Wednesday, June 1, 2011

Surgery's Coming.....

At my last appointment, I met with the Dr and he preferred to do a Loop Ileo for his own b-tard reasons. Now I'll have to have another surgery in the near future to do total collectomy, and he gave me the lovely statistics that 80% of Ileostomates need revision surgery for herniations, infections etc. Oh GOOD. After the hour long spiel and schematics explanation, I asked him where he'd place it and he pointed to BESIDE MY BELLY BUTTON. Um, fuck no.

The same appointment the ostomy nurse marked me, and she marked it really low beside my right hip. Well, like an inch horizontally from my hip bone. I LOVE where she marked it. If he ostomizes (yeah, it's a made-up word, shut it) me there, then I can still actually you know, wear clothes like a respectable human being. This is what I've been worrying over, as I have surgery in Seven daaayyyyysssss...... (said in creepy voice).

I mean, I'm hard-core worrying. I worry about recovery, yeah, because everyone says you're fucking fucked-up as shit afterward (I understand that, I had an 5 or 6-hour long colonic resection when I was 17, after all); fucked up like, your intestines are so swollen shut that you can't pass anything from your stupid ostomy for days. Sometimes even weeks. Oh joy. What young woman doesn't want to look as swollen as a basketball.
But mostly, I'm worried about placement. That can really make or break the rest of my "enjoyable" life for me. If this arrogant Dr doesn't place it where the ostomy nurse did, I'm fucked. Royally.

(Pic's where nurse marked it, clear tape peeling---->
Big scar from resection, little scars from 2nd endometriosis and lysis of adhestions Lap surgery in Feb)

The other scary thing about this is that every time I've gone to an appointment with him, I had a strong intuition about what was going to happen next. When I first met with him in December, we (my old mom and I) brought my old records and tests with. She being an RN along with other creds too many to list was convinced that this would be enough for him to scedual a surgery. I KNEW he was going to re-order all the tests again. And guess what? Bam. He did, that motherfucker. For the next 5 months I was put through hell as I did test after test for this sceptical asshole, as I lost more and more weight and became more and more dysfunctional until I'm at the point I am now, barely able to drink Ensure every damn day.
On our next visit, my mom was convinced again this would be enoguh for him. Nope. One more test, just as I predicted. Small bowel follow-through, with Gastrograffin instead of barium. (Ask your Dr about it, waaay better than Barium <3) That went fine, then two weeks later we were FINALLY able to secure a surgery date with him. But as I've predicted correctly everything that happened so far, I'm afraid that he is going to place it high. I have this terrible sinking feeling that he's going to place it where HE wants, not where the nurse marked it.  



  1. My doctor totally did NOT put my ostomy where the nurse marked it. It's more than an inch higher. Which wouldn't be the end of the world, but it's EXACTLY where the waist band of every single pair of pants I own lands. And so all of the pressure lands DIRECTLY on my stoma. Not happy about this. Maybe after it's all healed up (2 weeks tomorrow) it'll feel better, but for now, I can't wear any jeans. I actually like high wasted pants, so my dress pants fit a little better. But only because they're all a size too big (I lost a lot of weight with the colitis before my surgery).

    Just annoyed that he didn't leave it where he was supposed to. maybe I'll have to do like you and find lower pants (but then my butt-crack will show-- sigh...) and make a little sling to wear it overtop.

    Clothing-wise, I'm sad because I'm all about 40s style clothing with pencil skirts and such. Either that or historical costuming with corsets. They say you can wear anything with an ostomy and no one can tell. HA! You can put on anything, but I've got pretty high output-- you're going to see that balloon in my pants in about 15-20 minutes!! ARG!!

  2. They should only make it higher if there were circulation problems, although, as I understand, later down the road you can have a seperate surgeon re-arrange the location of the stoma. This has happeend ot many people I know, personally.

    What I do with pants is this:
    I wear leggings that are rather thick, but I have sewn the waist-band so it sits BELOW my stoma and my wafer-bag area. (I should really do a tutorial on this too!) The butt-area still goes up high enough to cover my whole butt-bottom, but it dips down as the waistband reaches into the front, grazing over my pubic-bone. My sling holds my bag over the leggings/pants.

    i too LOVE corsets. I need them now, Especially since my last surgery, they sewed the main muscles of my stomach back together rather bumpy, and it bulges out like it hasn't ever before. I always loved pencil skirts before my surgery as well, but now it has to be fluffier skirts to hide my bag bulge :/


  3. Oh Darling, Wonderful, Foul-Mouthed Truth-Speaker. Thanks so much for your compelling, hysterically funny take on the miserable situation my darling sweet gf will be facing in about a month after losing about 11 inches of her precious garden hose to Crohns Disease and eating stupid. I forwarded your blog to her. I think she will be shocked at first....she values her appearance a lot and this is not going to be an enhancement....but ultimately happy for your suggestions. I wish you every fucking happiness and am glad you are participating in the ad program and making a few bucks, hopefully, on it. I'm a Buddhist too and am hoping to get my gf interested after the confirmation this represents of the First Noble Truth. If you are ever in SF and need a place to stay, my sister, I have 2 extra bedrooms right in the Haight

  4. Hey Bob--You know, I am, and admittedly always have been--kinda concious of my imgage as well. I hope she finds some hope in the clothing sections of my blog. I definately thought just having it would F my mind over in a body-horror way, but it's so not a big deal that even *I'M* suprised. My life is so much easier (in the poo, respects) I would never never go back to having a colon ever again. I love my useless as*hole that leads to nowhere, and my little rosebud.

    I actually do NOT have the ad program, and am a little freeked out if you are seeing ads! I dont know how to stop it! I certainly don't have adsence and really really certainly have never made a penny from my blog!! :O

  5. Heyyyyyy! You're the first lady I've found with an ileostomy AND endo! I had a bowrl resection durine excision of endometriosis and all was fine for about a week and then a rectovaginal fistula formed. Enter the loop ileo. Now I'm waiting for surgery to repair the fistula and then, eventually to reverse the ostomy.