19 May is World IBD Day. IBD stands for Inflammatory Bowel Disease, which is not to be confused with IBS – Irritable Bowel Syndrome (word of warning – please don’t compare IBD to IBS to someone who has IBD!). IBD is mainly used to describe two diseases: ulcerative colitis and Crohn’s Disease, which effect the gastrointestinal (GI) tract in slightly different ways. Both are autoimmune diseases that cause chronic inflammation of the GI tract; in short, the immune system attacks the GI tract causing all sorts of issues including inflammation, ulcerations, infections, fistulas, GI bleeding, abdominal pain, fatigue and the one most people think of when they hear IBD, diarrhea. As with all diseases, the severity and symptoms that patients suffer from vary hugely.

I was diagnosed with Crohn’s Disease when I was 27 years old. I was lucky with my diagnosis in that I’d only had symptoms for 6-weeks and therefore didn’t suffer any long-term damage to my GI tract. However, when the doctor gave me my diagnosis, in the same breath he told me that 80% of Crohn’s patients end up getting surgery to remove diseased and damaged parts of their bowel at some point in their lives. This was quite a lot of information to take in when I had walked into his office expecting to be told I had some sort of parasite that would go away with a course of antibiotics.

15 years later, I think about that statistic often and whether I will one day be included in it. With all the new drugs that have been developed since my diagnosis, what is that percentage today? According to the Crohn’s and Colitis Foundation in America, it’s still around 75%. The Cleveland Clinic estimates 50% and Crohn’s and Colitis UK says 20%. Other than highlighting the difference in medical treatments in the US and UK, it shows a) how different people’s experiences with IBD are, and b) how fast treatments are changing. Because medications change so fast and symptoms can become so severe, management requires specialists; any good GPs I’ve had have realized that they are not equipped to treat me and refers me straight to the gastro team at the hospital.

In 2009, I did have a GP who tried to treat me herself. It was only a year after my diagnosis and I’d not suffered any particularly difficult symptoms up to this point, so didn’t know the type of beast this disease could become. I’d grumbled along with a bit of abdominal pain and diarrhea for a couple of months and finally when I couldn’t sleep because of the pain, I went to the GP to see what she could do for me. She prescribed me a medication that I now know in hindsight only works for ulcerative colitis (not Crohn’s) and told me to come back in a week if I was still in pain. Three days later, I was sleeping on the floor with my legs elevated on a chair because the pain was so severe. I no longer had private health care for Crohn’s as I’d had a break in cover between jobs and it was a pre-existing condition. My mom was living in the States at the time and was desperate for me to see a specialist (which I didn’t know how to do on the NHS, as you can’t just call up a consultant and ask for an appointment; again, in hindsight that GP should have told me to go to A&E, but I didn’t know that then). So my mom told me she’d pay for me to see someone privately. When I saw the IBD consultant later that week, he examined me and told me I needed to see a surgeon that day, which I did. After an MRI, the surgeon called me at 8 pm that night and told me he’d booked me in for surgery the next morning. The MRI had shown that I had a massive infection in my abdomen that could only be treated surgically. The infection had also caused fistulas (a small tunnel of tissue) between my intestines and other organs that he needed to remove. The recovery from this surgery was long and painful, but at least it led me to St Thomas’ Hospital and the most amazing gastro consultant, under whose care I’ve been ever since.

So here I am – a Crohn’s patient who has had surgery; however, my surgery doesn’t even fall into the statistics above, as I didn’t need to get any damaged or diseased bowel removed – I needed an infection drained and fistulas removed. I think that epitomizes mine and many others’ experiences with Crohn’s Disease: there is no typical experience and everyone suffers from this disease so differently, which is why statistics can be misleading. But if you don’t treat it and take it seriously, it will get the better of you. I think that is universal, not only for IBD but for all chronic diseases and serious illnesses.

Since my surgery, I’ve tried to keep on top of the symptoms before they can cause such damage. However, it’s not easy. Treatments for acute flare-ups are either steroids, metronidazole (a very strong antibiotic with uncomfortable side-effects) or replacing all food with horrific shakes for months at a time. And even then, these treatments aren’t guaranteed to work. For years, steroid tablets worked well for me; an 8-week course would clear-up my symptoms. Until they no longer did. Twice in the past 10-years I’ve ended up in hospital at the end of a course of steroids, because they’ve just not managed to clear-up the inflammation. If steroids don’t work, the next course of action is to take them intravenously and that requires several nights / weeks in hospital. If the steroids don’t work, then you move onto the antibiotic. And if that doesn’t work, they remove the damaged bowel, which I’ve avoided to date. I’m now on an immunosuppressing biologic injection (a “maintenance drug”) that works well at keeping my symptoms at bay, which means I am now in remission. I also incorporate a relatively strict diet, acupuncture, Chinese teas and routine exercise into my daily life to try to manage my disease.

Even though I’ve had some challenging times with this disease over the past 15 years, it hasn’t defeated me and I don’t even hate it. I feel Crohn’s and I have a mutual respect. It’s taught me to listen to my body, as it will tell me when I’m doing too much, and it, too, responds to kindness and compassion (not always, but often.) Adversity makes us stronger, after all, and if Crohn’s is my main struggle, I consider myself blessed.

By Fiona Hills

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