into the restaurant for my food when the lovely Julie ran over and said we have booked you to come have food with them. My heart just filled with joy, I couldn’t believe the kindness and love these strangers were showing me. It is nerve-wracking going anywhere on your own but add in a chronic illness and the fact I only knew 2 people out of everybody but my nervousness was instantly removed and I felt part of the community
Saturday 9th September – The Exhibition and Talks
The day started early I was up at 7 to have breakfast at 8 before the exhibition started at 9.30. At registration, I was given the trusted lanyard and identity card along with a blue folder containing the antennary for the day. Walking into the exhibition was like a sweet shop for the eyes. The colours were amazing and all the different stalls from companies looked really engaging. With my networking head on I started going around the stalls chatting to all the attendees and telling them a bit about me and how companies could include urostomates a bit more so we do not feel left out. What blew my mind was that quite a few people had already heard of me and my blog and were excited to talk to me in person. Talking to everybody got me thinking about the importance of face to face interaction. A lot of my support and recovery has been online which has been amazing however, this event made me realise that meeting people in person and having the connection in ‘real time’ is paramount and shouldn’t be forgotten about. After an hour of wandering around and chatting to different people, the talks in the other room began.
The room was full of people and nearly every chair was occupied. It was at this point I was filled with a sense of overwhelming emotion that the majority of people in this room had a stoma. Looking at all the members and taken in this thought I FELT a sense of unity and acceptance.
The National President Derek Rosario who is a consultant Urologist kicked off the conference with an introduction.
Sheffield Hallam University Research Talk by Liam Bourke
The next talk was extremely interesting all about Research that Sheffield Hallam University did last year for the UA and the results presented by Liam Bourke.
He explained that a lot of research doesn’t really have any impact on patients so the UA and Sheffield Research team wanted to include patients directly in a Patient centre approach. 800 members took part in the survey last year to find out the top concerns for urostomates. Subsequently, this highlighted 10 potential research topics that could be explored further. The top 5 were
- Stoma bag and pouches regarding adhesive
- Training and education
The talk also contained suggestions on how to proceed next and get commissions to fund the next stage. Understandably so, research is expensive but very necessary. Not only can it help ‘us’ as urostomates, it is also good to launch awareness campaigns on the back of research. I managed to ask my question about the need for correct and accurate statistics regarding the percentages of why urostomates get a urostomy. From the mini research, I have done with 250 people the incidence of cancer was a lot less than previously suggested and as more younger urostomates are coming through due to other conditions and diseases this would effect that previous figure. Sometimes it is assumed that urostomies are due to cancer but this is not always the case and it would be really interesting and helpful to get the ‘correct’ figures on this somehow.
Convatec talk about stoma patient activity levels
I am the first one to admit I do not do enough exercise, however, I also carry a level of fear because of my prolapsed ileostomy and hernia I am not ashamed that this is partly the reason I have been wary of exercising.
Andrea Burn covered all this in her talk and I have to be honest it really got me thinking and questioning myself regarding exercise. In 2016 Convatec did a survey about ‘Living with a stoma’ and the results were quite surprising. 39% of 3000 people were less active now than before surgery. 24% of people said they did no exercise, however, the more worrying figure is 87% say they do no core activity. Only due to this lecture I Iearnt how important gentle core exercises are straight after your surgery to HELP PREVENT A HERNIA. I was not told the importance of this after my surgery and maybe if I had done these exercises I would not be stuck with my hernia and prolapse (no longer eligible for surgery) Convetec do a Me+ Buildup Confidence programme containing a set of booklets and online leaflets that challenges all that she described. There are different booklets for each stage from post-op to a year down the line regarding exercise.
Let's talk about Sex by Lorraine Grover
Now I don’t think I have laughed this much in a really long time but Lorraine covered a potentially ‘awkward’ subject with grace, honesty, openness, and humour. The first thing I was most shocked about was I did not realise the majority of male patients who have a urostomy even if it is not due to cancer usually have the prostate removed. This makes sense now I know but I never even queried this, even though before I got ill I worked in radiotherapy and particularly the machine that treated prostate cancer. With my background and I guess my openness I was put on this machine because I got the guys to talk about sex and any impotency problems. So sitting in this room I was quite chuffed that Lorraine was addressing this topic. The majority of men that have their prostate removed have an issue with impotence. For some people, this may not be an issue, however, sex is a natural and needed act and can affect some relationships.
The talk did cover female complaints but mainly covered impotency and the different ways you can do to help this. In my experience men are not as open as women and this subject can be hard to address and even bring up with your GP. Lorraine mentioned that there are creams, Viagra, pellets, injections, pumps, implants, and other options. I got the sense from her talk that the most important thing is communication. Now some of these options were passed around like the injections (with covers on) the pump, vibrators (there was a lot of laughter from the other side of the room) and everybody seemed very chatty, excited and interactive. It was a fabulous talk and I was shocked how well it was received. I didn’t have a chance to talk to Lorraine afterward but I will try and hunt her down to say how amazing it was and how well it came across.
Estate Planning – Wills/ power of attorney talk
This was a very interesting talk and for somebody who doesn’t like talking about anything financial, I understood everything she said. The importance of having a will and the differences in power of attorney. It got me thinking about my own responsibility regarding a will and was a really informative talk.
The UA Nurse Advisor Sharon Fillingham did a Quiz
After lunch Sharon did a very complex and detailed quiz which I was really impressed. After going through the answers I ended up getting the highest 26/30 and ended up winning a bottle of prosecco which I gave to Pat and ..... since I am T total. The quiz covered great topics and it showed me how important it is for us to take some responsibility as urostomates in our stoma education. Underneath is a picture of myself with Sharon.
Parastomal Hernia Repair – Ian Adam
This was another fabulous talk and highlighted lots of things. The first was the lack of research regarding urostomates and hernias. I did not know that a hernia around the urostomy is called a paraurostomy hernia. The consultant also went into detail about different ways to fix a hernia and I really enjoyed the scientific explanations and diagrams to explain it all. He covered mesh in detail, particular studies and other options like resiting the stomas. Interestingly that there are no paraurostomy scientific publications or presentations and that we are being forgotten and not represented in the scientific community. Mr Adam ended the talk that now is the new golden age of hernia repairs and this is a hot topic amongst surgeons so there may be future trials and studies regarding us.
After this talk I was so mentally exhausted I went back to my room to rest and start getting ready for the night’s shenanigans
Evening event – Night in Nashville
We all met at 7.30 downstairs for our 3-course meal and a ‘Night in Nashville’ by Dolminic Halpin and Shelly Quarmby, well what can I say...what a night! I thoroughly enjoyed myself. Everybody looked very smart, and after the meal, the nighttime entertainment started. The music went on and in walked Dolly Parton looking very beautiful and smashed the vocals. We also had Jonny Cash, Garth Brooks, Willie Nelson and Dixie who also made an appearance covering well known famous country tracks!
Now I am going to name and shame...our very own President Mr Derek Rosario has got some moves on him!!! He and his wife got the party started and were the first to hit the dance floor showing us some jive moves. Who said a Consultant doesn’t know how to party? I also had a little boogy as did lots of other members. It was just a lovely, loving, happy and friendly atmosphere. I met lots of new people and never once was left on my own feeling left out.. I really was welcomed with open arms. I was excited to meet Toni in person (Don’s wife) I had spoken to this amazing lady on the phone and couldn't wait to have a cwutch (we are both welsh means hug) and a chat. Once the entertainment ended it wasn’t long before I went back to my room with a massive smile on my face.
AGM on Sunday 10th September
After an amazing sleep, I attended the UA AGM in the morning. This is the first AGM I have ever been for anything and I found it very interesting. Good points were brought up and in particular funding. So this got me thinking...
Thanks to this amazing charity urostomates never have to feel alone again. We can seek identification, comfort, and friendship in one another. However, in order for this charity to keep going, we need funding!! It doesn’t matter how big or small it could be a coffee morning (my mum is due to do this soon) or a skydive everything helps keep this charity running!
We went through the minutes and discussed all the topics. I made a point about the statistics regarding 80% of urostomys are due to cancer may need to be addressed after I asked the room to put their hand up if their urostomy was not due to cancer. About 40% raised their hand so I do believe that other conditions are starting to come through. This leads me on nicely to mention I will be helping the UA get more of the younger urostomates involved. Helping with the PR for the charity to try and get more media coverage and urostomy awareness campaigns launched which subsequently by raising the awareness of urostomies will raise the awareness of the UA. I will also be starting the UA twitter account and for us to have a bigger presence online.
Quite a few people came up to me and said it is quite unusual to have a young urostomate. My response to this was that it really isn’t but because of our lifestyles I tend see a lot of younger urostomates use social media as a support network and wouldn’t necessary go into a meeting. I would like to be able to bridge this gap somehow and start getting the urostomates more involved with the charity.
This weekend has proven to me that age really is just a number. I have met some incredible people and I don’t think I have laughed so much in a very long time. I will try and encourage a lot of people that I connect with to try and get involved next year. It is an experience at least everybody should encounter.