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Posted 2/17/2013 5:49 PM (GMT 0)
I don't want to leave the Crohn's board and move to the Ostomy board after surgery, I just don't.

This is the only board where I feel like people are actually genuinely supportive and not being all competitive about how sick and underweight they are.
Posted 2/17/2013 5:54 PM (GMT 0)
Also: nobody really understands what it feels like to be on the brink of major surgery. My parents care obviously, but beyond them nobody seems to give much of a crap. It just seems like everybody is so wrapped up in their own lives, they have barely given me a single, solitary thought.

One or two notable exceptions aside, but they are folks that I know online rather than in real life. One is going to make the effort to come down to see me, which I truly appreciate. But my actual family, parents aside, probably won't even bother to come visit me. It's not like I'm having an ingrowing toenail removed FFS. But nobody seems interested: they just don't!
Posted 2/17/2013 5:55 PM (GMT 0)
It's a lonely position to be in.
Posted 2/17/2013 6:03 PM (GMT 0)
what does it matter if you have the surgery you can post anywhere you want.
Posted 2/17/2013 6:07 PM (GMT 0)
I don't know, I'm just a bit OCD I suppose :-/
Posted 2/17/2013 6:08 PM (GMT 0)
Here I am lurking again!!

I wanted you to know NCOT, that I'm thinking of you, and wishing all the luck
for the 20th!

I'm really hoping that this surgery will bring you a long remission, you need it sweetie!!
Having gone through 3 surgeries, I know just how you're feeling right now, it's a huge
step! But hopefully a step in the right direction!

I know it's hard, but try and rest these next couple of days, you need to be at the best
you can possibly be!!

In case 'virtual' hugs work. I'm sending you a huge one!!

Good luck!!
Posted 2/17/2013 6:13 PM (GMT 0)
NCOT - you can still post here! You'll probably have lots of good insight for others afterwards!
Check out a blog called The Stolen Colon. The gal, Stephanie, that runs it is great. I've emailed her and heard back from her within a day or so and she just genuinely cares. You might find her blog encouraging :)

That being said, I'm sorry that your family will not be visiting you; if I lived any bit closer, I would most definitely make an effort to. Just know that we'll all be thinking about you from our own corners of the world on the 20th!

Jade
Posted 2/17/2013 6:15 PM (GMT 0)
Why would you need to leave this board? Unless a cure is found you'll always be a Crohnie! turn
Posted 2/17/2013 6:29 PM (GMT 0)
Thank you, Vicky and Jade (hope you don't mind me using your real names instead of your screen ones. Jade is just a tad easier to type than jknumbers >_>).

I must admit, I'm getting very antsy as the time to the op draws closer. And I'm not sleeping very well - having some weird and disturbing dreams at the moment (about seemingly utterly unrelated things, but there you go).

At any rate, I will definitely look up The Stolen Colon - thanks for the recommendation!

Re my family. I exaggerated a teensy tad :-/ There is one aunt who will probably visit me. My brother, SIL, and nephews might, but I wouldn't bank on it either. My other two brothers are, tbf, in the far north of England and abroad respectively. But I still can't help feeling as though nobody else apart from my parents seems to really care about my operation. A colectomy and an ileostomy is, to me, feeling like a massive, life-changing deal - and yet I might as well be having a wart removed for all that people seem to recognise this. I don't get it. Do they genuinely not realise that is a big deal to me or do they not care? I think they would care if it was happening to them or their children.

Sorry, I think I'm still a tad upset... :-/

Again, though, thank you, Vicky and Jade! I do appreciate it. Edit: Thanks as well, petittarte :p
Posted 2/17/2013 7:02 PM (GMT 0)
Miranda, you are very welcome my dear. As you know I don't come on here too often
anymore, but I truly keep an eye on people I care for!

My thoughts will be with you on Wednesday!
Posted 2/17/2013 7:09 PM (GMT 0)
Thank you, Vicky!

PS: Are you on my FB? I know you were at some point, but I'm not sure if you still are. If not, feel free to add me again... <_<.
Posted 2/17/2013 7:17 PM (GMT 0)
it's most definitely fine - that's why I try to always sign my name :)

Have you talked to your family about how major this surgery is? Maybe they just need a huge wake-up call as to how BIG this is for you! Like you said.. it is life-changing. If it were me... I would want to know that my family was behind me every step of the way!
Posted 2/17/2013 7:20 PM (GMT 0)
Hi, I have been in remission over 10 years. I post here. and
RA forum and I also lurk in the other forums. You are alway's
welcome we all so care for you.

teddybearweiser
Posted 2/17/2013 7:42 PM (GMT 0)
My real name is Miranda. I don't sign my posts with it, but I don't mind if people who know me by that name use it <_<.

Have you talked to your family about how major this surgery is? Maybe they just need a huge wake-up call as to how BIG this is for you! Like you said.. it is life-changing. If it were me... I would want to know that my family was behind me every step of the way!

Not really... Me and my family don't really 'do' heart-to-heart talks :-/ I'm not close to my brother or SIL. I get on fine with them on a superficial level, but I never have personal talks with them, really. The ridiculous thing is my brother even has Crohn's; he's had it for slightly longer than I have. You'd think that would be something we could talk about, but I don't think we have more than once or twice in the entire time we've had our disease (12-14 years). His is not as severe as mine and is kept in remission most of the time. Something I am actually glad about for his sake, given he has a full time job and two kids, but that's another issue. Going back to talking to my family, it is hard for me to overcome a lifetime of basically keeping my thoughts and feelings to myself. I won't even see anyone except my parents before my surgery now, but I wish I had said something. I don't know what, but just something.

@teddybear (cute name :p) - Thank you. It's appreciated.
Posted 2/17/2013 7:55 PM (GMT 0)
NCOT,

Please do not leave there are lots of new people getting diagnosed everyday who join this forum that you can share your journey with and lots of people who may be facing the same surgery down the road as you.

I will be praying and thinking of you on the 20th. Wishing you the very best of luck. Take Care.
Posted 2/17/2013 8:01 PM (GMT 0)
I'm still on FB, and you're still on my friends list, you just don't post too often :) But I
can understand that!!

Take care sweetie!
Posted 2/17/2013 8:15 PM (GMT 0)
Hi NCOT, you don't know me as i'm more of a lurker than a poster but i just wanted to say that i see alot of your posts and i always find them really knowledgable and informative, you may not realise but i know that i myself and i'm sure others have learned alot from you so it would be shame if you left. Wishing you lots of luck with your surgery. Kelly.

Posted 2/17/2013 9:41 PM (GMT 0)
Well... I certainly understand that one, Miranda!
I'm sorry that is how it is...but, I hope that you have a good network of friends around you that can provide some support in these upcoming weeks! I wish there were more I could do to help!
Posted 2/17/2013 10:05 PM (GMT 0)
You will always have Crohn,s so you can stay here. As for the visiting, a lot of people have a problem seeing loved ones in the Hospital. My father hated to come see me and my son is not much better, he will but I can tell it really bothers him. That does not mean they do not care or do not love you, they just don't want to deal with seeing you that way. Wish you the best with your surgery!

Deb
Posted 2/17/2013 11:00 PM (GMT 0)
NCOT-beautiful name...my daughter's name as well. :)

You have a lot of good advice and knowledge to share with people who have Chrohns. I absolutely think you should stay here.
Posted 2/17/2013 11:44 PM (GMT 0)
Thank you, fellows :p

What do I do when I'm feeling low? I go off and watch a depressing film - makes sense! <_<. (The White Ribbon, if anyone is interested.)

@Vicky - Ah, okay. I'll have to see if Nanners and Suzanne are still in my friends' list as well. I don't post on FB very much, you are right. But hopefully with my spiffing new Nokia Lumia 620 I will start posting more often and become Annoying Facebook Person :p

@Kel, Jade and Deb - Thanks :)

@sherbear - You have good taste in names! :p Thank you as well.

I'm a bit tired now. Think the emotional buzz has worn off, but at least that means I'm less upset... >.>
Posted 2/17/2013 11:54 PM (GMT 0)

NCoT, (Miranda),

Just want to echo the sentiments of your other FRIENDS here. No need to leave this board. You've been a huge help to many here with your experience and advice.

As far as family and friends go, it can be tough to understand how others percieve a disease like this. Some just truly don't know if you want to be asked about it, and some assume that you might want to be left alone.

I won't deny that some are truly insensitive, but it's not always the case. With as much adversity some of us have had to carry around, we are often the ones that have to be the bigger person and forgive our family members. It's not just you believe me, everyone truly understands this feeling.

Also, you are under a certain amount of stress right now, and that's producing some anxiety. It's perfectly logical to feel like you do right now. You have to try to look ahead, and think of how successful this surgery will be for you, and a year from now your life will be flourishing.

Good luck once again. Stay positive and don't leave this board. 

Tom  


Posted 2/18/2013 12:03 AM (GMT 0)
Annoy away sweetie :)
Posted 2/18/2013 12:14 AM (GMT 0)
Thanks massively, 73monte/Tom.

Yes, you are right: I don't truly know how my family are feeling :-/ My SIL phoned my mum this evening and she did ask a couple of things, like where the bag would be (sounded like she had no idea) and what if it burst. So I - who was in the room at the time - said that doesn't happen. A teensy bit of a white lie, since, while the bag doesn't burst in the sense I suspect my SIL was thinking of, it certainly can leak. However, I didn't feel like relaying this second-hand via my mum! In a face-to-face convo, I would be honest about it though.

I have also been wondering what to tell my two nephews, 6 and 11-year-old boys respectively. I don't know what their parents will tell them. I should find out, so I know how much they know at least.

Anyway, thanks again. And thanks, too, folks, for encouraging me to stay. The only reason I really thought of leaving was because I can think of a few UC folks who did migrate to the ostomy board after surgery. But UC can't come back, Crohn's can. And even if my Crohn's never came back, I've still had 12 years experience of dealing with the ****** disease :-/
Posted 2/18/2013 12:15 AM (GMT 0)
Asterisked word referring to an illegitimate child born to unmarried parents, of course >_>

Edit: Vicky, I will! :p
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