Wednesday, September 28, 2011

Total colectomy--totally rad?

Next Monday is my total coloectomy, where my loop ileo is going to be made permanent. So much of my time for months has been literally filled with doctors appointments, even for diff stuff than the ileo) that this just seems like another thing, but it's not. I am finally going to be rid of my stupid hateful piece of shit large intestine. I'm glad to be rid of it, but I'm concerned, naturally, about how I'm going to heal.

Bromaline helps with healing, but it only does so much. My Swedish surgeon told me is takes 5-7 hours to perform this operation. (Forgive me for not being as eloquent this time around, but Blogger erased my post without so much as a tiny trace and I'm having to re-do everything right now off what I can barely remember.)
So anyway, any loop ileo will get "Spillover", the redundant stoma sucking up liquid waste into the large intestine just as its been used to doing it's whole existence. It will continue to do this after loop surgery, sucking up waste from the bag even if you are very careful. My surgeon from Sweden was very blase about this as it WILL HAPPEN  to everyone that has a loop, he so said, but my initial Asshole surgeon went so far as to scorn even the idea that it could possibly ever happen. Stupid stupid asshole.
anyway, so that's my problem, and with the total coletomy, this will be less of a problem, but still something to watch for, trying to "express" the contents of my large intestine, as they will leave a rectal stump to hold up my lil vag so sex doesn't hurt.

I am worried about healing and about my husband being able to remain in the room with me, and about swelling and about surgical complications and about getting out of the hospital quickly. Since going to the emergency room for 16 blood sugar, (WTF that ever means, who knows), my heart hasn't been working quite right, so yeah I'm worried.

The picture above is how my large intestine looks now. When i was 17 I had a large intestinal resection, where they chopped it apart and fit it together like so, so I'm hoping that in light of this, the surgery will not take as long as "normals" who don't already have partial intestine missing and an already-in-place ileostomy.

I'm incoherent with worry, I acknowledge this, and also exhausted with having to rewrite this post and not having having any down time since this whole excursion of pain and suffering really began to sink it's claws into me. All I can ask is for prayers and well-wishes, I'm just too scared sometimes to know how to proceed, and knowing, or thinking, that someone else out there is wishing me well gives me the strength to face another minute of this insanity.

Sunday, September 18, 2011

How to make a Sexy Ostomy-Bag holder--TUTORIAL

I don't like my bag dangling around and flopping free-balling. It's like not wearing a bra, or not having a jock-strap on. Moreover, as the wafer stuck to my skin can only take so much yanking, even with added adhesives, I always have on an ileostomy bag holder thing that I first made by cutting a t-shirt in half to kind of make a rudimentary sling.
I made 3 shitty bag holders before I perfected my technique, and here today, instead of showing you the normal bag-holders (which I promise to do a tutorial of that in the future) I will demonstrate how to make a fabulous sexy bag holder out of an old pair of underwear.
I do not like this stupid ill-fitting panties, and therefore, I decided to change it into a bag-holder. This has little strappy things on the side, but this will work with just about any kind of underwear, although boy-shorts might be rather difficult.
OK. So you got your panties--now hold up the larger butt-side to your ostomy bag to see how big/ how long it should be.  

Now start cutting off the front part of the panties from the top elastic band. (See below)

Now that you are at this stage....------->
...  cut off the crotch lining.

Slip the elastic waist-band around your hips like you normally would putting on panties, with the butt-side over your ostomy bag and tuck the crotch part under the bottom of your bag.

See where my finger is right there? That's where I'm cutting.

Now still wearing the elastic-banded piece covering your bag, flip your cutt-off piece around with the biggest side facing you.

Now snug that biggest-side right under your ostomy bag.

 I snugged it up to a little ways lower than my wafer is... you know how the edges of the wafer stuck to your skin don't have the bag attached to it all the way to the edge? I usually have a little wafer room. But anyway, so now I have the other piece of cloth right under my bag, I'm going to pin the edges together. (I normally don't recommend getting pins or anything poke-y near your bag--it's just a bad fucking idea--so be uber careful.) I also pinned underneath, the area where my bag ends.

So this is what it should look like now, front and back.

I'm sewing the edges first..

See? The pouch is starting to take form.

Now you have a lovely and sexy little bag holder... don't mind the dirty mirror or the bit of yellowish part of my bag. I fold it over at the top to fit into the holder., and the bit of tan you might see peeking out the top is from the top part of the sticky wafer. ANYWAY---it is awesome and holds your junk in place, makes you feel more supported, and doesn't cost a million trillion dollars.

Friday, September 16, 2011

Can I Get Married/ Have a Wedding with an Ileostomy?

The thing that most women seem concerned about is what kind of dress they will be able to wear. For myself personally, what I wore pretty much fits in with what I wear normally every day. I wear skirts with elastic bands, and I have that elastic band snugged right above my Ileo stoma.
For my wedding reception/party day, I wore a more 1950's style poofy ballerina-like skirt.

See where the end of the bodice meets the skirt? That's resting just barely above my stoma. Those sheath dresses and slip-like wedding dresses really look good on no one but supermodels, and even they can't always carry it off. So this was more of a natural choice for me anyway, since it fits with my natural style and felt comfortable to wear with my ileo. It was short enough--mid-calf--so I could grab up the end and roll it under to check my bag and do all the nice little toiletries that come along with keeping it clean. You really forget you have a bag at all when you have clothes that mask it/fit well with it.
These are mah nails... and my ring and bangles (none of which got in the way of bag-changing or cleanliness) and rose petals my sister scattered across my skirt for the photo.

My mother in law speaking to me after my "vows/ love-letter to Mr B"

Whilst the vows were read...

Anyway, to re-iterate the answer to the title question: Hell yes you can both court and get married and have the sexual relations with an ileostomy. It's like having a birthmark. Some people are mightily ashamed of it, and refuse to take off their long sleeved shirts or whatever and wherever it might be, ashamed of the birthmark's presence. If you can learn to be like "yeah--I have an ileostomy--so the fuck what?" it ceases to matter. It's also like many heavier girls I've seen at clubs. They are extremely attractive, but many are much too self-conscious about themselves to have fun. Then there are ones that get out on the dance floor and love the fuck out of themselves, because they are fabulous. And if you don't feel fabulous at first, fake that confidence until you have it.
Women have enough trouble with confidence anyway without adding a body-altering complications such as a bag that holds our liquidish waste, but I say why the fuck don't you deserve to go out there and have the time of your lives just because of a medical condition that you have no control over? It is what it is--and who the fuck cares if someone wins your confidence, finds out and then gets weirded out? Fuck em. They aren't worth your salt anyway. Our lives and too fragile and too short to waste time with negative people. Your ileo is there for a reason, likely a life-saving one, and you can be fabulous with it. You probably aren't going to be playing tackle rugby with the boys any time soon, but otherwise, as far as ileostomies go, there is nothing stopping you at all whatsoever from leading a life full of a fuck-more potential and opportunities than you could have without your ileostomy, or, you know, dead.

Anyway, as eating is difficult for me with the strange confusion of my digestion, I didn't eat much my wedding-party night and with how ragged I'd worn myself this entire month getting ready for it (we made all our own food, I sewed my dress, we dj-ed the party, we wrote filmed starred-in edited and created music for a video we made of how we met plus setting up all the things and decorations and blah blah etc) I ended up having a blood-sugar of 16 that night and uhm, narrowly missed slipping into a coma.
So things didn't exactly turn out how we planned, but there's worse. There's always worse.
(And I do recognise this is a really shitty way to end a post regarding weddings.)