Other people. Vent.

So I know this may sound silly. I'm currently lucky enough to be in remission after having my bag reversed back in August (but my bowels aren't back to 'normal' whatsoever). In September I started my Masters at a new uni and met some really nice people and thought I should be open about it. It is after all the main thing that's been happening in my life for 3 years.

Anyway, I was having a chat with one of my girlfriends about how it all began, how I was so relieved to be on steriods at this point because I had been so so unwell and couldn't eat, vomiting every day and horrific stomach issues, and actually at that point relieved I had been diagnosed with something - hardi ha, if only I had known what the next 3 years would bring. I knew she had, had blood in her stool a while back and they thought it was Crohn's, however, her reaction was; I can't believe you took the steriods! I mean, they gave them to me but I didn't want to take them in case they made me fat, didn't they make you fat?

I know it sounds stupid but it did make me cross. This is a girl who was able to say; no I won't take them, because they mgiht make me fat - yet, I was so so relieved to have something that might make it all better, that might make me able to eat again or something, that I didn't think twice about taking them. I didn't care if they did make me fat. I was that ill I would have happily taken anything if it made me feel better.. Am I being silly? I don't know why it bothered me so much...

And then I was later having a discussion with her and another girl, about having the bag, and I jokingly showed them a picture of it. I know it sounds stupid, but their innocence surrounding it all hit home, the fact they didn't have a clue. I'm 23. I shouldn't have to know about bags and all that shiz. It made me angry and sad that I did know, that this has been life and that I am dreading March when all my tests and stuff start up again.

I guess in a way neither of them will ever really have a clue, and I hope to god that they don't. It was a lesson in the fact that I'm not as 'over it' as I thought I was, because it still makes me angry that people don't have a clue just how ill actually is ill. Is it normal to feel this way, or is it just me being stupid? Maybe I was just angry with myself?

Sometimes ignorance is bliss,I knew zero about crohns before it kicked off with me and really had never heard of it and fortunately most people never will.its frustrating but understandable.i knew nothing about Alzheimer's until my sister and I had to look after my mum for several years and most of joe public don,t have a clue about these long term conditions because they,ve been lucky.sometimes though we,re only human in low times the frustration boils up, it occasionally drives me nuts as well.it makes me angry that I get angry because I really wouldn't,t want anyone to experience any of these conditions.sometimes it's rotten being a grown up.good luck

And yes your normal to be angry at being angry.don,t you love being a grown up?

Some people really care about their weight. It sounds so superficial, but for a lot of people the idea of being fat is a nightmare and they'd rather be sick. (I always wonder about this when I hear of people having surgery for weight loss - you put yourself through surgery rather than eat less?!)

I understand how you're feeling. People talk about me having a permanent stoma at such a young age as if it's something they pity me for, as if it's this terrible thing I should feel humiliated about. I love my stoma, my life is much better with the stoma. People just have no concept of what my life was like before the stoma - they think they understand what it's like to have diarrhoea or constipation, when they have no idea how bad these things can get when you are really sick, and permanently sick. All they see is that I've got a bag attached to me which spoils my looks. As if no longer being able to wear a bikini is something important enough to care about.

Totally agree with you gracifer, having a bag so young, err hold on I'm 40 but still feel 25. Does that count lol is something none of us should ever have to learn about. Sometimes I'm angry with myself for being blessed with this godforsaken disease and sometimes I'm angry with the docs who never picked it up for so many years,allowing me to get so ill. People make me angry who don't understand how life changing this becomes and how we live on a knife edge of feeling average or dam right poorly. Don't tell me how your sore throat has ruined your week pal, or how last nights ruby has given you indigestion. At times I would have sacrificed limbs, well maybe a finger to get rid of the way I felt.
Weight gain, weight loss, it all has the same mentally, as a bloke when I used to lose a stone in three weeks for no reason, it near on broke my heart. One thing for sure it's a struggle, havin my bag has saved me a lot of discomfort, it's caused me a fair few tears and who knows how it's gonna make me feel in the future. I have a million unanswered questions that I feel no doctor, friend or book can answer. It's a path we are taking and learning the whole way. Without a doubt tho, speaking with like minded people in a similar situation makes it a bustin lot easier!!! Thank you all

gracifer said:

I knew she had, had blood in her stool a while back and they thought it was Crohn's, however, her reaction was; I can't believe you took the steriods! I mean, they gave them to me but I didn't want to take them in case they made me fat, didn't they make you fat?

I know it sounds stupid but it did make me cross. This is a girl who was able to say; no I won't take them, because they mgiht make me fat - yet, I was so so relieved to have something that might make it all better, that might make me able to eat again or something, that I didn't think twice about taking them. I didn't care if they did make me fat. I was that ill I would have happily taken anything if it made me feel better.. Am I being silly? I don't know why it bothered me so much...

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I don't think you're being silly and different things bother different people. I don't think that some people really stop and think about how frustrating their comments might be to others. I was in tears the other day about something someone said to me but when I stopped to think about it, I realised that they probably didn't realise how frustrated I would be by that comment.

I am currently taking steroids for a flare up of Crohn's and I really am bothered by the fact that they're making me fat. I have hardly any clothes that fit me properly and am always getting comments about how 'well' I look despite the fact that the steriods aren't actually working all that well and I'm just as sick as I was this time last year.

I was meaning to say thanks to everyone for replying yesterday, just, as I was going to reply, our electricity went haha.
Anyway, it means so much that I'm not this crazy person who is getting frustrated over nothing, because sometimes it feels like that. But then I realise that my 'new friends' were never there when I was at my ill-est, have probably never experienced it and when they see me now I seem alright, so how do they know what is the right or wrong thing to say, but then I guess if you've never been ill how do you relate to something when you don't know about it? So you probably do make a fair point Axelfl

I think what made me feel really frustrated was that I didn't give one hoot about whether I gained weight or I didn't, but then maybe that's me. I just couldn't understand how if you were as unwell as I was, whether gaining weight was a bad thing anyway.. Unxmas I totally understand. When I was in hospital I was put on the gastro ward, and there were 'big' people coming in for their gastro band ops etc, and I would watch them as they took only a miniscule bit of water etc, and just thought, surely, it would have been better to have lost weight then to put your body through a needless operation. But then what do I know?
Towards the end of having a stoma, I really appreciated it. I still do. If I hadn't had had it, I wouldn't have got better. My life was a mess without it, but I guess people who don't know anything about it, how I have been to hell really know what it is like to be grateful to something thats like that..Again you're right grt. No-one should know about it haha! and yes, 40 does count as young!