My disease is Ulcerative Colitis and it is going to be mine forever!
The time feels right to start raising awareness and sharing my story because my disease is not going anywhere, and it certainly is not going to beat me. Please don't let the title of 'My disease' scare you off because I want these posts to be knowledgable, helpful and informative. Having a chronic disease has become part of daily life to me, I want to write these posts to share my experiences and not feel isolated throughout.
We're at post 3 in the 'My Disease' series and it's time to talk about understanding it!
When I was diagnosed with proctitis/ulcerative colitis, I went straight onto Crohn's and Colitis UK website as everything was so easy to access. All my prior knowledge of the disease stemmed from my Nana as she suffered with colitis and had an ileostomy due to the severity. Immediately I was scared, now looking back I wish someone would have told me this.
5 tips to understanding Ulcerative Colitis:
1. Colitis is an auto-immune disease causing an inflammation and ulceration in the colon and rectum which makes you shit, a lot!
Basically, your immune system is fighting against your body which in the mean time, creates ulcers and a bit of a mess in your colon, hence making a mess of your bowel movements!
The diagram below shows what my disease would look like if it was visible on the outside and after being made to watch the camera travel through my colon, I can tell you its a good job you can't see it!
Stages 1-4 show the severity of colitis, 1 being Proctitis only effecting the rectum and 4 effecting the whole colon. My condition, as of now, has reached stages 3-4 even though I was diagnosed early on.
2. IBS is not IBD.
Irritable Bowel Syndrome is a completely different condition to Inflammatory Bowel Disease but they get confused so easily. I understand they sound similar, but when I was first diagnosed I let people assume that they were when they are completely different. The truth is that IBD causes inflammation, ulceration and damage to the bowel whereas IBS does not, IBD involves rectal bleeding IBS does not and the extreme fatigue with IBD is not a symptom to IBS. Although the symptoms of stomach cramps, varied stool movement and the urgency to go may be shared, they are two separate conditions that need to not be confused!
3. Everyone suffers differently.
One of the most annoying things to accept is how 'My disease' really is 'My disease' as every sufferer of Colitis is unique. When I was first diagnosed, I understood that the disease had a process of being in 'flares' and then 'remission'. I was obviously searching for remission and as of September 2017, I can't say I've found it. My experience with the disease has been a constant suffering of symptoms in one long flare. Other people go years before seeking medical help as their short flare ups are followed by months of remission, it's different for everyone!
4. Therefore, everyones treatment is different.
Ulcerative Colitis has no definitive fix and my god do I wish it did!
There will be a post on my personal treatments at some point but heres a quick overview.
In general terms treatments range from anti-inflammotary drugs, steroids and biological drugs which all can be taken in tablet form, through infusions or the joys of enema form. In treating Ulcerative Colitis, I've gotten the impression its a trial and error system. My body has been quite unresponsive to most drugs and the next stage if it can't be managed with medication, is considering surgery. The one surgery I know for Ulcerative Colitis is an ileostomy as that is what my Nana has lived with for 50 years. I am not hugely knowledgable on the surgery side as I hope my disease doesn't progress to that but if you're interested in learning more, Crohn's and Colitis UK have plenty of information.
5. It is a chronic disease with no cure.
I'll most probably do a separate post on this, but Ulcerative Colitis is a chronic condition meaning it will have to be managed for the rest of my life. Even though you're told you can get back to normal once its under control, there is always the underlying feelings that things might not be normal forever. I think accepting that I have this disease for the rest of my life is the hardest part because I think of my life pre-diagnosis and wish things were that simple again. The daunting prospect of it having no cure is what pushes me to fundraise for Crohn's & Colitis UK as there is nothing more that I could wish for than a life without this disease!
My fundraising JustGiving page can be reached here!
Honestly, I'm still understanding my disease as there is so much to it and I'm so newly diagnosed, I could never know it all! I hope this has increased your knowledge on Ulcerative Colitis and made you think about battling IBD together!
Lucy Jane
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