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)  


11 responses to “Arse!

  1. well I *yawn* read right *yawn* to the *yyyaaawwwn* end…zzzzzzz…sorry *Elaine shakes herself awake*
    I feel sorry for you, I think it is much much worse when you feel you are letting the kids down and cant do what you want with them, Does your sister have problems. or did the faulty gene miss her? Personally if I thought the op would help I may just go for it, but then I am not living with it and cannot make the decision. IBS pain is terrible, would rather be in labour, so cant imagine it any worse that that.

  2. Oh lovely, what a horrible thing to have to deal with.

    Are you seriously contemplating surgery? Have you spoken to the consultant about it? Guess there’s no easy answers :0(


  3. I thought my invisible illness was a pain in the arse but it’s nothing compared to yours (pardon the pun!)

    I’m so sorry you’re going through this, a distant relative of mine had that very operation very suddenly recently and I know she’s finding the adjustment weird and frustrating, but, somehow has kept her sense of humour & I’ve a feeling you will too.

    Time to write a list of pros and cons I suppose? And sending many cyberhugs in the meantime xox

  4. I always read your posts – from start to finish, and I love your honesty, humour, and matter-of-factness, whether it be about a kiddies jigsaw you got to try or you arse! Thing is, I very rarely comment, and I feel bad that I don’t. I often feel I know exaqctly what you’re saying, even if applies to me in a different way. But I don’t comment because I don’t have your talent with words. It feels like what I have to say might sound glib or patronising. What I can say, though, is that I appreciate what you write. That is all.

  5. Can’t offer any help, but my friend has a bag (for different reasons) and she has very few problems. She wears tight clothes, and skinny jeans, and if you didn’t know you’d never be able to tell, in fact many people are surprised when they find out.
    It’s not ideal by any means. There are foods which cause blockages (she can’t eat mushrooms as they give her loads of bother).
    IF surgery is a route you are thinking of, get in touch with the ileostomy association. Good luck! xx

  6. Oh Kay I really do feel for you. I complain so much when I have a bad ibs attack or my anxiety creates havock with my insides but your problems are on another level completely and I think you have every right to open up and have a good long open post like this.
    I love reading what you write what ever you may be writing about! Don’t think people will skip posts because they won’t.
    I’m sending you loads of hugs and hope you can discuss some options with the right people real soon. Xxx

  7. You were wrong, there were at least 5 of us that read to the end! Wished you lived next door so I could pop round for coffee and a hug or take the kids to the park so you could have 30 minutes to yourself. You say you haven’t noticed a connection or pattern in the pain and what you eat. Have you tried keeping a pain/food diary?
    Anyways, have a huge virtual hug and I hope you feel better today than yesterday

  8. I read to the end too. You also gave me another “ah-ha” moment! I learned recently that my skin itching is because of my UC, and now I know that when I went on a walk with my DH and my hip was killing me and I didn’t know why… Well now I do.
    I’m a noob, been suffering for about a year or so & recently diagnosed so I’m still learning.

  9. Six readers-to-the-end now! Me and he-who-must-be-ignored both live with invisible illnesses too so I know how frustrating it is and how depressing the thought of those dozens of pills every week looming over you for the rest of your life is. I love your phrase “I’m not incapable, just uncomfortable” – I think I need a rubber stamp that says that!
    I’m sure you’ve tried pain clinics and probably had the same pathetic results OH had, so now it’s a toss up between pillsandsurgery. Being a total wimp about surgery, I know that my choice would be to stick to the pills while fervently hoping a new, more effective one, or even a complete cure, was just around the corner. But that’s me – your decision is for you alone.

  10. Oh dear – do keep fighting on!
    I know it’s easy for me to say, but have you tried drinking aloe vera (a special version, obviously)? I had a friend once whose UC seemed to be healed by that – but I guess it wasn’t as bad as yours seems to be…
    Hoping for some better days for you soon 🙂

  11. HI Kay,

    Obviously I was completely unaware, as we mostly are.

    I have Crohn’s disease which was only properly, officially diagnosed this year. Although it was suspected for several years. I have a rare type.

    I hear you with the joints. It drives you crazy. You still feel young and just want to get on and do things. My worst hit areas are my fingers and my left knee – though the latter may be something else as I’ve already had an op there.

    You look the same as everyone else and so people have expectations of you. You feel too embarrassed to say, “the reason I’m late picking my daughter up from nursery is because I was stuck to the loo.”
    You feel tired all the time because of not being able to absorb the goodness from you food. Your arm looks like a pincushion. You have tummy ache most of the time despite popping pills and potions.

    The immune suppressants are helping me, I think. I haven’t had any ankle pain for a while and my tummy is definitely better though not good.
    But now I have other issues all the time, like stye’s or infection then I have to race to the doctor. And I’m losing weight.

    On Tuesday I stop taking the steroids I’ve been taking for several months, I’m curious how it’ll be.

    It’s good to vent on your blog. It is a therapy. I’m sorry that you have this illness. Write to me any time. What keeps me positive is this: they’re doing so much research right now, who knows what the future holds.

    Also, I’m not sure how it is with UC but a lot of Crohnies can’t absorb vitamin C from their food. But a supplement may help, which in turn helps you to absorb iron. I tried it and I felt more energetic and fitter, but my stomach cramps got much worse.

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