Living with someone with a chronic illness: A World IBD Day tribute

This summer will mark four years since my fiancé Daniel and I started living together. I absolutely wouldn’t have it any other way; I love waking up to him every morning and going to sleep beside him every night, especially after a long, hard-working day. Nonetheless, it’s safe to say we haven’t always had it easy. Our first couple of years of cohabiting in particular were extremely difficult; not due to “typical” living-with-your-partner inconveniences like fighting over leaving the toilet seat up, putting dirty clothes on top of as opposed to in the washing basket (which, I must say, is incredibly frustrating) and feeling on top of one another, but something very different: Crohn’s disease. Daniel was diagnosed with Crohn’s disease in September 2016 – which, at the time, was one of the worst cases in the UK – and, boy, have we been on one hell of a rollercoaster ever since. Needless to say, his diagnosis has not only continued to strengthen our relationship, but drastically change our outlooks on life. As today is World IBD Day, I wanted to share my story on what it’s like to witness first-hand the impact of a chronic illness on someone’s life and the impact it can have on their partner (like me) too, but not before I give a brief overview of Crohn’s disease and its symptoms.

Daniel and me at a family wedding in 2017

For those of you who aren’t completely aware, Crohn’s disease is a long-term condition that causes inflammation of the digestive system and is one of the two main forms of Inflammatory Bowel Disease (IBD), the other being Ulcerative Colitis (ref: Crohn’s and Colitis UK). It is said to be hereditary and, while there are different forms of treatment such as drugs and surgery, there is currently no cure. As Daniel’s case is severe, he takes a multitude of medications daily as well as an injection weekly. The symptoms that Daniel experienced before his diagnosis, and still experiences regularly, include abdominal pain and (if you’re squeamish, brace yourself) diarrhoea, tiredness and fatigue and feeling generally unwell. A full list of the symptoms can also be found on the link referenced earlier.

Now, for the story. As I said, Daniel was diagnosed in September 2016. He suffered from the aforementioned symptoms and more for about nine months prior and underwent innumerable tests and scans before he was finally diagnosed via a colonoscopy, following which they explained to us that it looked like Daniel had – shockingly – had the disease for around five-to-seven years already. These months leading up to his diagnosis were some of the hardest for the both of us; it was horrible for Daniel to continue to experience pain and suffering for reasons the GP couldn’t even decipher, and equally horrible for me to watch him suffer and continuously wonder why. Daniel even turned to private care for a little while in hope that they could more accurately discover what was wrong; alas, even they couldn’t and misdiagnosed it as whooping cough. Unfortunately, it took Daniel to collapse at his desk at work based near Wimbledon and have his colleagues call an ambulance for him which took him to St. George’s Hospital in Tooting to finally figure it out. Ever since, Daniel has been under the supervision of some of the best doctors and surgeons at this hospital who have been an incredible help in making the experience smoother and easier to cope with for the both of us.

Daniel staying positive in hospital

Following his diagnosis, Daniel had to stay in hospital for a little while so that his blood and sugar levels could be monitored and he could be rehydrated after losing so much water in his body due to the diarrhoea. However, the following month – October 2016 – saw an even more unfortunate event for Daniel; whilst resting in his hospital bed surrounded by his parents, my parents and me, his bowel perforated and thus required immediate surgery. Just before which, I vividly remember a lovely stoma nurse coming to talk to Daniel and me all about having and caring for a stoma bag. Essentially, in order to give Daniel’s bowel a rest and allow him to recover from the symptoms he had been suffering, his doctors and surgeons decided that some of his large intestine would need to be removed and he would need a temporary stoma bag through an operation called a colectomy with ileostomy. This is – again, squeamish readers, prepare yourselves – a procedure whereby the intestine is brought to the surface of the stomach, and an opening is made so that digestive waste is passed through the stomach and into a bag rather than through the bottom; the opening on the stomach is called a stoma (ref: Crohn’s and Colitis UK). The period of time for which Daniel would have a stoma bag was uncertain as his doctors and surgeons would assess his progress and evaluate a time when they deemed it necessary.

The information about stoma bags was fed to us so suddenly that neither Daniel nor I were able to fully absorb it all at once. We were provided a kit with all stoma care needs including a large source of stoma bags when replacement was necessary, some curved scissors to help cut the hole in the bag for the stoma to the correct size (as stoma sizes vary) and various other supplies; a handful of leaflets and handouts all about life with a stoma bag; and a number of websites to navigate and phone numbers to call whenever we needed help. Nonetheless, almost everything we learnt about stoma bags was acquired through practise. Living with each other meant that I could help Daniel whenever he required it at home, be it to clean the stoma, change the bag or look after him when he continued to experience the usual Crohn’s disease symptoms. In fact, although the stoma was intended to help Daniel in the long run, his experience with it was still awful; he vomited every morning and night, struggled to digest a number of foods and was completely bed-bound, all whilst also experiencing the pain from the surgery on his stomach and the mental burden of it all (I can feel the water works coming on for me right about now). What’s more, when I met Daniel, he couldn’t even swallow a tablet; now, he had to start taking a surplus of drugs (the most he has been on at one time is thirty-three; now, he takes at least eight a day).

Daniel again staying positive in hospital

As the one not living with the condition nor the stoma, but living alongside the person with them, all I wanted to do for Daniel was stay positive, encourage him to keep fighting and continue to remind him that he wasn’t alone in this battle because – as cliché as it may sound – he had me by his side. Notwithstanding, this experience inevitably came with its downfalls on my part, too. The same month Daniel was diagnosed, I had just begun my second year of university. Fortunately, as I briefly mentioned in my blog about living at home for university, I had transferred to a university closer to home to continue my studies from second year not with the intention to live with Daniel (we managed the long-distance relationship quite well, actually), but because I faced my own battles with anxiety during my first year. And, even more fortunately, my new university (Roehampton) just so happened to not be far from the hospital in which Daniel would stay for months on end. So, every day after my lectures during the beginning of my second year, I would head straight to the bus stop outside of campus, jump on the 493 to St. George’s Hospital and sit beside Daniel in his hospital bed to keep him company. A lot of the time, whilst Daniel kept himself occupied by watching movies on Netflix on his phone, I had my laptop open to complete some uni work; being in each other’s presence was enough. Other times, we would merely have a chat, watch something together or, if he had family or friends visiting, we would be occupied by their company. Again, this time was certainly not easy for us, but we got through it together.

Almost exactly one year on from his diagnosis, and eleven months from his major surgery (as Daniel continued to have minor surgeries with his stoma; I gave up on keeping count of the number of endoscopies he’s had a long time ago), the time finally came for Daniel’s stoma to be reversed. Despite the horrible side-effects, his doctors and nurses internally saw a huge improvement on his bowel and intestines from the culmination of his drugs and the stoma. As it was September 2017, I had at this time just begun my final year of university and would, again, try my best to look after Daniel post-surgery alongside my studies. Not only was he bed-bound again, but he also had two large scars to recover from as well as the mental struggle to adapt to some sort of normality again; in layman’s terms, he got his bottom ~ back ~.

Daniel still staying positive in hospital

Now, Daniel is much better than he was. Of course, he still experiences flare-ups in his intestines every now and then which is normal for somebody with Crohn’s disease or Ulcerative Colitis and has had to take trips to the hospital aplenty, but together we have learnt how to manage everyday life with Crohn’s. As I mentioned earlier, his daily drug intake has reduced from a whopping thirty-three to around eight, and the continuation of taking these drugs alongside his weekly injection have greatly assisted in the management of the condition. That’s not to say that we don’t get a scare every so often, like the possibility that he will have to stay in hospital for a long period of time again or – especially in times like now with the coronavirus pandemic – he’ll fall really ill again, but if this whole experience has taught us anything, it’s to stay positive. We count ourselves so lucky every day that we live together and have each other by our sides during hard times and, whatever our future holds, I think it’s fair to say that we are both well-prepared.

Please be reminded that this is Daniel’s Crohn’s story; everybody’s IBD experience is different. Currently, it is estimated that Crohn’s disease affects about one in every 650 people in the UK and Ulcerative Colitis about one in every 420 people in the UK. When Daniel was diagnosed and I would tell people that he has Crohn’s disease, a common response was “what’s that?”. Four years on, I am pleased to report that people seem much more aware of it when I tell them as they either know or know of someone with the condition. Nevertheless, there still seems to be a lack of general awareness around IBD, and that is what today – World IBD Day – is all about. Given the above figures, it is likely that someone you know has Crohn’s or Colitis, so why not do some more research into them by heading to the Crohn’s and Colitis UK website or by following them on social media? Likewise, if you or someone you know is suffering from similar symptoms and is yet to discover what you or they might have, please ensure that you or they get checked out.

To those like Daniel with an IBD, happy World IBD Day! To my readers, thank you for reading and I hope this has assisted in the growth of awareness around IBD. Also, to the NHS, as we hear daily at present, thank you so much for the support and care you provide people like Daniel. And, of course, to my Daniel, I am so proud of you for all that you’ve achieved and all that you’ve been through. Despite all this, you have continued to work incredibly hard in your full-time role at an amazing and supportive firm called Z group, have passed a number of AAT exams and continue to conduct voluntary work for the Royal Air Force Air Cadets (RAFAC). You are an inspiration. ♡

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