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Still hating the stoma, part 2

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Posted 6/20/2013 12:50 PM (GMT 0)
While I don't personally have a stoma (yet), I can't comment on like/dislike of that actual mechanism... true, it's somewhat barbaric considering how far modern medicine has come. But, it's not likely to advance farther in that regard- there's a fairly easy surgical cure for IBD, it works fine, the colon is not an essential organ, there's few complications, etc. So I think re. surgery for IBD, stomas are pretty much it. Re. your ongoing struggles... after reading your posts for some time now, I honestly feel that you are hating everything, not the stoma.. that's just a convenient thing to blame. I have no idea what the deal is with your work/lack of work situation, your living situation (alone, with family, etc), your love life, your social life.... but you just seem extremely unhappy with basically every aspect of your life, including yourself. I hope you can find some mental peace & clarity- shakehead
Posted 6/20/2013 2:26 PM (GMT 0)
Ncot sorry you are in such a dark place I know only to well how this feels sad sometimes life deals us a crappy hand but we just have to accept and try to make the most of each day no good saying why me or I hate this, doesn't do us any good just adds to the despair maybe try and do something each day to lighten your mood even if you feel tired just fifteen minutes doing something you used to enjoy may make the tiredness lift a little ,I love music of all eras brightens even my darkest mood .
Lucky
Posted 6/20/2013 5:09 PM (GMT 0)
For god's sake, why do people feel the need to tell me they're not going to read my posts? Why can't they just not read my posts? Why do they have to tell me, in great detail, that they're not going to read my posts? I'm not interested. If you want to ignore me or whatever, fine, but just stop playing the moral card with me.

I honestly don't care if your friend with brain cancer has a brighter outlook than me. I really don't.

Yes, I am in a dark place. And I wished I'd died, okay? Do you know what that feels like, when your life sucks so hard you wish you were dead rather than having to face the interminal boredom and displeasure of going through it each and every day. Other people having cancer, or whatever, doesn't mean my life is good or that I enjoy being alive. Because I don't.

I have tried. More than any of you will know, but I am tired of trying when everything fails and I mean everything. I have nothing left to live for. I wish, heart and soul, I had died during the operation and was no longer alive.
Posted 6/20/2013 5:24 PM (GMT 0)
obviously you've got this forum to live for.... rolleyes . No one is playing the moral card with you, but let's face it- we DO get it. You're miserable! Your life sucks! You hate your stoma! It's old... no wonder you have no life, with that attitude. I think people are just trying to say "Ok, let's move on..." in a nice way. Just... you have to pick yourself up. Life is what it is, you know?
Posted 6/20/2013 5:40 PM (GMT 0)
I'll jump in- I have found myself lightening up on NCoT- after all, it is true, none if us **has** to read her posts- I know some read them with a "here we go again" sigh while hoping to help her with some tough love. But taking her at her word, she doesn't want tough love, or advice in any form, rather, she just wants to vent and know that others can read and acknowledge her venting. If she gets so e pleasure from this in an unhappy life, let her have the pleasure, what the heck. She actually has some decent writing ability and a good sense of black humor. So I have come to conclude that if you want to write in her threads, banter black humor with her, dont give her tough love advice. Maybe this is enabling self destructive behaviour, I dunno, but she is not a child and we can take her at her word that she doesn't want advice.

The one thing I would say to you, NCOT, is that it's all well and good to say that anyone can ignore your threads, but remember that newbies (or your buddy :) and fellow hater of critiques of negativity, somedude) will zoom right in on them and take things as representative of, say, life with a stoma. But it's not against forum rules to repeatedly vent the same theme, so I leave it to your judgement. I am decidedly now in the camp that enjoys a bitof quirky fascination with your threads, while wanting badly for you to feel better about your life, and to get improvement on the various technical/medical snags that certainly dont help.

oh, NCoT- you are reading enjoying World War Z, right? (Loved that silly book). That is a pleasure that is here with you on this earth that you wouldn't have if you were dead, or turned into a zombie for that matter. Speaking if which, I want to see the movie badly but I so like the Walking Dead style zombie that I think I am going to be turned off by the faster-than-Usain-Bolt speed demon zombies that, in the trailers I have seen, seem to resemble army ants.
Posted 6/20/2013 6:59 PM (GMT 0)
I mentioned it before, but what I like about NCOT, she tells it how she feels. I mean, faaack, if you don't like having a stoma, you don't like having a stoma. Just because the stoma made someone healthier or whatever, you still have the right to not like it for other reasons.

And if there is at least one like her, there are many. Plus, I guess she feels rubbish every day (from what she said), so you can't expect her to be happy.

Somewhat unrelated, but I'm a fan of you also. lol

Posted 6/20/2013 8:05 PM (GMT 0)

Somedude said...
I mentioned it before, but what I like about NCOT, she tells it how she feels.

It seems like it always comes down to this... you should like EVERYONE here for this same reason because no one is putting on an act. What's the point of putting on an act for a message board with a bunch of strangers? Just because people are happy doesn't mean they're faking it!

I really like NCoT's "britishisms" myself... this coffee is rubbish. I wish I could use them in real life without sounding like a pretentious wank wink
Posted 6/20/2013 8:11 PM (GMT 0)
NCOT you need a happy pill and fast. I don't remember if you said you are taking anti depressants. Hopefully have been to see a doctor about getting on something to hopefully get you over this hump.

Pluot- so true! I tell it like it is too...I'm friggin ecstatic about my j pouch and I will shout it from a roof top. After the living hell I went thru with UC, it's all good now.
Posted 6/20/2013 9:19 PM (GMT 0)
Oooh NCOT,
I came lurking here only to see how you are, and I'm sorry to hear that you wish you died....I really like you and it makes me sad. Your venting seems fine with me obviously, or I wouldn't be on the ostomy board in the first place. I know you decreased your antidepressant due to side effects at first, but can you titrate it back up now? I hope you get in with the NHS psychologist soon!!!

I'm leaving tomorrow to go to my nephew's wedding, so I might be off the boards for a few days. I'm kind of dreading going. I'm still really tired and it's a six hour drive, family dynamics issues, etc. Hopefully, it will be more fun than I'm anticipating. Hang in there....I don't have advice to add today...too tired to think of anything very inspirational, but I'll be thinking of you!
Posted 6/20/2013 9:56 PM (GMT 0)
@Eva Lou - Yes. I've got this forum to live for, that's true. Lucky forum :p

@Pro - Thanks, bro (that never gets old >_>) Yes, you've got it. The trouble with being given advice is that I'm not likely to act upon it and that seems to bug people, so I would just rather they didn't do it. It's not because I think the advice is crap, or whatever, but I just don't have the energy to act upon it. I suppose I could just keep quiet (naaah... <_<), but this is really the only place I can express myself. My family don't care. My parents are bored with it all. I don't have anybody else within my family that I can talk to or go and stay with. I'm finding it claustrophobic as h*ll at home.

Sorry, I'm kind of digressing. But yeah, Eva was right, I have issues way beyond the stoma. I don't like the stoma, but in a sense that's the least of my worries. I had hoped the operation would make me feel miles better - physically, I mean. That it hasn't has just been a blow I can't really bear. I'd rather feel crap with Crohn's and at least I know why I feel crap. These days I feel crap and I don't know why.

Re newbies considering surgery. Hopefully the 20 or so positive responses they get outweigh my gloom'n'doom >_>. That said, I don't wanna scare anyone off surgery who really needs it. The odds are stacked very high in their favour that they'll be glad they had surgery. That's all I can say.

@Pluot - One advantage is being able to mildly swear on US message boards. Actually that's bollocks :p

@ByeByeUC - Believe me, I've tried every 'happy' pill going. I had a major intolerance issues with the SSRIs. Other types - tricyclics, SNRIs - have helped at first but seem to quite quickly wear off. (Incidentally, 'happy' pills is a real misnomer. SSRIs absolutely do not make you happy in the way that certain illegal drugs do (no I haven't tried them, but I've read about them). If anything, they have a rather numbing effect, eg you care less about the things which really bothered you before. But they don't make you go around with a happy grin on your face, bounding about with joy. If only.)

Anyway, I'm on venlafaxine (generic Effexor) at the moment. Again, it did help for a little while but now its effect has worn off. However, I'm waiting to see a psychologist on the NHS.

Knackered now... :-/ Oops, I forgot to confirm to Pro that I am, indeed, reading WWZ. I couldn't agree more about preferring the slow Walking Dead zombies. The speedy ones just aren't right. Tbh, some days I really do feel like I'm a zombie, I'm that braindead *arms outstretched* Rrrrrrrrruuuuuuurrrrggh :p
Posted 6/20/2013 10:01 PM (GMT 0)
@gumby - Hey, I just saw your post. Thanks :p I don't really want to die, or, rather, I don't want to feel this way! I want to feel life is worth living for! :-/ Anyway, I certainly hope the NHS psychologist gets in touch soon as well!

I feel for you, having to go to a family wedding for a few days. Sometimes the dreading is worse than the actual event, but it still doesn't stop me from dreading :-/ I just hope once you're there you do manage to have a nice time. But if you get absolutely knackered, make your excuses and go and lie down and rest for a while. I do think these large family dos can be very draining: well, at least mine are.

Take care! :p
Posted 6/20/2013 11:29 PM (GMT 0)
Thanks NCOT...hang in there and do something fun for yourself. I'll check back in after the week-end. I'm not bringing my computer as I think I could use a break from it:) Take care.
Posted 6/21/2013 12:42 AM (GMT 0)
Good idea not taking the computer. You may even manage to stay away from the internet and HW for longer than 2 days >_>.

Anyway, bye for now :p
Posted 6/21/2013 6:32 PM (GMT 0)
Pluot- hear hear ref. resenting the implication that those who post positively about their experience are more phony or less real than a negative post... As if we'd have nothing better to do than fake it? And ditto hear hear for loving NCoT's plastering britishisms' on the forum- love em too! "Rubbish" has always been a fav of mine. (PS Pluot we messed up- breaking news from petah on UC forum- UC is gonna be cured in 3 years- doh! L M A O)

@NCoT- hey, the WWZ movie might just be good after all. Good review (spoiler less IMO) from New Yorker magazine here:

www.newyorker.com/arts/critics/cinema/2013/07/01/130701crci_cinema_denby

Post Edited (Probiotic) : 6/21/2013 3:05:06 PM (GMT-6)

Posted 6/21/2013 11:50 PM (GMT 0)
Yeah, I know. I'm the freak, right, for not loving my stoma?

I've said it before and I'll no doubt say it doubt again:

If I had a choice, I would rather live with Crohn's than a permanent stoma. The stoma sucks worse than diarrhoea. I would rather live with diarrhoea than a stoma any day of the week, but I did not have this option because my colon got too buggered. Incidentally, on Reddit there was a IAMA ('I Am A...') from a 17-year-old lad who'd been faecally incontinent all his life due to spinal cord damage. He wore diapers. When somebody asked if he had considered having a bag, he said, no, he wasn't interested in a radical operation to rearrange his intestines, or words to that effect.

Now when somebody would rather wear adult diapers than poo into a bag, you know the bag is an unappealing option. That's how most "normal" people regard the bag - as something to be avoided at all costs. And there are some pretty goshdarn valid reasons for that, imo.

There you go. More negativity for somebody else to make a thread about complaining about the 'negativity' on this board. I'm sorry, but I'm not going to censor how I feel. Everybody else proclaims how much they love their stoma; can't I be the one person not to?

Pro - The movie hasn't had good reviews in the UK. I would go and see it if there's an opportunity but I'm not that motivated to, tbh.

Post Edited (NiceCupOfTea) : 6/21/2013 5:56:44 PM (GMT-6)

Posted 6/22/2013 12:42 AM (GMT 0)
Nobody is asking you to censor how YOU feel, but to say that most "normal" people regard that bag as an unappealing option, or worse than wearing adult diapers....you are projecting YOUR feelings onto others and insulting the MANY of us "normal" folks who do NOT find the stoma to be the worst possible option.

I had to wear adult diapers ALL the time during the last few months of my illness...I would NOT choose that over a stoma. I had to go to the bathroom over 20 times a day for months, with extreme pain, bleeding, diarrhea, nausea, etc... I would NOT choose that over a stoma. I could not eat, could not sleep, could not function....I lost A LOT of weight and my body was shutting down. I would NOT choose that over a stoma. And I certainly don't think I am not "normal" for feeling this way.

I don't disregard your feelings, don't doubt that YOU don't like having a stoma and would never tell you not to be negative. On the same token, don't suggest that I am not "normal" for thinking that stoma is NOT the worst option for me.
Posted 6/22/2013 12:55 AM (GMT 0)
By "normal" folks I meant folks without UC or Crohn's, 'cos severe and prolonged illness does tend to change your perception of what's tolerable.

But if you can find me a healthy person who wouldn't hate the prospect of having a bag, I would be surprised.

Personally, I was never enthusiastic about having a bag even when desperately ill with Crohn's. And now I have a bag I know why. I would give a lot to be able to poo the 'normal' way again. Yeah, I'd even take back the Crohn's; I really never minded having diarrhoea. I only minded it when passing a BM started to become excruciatingly painful. But painless diarrhoea is a cinch. Easily liveable with. That's just my opinion, of course. Heck, even the painful diarrhoea I could probably learn to manage. Sitz baths and all that.

*reminisces* Ah, the nostalgia about the old-fashioned way of going to the toilet.
Posted 6/22/2013 2:13 AM (GMT 0)
Absolutely most normies would freak at the thought of wearing a pouch (or bag, in more pejorative lingo). Then again, I could give two hoots what normies think about the issue, since they are *completely* ignorant both if what life with IBD is like, and of what life with a pouch is like. I resisted surgery for years and although I was never such a moron to have the "rather be dead than wear a bag" mentality that I have seen displayed by a few on the UC forum, I did consider the "bag" unthinkable amongst surgery options at first. i say at first because that was only until I investigated the various pros and cons and actually decided, one step into 3 step jouuch surgery, that it was better suited for my own personal preferences in many respects. The reality is that for most who wear a pouch, after they get used to it, it is a minor inconvnenience vs a normie and a vast improvement over IBD, hands down.
Posted 6/22/2013 3:24 AM (GMT 0)
But I want to be one of the "normal" people. I'm sick and tired of Crohn's and I'm sick and tired of the bag. (I'm also sick and tired of insomnia. It really is as though some outside force just has it in for me and is determined to make me suffer every minute of this wretched life for as long as possible. If I could have a superpower, it would be able to fall asleep within 5 seconds every time I wanted to go to sleep.)

I can't really put it any more succinctly than that. I'm tired, oh so very tired of absolutely everything under the sun.
Posted 6/22/2013 3:40 AM (GMT 0)
I would love that superpower!
Posted 6/22/2013 4:00 AM (GMT 0)
Dear god, so would I. I think I would be so overcome with gratitude I might even be happy - well, let's not exaggerate! :p

Anyhow, it's almost 5am and I'm gonna give sleep another go. Please, please, nameless being, just let me fall asleep quickly and peacefully, without my skin itching or my brain whirling around with pointless thoughts...
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