thefirstcaro: (lois & clark)
[personal profile] thefirstcaro
So like I said, I had my surgery on January 10th 2008.

A panproctocolectomy is the removal of the large intestine and rectum. Mine are gone the way of the dodo and I am very thankful for it. One of the theatre nurses told my mother that the surgery was hard because the crohn's had ulcerated my intestine so much that it was not easy to take out. That seems to me to be the reason none of my blood work was showing inflammation - there was probably nothing to inflame! The damage was well done. Then the surgeon created my stoma. My stoma is  my small intestine which is brought up through the skin as a little spout to output any and all waste products and I wear an ostomy appliance over that to collect it. It's just this red moist little thing, it has the same feel and consistency as your gums. The movements are completely involuntary so I can't control when it does and doesn't output. I call mine Jenny. My cousin suggested it after meeting the wife of a friend of hers. Her name is Jenny and my cousin said that like my stoma, she was full of shit. Hee! So Jenny it is.
Jenny likes to dance and move about a lot. She's a real party animal. But thanks to Jenny, I am once the again the person who can go out at a minute's notice without having to worry about the sandwich I ate half an hour before or gasp! the dinner I had. My stomach is never upset and I am completely pain free. I can walk the dogs in places where there are no toilets in sight and I can do this without even the slightest hint of a panic attack. People can use any toilet they want quite freely and I will not scream or bang on the door demanding they come out NOW before bad things happen. Thanks to Jenny, I can enjoy food and taste whatever I want and if you want to bring me to dinner, than by God you'd better not dawdle over reading the menu because we don't want to waste precious time when we could be savouring a nice plate of grub!

The ostomy appliances come in all shapes and sizes. It's quite the business actually. There's lots of companies out there wanting your business. You can get them in one piece or two piece. Right now I wear a two piece, which is what's called the baseplate - a round piece with a hole cut to the size of your stoma with adhesive on the back to adhere to your skin. You stick that on and then you attach the drainable pouch which clicks onto the baseplate. And that's it. You change the baseplate every three days just by peeling off the baseplate, wiping the stoma and the skin and putting on a new one. When I was in hospital, the stoma nurse would do it for me and the first time I had to do it on my own, I nearly hyperventilated and had to lie down afterwards. I was afraid to do it on my own so my mother would have to sit with me in the bathroom for moral support. Now, it takes me less than five minutes and the other night I did it having a conversation with my mother,who was putting away towels, and three dogs sitting at the door watching me. Though I don't think they were so much watching me as wondering if they could get away with chewing the wicker laundry basket behind me. But if you had told me that I'd be doing it as easily as I wash my teeth or clean my face this time last year, I'd have called you a liar.
A stoma is very overwhelming. It doesn't seem right. It's not normal. Nobody wants to be that close to bodily waste. And that's true. But after a while, you stop being overwhelmed and start to feel more in control as you get more used to it and realise that you're not doing it wrong. Like everything, you know your own body so you start to know when a good time is to do it and make it fit into your routine, not the other way around. Then suddenly you realise that not only does it feel fine to have it but it feels normal too. You get used to it. Without wanting to be crude, you wipe your own ass all the time. What's so hard about draining a bag and closing it back up again? Nothing. That's all there is to it. It doesn't stop me doing what I want to do. And nobody even knows that you're wearing the bag. I was paranoid about that at first. I was full sure if it filled a bit that it was blatantly obvious. The only thing that convinced me it's not was when I started working with Brownies. At that age, if they noticed something odd, they'd be sure to mention it. And they haven't. Plus my own mother caught sight of the bag peeking out over the top of my p.j.'s one evening and asked me why I was wearing a plaster. Then it dawned on her. So if she didn't recognise the bag for a whole ten seconds, then complete strangers aren't going to have the slightest notion. The only person who knows for sure is the wearer.

A stoma, whethere it's an illeostomy like I have, or a colostomy (where is when you still have some of your large intestine), is not the end of the world. It's not a bad thing. I know, you're might be thinking I've only had mine a year, it's a bit early to be telling other people how to feel. And I would never deny anyone their feelings about it because it is a big deal and does take some adjusting. I suppose in my case, it helps that it wasn't an emergency thing. I had time to think about it and realise that this was the only way I could ever get any semblance of a life back. I suppose the biggest thing it's given back to me are oppertunities and hope. It doesn't define me. I have a stoma. It doesn't have me. The scar on my stomach and the beige coloured bag to the right of it are actually things I'm proud of and I don't mind looking at them because I think they just make me a bit more interesting. Sure, some people might be put off by them but that's their problem. It'll make things interesting in any future relationships, and I have no problem in explaining them, but if any guy feels it's too much to handle, then fine. Go away. Because as upsetting as that kind of rejection is, the bigger picture says that I've been through too much to settle for that kind of nonsense from someone who wasn't around for the main event and would be benefiting from my awesomeness since the cure!

Like I said, the point of these posts isn't to be all TMI, but to show just because something isn't always talked about, that doesn't mean it can't be a positive thing. Information is power, after all. And maybe these posts will go out there into the ether and have a knock on effect and do some good. I don't know. But I do know that I got the chance at life that I prayed for on some really bad days and nights and I want to make it count. I want to make something good out of what happened to me. Because that way, it's my bitch and not the other way around.
The thing about Crohns is that it's a chronic illness and can affect anywhere in the digestive system. So it might come back in another place. I can't control that and I'm certainly not going to sit at home fretting over it. I don't have the time anyway because I have things to do. And it's a really brilliant feeling.


Date: 2009-01-10 03:15 am (UTC)
From: [identity profile] poinsley.livejournal.com
My cousin suggested it after meeting the wife of a friend of hers. Her name is Jenny and my cousin said that like my stoma, she was full of shit.

ROFL!

Thanks for sharing! I was curious when you mentioned your surgery before, but I didn't want to be nosy about it.

Date: 2009-01-11 11:56 pm (UTC)
From: [identity profile] queenthesixth.livejournal.com
Re Jenny: I know, right? I actually met the person in question at a wedding during the summer and that was all I could think about!

And thank you for reading.

Date: 2009-01-10 03:37 am (UTC)
From: [identity profile] akathorne.livejournal.com
When my half-brother was born, he was three months premature and had to have a colostomy bag for the first year of his life. It was strange getting used to changing it instead of diapers, but eventually we all got used to it. It was weird when he turned a year old and had another operation to reconnect his intestines (it was successful and he's had no further problems). So I can totally get that it's something that seems overwhelmingly freaky at first but then becomes just a normal part of life. I'm glad you are doing so much better!

Date: 2009-01-11 11:57 pm (UTC)
From: [identity profile] queenthesixth.livejournal.com
I'm glad your brother is fine now. And thank you.

Date: 2009-01-10 03:55 am (UTC)
From: [identity profile] callie-girl.livejournal.com
I don't think it's too TMI - for what it's worth, I enjoyed hearing about your experiences, how you handled it and how you're moving forward. It's a positive thing. And I'm glad you're happy and healthy. :)

Date: 2009-01-11 11:57 pm (UTC)
From: [identity profile] queenthesixth.livejournal.com
Thank you very much.

Date: 2009-01-10 04:12 am (UTC)
From: [identity profile] gfrancie.livejournal.com
Jenny...*snorts* that had me giggling.

Date: 2009-01-11 11:58 pm (UTC)
From: [identity profile] queenthesixth.livejournal.com
Hee! Of course now I can never use that name on any future child or even dog!

Date: 2009-01-10 04:33 am (UTC)
From: [identity profile] salamandersam.livejournal.com
I'm really glad you shared this, I haven't found it TMI but interesting. I'm also glad that you're able to live your life again.

And I love the story behind naming it Jenny.

Date: 2009-01-11 11:58 pm (UTC)

Date: 2009-01-10 06:34 am (UTC)
From: [identity profile] gannet-guts.livejournal.com
No such thing as too much TMI. :D Thanks for telling us your story. It was so fascinating to read.

Date: 2009-01-10 06:09 pm (UTC)
From: [identity profile] particle-person.livejournal.com
Word, on all three sentences.

Date: 2009-01-12 12:04 am (UTC)
From: [identity profile] queenthesixth.livejournal.com
Thanks, p_p!

Date: 2009-01-12 12:03 am (UTC)
From: [identity profile] queenthesixth.livejournal.com
Thank you for reading and thanks for reassuring me about the TMI.

Date: 2009-01-10 07:14 am (UTC)
From: [identity profile] caerbannog.livejournal.com
I found it really interesting to read too. It's great how much your life has improved since your surgery. I'm glad to hear how healthy you are.

Date: 2009-01-12 12:06 am (UTC)
From: [identity profile] queenthesixth.livejournal.com
Thank you. It's still a great feeling to have freedom back in my life again. I hope I never get complacent about it!

Date: 2009-01-10 03:12 pm (UTC)
From: [identity profile] early-afternoon.livejournal.com
I give you a ton of credit for going through all this and coming out the other side with your sense of humor intact. It is interesting!

It's good to hear how you have your health back.

Date: 2009-01-10 09:11 pm (UTC)
From: [identity profile] oxymoron67.livejournal.com
I absolutely agree with this. My hat's off to you!

The strength you;ve shown in going through this is amazing.

Date: 2009-01-12 12:09 am (UTC)
From: [identity profile] queenthesixth.livejournal.com
Thank you, Oxy. I appreciate hearing that.

Date: 2009-01-12 12:08 am (UTC)
From: [identity profile] queenthesixth.livejournal.com
Thanks. It wasn't easy but I did have some great support from people who proved themselves to be true friends.

Date: 2009-01-11 01:26 am (UTC)
From: [identity profile] roatan.livejournal.com
I nearly cried when I stubbed my toe the other day, so I applaud your bravery in doing something I doubt very much I would have the strength to do.

Date: 2009-01-12 12:05 am (UTC)
From: [identity profile] queenthesixth.livejournal.com
Thank you very much. But you're still judging me about going to see Twilight, aren't you? ;-)

Date: 2009-01-12 05:21 pm (UTC)
From: [identity profile] narfzz.livejournal.com
Thank you sharing your experience. It just made me realize just how much [b]more[/b] awesome and strong a person you are. Cheers to your health! :)

Date: 2009-01-14 10:33 pm (UTC)
From: [identity profile] queenthesixth.livejournal.com
Aw, thank you very much. And thanks for saying I'm awesome. *modest giggle*

Date: 2009-01-12 09:40 pm (UTC)
From: [identity profile] may-lyn.livejournal.com
i'm so happy for you! and when/if i go through it, i know i can count on you to help me figure out what's going on. :D

Date: 2009-01-14 10:35 pm (UTC)
From: [identity profile] queenthesixth.livejournal.com
You absolutely can count on me if/when you go through it. Actually you can count on me even now but you already knew that.

Date: 2009-01-14 10:40 pm (UTC)
From: [identity profile] may-lyn.livejournal.com
that is well known. :D

thanks for being there for me.

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