IBD Insights: Meet the PPI Panel
The PPI Panel members
(L-R) Naomi Hanrahan (APC researcher); Victoria Spillane (APC and Crohn’s and Colitis Ireland); Mick Dineen; Aoife Murphy; Kevin Moore
At 27 (Oct 2009), I was diagnosed with Ulcerative Colitis after being admitted to hospital with an acute flare up which had me in hospital for 1 month. I had just completed a Research Masters in IBD Insights: living with the disease Engineering and was let out of hospital for a day to graduate. My weight had dropped from 75kg to 49kg in 3 weeks due to the flare up. Over the next 3 years I battled with the disease, with multiple acute flare ups and hospitalisations, including 1 in Australia while on a working holiday. I faced emergency surgery 3 times but managed to avoid it each time. I was put on Infliximab in August 2012 and have been in remission since. I also gave up alcohol. Since I was diagnosed, I have started my career. I am now a Senior Mechanical design engineer. Since going into remission, I have returned to Martial Arts and am on my 2nd Dan in Shotokan Karate, and blue belt in Brazilian Jiu Jitsu. I play tennis, mountain bike, run, go hill walking and sea swimming. I travel lots. I have a love and passion for food and love trying new and interesting dishes.
My IBD journey began aged 13 when diagnosed with Crohn’s Disease in the large intestine in 1999. Symptoms began with knee and lower back pain which my GP misdiagnosed as a sports injury. Excruciating abdomen pain, frequent loose stools (20+ times a day), severe fatigue/irritability, lack of appetite & weight loss, episcleritis (inflammation of the eye) and fistula linked to the small intestine all followed on from there. I was scheduled to have a panproctocolectomy upon diagnosis but due to my age, they tried to save the intestine for as long as possible until the day came where my life restarted – January 21st, 2011. The entirety of my large intestine was removed with my blessing (all medications available up to that point did not work and it was inevitable that this was the path which I would need to take to try and get back my quality of life) which resulted in living with a permanent stoma/ileostomy. The surgery was one which saved my life due to a fistula that was leaking which was only detected during the surgery. Since then, I have had relatively good health and lucky enough to be IBD meds free for the moment, however I am currently undergoing investigation for mechanical issues regarding the stoma (parastomal hernia and/or adhesions being questioned) along with other Crohn’s Disease related symptoms that may also be linked to Lupus diagnosis (another auto immune disease). I have looked at turning a negative situation into a positive and work to help others who live with IBD.
I am a 59-year-old male in full time employment with Ulcerative Colitis diagnosed in 2003. The first symptoms I ever noticed involved blood in my stool and discomfort in my rectum around IBD Insights: living with the disease 1991. I took no notice of it, and it resolved itself quickly enough. But that would return to bother me regularly albeit infrequently. This changed though in 2003 when I experienced a lot of stress at work. My symptoms escalated with copious blood and mucous passing. I knew something was wrong. I developed dermatitis on my hands which was also an inflammatory reaction to stress. I sought help from my GP, and he referred me to the South Infirmary for a colonoscopy which diagnosed pancolitis. Now it all made sense - I was put on medication that did help quite a lot. Symptoms faded into the background but ebbed and flowed in a minor way. In 2007 for no apparent reason my symptoms became progressively more severe, passing blood about thirty times a day. I was put on steroids which helped, but as soon as I lowered the dose the symptoms came back with a vengeance and became debilitating. I was admitted to hospital and treated with IV steroids. My medication dose was increased. I was unhappy with the steroid treatment as I knew it was damaging, I developed Type 2 diabetes. I tapered off steroids and symptoms worsened, and I was admitted to hospital again, CUH in October 2008. IV steroids stabilised me and I was prescribed (6-MP) and Asacolon. My symptoms remained stable enough and then eased over the next few months. My symptoms were now under control and remain so.
I was diagnosed in 1999 at the age of 14 with Crohn’s Disease after histology results from a colonoscopy confirmed disease in the small intestine. I was on steroids and dipentum for a few years trying to manage flares. I moved onto Azathaioprine around 2002. In 2008 I had my first small bowel resection in Kilkenny to remove scarred areas of my small intestine that were causing blockages. In 2012 I had a second small bowel resection in New Zealand and a third in London in 2018. I started on the biologic Humira in December 2016. Thankfully since my last surgery I have remained in remission. I was able to go to college, become a structural engineer and travel the world alongside the Crohn’s. I was very lucky to have great consultants wherever I went. I have experimented with lots of vitamins, probiotics, diets etc to settle on a varied diet with a good multivitamin and omega 3 fish oil.