I was diagnosed with Ulcerative Colitis in December 2008 at 20-year of age. So 2018 marks my 10 year battle with living with this chronic bowel disease.
What is Ulcerative Colitis?
Ulcerative Colitis is a form of IBD (Inflammatory Bowel Disease) and is a long-term (chronic) condition. IBD is potentially fatal if complications occur.
Ulcerative Colitis affects the colon and rectum and it becomes inflamed, resulting in ulcers, bleeding, pus, pain, fatigue, frequent painful loose stools, joint pain and weight loss.
Why 10 years?
It is advised that 8-10 years after diagnosis you have a colonoscopy to check for potential signs of colorectal cancer. Patients with Ulcerative Colitis are at an increased risk of this type of cancer.
Although it is said that the vast majority of people with ulcerative colitis will never develop colorectal cancer, and it is highly treatable when found early. So later this year, I am due to have a colonoscopy, which yes I am very nervous about. It’s been a long time since I had one. Although the sedation gives you a pleasant feeling, and highly recommend having some, to take the edge off your nerves. I am also nervous as to what they may find if anything even thought symptom wise I am controlled.
My last flare was early 2012, I put that down to my body settling back down after having an emergency cesarean in 2011 for the birth of my daughter. I underwent a colonoscopy to check everything was ok, and hadn’t worsened and started a new drug called Mercaptopurine soon after, and ever since I have been in remission.
I still see the consultant or IBD nurse as an outpatient every 4 months, to discuss everything. Blood tests are still on the cards I go every 12 weeks, to ensure my liver and kidneys are performing as they should. This will never stop. The joys of being on harsh toxic drugs to control this. My latest appointment was in February this year, I saw the IBD nurse. I was asked if I would take part in a new clinical trial. This involved me giving blood samples and answering quite a long questionnaire about my health. The blood samples would be kept and used to look at my complete DNA structure. Thousands of people who have IBD have been asked to take part, in the hope, they find a specific genetic link as to why/what causes IBD.
Since I was diagnosed in 2008, so much research has been carried out. Although a great deal more needs to be done. There is no cure, there may never be, but we have to keep trying. You can find out all the research that Crohns and colitis UK have undertaken by clicking here.
IBD is largely a hidden disease, and many people suffer in silence. A lot of stigma surrounds IBD and this causes people to feel fearful and isolated. I have seen a positive change when it comes to disabilities, and more and more people are recognizing that not every disability is visible. IBD among others is a very disabling disease, and we need access to toilets quickly when we are flaring, and space to change colostomy bags etc. This is hard to do in a typical public toilet. Can you imagine the looks you would get emptying your waste down a sink? You need the privacy of an accessible/disability toilet.
There are many horrendous news articles where IBD sufferers have been let down and more needs to be done, more awareness is needed especially in employment, where staff deal with the public and situations like this may arise.
Thankfully, members of Crohnsandcolitis UK receive a Can’t wait card which is a fantastic card to have on you at all times. It aims to help you gain access to toilet facilities quickly. All you have to do is show your card in public places or stores and ask if you can use their toilet. Although the card is not guaranteed to give you access to toilets, these cards are widely accepted and recognized, and further training is being given to stores and their colleagues. Which is great news.
So roll on later this year. I will, of course, keep you updated on my progress and the procedure itself.