Living with Ulcerative Colitis

If you don’t already know, I have Ulcerative Colitis; an incurable autoimmune disease, that affects my day to day life. Sadly, it’s an invisible illness, so it’s quite misunderstood and often not taken seriously by people who don’t realise what it’s like. Here are 10 things I deal with, and what it’s like for me living with Ulcerative Colitis. 
  1. It’s unpredictable. Unlike some illnesses and diseases, the symptoms are not constant, and specialists still don’t completely know what causes it. There are days where you feel well enough to go about your day, and then it can suddenly hit you and you can’t even leave your bed. It makes plans impossible to stick to, and is generally a pain in the backside (pun intended). It means family, friends and colleagues don’t understand why one day you posted a photo at a meal enjoying yourself, and the next day you’re too ill to go anywhere. I was once accused of faking my disease because of this. Guess what – I didn't hang around there too long… No time for people like that.
  2. You have to take very unpleasant medication, possibly for the rest of your life. The worst one for me is steroids. I have to take 2 types of steroids up my bum every day. It’s horrible, it feels unpleasant, it’s a chore to do and the side effects are iffy. It causes weight gain, moon face, mood swings, not to mention it stings inside your butt. That’s just one kind of medication I have… I take 6 different medications every day to try to control my disease and even then it doesn’t always work. Not to mention what other people have to do when they’re on the severe side, with infusions, immuno-suppressants, injections, IV steroids. I’m VERY lucky my condition has not been that bad.
  3.  The lack of awareness and understanding from others. My worst experience has been at work. Like I said before; I was accused of faking, to which I welcomed them to contact my GP, my specialist consultant and my specialist nurse. Work got very difficult because of my symptoms and unpredictability, not to mention my boss making it awkward for me, so I ended up feeling like I had no other choice but to leave a place that didn't care or believe me. I'm purposefully not going to say which company it was. I’m so pleased with the support from my family and friends, but even they don’t completely understand what it’s like because they only see me on my good days, and I often just put on a smile. If people were to see photos of the inside of my colon from my scope tests compared to a “normal colon”, they’d have never questioned me – but that’s a little too personal.
  4. It’s an “invisible” illness, in the sense that physically – I look OK. I don’t walk around with the bruises from my endless blood tests and injections on show. I can’t even leave my bedroom on my worst days, so no one see’s them. My social media is filled with smiles and good memories because I’m not exactly going to post about how much blood is in the toilet that day, and how much pain I’m experiencing. Going to a disabled toilet is the worst. I choose to use disabled toilets because, a lot of the time, using the toilet is extremely painful for me. I do worry about someone thinking I’m just a girl avoiding the standard cubicles. I’m very pleased that no one has said anything to me so far but I have seen stories in the online forums about people being berated for using accessible toilets and “looking normal”. 
  5. When people suggest diet. Eating healthy will not cure my incurable auto-immune disease. While diet can be a small factor in some people’s health. It’s not in mine. In fact, I literally cannot eat healthily. I have to have a very low fibre, low residue diet, otherwise it is very painful going through my damaged, ulcerated, and inflamed colon. Eating fruit, nuts and vegetable makes me feel worse. I can’t even eat popcorn anymore, which I’m gutted about – I miss Butterkist toffee popcorn! I find myself living off chicken, rice, pizza and chips. Sometimes I feel a little adventurous when I’ve had a few good days and I regret it for about a week when I’m bed bound. Please do not tell me to just “eat healthier” and I’ll get better. I won’t.
  6. Toilets. It is a HUGE fear of mine that if I go somewhere, a toilet will be too far away. One of the symptoms of this disease is urgency, and the inability to hold in. It’s not the same as regular diarrhoea from a bug. It’s intense. You have accidents. You leak blood from your backside. You get the feeling of having a fever and dizziness. You literally get seconds to get to a toilet on very bad days. It’s extremely painful because my colon is ulcerated, inflamed, swollen and damaged. This means using the toilet in peace is a god send – which is why I try to stay near an accessible toilet. I have a radar key and a “Can’t Wait Card” from Crohn’s and Colitis UK, which in emergencies I can show to someone to ask to use a staff toilet. But then, it comes down to awareness and understanding again. This isn’t just a few days of the bug. This is for the rest of my life.

  7. Fear of the condition worsening. I’m very lucky that my condition was “moderate” when I was first diagnosed, and now, due to all the medication and lifestyle changes – they say I’m “mild”. In worst case scenarios, this condition leads to bowel perforation, toxic mega-colon and bowel cancer. Lots of people with Crohn’s and Colitis have to have parts, or their whole bowel removed and live with a stoma bag. This could happen to me. It’s scary. It doesn’t matter if people say, it might never happen. The thought that it could, at any point in my life, freaks me out.
  8. Having to fit in hospital appointments. This was something else that made work difficult. I have to see my GP very often, so much so we now have a pretty good relationship. I have to have outpatient appointments every 6-8 weeks to monitor my condition with the hope that if I go into remission, it will then only be every 6 -12 months. But for the last year it’s been every 6 weeks. Not to mention my 2 flexible sigmoidoscopy’s and colonoscopy which meant 2 days of work each time. My trips to A&E. My further referrals for joint pain, my MRI scan and my weekly Cognitive Behavioural Therapy sessions to cope with anxiety, stress and depression as a result of living with this condition.
  9.  Paying for prescriptions. Before I found out a “Pre-Payment Card existed, I spent around £100 in a matter of 4 months on prescriptions when I was newly diagnosed, since my medication was constantly changing to find what worked best. Now I have a pre-payment card, it’s easier. It is still very expensive, and I will have to pay for prescriptions to keep my condition under control for the rest of my life unless I become too ill and stay unemployed or end up on Personal Independence Payment (PIP).
  10. This last one for me is the worst. It’s lifelong. There is no cure. I will always have Ulcerative Colitis. I can go into periods of remission where I experience no symptoms, which I am yet to achieve. But even then, it can relapse at any time. It’s very sad for me, knowing this will always been there, even if it’s just lurking in the background. I found it harder when I got diagnosed, but now I’ve learned to cope better and deal with it. Through the amazing support of my family and friends, my consultant and the NHS, I feel more confident in my day to day life. And I hope that soon I will go into remission, and it will stay like that for a while. I have seen that people get a good few years in remission. So fingers crossed. I’m hopeful.