Bathroom Tax

This morning I bought a cup of coffee from a small chain restaurant in exchange for using their bathroom.

I gave away the coffee.

Is $2 a fair exchange rate for bathroom access?

In a strictly accounting sense, probably not.

But would I rather trade $2 for peace of mind and not having to go back home to change clothes?

Yes.

Would I use $2 as a goodwill proxy to encourage small chain restaurants to have public restrooms?

Absolutely.

It’s time to add a $5 bill to my poop kit.

Gotta pay that poop tax.

 

The Inescapable Jail of Chronic Illness

My commute home from work has become a choreographed dance routine, a formation composed of transportation interspersed with side trips to public bathrooms. The timing works perfectly–step off the train, waddle to the bathroom, and get back just in time to catch the next train.

It’s one of the many routines I’ve developed to cope with being in an active period of my disease–something which Caitlin Shetterly is also familiar:

When a person is sick – and chronically sick – nothing is normal. I have to say, I felt a bit like Christina in the famous painting by Andrew Wyeth – everything I longed for seemed just out of reach. And I was at such a tender time in my life – my son was a baby, I’d just handed in a book, I had friends and a family and a husband I wanted to be close to – and yet I felt boxed in by this illness that was like a kind of private, inescapable jail.

Yes–that is exactly it. So boxed in, that private life which is so narrow and utterly impossible to share with others. The routines and coping mechanisms we build up to function in the (brutal) real world, which most of the population would consider weird or pitiable or crazy. And the absolutely painful realization, every once in a while, of how different we are.

I’d really like to go hiking. It’s been months since I’ve been. But to do so now would be foolish, inviting accident and embarrassment. There are no public restrooms in the foothills of Mt. Hood.

If a friend invites me, I’d have to say no. I could try to explain why, but this sort of environmental micro-management is almost impossible to explain to people who have never lived with or cared for someone with a chronic illness that requires outsmarting at every turn.

I work within my own limitations–and try to do so cheerfully–but I recognize that they do prevent me from living an unfettered life. That life exists–I can see it on the horizon, especially on good days–and I can only dance towards it.

But I never quite get there.

 

 


The rest of the article is worth a read, too, for reasons having to do with propaganda, personal experience, and science–more on that later.

CCFA Patient Education Conference

The last Crohn’s and Colitis Foundation of America conference I attended…it must have been 15 years ago. I did attend a CCFA nutrition education session a year ago which was straight-up doctors office propaganda, as expected.

I doubt much has changed, but I’m interested nonetheless. These events are always good for meeting people.

2017 Crohn’s & Colitis Patient Education Conference – Seattle
Seattle University

Sunday, March 26, 2017
9:00 AM – 3:30 PM

 

Panels of interest:

  • How to safely and effectively use integrative medicine
  • Research: what’s next?
  • What the history of IBD tells us about the possible future of treatments
  • Breathing exercises for stress and anxiety

It’s free if you don’t want lunch (they’re serving GREEN SALAD and COOKIES to Crohnies, LOL).

If I go, I’ll report back.

More info here.

Does the Silver Bullet Exist?

A few years ago, I gave up on finding a cure for Crohn’s.

I distinctly remember the conversation I had with a friend. We ate at Little Big Burger, where she had a cheeseburger and crispy fries drizzled with truffle oil…and I had a plain burger on a lettuce wrap.

I was jealous of her fries.

It was in the middle days of my SIBO adventures, so I was learning that it really was necessary to take small steps every day toward my goal. I had to re-train myself into new daily habits centered around purging bacteria from my insides and my outsides.

Because of my increased focus on the daily grind, I had finally reached the (painful) conclusion that what I wanted–one simple trick!–simply didn’t exist.

Admitting it out loud, that hurt.

And I truly believed it. I still do. When it comes to dealing with long-term disorders that involve multiple bodily systems and a whole cornucopia of external factors, you have to chip away piece by piece so that each layer has a chance to recover and rebuild. Sometimes there’s so much “static interference” from inflammation across multiple systems that it is impossible to even know how bad the problem is.

Taming a chronic disease takes work. There is no silver bullet. That’s a fact.

However.

It’s still surprising to me how quickly my body can start to heal when I finally stumble on the “missing piece.” I do all this work to support various health systems, but it looks like there’s one cornerstone that is the light by which you see everything else.

In my case, I’m back fighting SIBO regrowth and ran out of a supplement that combines three different herbal antibiotics. Instead of buying the same blend again, I decided to see what would happen if I tried each component separately.

And guess what? One worked much, much better than the others.

The turnaround has been spectacular. Saturday I had to make an emergency pit stop for Immodium. Today I went 10 whole hours without needing to run to the bathroom.

Truly, it’s not a silver bullet–there’s still a lot of work I have to do, and I’m not magically cured all of a sudden–but it is like a switch has been flipped. I’m pointed toward health again.

There are no easy cures, but there are smart ones.

50 Shades of Gut Pain

Today, or rather at 1am last night, as I sat on the toilet for the first time that night, I started to ponder all the different “moods” of my gut. There are so many of them, and I have learned to parse out their different meanings so they are very helpful to me. What I’m not sure about is if I could communicate them to others.

I once sounded like a crazy person in my doctor’s office as I tried to explain that the symptoms I was experiencing (diarrhea, urgency) were not the same as Crohn’s symptoms (diarrhea, urgency) because they came at a different time of day. But this is true–over the course of my life, I’ve learned that a “normal” cranky, inflamed gut means symptoms first thing in the morning. Symptoms at another time of day, to me, mean something else. In this case, it was SIBO.

(A few weeks after that doctor’s visit I passed another SIBO breath test with flying colors, and–as the treatment started working–symptoms returned to normal.)

It’s those finer points of knowing my gut that can mean the difference between a peaceful commute and one where I’m praying with my butt clinched as tight as possible.

Or other things, such as:

  • The fine distinction between a wet fart and a fat, dry fart…before you let it rip.
  • Feeling when stool passes into the descending colon, and how fast it is travelling downward, thus dictating whether you get to walk or run to the bathroom.
  • General inflammation (my ten-year-old self called it “washer machine tummy”) versus a specified area of intestine with, say, an ulcer.
  • Feeling an especially intense bout of the Migrating Motor Complex and distinguishing it from garden-variety cramps.
  • And for that matter, discerning between uterine cramping and gut cramping. I don’t even think my own body can tell that one!

If you’re reading this, and can identify with anything that you’ve read, let me know in the comments below. I’d love to compare notes.

Fiber: Friend or Foe?

When you’re diagnosed with Crohn’s disease and having a hard time, your doctor will often put you on a low-fiber or low-residue diet. Same difference, really. Basically, eat soft, mushy, bland food – and lots of carbohydrates. Rice! Toast! Don’t eat a lot of vegetables!

And honestly, this works. Pre-digesting your food as much as possible helps your gut to rest. Cook your food. Chew your food. (And not in the gross mama bird-baby bird way, eww.)

For me, as I’ve navigated the SIBO/low-FODMAP diet oceans, I’ve sometimes doubled down on this idea, drifting into days when I ate very little plant matter at all. Just meat and fat, and maybe a little fruit or something on the side. It’s very easy to do when the wrong type of sugar sends your gut into a tailspin of gassy diarrhea.

But lest you think I’m going to do an about-face and preach the gospel of high fiber (or even worse, the RAW FOOD DIET), it turns out that eating less fiber is actually better for you. Too much fiber means such things as straining when you poop (no bueno), screwing around with your Nutrient Density QuotientTM, damaging your gut wall, and buying in to poorly-research nutritional theories (and nobody wants to do that now, do they?). TL;DR eat real, whole foods and you’ll get enough fiber.

However, let’s back up to “damaging your gut wall,” Or, as it is called by researchers1, “mechanical stress.” AKA: maybe why our guts hurt so bad after we eat food.

What this means is that fiber damages the cells in your gut, which in turn respond by producing more mucous. This might be good, if more mucous automatically meant better health, but that is unlikely since a common tell for poor gut function is an abundance of mucous in the toilet.

Moreover,

The scientists aren’t certain how many times cells can take a hit, but they suspect turnover is so high because of the constant injury. Potentially caustic substances, such as alcohol and aspirin, can produce so much damage that natural recovery mechanisms can’t keep up. But they doubt a roughage overdose is possible.

My gut can tell you that a roughage overdose is indeed possible. So can my coworkers, based on the day after I ate a raw kale salad with dried cranberries.

Also interesting is that aspirin–banned by my first GI–and alcohol–self-imposed ban due to its gut-destroying properties–are just as bad.

Don’t just take my word for it, though. Let Dr. Eades tell you the whole story.

 


1 Full study at PLOS Biology

Pavlovian Diarrhea

Every since yesterday, I’ve been thinking about the psychological underpinnings of diarrheic urgency. Why is it that I can play chicken with myself all day, but not feel that gotta go gotta go gotta go feeling until I am literally unlocking my door? How is it that most of the time (with a few legitimate exceptions) I can hold it together until the bathroom door is closed?

Sometimes I wonder if I’ve trained myself into a gut-brain pavlovian response.

When I’m going through a rough SIBO patch, like right now, there are times that I have to go to the bathroom ASAP. To counter that, I’ve learned how to tell when it’s “time” and act accordingly. But, as I’ve also adjusted my life into healing mode, my gut has been slowly improving. That means that the signs gradually change — but my reaction to them does not.

So now I’m stuck in a feedback loop where I’m hyper-aware of all my gut rumbles and movement, but where I’ll also run to the bathroom at the slightest provocation, which doesn’t help build up between-bathroom-breaks stamina, and so on.

I hear about athletes like Michael Phelps visualizing their races — imagining every kick, every breath, breaking down every turn and the last final moments of the race.

Instead of focusing on what can go wrong, Phelps focuses on what happens when everything goes right. He’s rehearsed it so many times, it’s ingrained into a click-whirr response. And so when something actually DOES go wrong, he doesn’t have to scramble to recover, he already has a mental tape to fall back on. A winning tape.

I’d wager that this strategy would also work for my feedback loop problem. Imagine a positive outcome: walking through my front door calmly, guts behaving all civilized-like.

I like it.

Playing Chicken With My Own Intestines

The rumble started as I put on my shoes.

I listened closer: not quite drop everything and get to the bathroom levels, more along the lines of polite gas advisory.

It was time to leave. I had to make a decision. I decided to chance it.

Walk to the train stop.

Catch the train.

Transfer to the shuttle bus.

Still good, no issues on my commute. The gamble paid off.

Things changed on my way home, however. Let’s shift into reverse.

Shuttle bus – no rumbles.

Catch the train – now things get a little interesting. Rumbles have reached the descending colon, which usually means it’s time to boogie. I mentally calculate the time remaining on the train vs the amount of time it would take me to get off at the next stop and find a public bathroom vs the severity of the rumbles. Once again, I decide to chance it.

Every few stops, my gut pipes up and reminds me of all it can embarrass me in public.

At this point, I’m committed. I leave the train at my stop, and set out for home at a measured pace. Fast enough to get somewhere, but not fast enough to catch wind or make things move faster.

As I near my front door, the urgency rises – the rumbling starts again – and I start wondering if I can make it. Stick the key in the lock, open the door. One of my roommates is hanging out with her dogs, and I blast past with the “gotta pee” excuse.

I make it to the bathroom just in time.

#hooray