London: for Business not Pleasure

London. The centre of bowel related things

I love going to London, the capital of my country. I never get bored of going, there is always something new to discover; no two trips are the same. It’s expanse, it’s network of tubes and trains, it’s hustle and bustle; it calls to me. I am a Brummie girl after all.

A couple of weeks ago I had a public engagement in the City. I got to attend a small fundraiser and research presentation on behalf of the Bowel Disease Research Foundation. They are advancing the cure and treatment of bowel disease, which is a mammoth task. I am proud to be affiliated with them, as they gave me the opportunity to express my views on how important patient participation is for their research funding of specialist projects. I worked on the PPI day for the upcoming ROMantic Trial of which I am very passionate about. You can read more about that day here.

They are based in the Royal College of Surgeons of England in Holborn. This event took place in The Hunterian Museum; a place of pride and excellence in the long and esteemed history of the RCS. I spoke – hopefully passionately and eloquently – about my belief that patients are the unheard voices of medical progress. That we – as a section of the community – would be sorely missed if researchers and developers of new techniques did not include us in their curiosity. For most who attended; patients are what continue to drive them forwards in their respected fields. Bowel disease is something that does not just affect one generation or a particular age cohort; it affects is all – either directly or indirectly. It is a slow and sometimes silent killer because of the shame that talking about bowels and poo has in our society. The projects displayed that night are helping develop new branches of medicine that can improve Quality of Life and the patient experience of bowel disease. Highly celebrated steps forward.

You can read the BDRF news item of the event here:

BDRF Reception a roaring success

 

A few days after that, I took another trip into the City. This time, for the St Mark’s 6th Annual IBD Day.

Not only was there the opportunity to walk around an inflatable colon, but there were some wonderful talks on IBD topics: including medical management, surgery for IBD, the care of the Red Team at St Marks, IBD nurses and mental health. I took many notes, met some great people and learnt so much. My notes and the slides from the talks are available online soon – link to follow!

I also got to meet up with one of my favourite ostomy people – Shell Lawes of Stoma in a Teacup. Her ambitious drive, her supportive nature and detailed knowledge of so many aspects of IBD and ostomy life is drawn from not only her experience but her passion for supporting others but learning. She is one tough lady and has a wonderful family behind her. She is a credit to the IBD and Ostomy community, especially online; where we first met. It had been a long time coming but it was a pleasure.

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My close proximity to London these days is going to be used to it’s full advantage. I hope to get more involved with the wonderful work that the BDRF do every day and days at St Mark’s are wonderful at reassuring me that developments in IBD care are continuing whilst I live my life in a good period of remission.

Speaking: Loud and Proud

Know what inspires me the most? Other patients. Other ostomy patients, other IBD patients. Those people who have a connection to me once I share my own journey. I met these people last week at a Coloplast Care day. I spoke about how I came to have my ostomy, my IBD history in brief and how life has been since surgery. I tried to follow my written document – you can read it here – but I ended up going with a flow of just my own words, right from the heart. Speaking in this way did make me unexpectedly tearful because even though I’ve been speaking […]

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A Day in the Life – The ROManTIC Trial

Two weeks ago, I was invited to the Royal College of Surgeons in London for discussions of a new trial for Ileocecal Crohn’s patients. This has been the first time I’d been invited – well, I had sought out this day for my own medical geeky-ness – to participate in something so formal and important as a possible trial. Its objective was to gain the perspectives of both patients and doctors in to whether the premise, the thesis of this trial, was valid and if it was, how it was then going to be done and its hopefully outcomes. I […]

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Stoma Nurses; What makes them so important?

A couple weeks ago I got the chance to interview my  stoma nurse about her job role; this is Q & A with Nicola Jennings: Stoma Care Nurse at Good Hope Hospital in the Heart of England NHS Trust. What is a stoma nurse? The title for the role at the hospital I work is ‘Colorectal Specialist Nurse’, this incorporates stoma care. They are specialist’s registered nurses wo have gained additional specialist knowledge and experience in caring for people with colorectal cancer, IBD and other disorders of the bowel requiring surgery. The Role: We provide patient support at diagnosis and throughout […]

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World IBD Day

As this ordinary Monday comes to a close to many, I sit here going into the final few GMT hours of World IBD 2014 with some unrest. Should I show them? No one has seen these before, I’ve not allowed myself to bear these photos to other humans, not even other IBDers.. what am I scared of? What am I afraid of, apprehensive about? Why not be brave and share you, Louise? Yes, I even full first named myself, that’s how much of an indecision this is. But, I want to show people what IBD can do to you, of […]

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#GetYourBellyOut

It is always great to see a social media campaign get a startling, yet thoroughly deserved coverage and support sorely needed for IBD. Campaigns for IBD here in the UK haven’t always kicked off the way those behind or supporting it have wanted. There is some professional jealousy, as to why IBD still does hasn’t achieved the publicity and awareness it is currently lacking. This campaign though, #GetYourBellyOut follows in the footsteps of Cancer Research’s #NoMakeUpSelfie from March 2014 – in which females posted make up free pictures of themselves and nominated female friends to join in spreading awareness of […]

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It’s finally time..

.. to raise some funds and some eyebrows. I’ve always been abit confused as to why people fundraised for charities. Alot of people did it whilst I was at school and university and I was always too busy with studying to get down and into it. As with everything else in my life, Crohn’s has changed many aspects of it and has forced me to change my ways in so many respects. For the past year, as I battled my way into remission and subsequently out of it in the New Year, I became restless. I needed something new to […]

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CCFA: Escape The Stall

I am British; I reside in the UK and we do not have many public service campaigns or advertisements for medical conditions or indeed medications. We differ alot in how we publicise and explain IBD to the United States. That being said, the new CCFA campaign “Escape The Stall” has been all over the social networking system and indeed in the American press: NY Times, I’m looking at you. Here are my thoughts: Firstly, I appreciate an IBD campaign. And yes, alot of people have negative opinions towards these new adverts as they simply show IBD to be “just a […]

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: National Invisible Chronic Illness Awareness Week is Coming! September 10-16, 2012

chroniccurve: National Invisible Chronic Illness Week is here! It’s time to spread the word and participate in this event. I’ll be blogging each day with a different topic relevant to invisible illness and what you can do you make positive changes to help others with these diseases in our society. It’s… : National Invisible Chronic Illness Awareness Week is Coming! September 10-16, 2012

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The wegohealth HAChat on Tues June 5th was a really weird one. Health Activism and Health Technology. Being an American run and based support network and community for a variety of health illnesses and conditions, its really hard getting involved like I want to because I am in the UK. Now, there is nothing wrong with the heath care system that requires a major shake up – and I am in no way saying that I wish the NHS was different or stating that it is fine how it is, its all just my opinion – but having been a patient […]

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