I’m still here hanging around like a bad smell! For those of you who are Twitter addicts you might have noticed I’ve been a little absent recently, only a couple of days I know, but considering how much time I usually spend online it’s a noticeable change of behaviour for me. Listening to someone winge is never fun and if I can’t say anything positive then it’s best I say nothing at all. So I’ve saved it for here instead. This is my personal diary as well as my official ‘blog’ and I suppose if I record this now, I’m hoping I’ll look back on it later and think ‘there, I got over that and everything’s better now.’ I hope.
I don’t owe anyone an explanation, and I suppose most people won’t be interested really, but I’ve always felt blogging is therapy as well as fun, so I’m venting just a little today. Feel free to skip to a more positive post I’ll no doubt post later in the week.
Had a lovely walk in the sunshine today, along the canal bank with the kids running around whacking each other with massive fronds of Rosebay Willowherb. Sis and her two kids were fabulous company and we chatted about everything and anything and put the world to rights a little.
It was a reasonable sized walk and by the half way point one of my hips was hurting a little which made me limp slightly. My Ulcerative Colitis means I get arthritis pains as well as tummy pains unfortunately you see. By the time we were within half an hour of getting back to the car both my hips were killing me and when Sausage started badgering me to run around I realised I didn’t want to chase him because it hurt too much.
I love walking and I love the outdoors, fresh air is something I crave and open skies are my solace when all else fails. I can’t believe this stupid condition is even affecting my ability to walk. I had a flare up like this before I was diagnosed and I can remember my doctor basically implying that it was all in my head, when I insisted it was all in my hips and my joints. Idiot. At least now I know what’s causing this, but it doesn’t make it any easier to deal with. I don’t drive, I walk everywhere, I have two active children, I just don’t want to have to deal with this.
I’m on a fairly high dose of steroids at the moment and have been on them for approximately half of this last year. Every time I stop taking them I start bleeding horribly. Recently I reduced my dose and started with the awful bleeding etc so couldn’t get off the steroids at all and had to go back to a high dose. So I suppose I’m officially steroid dependent. I’m also taking an immuno-suppressant drug which doesn’t seem to be working (despite the dose being upped already) so I need another colonsocopy and then most likely they’ll up the dose yet again. So I have the double whammy of another tube up my arse episode to look forward to, even more meds and if I can’t get off these steroids my weight gain will continue (half a stone in the last two months) and I can look forward to a lovely MoonFace. Pretty, on a moon – not on me.
I’ve even looked into surgery recently. I’m on 140 tablets a week ranging from anti-inflammatories, enemas, immuno-suppressants, anti-depressants, calcium supplements, iron supplements (I’m anaemic due to blood loss and not being able to digest my food properly), steroids and I’m sick of living like this. I feel constantly tired and my joints ache when I’m flaring. I’m also scared shitless of what’s ahead. I have the option of a higher dose of immuno- suppressants, and then a couple of other drugs to try – if the local NHS or whatever will fund the last one which is debatable. I can’t stay on steroids and I can’t continue bleeding like I have been. I feel very much like if having my colon out is at the end of the road, then I’d rather face it sooner than later, because the thought of all that hell in the meantime is quietly terrifying.
Call me a wimp and a pessimist, but I just feel like the next few years are going to be a constant round of visits to GP’s, consultants, the hospital, the loo and I don’t want this. This is why I’ve been looking into surgery which basically means the old ‘crapping-in-a-bag’ scenario, putting it very bluntly. But if that meant I’d be well again, then why the hell not. The thing is, from what I’ve read, it’s major surgery and all hell can break loose with that too – so I guess I’ll just have to continue coping with my shitty colon. So that makes me sad. I’m not naturally an aggressive person, but it makes me want to punch pillows and smash plates – neither of which I will do because it’s all rather pointless (and expensive, I love my Denby plates). There is no cowards way out of this. Bugger.
Tons of people deal with terrible things on a day to day basis and I’m under no illusion as to how minor this is compared to some. But it still drives me mad, especially when I literally can’t run after my 4 year old on a sunny Wednesday afternoon and play jumping on shadows because my fekking legs hurt due to some stupid misbehaving inflamed tummy. Please note, if either of my kids or nephews had fallen in the canal, I’d happily (well, not that happily maybe) have run and jumped in after them, hurty hips or no hurty hips. I’m not incapable, just uncomfortable.
So that’s why I’m rather quiet. I’m taking stock of where I’m up to and evaluating what’s important at the moment. I’ll be fine in a week I reckon, by that time I’ll have gathered together a bit more ‘oomph!’ and will be back on form. Promise.
Apart from anything else I’m just writing about this as part of my telling people about Ulcerative Colitis mission – not that anyone will have read past the first paragraph after my introduction, lol! If you met me on the street you would never know anything was the matter with me you know, it’s a completely invisible disease. And it’s not Irritable Bowel Syndrome and just a case of watching what I eat and farting too much, which is what so many people seem to think this disease is. Irritable Bowel Disease, Ulcerative Colitis, is your own immune system attacking itself so badly that it causes ulcers and wounds on your insides that often refuse to heal causing cramps that can rival labour pains, terrible blood loss , loss of bowel control in some cases and countless trips to the loo (when I was admitted to hospital last time I was literally crapping mostly pure blood ten times a day) and had to have intravenous steroids to stop my bowel bursting in a worse case scenario. It also causes inflammation in your joints such as arthritis.
I can’t just stop eating spicy food or fibre and everything will be fine because food isn’t the cause of this, although it can aggravate it – unfortunately I have no idea if anything I eat causes a flare because I’ve not spotted a pattern as yet. Stress can aggravate it too, although with a busy family life and a chaotic lifestyle there’s not much I can do to control that. In many ways it’s just a case of my immune system just going bonkers, it’s not something I’m doing that is causing this, it’s in my genetics or something. It’s a complete pain in the arse, but its my arse and my arse alone – so no-one else can deal with this apart from me, much as I wish I could run away from my own arse and leave someone else to cope with it. Not gonna happen.
‘An Arse! An Arse! My kingdom for a New Arse!’ (made up Shakespeare quote, Richard III)