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Tag: Crohn’s Disease

Traveling with Crohn’s Disease is a lesson in patience, and timing.

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Am I sad I missed two, three hour plus long boat trips with my wife and kids? Yes, yes I am, but the carnage I dealt to the bathroom said I made the correct choice to stay in and be within ten steps of the can the whole time. Having to pee off of a moving boat is one thing, but the guttural machinations of my innards are best left away from spectators eyes. It’s not a team sport, and I don’t need cheerleaders. Although on our last day I did get out to swim in the ocean and have an hour long ride with the family. I burned my legs and hands, obviously, but had a good time. Seas were a little rough going but I managed to not get seasick. Lovely! The aquamarine colour was to die for. A big expanse of nearly cloudless sky overhead, and salty sea waves to float in with my children. Next time we will try snorkel masks and breathers and attempt to skulk around a small reef to look at some fish.

I’m glad I had the time to wait for a better opening on the boat trips, so I didn’t have to forgo all of them. I had bought some fresh Twisted Tea, but could drink only one of the twelve. If my guts are in a better mood next visit I can try my hand at one or two more. I wanted a six pack, as that feels more manageable to me. But no glass on the pool deck, so the larger can assortment it was! I should have stuck with the original or just half & half’s, as the raspberry was not to my liking. Live and learn.

I was able to swim a fair bit atleast. Knowing there are clean toilets all throughout the grounds makes it easier to go and do something for an hour without worrying about having to run all the way back to my room to avert a crisis. Ha. I run to my room while it runs down my leg. And what a glorious couple of runners we are. Argh!

It was 16°C here the day we came home but it is now 2-5°C and rainy. Gotta love it. I’ve gone grocery shopping, and answered a few emails, and done a little work today. Off to a good start. Take care out there. Ciao Bella!

MRI Appointment Day is Finally Here!

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Going down to the hospital later this morning for my long awaited MRI. Well I say long, but I think it’s about six months, so not totally terrible. I am fasting for it, which sorta sucks, but I usually don’t eat breakfast until close to nine am, so what’s another two to three hours on top of that. No big deal. Time to get in there and figure out if I do in fact have any, one, or multiple bowel constrictions or obstructions. This scan will dictate how we proceed. Do I get to leave things as is because there aren’t any extra issues above and beyond my current Crohn’s diagnosis, and I just live with things and deal. Or are there obstruction(s), how large are they, where exactly are they, and do they need to be removed. If surgery is the option, can it be done laparoscopically with much smaller incisions, or do they need to properly disembowel me like a velociraptor would, spilling my guts in order to search for the offending bits, and do the removal that way. That, I fear, will entail an extraordinarily long recuperation time, pain, bleeding, stitch or staple removal, antibiotics and infection control over a period of months because I, historically speaking, heal very, very slowly. Ugh. Worst case scenario is they find other ‘things’ that lead to the obstructions and I get referred to a whole different set of specialists. Fingers and toes crossed that that option stays well and truly far the fuck away from me. Please and thank you.

I have the details and directions in hand for how I am to proceed this morning at the hospital. Not going to lie, my guts are churning this morning. That’s not all that unusual, but perhaps the presence of the churning will add some insight to my doctors and care givers about my particular case of Crohn’s Disease. I would love for this to help me, but I’d be good if it added some additional understanding that helped others like myself. I know in my younger years my file was used as a case study at medical conferences, and retreats. So, yay! Indirectly helping and getting published in medical journals. Noice! Toit! Without having to write a single sentence at that.

I took a few minutes earlier today to remove my wedding ring just in case that would interfere with the imaging equipment. Took me longer than the 90 sec I thought it would take to unburden myself of my wedding band. Gaining weight has weird knock on effects. Ha. On that note I have worked out a little every day for twelve days now. That’s a good streak for me anyway. Nothing too crazy. Push ups, squats, various leg raises, and sit ups, jumping Jack’s, and the occasional burpee. All body weight for the time being. I’m going to see if I can keep at it myself before I go and add in a monthly gym membership cost. I start strong and fizzle. So best to see if I can make it a habit before dropping even more money on ‘stuff’. I’m trying to be fiscally responsible here folks!

Have a terrific Thursday February 15th, of 2024. Ciao Bella.

Aging with Crohn’s Disease…

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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.

Up before 5:00 am…

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Too scared she’ll miss the bus for the Royal Ontario Museum trip today. Not that the bus isn’t going to leave until around 9:00am or anything. No, had to be up and dressed, waiting at the door before I even woke up this morning. Lord knows what the kids will do come Christmas morning!

We did hit a small snag, in that our usual vehicle is in the shop for repairs so we have a borrowed vehicle for a few days. One that does not contain an ice scraper, so I had I sit in it while it warmed up enough to clear the windshield. Then I used the blade of my hands to clear tactical spots on the side windows so that I could see out, and use the mirrors. The spare scraper from inside the house has gone missing, which I wasn’t aware it had even been used yet, by anyone. So that reserve item needs to be found and/or replaced sharpish. Crisis was averted and we made it to school without too many tears or outbursts from either kid. The youngest has had her nose out of joint for a few days due to all the build up concerning the bus rides and ROM trip into downtown. She is a jealous little beastie. Not good with expressing joy for others if she isn’t getting anything out of the situation either. We will need to work on that. But, in the end I got them to school, dressed, and without tears being shed. A win for me, a slight one at that, but I’ll take it.

My lone nostril issue seems to fade in, fade out as the days go by. I have noticed that when I take my temperature it can range from anywhere between 35.6° to 37.1° Celcius. Which seems weird to me. But no positivity on a RAT, and no other issues I can think of. Fatigue has subsided, almost as quickly as it came on, but that’s pretty standard for me. Nasty guts is no barometer to go by for me for new or worsening illness, so all things being equal, that’s par for the course in my life currently. I can breathe out of both nostrils no new head aches. No sore throat. No cough or lung/rib pain. Sense of smell and taste are very much alive & well. Possibly just a cold? Hard to know at this point. It wasn’t all that bad. Just felt kinda off. Not wretchedly ill, as with other nasty bugs we’ve caught before.

Funny story, I developed Crohn’s Disease about six months after having the worst flu of my life, one Christmas when I was twelve. My grand parents were visiting from England that year, and I was in my pj’s, lying on the floor of the family room watching tv with my family, when I burped out of no where. And I remember turning away from the tv to tell my mum, “I can taste rotten eggs”. She gave me a puzzled look, and by the following morning I was feverish, and vomiting and having all sorts of gastric distress.

Do you remember that old Tom Petty music video about Alice in wonderland where her body becomes cake and the mad hatter and the rabbit eat her as she watches and screams, while lying on a table? That happened in my dream. And a dark black room, with white and black checker board floors began to get longer, as if the rear wall was falling away, and the floors curled, and buckled, and bulged, as my bed became all topsy turvy like a Tim Burton film set. I had days of a high fever, and had the same fifteen seconds of dream a thousand times over on repeat, until it just cleared up and went away. – Then one late May afternoon when at Canada’s Wonderland on a school trip Crohn’s Disease decided to make itself known to me, and that has been my life ever since. That was 2013. Fun times. Weird memory to recall so vividly. Huh. I am not entirely sure if that was when I developed the grey forelock of hair that I’ve had since forever, but is not in any childhood photos before my early teens. Could be. Or maybe not.

As of 4:48pm today we are officially into winter! A new season is upon us. And the shortest day will happen, and then the evenings will ever so slowly begin to get lighter later. Just a handful of seconds per day. I hope you have a wonderful winter break. And have restful holidays whatever you celebrate. Take care out there. Ciao Bella!

“Babe, can you come upstairs, Sarah’s been sick again…

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And it’s all over her bed sheets, her carpet, down the hall and seeping into the heating vents by the toilet.” With fuzzy, light blinded eyes I catch a glimpse of my wife walking back up the stairs from the landing. Pulling my sheets back, I feel the bracing chill of the late night air in my room. “God damn!” I blurt out as I step down, bare footed on the cold vinyl flooring, it feels like I’m standing on a sheet of ice. Lumbering half awake, I come to the stairs. My legs not yet functioning, my ankles creaking along with the old steps. Rubbing my hands on my thighs, feeling the fleece of my pants against my palms. Flexing my fingers, I mount the last few steps. Coming to the main floor I’m hit with the stench of it all. From the bathroom I can hear my daughter weeping, my wife a gentle murmur in the distance. I can hear snippets of their conversations…”No, no baby, you’re not in trouble, it’s ok, don’t cry, I know, I know.” There is a flurry of activity as my wife strips off the soiled pajamas and lays down towels to soak up some of the mess. I turn down the hallway, and grab a mop and bucket. I squeeze out some lemon scented soap and I can feel the steam from the hot water. The vapour is condensing on the cold window over the sink, rivulets of water pooling at the base of the sill. I pull down some paper towels, and grab an old plastic bag from a drawer. It’s sticky, and has an old crumpled up receipt in it, something that was beige had been in this bag.

“You two go curl up in bed, I’ve got you some water to drink, and I’ll strip off your bed after I wash the floors.” It’s the same script as before. We’ve done it so many times, I can move through the motions without having to think about it anymore. Afterwards I’ll fall asleep on the floor of my daughter’s room. I crash about, like a drunk searching for a full bottle among all of the empties strewn about the house. The smell is what gets me, never the sight of it. How can so much come out of such a small child. Looks the same, regardless of the end it originated.

After a time, I notice there is a sliver of light in the master bedroom, standing in the hall I can hear softly spoken words, lilting in a sing song fashion. Sarah is falling asleep in my wife’s tired arms. They are sharing a pillow as they cuddle. I can see sweat on my daughters brow. “This fever just won’t fucking break”. I say it aloud, but quietly, to myself. I need to grab more pain meds from the drugstore tomorrow. Turning from the doorway, I shut off the lights, and I collapse onto a pile of stuffed animals. Everything goes black.

Living with Crohn’s. [warning: GRAPHIC CONTENT]

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This has been an entry I have meant to write since I purchased this blog space on WordPress, but I haven’t really managed to put what I want to say down in words as of yet. I came by Crohn’s Disease honestly (not sure there are other methods other than sudden trauma, sickness or stress, and in my case genetics). So why now, well I was fully diagnosed in 2005 after I graduated from University (I had all ready graduated from a 1 year college program at this point with some interesting developments in my illness & symptoms). Up until now, that had been the last year of a major flare up and a follow up colonoscopy. I haven’t had a flare up, but since it has been 8 years, and a new gastro Dr, and some changing symptoms we felt it best to have a poke round.

Part of why I am writing is that as a thirteen year old tween, I felt pretty different, and uncomfortable, and had some unpleasant bouts of depression, and low-ish self esteem. But Crohn’s isn’t a reason to give up on everything you enjoyed before being affected by it. Mind you, while I had a nasty and confusing case, I haven’t needed a Brookes ileostomy, or a colostomy bag (so I count myself as lucky). I do have a very ulcerated bowel, a mess of a Duodenum and ileum. The next step up in prescription medication are the Biologics, and that’s about $25,000 a year. So yes even with the pain, and blood and threat of a stress induced flare up I count myself lucky.

You can go to school, play sports (I wrestled and played soccer in between flare-ups in high school, and played Rugby and rowed a little bit in university) I also sang, danced and played trombone from grades school through until university. All in all, over my high school career I didn’t miss that much time to illness, although my roughest patch from what I recall was about 1-2 months off school. I had good enough grades prior to, and was doing homework issued to me by some understanding teachers, that I was able to pass on to the next school year uninterrupted. Yes there were a lot of sucky, sad, depressing weeks and months interspersed in there, but it gets better with age, and as you build character and gain a better perspective on what really is important. As shitty as I felt, I didn’t have cancer, and more likely than not this wasn’t going to outright kill me. Even when it felt like it was. So chin up. Find a hobby you can do sick or healthy. Drawing, painting, singing, playing a small to mid size instrument. These things will keep you in a happy place when everything else goes to pot.

I was about 13 years old when I had my first bout. I had been really ill over the Christmas Holidays (as was the usual case for me when vast quantities of food was available) I think I had a crazy flu, that led to some nasty night sweats and hallucinated dreams, and general unpleasantness. A few months later while on a school graduation trip (Grade 8 Wonderland trip). I ate some questionable items from a snack bar and then spent about 5 hours in the mountain toilet feeling like a balloon was inflating and then constricting in my bowels. By far not the worst bout I’d had, but for a first introduction it was enough. Then the big symptoms sort of went away, and I spent a great amount of time feeling bloated and uncomfortable after every time I ate (anything, could be fruits, vegetables, meat, poultry, sugar, starch, water, rice etc etc…) all of it left me sore and in some sort of gastric distress. By the time I was sixteen, and in high school, I was going to the toilet about 16 – 20 times a day (Gas, mucous, and lots of abdominal pain). I had a few odd moments of throwing up in my principals car one time when he was the only one available to drive me to my Dr’s office. (Did I mention that at that time I lived in rural Ontario (Erin. Pronounced Air-in to those who weren’t born there, and Ear-in to those who were). Any way, I had a fair few occasions where I had to rush to one Doctor or another for a shot of Demoral or whatever in my hip/butt.

I was put on Diecetel, and had a stash of some other prescription that dissolved on the tongue and numbed everything from my mouth to my anus. (Levsin I believe) or some such like that. I had a few colonoscopy’s and gastro-oscopy’s (4-6) of them between 15 -18 years of age, and they all turned up inconclusive. Seems my body does a good job at camouflaging any internal damage. Later I would also find out that the effects of Crohn’s on your innards is very similar to that of Celiac Disease. Although with drastically different methods of control and containment.

There is about 20 years of stuff I can tell you. Gory details, and graphic explanations of things that happen to your body. Take vitamins early on, and although you may vomit an awful lot, protect your teeth with as much vim and vigor as you can muster. Hair grows back, and looks a whole lot nicer after a lengthy flare up, but your teeth & bones not so much. In between flare ups you should really try to maintain a work out regimen. Stay positive, and stay healthy.

Anyway, with a scope to under go tomorrow, I just thought I would take some time and put some thoughts down on paper, such as it is. I’ll have more to say on this at a later date.

Cheers! -M