Wednesday, May 4, 2011


Most people that anticipate receiving an ileostomy have Ulceritive Colitis or Crohns, through a few have been in accidents where life-saving measures have "awarded" them with an ileo.

I was born with a birth defect that affects my peristalsis, the motility of the large intestine. It was manageable for many years, but as I got older it became worse. I had surgery in 2003 when I was around 16 or 17 years old, after years of a battery of tests and doctors telling me it was all in my head or "whatever, you're fine". I had about 12 inches of large intestine removed in a resection, that foot of which had no peristalsis in it at all.
I never recovered from the surgery.
I probably shouldn't go into the gory details and freek y'all out with awesome descriptions of blood or something, but there were infected stitches involved, and the additional surgeries for lysis (cutting) of adhesions didn't improve my intestinal function. I literally spent all day long struggling to eat and pass materials that weren't moving through, to the point I am now, 2011, on the brink of an iliostomy.

After my first surgery, I was at Mayo Clinic in Rochester, MN, going through weeks and weeks of tests and workups and physical therapy for my pelvic floor, none of which improved me in the slightest, but actually made me so depleted of potassium that I had to be admitted to the hospital for a cardiac arrest. :/ One surgeon told me then I'd eventually need a total colectomy, but at my young age, uhm, yeah. Not ready to hear that shit.

I've been to more surgeons this year, and through more tests for transit and imaging that I had done years ago that needed to be updated. I've known for some time and actually joyfully anticipated getting an ileostomy, something which would give me my life back.

I've always been a skinny redhead, but now I've dwindled down and down and down to god knows what weight (I stopped checking around 77lbs). 

Here I was at healthier happier times---->
That's Mr B. I met him during the summer through a mutual friend, and he's been with me through the entire thing, seeing me flourish to watching my painful dwindling decline. (It's been hard for me to have someone else see me be weak, and know these terrible secrets of my health. I always assumed others would be disgusted, horrified, and shun me even worse than highschool. But this dude's a fucking saint. I couldn't ask for a better best friend.) Even through this, he decided that even if I weren't going to live much longer, he would ask me to marry him.

After we were engaged, I continued to decline. I got so weak that I couldn't go outside--but I still wanted to, so Mr B put me in a little wagon and pulled me.

(Yeah, people probably thought I was a little kid--pfft. Whatever. I have no shame. After months inside in pain, I had to get out and see the sunlight.)

Within the coming week, I will be meeting with 2 different surgeons to discuss my options and when. When better be like fucking NOW, becaue I've been on a liquid diet, I'm barfing every day, and I'm no longer responsive to any kind of drugs for peristalsis, so I'm failing fast :/

1 comment:

  1. girl, you're great! looove your attitude and totally understand you because of ulcerative colitis shit! i had ileo and total colectomy surgery about 5 weeks ago. i hope you will be much better by the time.. xo