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ULCERATIVE Bowel Disease

May 11, 2016

It’s been a good couple of years for me. I’ve been extremely healthy for  the most part. I’ve been able to travel, train, compete, work and learn. But as it so often does, my Ulcerative Colitis has reared its ugly head. There’s never a good time for a flare up, but starting in a period with my first national powerlifting competition, the final weeks of my University degree, and with a holiday looming; it’s not ideal. My life has thankfully changed a great deal since my last flare up, and extended hospitalisation isn’t the hopeless prospect it once was. But it is still the same old story of anxiety and misunderstandings.

Colitis and Crohn’s are invisible illnesses. Apart from the occurrences where I am rolling around in pain or unable to get off the toilet; you wouldn’t really know there was much wrong with me. I don’t sound over the phone like there’s anything wrong with me. And the real red herrings are the double standards I find myself living.

I might not be able to go to friend’s BBQ because I have two enemas to retain and the anxiety of leaving the house means I would psychosomatically need to evacuate my bowels. I might not be able to go to work because sitting upright at a desk puts me in a position that causes lots of spasm. So I say that I can’t go because I’m ill… but then will be able to do a Bench Press workout at home.

That’s the reality of Colitis. Sometimes you can be too ill to sit upright, or travel for ten minutes, but well enough to do heavy training at home.

I’m not currently in pain for twenty four hours a day. I’m not even on the toilet twenty four times a day like I used to be. It might be strange to visit a person too ill to go to Uni or work, but who can still have a laugh or a game of pool for an hour or two and appear completely fine. For many people the perception of being ill is someone lying in a bed with a fever, a weakened voice, and probably infectious and not suitable for company. This could be seen as a bonus for sufferers of Crohn’s or colitis; that we can take time off work but sometimes can still be social. But in fact this can add to the feeling of isolation.

Plenty of colitis sufferers feel like there isn’t the recognition for the genuine suffering that takes place. Believe me, there is suffering. I have written about that extensively elsewhere (www.shituation.net). But still, there is not recognition. Coming up on the 19th of May is World IBD day which is designed to raise awareness for Inflammatory Bowel Disease. Inflammatory; not irritable.

Having interviewed many sufferers of either Crohn’s or colitis, one of the worst aspects for disclosing the condition to work, or to friends is the ambiguity between the term IBD and IBS. Irritable bowel is just a tiny fraction of the effects that Inflammatory Bowel Disease can cause. But I am not blaming an ignorant public; we are all ignorant to some degree of conditions we don’t have to deal with. But during recent research I was given a suggestion that could change the perception of the disease. It could change the anticipation of stigma for sufferers who are reluctant to disclose because of the lack of understanding. It could help eliminate the feeling that Colitis sufferers need to justify their decisions. The change is as simple as a word.

In a recent parliamentary conversation the spokesperson representing Crohn’s and Colitis mistakenly referred to IBD as IBS. This is the worst thing that sufferers could hear as we try to promote awareness and understanding for a systemic, traumatic disease. But with an acronym so similar to a condition that on the surface is so similar, those trying to raise the profile are fighting a losing battle. Half the population has IBS and manages perfectly fine, so this degradation of IBD is not the message that is needed to promote the truth. IBD can cause malnutrition and drastic weight loss, severe anaemia, chronic fatigue, chronic pain. The treatment can cause muscle wasting, osteoporosis, a variety of mental disorders, liver cirrhosis; and I am barely scraping the surface. The suggestion is to change the umbrella term from IBD to UBD: Ulcerative Bowel Disease. This might sound so simplistic, and even pointless when the focus should be on managing the significant physical impairments brought on by Crohn’s and Colitis. But managing the emotional impact of this disease is every bit as important. Changing the term to UBD could improve the likelihood for disclosure, lessen the likelihood of stigma, and increase the overall level of acceptance of this disease which can make you feel entirely alien.

Having a disease that is so consuming as this one makes it part of the sufferers identity. It is something that has to factor into every decision that gets made. And when that identity is assumed by others to be less significant than the reality; it minuses everything else by extension. It is not our choice to take time off work. It is not our choice to turn down social invitations. It might appear that way when on the surface we sufferers appear healthy, or when you think that only issue is irritable bowel. Calling it Ulcerative Bowel Disease won’t change our ability to live normal lives; but it might help us feel more normal by having a term that is clearer to understand.

 

Raising awareness is among the top issues that gets faced by the Crohn’s and Colitis UK Charity. Help achieve this by checking out my book Shituation at http://www.shituation.net ; It contains every detail from my first three years living with this illness and £1 for every book sold goes straight to the Charity whose website is here: https://www.crohnsandcolitis.org.uk/

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