I almost make it to the toilet.Â The stars are out, the nightlight glows softly.Â My husband snores from the livingroom.
I bend over as the gas moves from ascending colon to the undiseased part, then back down again through inflammation, a bleeding rectum,Â finally painful diarrhea.Â I try to focus on a catalog, a crossword puzzle.Â It hurts.
How many times do I wish I could go backwards, wave a magic wand, and not eat something, try something, that failed so…painfully?Â Â I wish I never tried TSO!
Back to sleep, heating pad on.Â Should I take 1/2 of a painkiller or not?Â No.
I have a beautiful dream.Â I am traveling, with all of my friends and family.Â So care free.Â I can eat without fear.Â There is so much food on our giant ship.Â Breads, fruits, pizza, salad.Â I eat with relish.Â We have a fantastic time.
I can hear the crash of the waves from my bedroom.
This time I do not make it to the toilet.Â I wipe off my underwear.Â My stool is a little more solid.Â But it hurts, God it hurts. It hasn’t been this bad since before the hookworms.Â You grow used to living with pain and then without it.
I feel so disappointed in this whole experiment.Â The hookworms were so magical, but I kept having to reinfect.Â And then I’m always dealing with other Crohn’s manifestations, like magnesium deficiency, the whole malabsorption, what do I eat? question every moment of the day.Â The TSO seemed like such a good idea at the time.Â Help heal the colonic inflammation.Â Until I can try trichurus trichiura.Â Until each dose made me worse, and now.
6:15 AMÂ BM # 3Â (or is it #10?Â Do you start counting at midnight, or dawn?) Ow.
Why can’t I have patience?Â Because I fear losing more of my colon.Â It’s happened once before.Â I only have 3/4 left.Â If only I had been more methodological, I could have prevented this whole mess.Â I am such an amateur scientist and I am experimenting on myself.
The day begins and roses flutter in the sunshine.Â My garden is so beautiful.Â I sit in my red rocking chair, bottom painful, but everything else is stunning.Â If I am sick and house-bound, at least I am in paradise.
My girls bound up and hug me.Â TheirÂ freckly faces ask me if I’ve heard from the dog woman.Â When are we getting our new dog, Mom?Â I don’t know yet, I tell them. I haven’t heard from her yet.Â We talk of other things.
And then pre-algebra amongst groans.Â My daughter’s and my own intestinal rumblings.Â I ignore my very sore bottom.Â They see me sick, but I smile and hide the pain.
I know I should have a colonoscopy, or just a rectal exam, because this feels too sore to be just hemorrhoids.Â But I’ve been so poked and prodded for over 22 years, part of me just doesn’t want to know. I don’t have a fever, so it can’t be that bad, right?Â I’ll be seeing my team of doctors up in UCSF on Tuesday.Â We can discuss the grizzly details then.
I’m on 40 mg. of Prednisone.Â I have to prepare for the BTeR convention and I feel like such a worm failure.
A flock of birds alight on my sunflower wreath, and there is a living sculpture.Â A hummingbird comes and stares at my daughter’s workbook.Â The beauty is breathtaking.Â But I hurt.
I cancel two jobs.Â I am trying not to mind.
We finish schoolwork, and they bound off to watch TV in Grandma’s RV.
I do an egg count.Â 500 epg.Â But there are dozens of eggs outside the grid, it doesn’t seem mathematically disproportionate.Â I count them all.
October 15, 2010Â Â 11 AM Stool consistency = pudding, frothy, bubbling 3 hrs. old
Egg count 1: 30 eggs outside the grid, 10 inside = 500 epg
Egg count 2: 25 eggs outside the grid, 10 inside = 500 epg
Note that my recent O&P test at the local hospital lab came back negative for all parasites.Â What use is testing, when I know I have a hookworm infection, I have proof under my own microscope.Â Incompetence?
It’s pretty gross.Â I sterilize everything and put on my apron.Â My friends are coming to help make pies.
I still have hookworms!Â And though they haven’t done anything to arrest the flare-up caused by the TSO (I think), at least they survived the onslaught.
Now, what do I do next?Â Wait?Â Add more hookworms?Â Try Cimzia? TT?
I let my chickens out and friends come over to peel apples. We have 3 disco balls hanging in front of the garage, so scattered lights splay out across our table.Â The little girl next door comes and sits with us.Â Her momma just had a baby 3 weeks ago, she proudly tells us all.Â The ladies chatter.
I have Crohn’s disease, but everything else in my life isÂ grand.Â It’s such a contrast. I try to live without the longing to be well.
I still believe in the worms.Â I just haven’t figured out the right formula yet.Â My microbiome is far from complete.