Aging with Crohn’s Disease…

Over the last month or so the new normal is feeling fine, followed by an emergency broadcast to use the bathroom which has roughly 30-60 seconds to comply before calamity. No other sense of impending doom is given. No thirty minutes out tummy rumbles. No bloat. Just all’s fine, then Go!, go, go, go, ahhhhhh shucks.

So that’s a fairly perfect snap shot of my life over the last thirty days. Living with intestinal issues has been challenging to say the least. I’m nothing if not adaptable to the realities of my new normal, as it alters and fluctuates every so often, year in and year out. I’m far better off now than in my teen years, or even my early twenties. So don’t shed any tears for me. I am accustomed to taking very seriously the realities of my particular brand of illness. It cares not one whit for how things used to be, or any markers or indicators I used to use to gauge my internal gut health. Not knowing your bodies signals right away is weird. I have to live through it enough to be able to piece the new way together. Do I get cause and effect, coincidence, correlation jumbled? Yeah – yes I do. But if this new way stay stable long enough you can narrow the signals down to what is random noise, and what are the new big sign posts I should pay very close attention too.

Acid reflux and heartburn aren’t new, but the increased frequency with which I deal with those is new to me. Drinking pint glass after pint glass of water has helped out. Eating less dairy per day is usually a smart play. Finding the right balance of veggies and fruit that doesn’t make me feel as though I have swallowed broken glass. Needs to be enough to keep me healthy, but not enough to trigger my ulcerated bowel.

Anyone with intestinal issues has probably internalized a certain (***TMI WARNING***) personalized colour chart, a sense for the sickly sweet smells our bodies produce, and a Richter scale for intestinal rumbling that we use to chart out and/all travel plans, or how far from a restroom we’re willing to be and for how long. In my youth I had to plan out my routes to events or places by what bathrooms were on the way, and whether or not I had to buy stuff to access those bathrooms, and if the owners / operators were ok with a running in and blowing ass all over the insides of their toilet stalls. I never left a place looking any worse than I found it, but I can’t say the same thing for anyone else.

So how is your Lazy Sunday going? The weather has had the humidity drained off, thankfully. Yesterday was rainy, but it opened up into a lovely Saturday afternoon & evening. Sunny right now. Somewhere around 18°C, no visible sign of a breeze. I have dome quarterly meeting this evening for the Non-Profit whose board I sit on. That should be about 60-90 minutes of my evening planned out.

The fundraiser for Erik was a success, we raised the $25,000.00 goal in roughly 72 hours or so. As the goal was met, and now exceeded, I plan to close it down come Monday morning. I have toggled my intent to stop accepting donations, and will finalize those plans tomorrow. With the expectation that all funds go into a trust for Erik to be used for his grief/trauma counseling needs until he reaches eighteen. I have faith that it will be enough to last the full eight or so years. A massive thank you to everyone whom donated, and made this fundraiser possible.

As I sit here doing the prep for yet another…

Colonoscopy, I am reminded of just how difficult it was to be in high school with an undiagnosed case of Crohns Ileitis. The trick was trying to get through all of my classes whilst also having to make upwards of eighteen or more trips to the toilet on any given day. Every day I can get chills thinking of that building pressure in my abdomen, just churning away. It made me wish for one of those relief valves they put on cows with an open flame, when they get too much methane trapped in their stomachs, and you can lie the cows down, and they go off like a gut powered Bunsen burner. Oh, the relief that would have provided me at the time. I could have killed for something like that. And I will tell you what, you may think, ‘Oh, you wouldn’t do that, in high school? No way! , you’d feel too ashamed or indignant!’ , and I’d say, after the twelfth pit stop in the men’s room, that I frankly don’t give a shit, and I want this bloating and belly crushing pain to go away, if only for a few hours at a time. I had some real doozy days in high school. I puked all over the inside of my principals Benz on a trip to my doctors office at one point. I know I’ve thrown up inside the office a few times. Had to race home in order to change clothes on many an occasion. IBS and the like are not glamorous maladies. Not to mention all of the fatigue and depression that follows closely behind. Oh, some of it was just awful. Any one with stomach or bowel issues understands the adage of “Never trust a fart”. All too well. But I’m a lucky one, I’ve been in remission for the better part of a decade or more. I had one flare up several years ago, but that was brought on by Mono/Epstein Barr, and I don’t really count it. It still lasted about three months, and required a nine week course of steroids, but eh, not my doing, so I don’t count it. If you want to hear some funny and embarrassing stories, get into a room full of people with moderate to severe Crohns or Colitis and listen to them tell very humbling stories of missed body cues and being mere steps away from the salvation of a toilet bowl, sink, drain, bush or a bucket. We’re a riot when we’re not laid out with a thousand yard stare, and intestinal cramps that feel as though they could crack vertebrae. Here I am, one of the lucky ones, so… yeah. Get yourselves looked at if something feels amiss.