For a start, I'm not the typical IBD patient. I never endured years of different drug treatments or hospital visits. I never tried different diets or therapies. I'd never even heard of IBD or ostomies before my diagnosis. We have no family history of illness. The time between my official diagnosis and first surgery was so short - only a couple of weeks, all of which I spent in a hospital bed.
The solid fact, one which I'll have to live with, is that had I gone for medical help much sooner, I may have avoided surgery, for a few more years at least.
So how did it all begin? Looking back, I had a touchy stomach for pretty much all of my teenage years. From around 15 years old, I'd suffer from bloating, stomach cramps and constipation. I certainly had no bleeding at this point, or anything to suggest that my problems were anything more serious than a bit of IBS. I'd get other odd problems too - swollen and itchy eyes, which always cleared up on their own, which I blamed on cheap mascara. I tired easily, but put that down to late nights and school stress.
Me aged 16, before everything started
I can't confidently link these symptoms to my IBD - they may have been nothing more than an unlucky coincidence. But by late 2012, when I'd just turned 18, I experienced the first symptoms that should have been more of a cause for concern. I remember first passing blood, which was accompanied at that point with constipation (now, I know, a symptom of early proctitis). But seeing the two together, although a shock, convinced me that this was nothing more than a case of piles. Constipation and bleeding - a classic, right? Added to the fact that I had nothing on my medical record since childhood, I didn't think of it as much of a problem. I just carried on as normal.
I began to experience episodes of bleeding and constipation every month or so, which lasted for a week or two. By early 2013, constipation and bleeding had turned into diarrhoea and bleeding. But when I say bleeding, it was only a couple of drops most times, and I'd already firmly convinced myself that this was somehow normal, or not much of an issue.
As I worked through my A levels, my 'little problem' began to worsen. Bleeding/diarrhoea episodes 'every month or so' became 'every other week'. Distracted by studying and planning for my post-school summer, I kept on ignoring it. I told myself that it would go away on its own. On work experience in summer, the symptoms really began to kick off. I remember going to a local chemist and in desperation buying a pack of piles suppositories along with a pack of Imodium. The cashier gave me a worried look and asked me 'if there's anything I wanted to talk about'. Embarrassed, I said no, and left.
I packed my summer full of fun activities and felt ready for uni in September. I'd got into my first choice university and couldn't wait to start. I went on a party holiday with friends to Malia and had a brilliant summer.
Paint partying in Malia, summer 2013 - my stomach pre-surgery!
I started university in September and got fully involved in fresher life. At this point, I was also a regular blood donor. I went to my routine donation appointment in November, only to be told that I was too anaemic to donate. So anaemic, in fact, that the clinic barred me from the donor register for 3 months and told me to make an urgent GP appointment.
This should have rung alarm bells, but it still didn't. By this stage, ignorance had become complete denial. I was starting to worry about what was happening to my body, but thought that it couldn't be something serious if I'd been living quite normally for so long. Telling myself that it wasn't serious was my way of coping. And most of all, I was just so embarrassed. I was 18, just turning 19. Which girl this age wants to discuss her bowel movements?
So when I went to the GP and told him I was anaemic, I still didn't mention my bleeding. He assumed I was anaemic because of my age and sex, and prescribed iron tablets.
By this stage (late Nov/early Dec) I was pretty pale
A week into taking these in late November, the symptoms erupted like never before. Things went downhill very quickly. The bleeding became constant. I'd be running to the toilet countless times a day, and I'd be woken several times at night. The cramping became worse. I became relentlessly tired. I'd sleep all night and wake up the next day just as tired as before. I'd even nap between lectures. My appetite slowed, and I realised I'd lost weight.
Throughout December, I struggled on until the end of term when my tutor saw me in university and told me just how ill I looked. She suggested I get the first train home, which I did. Back in Nottingham, I spent a week on the sofa, getting steadily weaker. My mum, not realising how long this had been going on, thought I was suffering from some sort of bug. By now, the breathlessness had started. I became breathless climbing the stairs and walking around. Then I became breathless just sat in a chair. Then even lying still made me feel like I'd run for miles. The scales showed that I'd lost 2 stone. I'd started to experience shooting pains all over my body - in my jaw, my limbs, and most worryingly my chest.
When I look back at this photo, it shocks me how drained I look. Early Dec 2013
When my mum finally convinced me to come to an emergency GP appointment on 16th December, the doctor took one look at me sat in the chair and dialled the hospital to request a bed for me. I finally confessed to my year's worth of symptoms. After his assessment, I remember him telling me, with decisive certainty, 'You have either Crohn's Disease, or Ulcerative Colitis. I think it's the second.'
At my point of admission, I had less than half the Hb in my blood than I should have. I was severely underweight, dehydrated, and deficient in five different minerals. The doctor who first saw me in hospital asked me if I'd taken any illegal drugs. I hadn't, and asked him why, and he said 'why else would you not come for help sooner, when you were clearly so sick?' Until the tests came back negative for any substances, I'm not sure he believed me when I said I'd simply been too embarrassed.
Christmas Day 2013 in hospital
Once in hospital, things moved quickly. A flexi-sigmoidoscopy confirmed UC. My stomach started to swell and bulge, even though the resy of me was stick thin. I was being X-rayed daily for signs of toxic megacolon. IV Prednisolone did nothing. IV Ciclosporine initially appeared to touch the symptoms, but after Christmas and New Year in hospital, a severe hemorrhage on New Year's Day confirmed that my colon's time was up. I had my emergency colectomy on January 2nd, a few weeks after I'd been diagnosed, and a few days after I'd ever heard of ostomies. Months later, my post-op report came back confirming pancolitis - ulceration of the entire colon. Basically, as bad as it gets.
So what has my experience with IBD meant to me? For a start, my own story was what initially inspired me to reach out to others. I can't be the only person out there who hid my symptoms out of embarrassment - in fact, my consultant said it's sadly common, particularly among younger patients. After my emergency surgery, I became determined not to be embarrassed by my body again. Because in reality, it's embarrassment and shame that made me so sick, not UC. If my blogging, my posting and my raising awareness can help just one other scared, shy person to go to their doctor about suspicious symptoms, then I'm happy.
Initially, I was also devastated at the prospect of an ostomy. It was something I'd never heard of, and was completely unprepared for. I can't put into words how anti-stoma I was at the time. I screamed in protest at several doctors and nurses who mentioned surgery to me. In my mind, although I'd been sick for a long time, I'd been living fairly normally, so the prospect of an ostomy both disgusted and terrified me. Yet in the past year and a half of having a stoma, I've done and achieved so much that I can safely say I'm extremely happy. I don't think about the bag a lot either - it's just a part of everyday life for me now. And having a stoma really taught me to love and appreciate my body, and not complain about 'wobbly bits' or rubbish like that. My 'wobbly bits' are healthy, so that's fine with me. I blog and talk to others to try and give confidence and hope to people who are also facing surgery with uncertainty. I want to show just how good life can be with a stoma. An ostomy isn't the end - it's the beginning.
And although I know deep down that had I been diagnosed earlier, I may not have needed a stoma, there's always the possibility that like others I might have waited months for a diagnosis. Even then, if I'd been diagnosed promptly, I'd be faced with a disease for life that cannot be cured. My consultant also said that my UC was one of the more vicious cases she'd seen - because most patients respond at least slightly to IV treatment, whereas my disease didn't even blink at it. In a way, it's almost a relief that the choice to have surgery was taken away from me. I didn't have to go through years of 'shall I, shan't I' that causes a lot of emotional turmoil for so many sufferers.
In short, there's lots of reasons I didn't go to the doctor with my symptoms. Embarrassment, shame, ignorance, denial and thinking it wasn't serious were all part of my thought process at that time. However, looking back, what happened taught me a great deal and from where I am today, I wouldn't want things to have turned out any differently.
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