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.

1)Soft toilet paper is expensive! And when you go to the bathroom 5X as much as the average person, you have to use that many more rolls. This is unfair. The economy toilet paper hurts if you wipe more than one time. But there is not much toilet paper on those soft rolls. Do you ever feel like you’re the only one replacing the roll in the bathroom and you just changed it a few hours ago? I want a toilet paper tax credit.

2) VSL#3…it’s the only probiotic they’ve done extensive double blind studies on. But it’s covered by insurance only if you’ve lost your colon and are suffering from pouchitis. I want my insurance to cover it so I won’t have to lose my colon and suffer from pouchitis. Where’s preventative medicine? The full dose costs $500 a month and I can’t afford that. So I take 1/4 a dose, or often 1/8 a dose. I could save money on toilet paper if I could afford my probiotics!

3) And who pays for the annual colonoscopy? First you have to buy the disgusting liquid that evacuates your bowels violently. Then you have to pay for that many more rolls of toilet paper. Gas to drive to the hospital, time off spent at work. And just to get the bad news that your colon is still inflamed, you get the co-pay of $500 – $1000 to make the news that much more difficult to stomach.

4) If you’re lucky enough to have insurance, and it will pay for your medicine, but you’re unfortunate enough to be on Remicade or Humira, there’s the $75 or greater co-pay for something that helps for only so long, all the time wondering if you’ll be the percentage that gets lymphoma, and then you’ll have to pay for that!

5) Food – It would be much cheaper if I could only digest beans. Or whole grains for that matter. I know how to eat and I know how to cook cheaply. The two include whole grains and pulses, which go through me rather rapidly, and then I use up more toilet paper! I could feed my family for $500 a month if only I starved. And if you’re on SCD, prepare to spend double on almond flour, 1/2 and 1/2, and vegetables that are often out of season. I’ve got endless kale in the garden, purple cabbage, and fava beans, but they all give me gas, and then I need more VSL and toilet paper, and in the end, I’ve saved nothing.

6) All those vitamin defincies cost money replenishing. Magnesium chloride for my foot soaks at night. Calcium citrate, magnesium glynicate. And iron, vitamin D, fish oil, B vitamins. We want to be healthier, we just can’t swallow the amount of pills it will take to get there. Or afford them when they run out. I have to admit, though, that CVS was having a sale on fish oil, so I bought a 4 month supply. And they don’t even cause fish oil burps! Now I can lower my inflammation AND prevent heart disease? The heart disease would be covered on insurance, but the fish oil that prevents it is not.

7) Hookworms, TSO and whipworms. I payed $7,800 for some worms. Call me a sucker. My insurance will pay for me to die from a fatal brain disease if I try Tysabri, but they will not pay for some worms to prevent me from needing Tysabri. I’ve read that people have gotten TSO covered on their flex spending account. I never got a doctor’s prescription for hookworms, nor was it from a pharmaceutical company, nor is it approved by the FDA. So thousands of dollars for some worms. Thank God for credit cards, before they reduced my credit to 0. The worms were worth it, but when we’re shelling out almost $10,000 for something that has lived inside of us and in the soil since the dawn of humanity, something’s gone very wrong.

Microscope, weighing scale, McMaster slides, and incubators. Because the FDA has ruled hookworms a drug, but will not pursue liscencing it in such a way that it could be covered like a drug, I have to figure out how to incubate the worms myself . This costs money and time! Where’s my worm equipment stipend? We should get bonus points for figuring this stuff out for other people, before the studies. Special credit for an artist with no scientific background. And educating my doctors. I don’t want an honorary diploma, I want the money it takes to earn one so I can pay for my damn microscope.

9) Let’s not forget the extra water, laundry detergent, and energy it takes to wash extra underwear. And the lifespan of said underwear is lessened from abuse. We need an extra underwear stipend. Do you panic when you are on the last pair? Do you have to go to a laundrymat and hide your laundry from fellow washers? Have you ever just thrown a pair of underwear away when you are caught out unaware that the coffee you shouldn’t have drunk has just kicked in? I once left a pair in the Museum of Modern Art in New York. I have such fond memories of shitting in my underwear while walking across the park for the first time! And then having to walk to the museum, wait for tickets, and find the bathroom eventually, realizing it was by then a hopeless cause. Since then, I’ve always kept a spare pair of underwear in my purse. And if you need Dipends at night, the humiliation of wearing a diaper in your 30′s should be worth something.

10) Let’s try not to mention the amount spent on Immodium over life. I could buy a second house.

11) And the co-pays to my psychologist lamenting the past. And learning how to live with the future.

12) How about work lost from the disease itself? I could have been an international spy, but I have Crohn’s disease. Instead I blog in the wee hours of the morning when I should be doing push ups and studying Arabic to prepare for my next case.

13) Let’s end on a lucky number. Maybe I’ll win the lottery and be able to afford endless soft toilet paper.

I am an artist, among other things, and I figured most people wouldn't appreciate a picture of the bloody placenta, so this drawing somehow captures the feeling post-miscarriage...

I always get from people, after explaining that I am using hookworms to control my Crohn’s disease, that I am very, very brave. I usually reply that it was scarier going to the oncology department of my local hospital and being hooked up to my first infusion of Remicade. Especially after almost dying from neutropenia caused by 6MP, after having tolerated it previously. There’s nothing like experts at UCSF shaking their heads, consulting with Cedars in LA and saying I was their first patient to react that way after doing fine with 6MP for years, and having been on it for months without issue. That was years ago, I’m sure there have been many cases since.

Kind of scews the whole percentage thing. I realized after that lovely episode that you either react to something or you don’t. It makes trying new things a little frightening.

And of course, I had a very unusual reaction to my first dose of 10 hookworms. First fever, increased diarrhea (though we’ll never know if it was a stomach flu I picked up on route to Tijuana, and all the disgusting bathrooms I had to stop at along the way.) Then, at week 3, I got edema in my ankles and such bad reactive arthritis that I could barely walk. I also had no medical support, as my doctor had never heard of using hookworms for IBD, and his parting words were, “Who knows what you’ll pick up in Mexico?” So I suffered in silence, getting through Christmas, the New Year, and being the first person to react so horribly to so few hookworms. I’m sure there’ll be many after me, again.

So what does this have to do with miscarriage? I finally had mine on Sunday night, and let me tell you, it is rough being a woman sometimes. It makes the edema and arthritis look easy in comparison. I’d been having a little blood and cramping the few days preceding it, so I knew a miscarriage was immenent, and an ultrasound a few weeks ago showed I never had a baby – I was the proud parent of a yolk sack and a fetal pole that had already started to dissolve.

So I started to bleed and put a pad in. We were ready – Recharge, even Gatorade on hand, lots of menstrual pads, and the phone number for the Ob/Gyn on call just in case. Neighbor’s car to borrow if needed. Mom staying in the RV.

First the contractions began, and they were contractions. I’ve had two children – natural childbirth, so I know contractions when I feel them, and these were 3 minutes apart, and about the severity of labor halfway to birth. I did the low aaaahhhs that helped me get through my second child, but finally gave in and took 3 Tylenol after my husband asked me, “why suffer?”

And then the bleeding began. And it was gushes of blood, no measly period like trickle. I had a towel under my butt in the bed, and a heating pad across my abdomen. It soon became apparent that I had crossed the “soak a pad in one hour go to the hospital” rule, and I started to shake and get nervous, since my last miscarriage ended up in the hospital, with a D&C that required an antibiotic in the IV that flared my Crohn’s, beginning the 3 year spiral into hell which resulted in me trying hookworms. I didn’t want to repeat that experience, and had already talked to the OB/GYN and said IF I needed a D&C I was going to take my chances and sign a waver, get no antibiotic, and if I ended up with a uterine infection, I’d deal with that later. I had almost fainted in the office when she discussed what could go wrong, so I wasn’t very brave about that option.

The bleeding got so bad I told my husband that we probably should just go to the hospital. But at that point, I felt a blob against my vagina, and got up to go to the bathroom.

“Holy shit!” my poor husband cried as blood spilled out onto the floor, across the hallway, marking a path as grissly as the CSI movies you see of someone stabbed to death. We joked later that the crime techs would pick up lots of splatter marks. I read too many murder mysteries.

The bathroom floor is painted an unfortunate white, and I continued to mark my path to the toilet. Like a horror show, I reached and pulled fetal tissue from my vagina, blood pouring down my hand, all down my legs, pooled into my soft “miscarriage socks” I had bought especially for the occasion. My husband brought a plastic container for the pieces of placenta, so we could bring them to the hospital if needed, or bury them under a newly planted bush if not. We like to put placentas under trees and have little ceremonies of life. We’re hippies that way, I guess.

My husband had called the doctor on call when the gushing had begun, and she talked to both of us, letting us know that if I wasn’t dizzy or passing out, and as long as the blood wasn’t continuous, that it was normal to have a lot of blood when the pieces were coming out, so I cleaned up as best I could, got the leftover Depends adult diapers I had from my bad Crohn’s episodes, and returned to the bed.

The process repeated itself several times, although this time I held the diaper under my vagina so I wouldn’t stain the freshly cleaned hallway. The trashcan quickly filled up with blood soaked diapers, as we had stopped with the underwear after several were stained and tossed in the sink for later washing. I made my husband come with me every bathroom trip, in case I fainted during the whole process. We had kept a heater going, so it was nice and warm. The plastic cup slowly filled up with disgusting pieces. At one point I took a shower and had to rinse off my legs and vagina, but as I was dripping a continuous bloody mess, it was hard to clean it up, and then the shower looked like a crime scene.

I finally stopped around 2 Am – about 4 hours of on and off goriness. I licked salt the whole time, drank lots of recharge, tried to drink Gatorade but I haven’t had corn syrup in over a decade, and it was disgusting. At one point I stopped for a bowl of yogurt and bananas to replenish. I have a homeopathic anti-anxiety pill that I kept putting under my tongue so I wouldn’t freak out that I was bleeding to death. It helped.

It took a while to go to sleep, my husband snoring at my side. The blood had died down somewhat, and I tried not to move. My diaper was uncomfortable, but I got used to that the months preceding hookworm infection.

The cramping has continued, like afterbirth pains. I’ve had to take tylenol every day and use my heating pad, since it hurts. My gut is a little unhappy being next to all of this action, but I’ve had some solid stools mixed in, just going more often, and I’m trying not to worry about it. I’m barely bleeding now, but feel like I’ve been through quite an ordeal. Tomorrow I do an ultrasound to make sure all of the tissue is out, and it better be out, is all I can say.

I think I traumatized my husband. Men don’t have to deal with blood every month. We’ve gone through so much together, between the horrible Crohn’s, the near fatal drug reactions, the hookworms. Two births. The real births were way less messy than a miscarriage, and we had a midwife who brought a level of competence to the whole situation. All he had to do was support me.

But I’m glad we didn’t go to the hospital. I’m relieved we made it through. I’m happy it happened after my girls went to bed, since I don’t really want to introduce the horrors of being a woman to them quite yet.

My daughter woke up and used the bathroom before I could warn her that there was plastic container full of bloody pieces on the counter. She said, “Oh, it’s no big deal, Mom. It’s much better than poo sitting on the counter. It doesn’t smell as bad.”

I’m raising such brave girls. This was just another Mommy ordeal, one in a series of strangeness that they accept as part of my life. I’ve done enough egg counts that they’re used to Mom playing with her stool. I show them the hookworm eggs under the microscope, enough times that they’re bored with the experience.

My God, though I’m glad that is over. I hope I never go through another miscarriage again. Getting infected with some measly hookworms seems like nothing.

The day begins at 12 AM, when I wake up from a dream and feel the sudden urge to have a bowel movement. I pull back the covers, try to disentangle myself from my cat, black out as I stand, so I bend over partly and recover my sight by the time I get to the toilet. Diarrhea comes out, then a little gas, a little more solid stool. My ileal-cecal valve, in the bottom right quadrant of the lower abdomen, is hard and stuck. I lean my elbow against it and tilt forwards, trying to get the feces and gas trapped inside to move. It’s hopeless, I’m done. I use lots of toilet paper, and my hemorrhoids itch. The stars shine through the window.

I sleep again, then rise at 3:30. The above routine is repeated, only this time I read the new seed catalogue in the dim glow of the nightlight.

5:25 and I’m at it again. This time I was trying to find a toilet in my dream. I sat on one, relieved, but it was in the center of a town square, for everyone to see. Why the public humiliation? I wake up and run. My underwear is soiled again. More liquid comes out, followed by the rest of the mess, blood pooling across the top of the mound. It hurts. I itch. I flush.

I stay up and take my VSL pill, check my email. My ilium’s still blocked, but it doesn’t hurt so bad. I make tea, an almond flour waffle, watch the sun rise, interrupted 2 more times with more bowel movements.

Another hour and my family is awake. Breakfast starts with a flurry of obligations. I pack their lunches, prepare their schoolwork. Depending on the day, they go off to their class or snuggle on the couch and I teach them integers, spelling. I garden. They play.

I am tired by noon. The day is done for my body, but the black tea gets me through another hour. Tea after cup of tea. Peanut butter mixed with melted honey and unsweetened chocolate. Blended chicken soup. Yogurt shakes. I make pasta for my girls, sandwhiches, salads. I make things I long to eat but snifff instead.

During this time, a pee becomes a poo. I squat and mucus dribbles down. I never know if I should include these in the number of bowel movements I have a day when I’m taking the CDAI. All I know, is the toilet paper supply is getting low.

By 4:00 I am face down on the bed. If I’m lucky, I get some gas out and the hardness of the ilium is relieved for a while. My husband makes dinner. I feel useless. I sit at the computer, perhaps. I watch my children create.

I eat the things I must and watch them heap their plates with garden kale. Beans and cheese, fruit, my homegrown lettuce. I eat my soup, I smile. I enjoy their faces, I love my husband. Perhaps I talk with a friend. I take a hot bath. Forever long for health.

Perhaps I watch the sunset. The chickens go to sleep. The stars come up. I take my VSL and go to bed before my children. They wake me up and kiss me good night, my husband doing everything else.

And so, another day.

I’m sure it must have been challenging, being the son of God and all, but I don’t think hanging from the cross depicts the ultimate in human suffering. Sure, you slowly suffocate, your ribs break. I’ll bet having a nail go through your hand isn’t fun, and hanging by that hand excruciating. I suppose after a few days of starvation, one starts to feel pretty bad. And all the while being taunted by your enemies must have been a challenge.

But Jesus didn’t have to do this for 20 years straight. He knew he was going to die, and the suffering would end. He didn’t have a lifetime of progressively worsening disease to deal with. He didn’t have pieces cut out of him, one organ at a time. He got to break bread and drink wine until the end. It isn’t written in the bible, but I doubt he had chronic diarrhea. He probably had worms.

This is one reason I’m not a Christian. Because I’m just not that impressed when they say Jesus died for me. I mean, that was very kind of him. But if he had lived to a ripe old age, suffered from some horrible disease the entire time – and touching his own sleeve didn’t work – then I would be more in awe of his sacrifice.

Jesus died to save my soul from eternal suffering. What do you do when the hell is now?

I’m mad at everyone. They promised, in the 80′s, that the 90′s would be the decade of the cure. I believed them! Yes, I was naive at the time, but please don’t stand at podiums and say such things to impressionable, sick teenagers.

Now I get promises that the information age is accelerating at such a rate that we are sure to get explosions of knowledge that solve medical mysteries at lightening speed! I sit like a wizened prune pit and don’t believe a word. I have been rendered a cynic by years of hope and failure. I can hold a tiny ipod in my fingertips, but what good has this all done for me?

I can now listen to music everywhere I suffer!

I’m still waiting for the cure.