Sympathy, help, where to find it.

I’m angry and upset right now.

I wish everyone had to spend a week with Colitis to know what it’s like. It wouldn’t be any use, because they would soon forget. I soon forget myself in periods of remission.

I can’t start my new drugs for 3 weeks, and they may not even work. But not being able to even start is incredibly frustrating. I’ve hung on this many years, what’s the big deal? It’s hope. I didn’t have hope before now. I knew the situation. This is a new scenario thrown in the mix.

Today I had important things to do. I had to go to Tesco’s to buy packed lunch for work tomorrow, and fill the car up with petrol.

I’m suffering really badly with nausea right now. The immunosuppressants we are given are basically low-dose chemotherapy. But it’s not the same is it? Well, yes, if you take too much your hair will fall out and it will make you sick.

And I’m trying not to cry as I get my sandwiches (due to nausea) and failing a little bit. It’s pretty overwhelming, the sickness, especially after I first wake up, (they are taken last thing at night to avoid nausea as much as you can whilst asleep), but I have to do this now or Tesco’s will be closed.

I’m attempting meals left, right and centre because I get so hungry it hurts. But the sight or smell of food will often send me running to the toilet to spill my guts out (blood, liquid, mucus, all things pleasant), and nobody would feel like eating after that. Cold food is best because it doesn’t go cold, it’s already cold, so you can try again later.

And I’m still working because the government, and people who decide the benefits, and people in general don’t understand anything about your illness.

It’s pretty much a fact that most ‘shitting yourself incidents’ happen on your doorstep. The home-ing device of the bowel. Even healthy people should know what I’m on about here, I think we all have it to some extent. And the key gets stuck in the fucking lock, now is not the time for the fucking door to be awkward.

It is upsetting, embarrassing and no person in that state should be expected to work in a job where… they shit themselves.

Most of the time it is just liquid and I am well prepared down-below with maxi-multi-plus panty pads.

I doubt whether most young adults have ever shat themselves in public or had to experience that.

And you can’t say ‘I’m sorry, I’ve just shat myself.’ You just sidle away and find the nearest toilet, probably walking like a penguin and praying that it hasn’t gone through to your trousers.

And I just wish there was more support. People suffering the effects of high-dose chemotherapy or extreme diarrhoea are not expected to got to work. (Actually some of them probably are, knowing the way things can be nowadays.)

But if Colitis folks called in sick every time they were like this, which they have to sometimes, they would get sacked. And they do, in their droves. And they’re not going to sue for unfair dismissal, they just suck it up. I would. I wouldn’t fight it, stress only makes it all worse.

I wish that everyone, or at least the unsympathetic ‘go to work wearing a nappy’ ones would have to stand in a room full of people, shit themselves and see how smelly and disgusting they feel.

I have to have distraction on the toilet, my phone to play a game on. I’ll never get very far in the game, but that doesn’t matter. And usually a bowl (or sanitary bin in work) because sometimes you have to be sick whilst defecating. I’ve done it, head between my legs before now. And you get so hot and sweaty you have to strip off your top half, throw the clothes on the floor, mid-shit.

Then when it’s all over (which it probably won’t be but you’ll think it is), you get dressed, wash your hands.

Next patient please. Next customer please. Whatever your job is.

I talk about surgery, my close friend who cares about me ‘You don’t want that.’ No, of course not, but I don’t want this.

 

N.B. And then I look at a picture of a stoma and don’t know if I’d rather shit myself. Once you have one, you deal with it. But Jesus.

It’s what I would call a lose-lose situation.

Drugs. Please work.

9 thoughts on “Sympathy, help, where to find it.

  1. I’m sorry, I understand your pain a close family member had this and ended up with a stoma for a year then managed to get a reversal but I know it’s was very frustrating….Hugz

        • I have been to a couple of meetings organised by NACC, they’re not very active round here though, not sure if it was what I was after either.

          Luckily have a couple of UC buddies in Bristol (about an hour away from me) and we meet up about once a month or so.

          Always good to talk to ppl who understand. I also feel a need to talk to people who don’t yet understand and try and explain, that’s my thing. Hence my blog postings.

          Hopefully in a couple of years I’ll have been taken apart, joined back together and this will all be a distant memory.

  2. Ah Rebecca, I think I drink so much I am fucking something up inside, but as bad as it can be, I still think of you. Damn. I wish I could take it from you. I would take it, really. I am sorry, so sorry you live this. It is just crap the way things happen. Sorry I am really, really drunk. Anyway, I am sorry. Though I just said that, Take care, damn it.

  3. Most people I know (patients, who I know in a nurse-patient capacity and therefore openly discuss bowels with them regularly) who’ve had stomas due to chronic conditions like yours say that it was the best thing they ever did. But it changes your body image, and it’s difficult to come to terms with, so I see why you’d fight it. (I was once on tablets that made me have severe diarrhoea and I shat myself without warning in the queue in Tesco- and would call it the single most humiliating experience of my life… so I know. It’s usually my bladder on the doorstep.) I think I’m trying to say that you’re not alone, though my relatively mild (and self-diagnosed) IBS is nothing in comparison.

    It’s a shit situation (pardon the pun) and I really hope the drugs help. xx

    • Thanks Hayley. I get that, I mean it’s fairly safe to say it’s be a good decision health-wise. But I just can’t see me coping with the whole body image thing, at all. I’m fairly certain I would hate it. But it might not have to be forever, which is what I think I’d have to tell myself to get through it at all… if it comes to it, which I still am hoping it won’t. x

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