I am done with this board

Bye.

I'm not looking for back-patting.

I'm looking to post without being attacked. Which I can't do on this board. Even if it is "so much more", so what? If you can't handle it, then just ignore me. But you people can't bring yourself to do that. You just have to make hurtful digs which cannot possibly help somebody who is truly in distress or disturbed, but only make them worse.

Post Edited (NiceCupOfTea) : 5/20/2013 7:31:22 AM (GMT-6)

I'm also not looking for advice. I never have been. I don't want advice. For a start, it never helps. It's either something I've already thought of and can't do, or it's just something that doesn't much appeal to me. But the main reason I don't want or solicit advice is this: people turn against you if you don't follow their advice. Without fail. Even though you never asked it, people will always turn against you if you aren't seen to be getting "better".

then stop asking for it. Really, when you post things along the lines of being unhappy, no chance of realtionships/jobs, no interests, generally admitting to being depressed... what do you expect the HELPFUL people on here to do? Rather than telling eveyone else to ignore you, why don't you stop posting about things other than the forum topic?

As a new member, I have to tell you that you are a negative distraction and are very self absorbed because it is obvious you could care less about the rest of us who are here to seek advice and information.

I will not read your selfish posts any longer. I suggest you get help and fast.

Good bye

sweetbabyray299 said...
As a new member, I have to tell you that you are a negative distraction and are very self absorbed because it is obvious you could care less about the rest of us who are here to seek advice and information.

I will not read your selfish posts any longer. I suggest you get help and fast.

Good bye

Why are you even bothering to say goodbye to somebody whom you obviously can't stand and see as a total drama queen with severe personality issues? And are you going to pay for me to get the professional help that I cannot afford? (And isn't available on the NHS.) Of course you are not, nor is anybody else, so constantly telling me to get help that is beyond my reach is also an utterly pointless gesture.

Okay, dinner's ready, folks :p

NiceCupof Tea......for what its worth......before my operation, when I was still dealing with the day to day struggles of living with UC, I opted to see a psychologist who specializes in chronic illnesses. My bi-weekly sessions were mostly a big "piss and moan" party but he never tried to "talk me down from the ledge".....just let me vent and eventually helped me come to the decision to have the surgery. We talked openly and honestly about all things poop which was certainly what my life was revolving around at the time.

My point being that I needed that pity party of one and he allowed me that. Eventually, I got tired of living with not only the UC, but the misery of it so I took the big step to resolution. Professional help like that can make a huge difference. And by the way, the person doesn't have to be a highly paid professional. I also find that my Ostomy support group is one of the best sources of support I have. Several people have freely given me their phone numbers to call whenever I feel lost, confused or just need to vent about any stoma issues.

Sorry if that sounded like "more advice" but I speak from personal experience.

@ByeByeUC - My "downright mean and nasty" responses were in response to those who I felt were being mean to me. In an ideal world, I'd have risen above it all. Actually in an ideal world I wouldn't be in a depressive funk and people wouldn't snipe at me to begin with. I could be wrong, but I don't remember making any personal comments to anyone recently: not without somebody having a go at me first at any rate.

Basically, you're painting me as being exclusively in the wrong and I don't see it that way. I see it as being six of one and half a dozen of the other.

@desertsun - Thank you for managing to post a reply without saying things like "No wonder all these people are done with you": not being sarcastic. I'm waiting to see a psychologist on the NHS: it'll likely be months before I get to see him, but I have been referred. Meanwhile, I have joined the UK Ileostomy Association. Tbh, I'm a bit scared to get in touch with them at this rate, in case I end up alienating a brand new group of people.

@Amythyst - I take your point. I do think the word 'depression' is overused. I dunno if I'm clinically depressed, because occasionally I can cheer up, but it's not exactly common at the moment. Basically I tick every checkpoint for depression going.

I do have good parents. And my stoma nurses (there's two of them) have been very good as well. So I'm not entirely without support. I do worry about being entirely alone in the future, though, as I'm not in a relationship and show no sign whatsoever of being in one.

My stoma is as good as permanent. Can't have a j-pouch because of Crohn's. There is a possibility of an ileum-rectal connection, but it is not that likely at the moment. And if I do have it and my Crohn's returns with a vengeance, I'll have to revert back to an ileostomy. So basically, it is very, very likely I'll have a stoma for life. The operation was literally 3 months ago to the day, by the way.

PS: Dehydration is a possibility. I really should find out how much, and what, I should be drinking.

Hey, Tea, if nothing else you are responsible for a forum of many bright, experienced and supportive participants sharing with you and each other a wealth of knowledge related to our mutual needs. You also annoyed or angered some people and they gave it back. As an interested observer I think you're a lot smarter than you want us to know and I feel like you might be playing the devil's advocate at times. If that works for you, so be it. This setting is all about what works for you and us and, as long as we're not hurting anyone, keep the messages alive even if you might be exaggerating or stretching the facts a little. A lot of the responders are a whole lot smarter than you might imagine and, whatever emotions they might elicit, be thankful they took the time and exerted the energy for what they thought was a real good cause. That's you.
Respectfully, Mike

Ugh, NCOT, that's an awful time w/the bag tonight, hope you're set for a while.

NiceCupOfTea said...

As much as I profoundly wish I hadn't had this operation in some ways, the fact is I have had the operation and I need to find a better system of changing bags and taking care of the stoma.

Yes! And the more you can look at it as a technical problem to be solved, separate from the context of how you got the stoma and how you feel about it, the faster you'll solve it..... this is actually something that the collective wisdom of this list is very good at.

NiceCupOfTea said...
I do think that dealing with a stoma is not quick and easy and sometimes it feels like I spend nearly as much time in the bathroom with a stoma as I did with my Crohn's.

It's really much, much faster once you find a system that works, and just do the same thing every time. I am amazed at how much quicker it all goes for me now than it did the first few months, when everything was a big production.

Glad your mom was so helpful.

Yea, its always good to have someone help you. For a long time after my hubby's surgery I had to change his bags for him. He had septic shock after his surgery and was very very ill for many months. So, as horrible as it was for him, it was also incredibly stressful for me. Here I am this non nurse person having to do all this stuff... I was always scared I would screw up or I would somehow hurt the stoma but I just had to push all that stuff away and just do it.

Once he was able to change his own bag he too developed a system. He would get up in the mornings and shower first with the bag on and then get right in there and change it. If you're having the leaking problems you need to address that and figure out why its happening and how to resolve it. Look at everything as just a challenge that has a solution. :) And take it one thing at a time...

Does your stoma stick out a good ways? What sort of bags and stuff are you using?

I am sorry you're feeling so badly about this board. From one "negative nancy" to another, I know exactly what you're saying about feeling like everyone just wants to hear what a wonderful bowl of cherries life is with the stoma, and when someone says otherwise, they are obviously screwed up in the head and in need of mental help (though, to be honest, I think an unbiased opinion from a professional is usually a good idea). From an outsiders perspective, it's very difficult for me to imagine life being that peachy after a major surgery with life-long physical implications. It's great that many people feel that way - it's really not for us to judge who feels what, it's our goal to support you and help you to get to where you need to be. I understand people not wanting to read negative posts when they are healing or considering surgery but heck, that's what ignore is for and if they are so over it, they shouldn't read posts titled "I am done with this board". Obviously there was nothing positive to read within.

sweetbabyray299, i think your comments were uncalled. Negative or not, we have a right to express our opinions. Calling someone self-absorbed when they are in need of support is equally as bad as the negativity & it was intentionally hurtful towards a member. Not appropriate at all.