I posted on my Instagram recently about the struggles I’ve been having with my disease. I was surprised at the number of comments and messages I received asking what it was. I thought we’d come a long way over the past few years in terms of raising awareness, but maybe not. That said, I’d never heard of it before being diagnosed myself! I also had people with other conditions reach out to me. So it gave me an idea to start a blog series about mums with chronic illnesses, so the Chronic Mum Club was born. What the hell, let’s get a hashtag on the go! #chronicmumclub
In 2011, I was diagnosed with a disease I had never heard of before. Ulcerative Colitis.
Ulcerative Colitis (UC) is a chronic illness and a form of Inflammatory Bowel Disease (IBD). It is an auto-immune disease. This means that the bodies immune system of somebody with UC attacks the healthy tissue in the lining of the large bowel and rectum causing it to become inflamed. It is thought that the bodies immune system mistakes harmless bacteria in the gut as a threat, leading it to react in a defence. There is no cure. UC is controlled through medication and/or surgery.
Symptoms may include:
Diarrhoea (frequently with blood/mucus)
Frequent bowel movements
Joint pain and swelling (sometimes developing into arthritis)
Constipation (sometimes leading to blockage)
Loss of appetite
Eye, skin and liver problems
March 2011. For a little over a week I had been having extreme abdominal and rectal pain, especially during bowel movements. It was excruciating. I was also passing blood. A lot of blood. The first time I looked in the toilet and saw that, I swear to you my heart skipped a few beats. I thought the worst, which I’m sure a lot of people do. I went to my GP and told her my symptoms. She then gave me a cream as she suspected I had a fissure (tear) and sent me on my way.
Another week went by and I had deteriorated. I went to see the same GP who told me to continue with my cream for another week.
I didn’t wait another week. I was in agony, going the toilet 20+ times a day and passing blood every time. Instead, I asked to see a different GP. Dr Ashton. I will never forget her name. I went into her office, sat down and told her everything I told the first GP. By this time I had lost a lot of weight. She checked my eyelids which she said were very pale and took my blood pressure which was sky high. She instantly called an ambulance. I absolutely shit myself! (Not literally). She sat me in a private room with one of the receptionists while I waited for the paramedics. I was so scared about what might be wrong with me. Dr Ashton came in with the paramedics not long after and told them “I think she may have Crohn’s or Ulcerative Colitis, she’s lost a lot of blood”.
I’d heard of Crohn’s as my cousin has it, but I didn’t know what it was and I’d never heard of Ulcerative Colitis. What’s running through my head right now…. “Fuck”.
Now on the way to the hospital, the paramedic puts in an IV needle in case I needed a blood transfusion. I really did look like a zombie.
At the hospital, I was on my own and I couldn’t hold back the tears. My dad was on his way, but I didn’t know how long he was going to be. I was shitting bricks. You know what I mean! Anyway, a lovely lady who was in with her daughter came to comfort me. She offered to look for my dad for me. “What does he look like?” I replied through my tears in hysterics, “Santa.“. Seriously, he’s the spit. She returned within minutes with my dad. Priceless.
I was taken into another private room and fitted with an oxygen mask and was told the surgical team would be there shortly. Again…. “Fuck”.
About 6 or 7 doctors came into the room with clipboards and assessed me and suspected the same as Dr Ashton. Thankfully I wasn’t taken into surgery. The head surgeon didn’t think I needed it just yet and wanted to avoid it if we could. I was taken to an available bed, to my surprise I had a room to myself and my own toilet. This was a small win in the long road ahead. I was fitted with 2 more IV’s, one for fluids and the other for meds, steroids and pain relief. I felt like a human pin cushion.
Two days later, I was taken for a sigmoidoscopy (delightful experience). Where I was officially diagnosed with what Dr Ashton suspected almost instantly, “You have Ulcerative Colitis.”
I have to say that even though I struggle a lot, I count myself extremely lucky with how I’m able to manage my UC. Though I don’t think a day goes by that I don’t have any symptoms. Sometimes they are very mild and I can just put up with it and hide it. That’s the thing about invisible illnesses. Others can’t see anything physically wrong so they can’t accept that you’re ill or they think you’re just being “lazy“. I get most of the symptoms when I’m flaring, but thankfully it isn’t as often as a lot of other people with my condition. My biggest struggles are the intense abdominal pain, bleeding and the fatigue, which along with it brings anxiety and depression. For me, there’s nothing worse than feeling so tired and too weak to move that you struggle to even get out of bed. I worry about what might happen in the future sometimes in terms of my health. The type of UC I have is Pancolitis, which affects my entire large intestine as opposed to just part of it. If I were to have another severe flare-up that I couldn’t control with drugs, removal of my intestine could be a possibility. I know I shouldn’t think what could happen, but I can’t help it sometimes. Since becoming a mum, I think about it more than I used to. How will I be able to look after my son if I can’t even look after myself? I can’t just stay in bed when I’m not well anymore. That’s just not an option when you’re a mum. No matter how shit I’m feeling and how much I’m struggling, I just have to get up and carry on. Because my beautiful little man is depending on me. What happens, happens. The only thing I can do, no matter how bad I feel, is to be the best mum that I can be.
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