Guest Post: Living with Crohn’s Disease

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Starting a new monthly feature of guest posts, I’m handing this post over to one of my favourite humans, Megan. You can follow Megan on Instagram @megans_healthjourney.

I’m not exactly sure where to start this but I guess I should start by introducing myself. I am Megan, a girl in her twenties, who has more pyjamas and dressing gowns than clothes, as well as a slightly unhealthy addiction to handbags. Which I guess could (possibly) be considered an economical purchase as a handbag will always fit me regardless of whether I’m in a flare or on the dreaded steroids. Well at least that’s how I justify the occasional one when I’m going through really rough patches health wise. Something I also collect, without any choice in the matter I may add, is chronic illnesses, because I mean why have just the one when you can have several? Hey, life would be too simple! For this blog post, however I am only going to focus on one of those illnesses and that illness is Crohn’s Disease.

My official diagnose of Crohn’s disease was on September 18th 2014, a day that unfortunately I will never forget. But whilst I left that consultation room speechless and in a daze, it finally gave me answers I had been looking for to explain how I was feeling. I had been getting symptoms for more than a year or two before hand with fevers, severe vitamin deficiencies, frequent toilet use, overwhelming fatigue etc but things got much worse in December 2013 leading to various hospital admissions to bring in the new year in 2014. I saw various doctors during my early admissions, but they couldn’t figure out what was the cause of my symptoms and I was left being promised gastroenterology input and medical investigations, but nothing materialised. In fact the referral didn’t even appear to have been made.  At the same time as the roller-coaster with my health, I was in the final year of my psychology degree, which in itself was a very stressful period and I ended missing some of my final year exams as I was hooked up to drips and IV antibiotics. I had barely been making it to lectures even though I was only due in twice a week, but the more people told me to postpone my course, the more I wanted to defy them and prove that I could do it and that my body no matter how hard it may try- would not beat me.

It got to a point in May that year, however, when I was verging on a breakdown and I could barely move from my bed or the couch and had a fair bit of lost weight on top of feeling so weak. I truly didn’t think I could go on much longer. I phoned up the hospital and said to them that I physically couldn’t wait any longer, and if I didn’t see a doctor within the next few days, and doctor was someone who would actually listen and follow through on their actions for once, then I felt I truly might die. I had no fight left so this felt like my last option. Fortunately, the week after, 6 months from the initial admission, I met my gastroenterologist and I felt for the first time maybe I was finally on the road to some answers. After various invasive tests, including endoscopy, capsule endoscopy and colonoscopy, she told me I had Crohn’s disease- a type of Inflammatory Bowel Disease. Although I knew in myself there was something wrong I couldn’t and still can’t quite believe I finally had an answer.

So, what is Crohn’s disease? It is a long -term condition that causes inflammation anywhere in the digestive system from the mouth to the back passage. It is so much more than a ‘toilet issue’, although that is a big part of the condition: sufferers can have anaemia, joint problems, fevers, a lowered immune system, depression as well as lots of other symptoms. I am grateful to have my diagnosis in the sense that I know what is wrong however knowing hasn’t meant that my journey is over- rather it has just been the beginning. I have had countless flare ups, some requiring hospital admission, as well as sepsis which is likely to be a result of the immunosuppressants I am on to try and control my Crohn’s disease.

Ultimately, I have and still do often feel very alone and ‘labelled’ with my conditions and though it’s easier to say, ‘you’re fine’ then say how you’re truly feeling? How can you really explain it to someone when on the surface you do look fine. But becoming chronically ill has also allowed me to make lifelong friends and for that I am truly grateful as the obstacles would be even harder to try and face alone. Finding out you have any condition at all gives you a new dimension to your identity, it’s made me change my life completely. I’ve learnt who and what really matters and just how precious health is.  If I could end with one ‘spoonie tip’ it would be to always listen to your body and fight to be heard as no one knows your body better than you. So, if you instinctively feel something is not right and you are met with resistance by the professionals you initially meet, it doesn’t mean your problems don’t exist.

Don’t give up fighting because you’re worth it and there will be other professionals who are willing listen and help.

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If you would like more information about Crohn’s Disease or IBD you click here and there’s lots more information over on Crohn’s and Colitis UK. Hannah Witton  vlogs about life with IBD, having recently had major surgery, resulting in a stoma.

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