Photo time... >.>

You had toxic megacolon in 2011 and when I said I didn't remember you saying anything about it, I was referring to right before your surgery. Your surgery was elective this year, right? I also had toxic mega colon several times which is why I am here. I know one day I could get very sick again and wake up with a stoma. I am here for information and to hear the good and bad but after listening to you repeated complaints about things that sound more like personal issues, you are wore me flat out .

That of which brings me to this question...what is it you are looking for on this forum?
Many people here have listened and tried to give you advice but you continue to turn this forum upside down with the "whinging". I don't understand what you are looking for. No one here on this forum made the decision to give you a stoma. You decided that all by yourself so please stop taking it out on everyone here.

I hope you can work through this trying time you are going through. I hate to see such a bright person waste a second chance at life.

p.s. Thanks for posting your picture. Now we have a face to put with the "whinging".

Yeah, the toxic megacolon occurred in late 2011. That's when I got a 40.5C temperature and had a 350 CRP as well - a doc told me my inflammation was sky-high. I dunno if I had it since, 'cos nobody ever told me, but I was certainly hospitalised a few more times between 2011 and 2013. Personally, looking back, that toxic megacolon episode signalled a new turn for the worse and I think that's the point my colon became unsaveable. Only steroids enabled me to keep going for as long as I did - without steroids I simply flared up and ended up back in the hospital again, only to be put on more steroids. The more steroids I took, the more dependent I became on them, until by the end I was staying on 40mg just to be able to function.

It wasn't a viable situation, so I booked surgery. My surgeon was more than happy to do it (she knew my situation - I'd spoken to her a few times already) and here I am, a few months later, kicking and whinging :p

Do you mind if I ask where you are at now and what meds you are on? If you are on Prednisone and can't get off it, my advice would be to get surgery. When alternative therapy types talk about meds 'suppressing' the symptoms, they are spot on with Pred. That drug doesn't heal, it only suppresses the inflammation - my pathology report showed a colon still affected by severe pancolitis (I can provide a photo of that too... >.>)

I was probably looking for somebody who agreed with me! But I also just wanted to vent sometimes and I didn't know where else to do it. I obviously upset people along the way and that wasn't my intention. I wasn't trying to make other people feel as miserable as I felt. But I did feel depressed that my life wasn't radically changed for the better, that I was still so tired, etc. Everybody else said how much better they felt and I didn't and I couldn't understand why. But that said, don't let that put you off surgery. It's not like I'm any worse off. I don't really regret having the surgery either; but I do realise that there is a massive adjustment to be made and the hard work is only just beginning.

But yeah, hopefully you won't go through all that and will feel better almost straight away. Most people seem to.

@Sherrine - Cheers :p

Great pic NCOT. And I completely agree with Somedude (never thought I'd get to say that ;-))

Hugs, fellows. ♥ you both :p

NCOT-you are welcome to ask me just about anything. I don't mind. I am not Prednisone dependent...yet. My GI is trying to prepare me for surgery because I have multiple health problems and my colon problems are making things very difficult. My UC is nearly uncontrollable, unfortunately. I am teetering on that edge. I just cant seem to accept the idea of surgery, yet. I am looking for a miracle but not sure if I will ever find it.

I can understand you wanting to vent but keep in mind that dumping on those that are very sick is not a good idea because we cant carry the load well. The forum moderator Sue is exactly right. Negativity tends to drive people away. I can appreciate your comments that open the door for discussion about the plusses and minuses of surgery. It would be more helpful to keep the negativity to a minimum and stick to what information can be helpful to others facing a similar situation. Like me, for example.

Post Edited (sweetbabyray299) : 6/25/2013 8:55:33 AM (GMT-6)

sweetbabyray - Are you on Pred at all? I'm gonna assume you've tried all the standard meds, up to and including Remicade, and they have failed to work for your UC - correct me if I'm wrong!

Once the meds fail, surgery does tend to be the next step :-/ You can join clinical trials, try faecal transplants, worms, LDN, etc. etc. Possibly you've been through most of that stuff already. I do understand about waiting for a miracle; I was doing the same thing myself for about a year, buying time with Pred.

The thing is, and I hope this doesn't sound negative, the miracle probably won't happen :-/ I do think one day there'll probably be a cure for UC, or at least far better treatments on offer, but that could be 50-100 years away, or, worse case scenario, never.

That said, I think you'll book surgery when you feel ready to. I think there comes a moment which every person who has elective surgery has to have first. It's like a lightbulb goes off in your head and you just know you don't want to put up with this rubbish a second longer than you have to any more. That happened to me in January, around my birthday: I remember phoning up the surgeon the next day and getting pissed when the secretary didn't get back to me fast enough!

I'll try to be less negative on this forum from now on... :-/ Just so long as I can still make a whinging thread once every few months or so.... <_<

I'd love to go the US. I've never been, even though I have an American dad (he's from Philadelphia, but has lived in the UK for over 40 years now).

Fish and chips is a lovely dish, but yes, it's not exactly light on the gut. I'm trying to think of something vaguely healthy... >.> Maybe a roast dinner, with chicken/beef/lamb and mashed potato? A fish pie? (Not the usual pie in pastry, but salmon/prawns/etc. in a creamy sauce with mashed potato on top.) Toad in the hole? (Are sausages okay?) A mild chicken curry and rice? A sandwich? Sorry, I'm struggling a bit for ideas...

I hope that helps a bit. Hope you have a lovely meal; let me know what you chose :p

I must admit: I love whinging :p

Never watched Downton Abbey, though I would hear my parents complain about it >_<. Apparently the second series got a bit ridiculous, oh and there was a depressing death on Christmas Day, or something... <_<