Officially Back. Officially Scared. Officially Sad.


Hi all,

Got told on Tuesday that my Crohns is almost definitely officially back. The pain, the tiredness, the bathroom trips, the blood results…all adding up to some “not good news” as everyone refers to it. Your bloody right its not good news. I could write an entire essay rambling away about how unfair I find life right now, how I only got a year, how I want more time without having hospitals back in my life, how its unfair that blood tests and hospitals and medicines are a part of my daily life aged 21, how I am scared about my future health, how I don’t know how this will affect my relationship and friendships, how I am scared and so, so much more. But I won’t. Because, whats the point?

I have an emergency colonoscopy booked for tomorrow, so busy with the picolax (grim) , so hoping to at least find out whats going on in there by tomorrow. Got back a second set of blood test results from Tuesday which have come in as normal – woo – which is something at least! But I guess it could just mean that the flare that I was in has died down, but im worried- will this still show in my colonoscopy? How do I know?

In the meeting with my specialist he talked through some options for if it is back, including going back onto a steroid or using Humira or Infliximab (spelling is awful, sorry) and both of those sound scary and horrible and medical and I don’t want to have to face reality and think about them and the consequences. I want to go back to when my scar was just a reminder of those old days, when it was nothing more than a story I used to tell people who asked.  I have so many lovely, caring amazing people in my life and all around me – all of whom are already rallying around to help me shoulder the burden of this disease; but do they really know what it will be like? how can they sit and tell me it will be okay, when they have no idea, none of us do. I am scared. And that’s not a nice feeling. Its weird how you can feel so isolated surrounded by people who love you. I want someone to be able to tell me how my future will be, that this will all work out okay in the end, please?

Depressing post, sorry. Hoping your run up to Easter period is going better than mine 🙂

H xx

head up

Here we go again…


So, since my last post everything has shifted a little, with having to consider crohns back in my life again.

Am having to work very hard not to throw a massive tantrum and sulk about how unfair this turn of events is, but so far I’m trying to crack on with life. 

Had some tests done to see if it the results could be linked to a urine infection or some other illness I was fighting off, but they all came back clear and normal this morning. Normally thays something I would be happy about, but not this time because it leave just crohns. 

So tomorrow,  back for a blood test to monitor my inflammation levels, and then off to see my specialist in the eve. Just what I need. Maybe I am wallowing a little in self pity, like my housemate said it’s not lile I never thought it would be back, I’m still taking medication every day; it won’t make much difference to my everyday life. But psychologically it will and I know that’s ridiculous, but it’s true

Plus just to add ti my pile of self pity, tomorrow would have been my grandads birthday,  and I miss him, so much more than I ever thought . So I’m feeling more than a little sorry for myself.

Hope everyone else is doing better than this!

H xx

It’s back.


Sorry for lack of posting I was out and about enjoying my life, but looks like that could all be crashing and burning down again. Yay.

Got some unusual bloods back,  with inflammation markers up in the range of 145 when the normal is 0-7. That’s a ridiculous figure. The other inflammation marker was only 4 times the highest average, so that’s hardly bad at this point…not. Got a barrage of blood and urine tests ans the like coming my way to ascertain exactly what the issues are, but as my doctor said; what else can cause that level of inflammation aside From crohns,  ans that regardless of everything else it is likely that currently ny disease management may be less than optimum.  Great.

I literally can’t fo back to how ill I was before. I haven’t had long enough free. Please, please let this be different this time. Please.