A Day in the Life of Crohn’s Disease

1 AM

It hurts.
I almost make it to the toilet.  The stars are out, the nightlight glows softly.  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,  finally painful diarrhea.  I try to focus on a catalog, a crossword puzzle.  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?   I wish I never tried TSO!

Back to sleep, heating pad on.  Should I take 1/2 of a painkiller or not?  No.

I have a beautiful dream.  I am traveling, with all of my friends and family.  So care free.  I can eat without fear.  There is so much food on our giant ship.  Breads, fruits, pizza, salad.  I eat with relish.  We have a fantastic time.

4 AM

I can hear the crash of the waves from my bedroom.

This time I do not make it to the toilet.  I wipe off my underwear.  My stool is a little more solid.  But it hurts, God it hurts. It hasn’t been this bad since before the hookworms.  You grow used to living with pain and then without it.

I feel so disappointed in this whole experiment.  The hookworms were so magical, but I kept having to reinfect.  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.  The TSO seemed like such a good idea at the time.  Help heal the colonic inflammation.  Until I can try trichurus trichiura.  Until each dose made me worse, and now.

6:15 AM  BM # 3  (or is it #10?  Do you start counting at midnight, or dawn?) Ow.

Why can’t I have patience?  Because I fear losing more of my colon.  It’s happened once before.  I only have 3/4 left.  If only I had been more methodological, I could have prevented this whole mess.  I am such an amateur scientist and I am experimenting on myself.

The day begins and roses flutter in the sunshine.  My garden is so beautiful.  I sit in my red rocking chair, bottom painful, but everything else is stunning.  If I am sick and house-bound, at least I am in paradise.

My girls bound up and hug me.  Their  freckly faces ask me if I’ve heard from the dog woman.  When are we getting our new dog, Mom?  I don’t know yet, I tell them. I haven’t heard from her yet.  We talk of other things.

And then pre-algebra amongst groans.  My daughter’s and my own intestinal rumblings.  I ignore my very sore bottom.  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.  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?  I’ll be seeing my team of doctors up in UCSF on Tuesday.  We can discuss the grizzly details then.

I’m on 40 mg. of Prednisone.  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.  A hummingbird comes and stares at my daughter’s workbook.  The beauty is breathtaking.  But I hurt.

I cancel two jobs.  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.  500 epg.  But there are dozens of eggs outside the grid, it doesn’t seem mathematically disproportionate.  I count them all.

October 15, 2010   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.  What use is testing, when I know I have a hookworm infection, I have proof under my own microscope.  Incompetence?

It’s pretty gross.  I sterilize everything and put on my apron.  My friends are coming to help make pies.

I still have hookworms!  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?  Wait?  Add more hookworms?  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.  The little girl next door comes and sits with us.  Her momma just had a baby 3 weeks ago, she proudly tells us all.  The ladies chatter.

I have Crohn’s disease, but everything else in my life is  grand.  It’s such a contrast. I try to live without the longing to be well.

I still believe in the worms.  I just haven’t figured out the right formula yet.  My microbiome is far from complete.