Well, I am sad to start off by saying that a friend of mine, who has had ongoing health problems, is one step closer to a diagnosis. None of the options are good – and one just happens to be Crohn’s Disease. Some good comes out of knowing what you have – but the fact there is a problem is certainly nothing to be celebrated.
Aside from that, I have been spending my down time this week reading more studies relating to Crohn’s and UC… the focus this week seems to be the connection between chronic illness and mental illness.
No matter how prepared you are, hearing the news that you are chronically ill is still a shock. Particularly the implications of the diagnosis. That was the part that did my head in. I bounced into my diagnosis meeting already having an unconfirmed one given to me while I was on the table. Crohn’s – how bad can it be right? Steroids, Immunosuppressants, surgery, diagnostics, blood tests and a whole lot of other unpleasant stuff. You can’t prepare for that. I thought I had accepted my condition before hearing that… I hadn’t even started.
I think one of the most frightening things is other peoples reactions to it. It’s the consensus because it wont kill you outright, that IBD is not serious. That is not true. People who don’t have the disease just change the subject or ignore what you are telling them. It is thought that people react this way because they can’t conceive what kind of pain is involved with IBD. Even when you put it in prospective by telling people you reach a 9 on the 10 point pain scale (10 being pass out from agonising pain), they just stare at you blankly. I didn’t realise until I read it but – people can’t empathise with you unless they have been through something similar. Until they have been through a similar amount of pain. It does make sense when you think about it.
Another frightening thing I read was the incidence of eating disorder connected with IBD. Sufferers literally become afraid to eat. This week this particular correlation has made a lot of sense to me. In the past once my flare-up was over (the painful, nasty part) it was over. My flare lasted Sunday, Monday and Tuesday this time but the rest of the week I have had inconvenient, embarrassing and violent diarrhoea to go with that. Every time I eat. By yesterday – I was apprehensive about putting any food substance in my mouth. That is not like me – I love to eat. This week I have seen first hand how closely related eating disorder and bowel disease is. Don’t get me wrong – no matter how much pain I am in, I wont stop eating. But I can see how and why it happens in such prevalence in conjunction with Inflammatory Bowel Disease.
So, this last flare-up has been costly to me. I have lost 3kgs just from the initial attack – I won’t know how much in total I have lost until the disease goes dormant again. It could take weeks and my weight loss could total more than 6kgs. A lot of people would be saying that’s nothing to complain about – but the weight seesaw, it’s not a nice ride to be on.
I am still confident that I will go back into remission – but this last flare-up has taken a lot out of me.