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It’s Been a Good Run

Once again, it has been far too long since I posted anything… excuses are many.  I have several drafts of various topics sitting in the wings – relationships with a chronic disease, working & being productive, some food posts complete with recipes and even a tattoo post!  I don’t know if writers block is a thing for a less than regular blog poster, but I certainly feel stricken by something like it.  Life, time, exhaustion, I could go on, but I will spare you.

But, this week, I had an extra large helping of reality and I need to put it down on paper, as it were.  And, what I REALLY need is some conversation & advice from my fellow IBD warriors, friends, family and suffers alike.  As I have mentioned before, I have always considered myself very lucky in terms of my disease – I am alive, I have all my bowel, can count all my notable flares on one hand and my symptoms have remained under control…. until now.

Truth time – for several months now, I have been very aware that my Crohn’s has been less in remission, more front and centre than I cared to admit.  Food sensitivity is at an all time high, sending me back to the early days when I had to plan my meals & snacks around where I was going to be.  Have a meeting at 1?  Better eat by 11:30 so you have plenty of time to get it out of your system.  Mornings have become a crap shoot (hahaha, accidental puns are the best) – I can get up at 5am and STILL be late for work because it takes 45 extra minutes before I can leave the house, and I may have to stop at Tim Hortons during my drive as well (Tims and MacDonalds are the best for bathroom stops).  My stomach makes so much noise during the day that my office mates are sure it’s possessed.  There is blood and mucus again, not all the time, but often.  Cramping, bloating & urgency are just part of my day to day routine now, and I have just adapted to it like it’s nothing.  But, I have also developed some new complications, things I have never experienced before.  Abscesses, obstructions, strictures, fistulas – all new and fun words I have had the pleasure of learning about in-depth over the last few months.  I mean, I have adjusted to all of this like a champ, I have changed my routines, add more time for bathroom breaks at the gym, stick around extra time after eating out, my work days are far more structured than anyone around me likely realises and in general, I had convinced myself I was A-OK.

Earlier this week though, I headed to a regularly scheduled GI appointment, and my little glass bubble of denial came crashing down around me.  It was already an appointment I was dreading, as I have been debating requesting a referral to another doctor (hang tight, you will get an idea of why…), but after sitting in his waiting room for 90 minutes PAST my scheduled appointment, I was just anxious to get my new RX for Immuran, my new blood req. form and be on my way.  Instead, we discussed, out loud, what I didn’t want to hear – that the symptoms I am describing means my disease is very much active.  His thought is that Remicade is not working as well anymore, he casually mentions that he is going to change my medication from Immuran as a supporting drug to something new – Meth-a-something or other, it’s being more widely used now.  Ok.  We discuss scheduling a blood draw during my next Remicade appointment, ok.  He tells me he will likely want to do a scope again soon – well that sucks, but ok.  He is concerned  that my abscess, which will NOT go away, is actually a fistula…. and hearing him say it outloud, I know I have suspected it for a few months now too.  He wants to make sure there is no stricture developing.  Damn, ok.  Oh, and if this new drug doesn’t work out, we may have to look at surgery later this year. Uh…wow, not ok.

Needless to say, I left his office in a daze – prescription in hand.  But it’s not until I get to my office that things start to get a little worse for me… see, it’s METHOTREXATE he has scribbled down on this piece of paper, and that sounds familiar.  All he has told me is that I will take it once a week and should “think about taking Folic Acid” with it.  Let me tell you, this is the understatement of the year, and I can tell you now that if I was kinda considering looking into changing GI Doc’s before, I most certainly am now….

Methotrexate.  I knew it sounded familiar, I have heard of it before.  Perhaps you have too – know what else it’s used for?  Chemotherapy for Lung & Breast Cancers.  What else?  Abortions.  OH, and lately, treatment for auto-immune diseases like Crohn’s & RA.  I should state, before I go on, that with what I have read online on medical websites, it is supposed to have a good rate of success for situations exactly like mine – moderate to severe Crohn’s Disease that is no longer responding to a treatment like Remicade alone.  Ok, positive aside… and forgive me, because right now, I am finding it VERY hard to be positive.  This drug that my GI casually handed me a script for, as if he was putting me on an anti-biotic, is huge – I will say again, it’s used for Chemo freaking Therapy.  Abortions.  Obviously, in my case, it’s given in a lower dose, but it still causes some fairly significant side effects… nausea, vomiting, exhaustion, hair loss, mouth sores, liver problems… and it is so toxic to an unborn fetus that even males who are attempting to have a baby or have a partner that is already pregnant should not take it.  That Folic Acid he suggested I might want to take?  Yeah, that’s an absolute requirement, not a suggestion or option.  Methotrexate depletes the level of Folate in your body, Folic Acid is the synthetic version of that is absolutely your only shot at reducing side effects.

Devastated.  That was my first feeling.  Something you may not know about me is that I have very much wanted to have my own baby for some time now.  I am with an amazing man who is an incredible father to two beautiful girls, and I have been fortunate enough to become a step mother because of it.  But I want one of my own.  My baby drive has been EXTREMELY HIGH for the last year, and I was really very sure that within the next year, I could be getting the ok to get pregnant – afterall, Remicade has been approved for pregnancy, and I was quietly excited.  I am not getting any younger and the news that my disease is active and the medication option given to me is used for ABORTIONS speaks volumes to my chances now.  Even writing this is painful – tears have been a super common accessory for me as of late.

Terrified.  That came next.  I was not given any indication of what I might expect once I start taking this medication from my Doctor – I got to find that out sitting at my desk at work, following my appointment.  Reputable medical websites list significant and scary side effects, but more than that, posts in forums and blogs I have found online confirm they are far more common than not.  I tried to stay hopeful, since technically Immuran and Remicade both list serious side effects as well, and knock on wood, I have been very lucky there.  But my hope fades quickly – I posted on my GutcheckYYC instagram, asking for feedback and experiences from others, hoping I would get many “it’s not that bad” or “it’s working for me, worth a few side effects!”.  Those posts didn’t come… instead, I got stories of medication induced bulimia due to the vomiting.  I got stories of hair falling out and spending 24 – 48 hours after taking it in bed because it affected people so badly.  I found out it can be taken as pills (as was prescribed to me) or can be self injected once a week.  I got MANY response from folks saying it might have worked, but they couldn’t take it long enough to give it a chance – 3 months of vomiting for a few days each week hardly seems worth it.  Bottom line is, I have become so enveloped in these horror stories, I cannot even focus on anything else.

This weekend I took the RX to my pharmacy, after some great advice from many friends and family, hoping to get started on the Folic Acid and further educate myself.  Instead, I left frustrated and even more concerned.  For starters, I need a prescription strength Folic Acid, over the counter doses are not high enough… he didn’t give me one of those, so I have to wait until the pharmacy can reach his office to correct that.  I am told I should be getting blood work on a very regular basis to monitor, among other things, my liver function because it could have some issues.  I am told I cannot take any NSAID’s at all while on this drug – I know, I know, you shouldn’t with Crohn’s anyway, but when you suffer from migraines as I do, taking nothing is hardly an option.  Bottom line here is, I am facing one of the biggest decisions I have had to make since I was diagnosed – what do I do here?  I need some help.  I need some folks who have had experience with this drug to reach out to me… I’m begging someone to tell me a success story with it and Remicade together.  I am praying for a response from someone who can tell me the side effects are out weighed by the fact they are in remission and have seen success despite it all.  I don’t know what to do here.  Do I want to get on the operating table?  Hell no.  Do I want to become sicker and sicker as Crohn’s advances further?  Absolutely not.  But, do I want to take something so toxic?  How do I proceed?  I just do not know.  As I had to leave a fun event on Friday night early because a trip to the bathroom revealed I was  bleeding, I think ok, maybe I need to do this.  But then the bleeding stops and I spend the weekend busy with workouts, errands and dates with my man and I wonder… if I start taking that, does it mean I won’t have the energy or ability to do these fun things anymore?

So that’s where I am at.  I won’t lie, I’m kind of a mess.  I tear up very easily, I am having nightmares.  I don’t want to be a burden to my family, to my friends.  I don’t want to lose my hair 😦  I don’t know what to do yet.  Don’t worry though, I am not just sitting idle, waiting for an answer to magically appear.  Part of my process is doing this blog – open conversation helps me sort stuff out, so lay it on me.  I have emailed my coordinator for Remicade to ask about the process for requesting a second opinion/referral to a new doc as well.  Bottom line here, whether I take this medication or not, I am a human being and do not feel as though I am treated that way – I feel like I am a number.  I should be allowed to play an active and invested part in my own health and treatment plans, and that is not an option I feel I have with my current GI.  I am also going to make an appointment with my Family Doctor for this week to discuss this new medication as well.  I am not going to put anything in my body until I understand it.

And now, it’s time for me to go pour a glass of wine and start dinner… because if not for any other reason, I am going to do my best to lead a productive life, to the absolute best of my ability.  I spent my day meal prepping, I have a week left in my 60 day challenge and I am going to crush this week no matter what.  I want to thank you as always for reading this far, truly, it means the world to me.

I promise to keep you updated, and I promise I will do whatever I can to stay healthy… just don’t know which way that takes me… yet.

 

New Year… Same Me?

Just so you have a visual, I am currently using a scarf as a blanket because it is so bloody cold in Calgary right now, I don’t think I have been truly warm for coming up on a week now.  We are talking -31 with wind chill, snow and ice everywhere, 2 hour commutes home and cars that don’t want to start – it’s that soul sucking cold that makes you want to crawl into bed with a heating blanket and just sleep until spring.  I’m telling you, those hibernating animals are onto something.

Anyway, I digress, the whole point of today’s post is to set up some goals and intentions for this week, month and year.  I decided a long time ago that resolutions at New Years were a solid thought, but kind of a futile exercise for me – I will admit, I hardly ever keep them and really just feel like it’s setting myself up for failure.  It’s always the same anyway – eat better, exercise more and consistently, drink less, be a better person, smile more, be an adult with your money… guess which one of these is hardest to keep?  So instead, this year, my “resolution” is to just be more goal orientated – short term, long term, and some in between.  I’ve set up a few things for myself to hopefully put me in a better place to get a lot accomplished this month, so here’s hoping (especially since it’s already almost half over…).

First thing’s first – as always, fitness and nutrition are making their appearance as the staring role, however this year it’s different.  This year, it’s not about specifically wanting to lose weight or fit a certain standard of appearance, it’s about wanting to feel better, be stronger, be healthier in general – that means a balance in all things.  The weight loss should come as a side affect of that, but it’s not my primary goal.  This year, my long term goal is simply to be a stronger, healthier and happier version of me – not just physically, but mentally as well.  Food and I have been in a life long love/hate relationship that often consumes my every waking minute.  Listen, I LOVE food, I love eating, I love the culture of it, I love eating out at a restaurant with my man, with a nice glass of wine.  I love going to a pub for wings & a few pints with friends, and I LOVE ordering a pizza and curling up on the couch and watching a Hockey game or a movie. I love cooking big meals for friends, I love having good left overs for lunch the next day at work.  Getting the point?  And here is the thing – that is ok.  What 2017 is about for me is being ok with that, and putting a balance in that allows me to also be happy with myself the next morning.  As for the working out, I’m going to focus on my love of that process too, because I also love walking into the gym, preworkout surging through me, settling into my routine and the feeling of accomplishment that follows.  I love being sore the next day, I love seeing the progress, and most of all, I love the confidence that it all creates.  See what I did there?  That’s a balance.

This year, I am also going to be nicer – to myself mostly, I try to be a good person to others, but I’m sure I could work on that too.  I’m going to be a better Mom, a better wifey, a better friend, a better daughter and sister, a better listener, a better communicator.  I have friends that I haven’t talked to in ages, I’m going to do better at letting them know I miss them, that I think about them, that time and space don’t put a dent in our history.  I’m going to remind people I’m freakin hilarious, and if you don’t hear from me for a bit, you can still say hi… I’m always here, even when I get caught up in my own world and let days, weeks or months pass after forgetting to respond to that text.  It’s a good time to admit something too – I don’t know what you would call it, maybe a bit of anxiety mixed with depression and lack of self confidence, but I have to tell you, sometimes I worry that when I don’t hear from someone for awhile, it’s because I have done something to offend them or upset them.  A huge fear of mine is that someone out there that I love is mad at me and I don’t know it, or don’t know why.  I am a lot of things – loud, abrasive, opinionated and trusting a to a fault, sometimes I know I rub people the wrong way, but I like to think the ones that know me know that it’s never intentional.  I get into funks where I kinda just look at my Facebook feed and go “look at them living life and not needing me in it”.  TRUST ME, I know that’s not the case, I know that’s in my head, but it’s out there now.  Imma work on it this year, aight?

Short term goals now!  This one I am super excited about too, over December, after returning from Mexico and browsing through all them bathing suit pictures, I kinda realised, at what point do I stop complaining about the way I think I look (real or imagined) and ACTUALLY make some real, lasting changes.  As if they heard my thoughts, Magnum Nutraceuticals, the Canadian supplements company I strongly support and use, put out a 60 Day Challenge on Instagram.  Completely free,  participants would receive a full 60 day plan – not just workouts, a full nutrition, supplement and workout guide.  Just the kick in the ass I needed, so I promptly signed up.  The guide that was sent is great, nothing unrealistic for the average person, easy to follow and understand, and it even includes videos from the awesome team at Magnum to demo exercises you might not understand.  The workout plan is based on a 3 day split for weights – upper body, lower body and full body, abs with each, and 2 days of LISS initially, moving into HIIT a few weeks in.  There are two days of active recovery built in as well, which is great.   The supplement guide is suggestion based – none of it is required, but there is detail on each one they suggest and why, plus how to take it.  Being a Magnum supplement lover already (I plan on doing a blog post on supplements later – having IBD and taking stuff is a tough little game of trial and error), many of the suggestions are already in my stack… the H1-5 BCAA’s & Quattro protein are a staple in my house, and while we bounce around with several different pre-workouts, the stimulant free Opus is one of my favs.  Thanks to a sale at my favorite Supplement store right after Christmas, I was able to affordably round out the suggested stack by adding their CLA, Acid, and a vitamin pack called Primer, which I was excited to try.  The best part of this plan though?  The nutrition plan… it’s MACRO BASED.  I will discuss my experiences with Macros separately, because that is a whole other subject I will go on about, but the bottom line here is while there is a bit of a learning curve, Macros = setting me up for that balance thing I was speaking of.  No boiled chicken, brown rice and broccoli for this girl – I just had what I have dubbed “second breakfast” that included egg whites and turkey bacon, smothered in sriracha, so I’m a happy girl.  The #MAGNUMCHALLENGE formally started this past Monday, January 9th – the only other requirement to be eligible for the prize ($650 prize pack from Magnum for top male and female changes) is to send in “before” pictures.  So, my goal this week is to crush this first week, and so far so good – macros are on point each day, workouts are getting done (and let me tell you, I under estimated these, but i will go into that more in a later post) and I’m actually remembering to take all my supplements in the stack!   Medium term goal is to complete this challenge and remain dedicated to it – so far, I feel like that is going to be pretty easy to accomplish!  I am still working up the nerve, but I am pretty sure I will post the before and after shots for you all too… a little extra motivation for me to bust my booty.

A few other short term goals for this month?  I would like to blog a heck of a lot more… I have a bunch of topics I want to discuss, including the rest of my story, medication experiences, some complications that are on my horizon and my personal fav thing to discuss – TATTOOS.

One final note, for those keeping score at home, the Gut Check Charity Spin & Yin is kicking butt!  I only have 5 seats left and some amazing prize donations coming in, I am so excited for the big day.  I am going to take lots of pictures and video and will be sure to post on the end result to share with anyone that can’t make it.  Don’t forget, you don’t have to be in Calgary to participate – you can become an honorary rider by donating directly to the CCC through my personal page.

Happy hump day beautiful people… let me end today with the recipe for these delightful egg cups I had for second breakfast.  ENJOY!

Turkey Bacon & Egg Muffins

makes 12 egg cups – 6 servings (2 cups per) *when using a standard muffin tin

Preheat your oven to 375

line your muffin tins w/ muffin cups if you want to prevent sticking

  • 6 whole eggs
  • 1 container of egg whites (I use the Kirkland ones from Costco)
  • 1/2 package or 12 strips of turkey style bacon, diced into small pieces
  • 1/2 a large white or yellow onion, diced
  • Franks hot sauce – optional & to taste
  1. use a bit of coconut oil to fry up your onions and turkey bacon, until the bacon has some crisp to it and the onions are browned
  2. in a large bowl, whisk your eggs and egg whites together *if you are adding hot sauce, add it here
  3. once bacon & onions are cooked, spoon evenly into each of the muffin tins
  4. divide your egg mixture between each, I find it helps to tap the pan down a bit, let the eggs settle in with all the bacon & onions, then top each up – fill right to the top
  5. bake for 20 – 30 minutes on the middle rack until they are set – have risen a bit in the middle and there is no more liquid
  6. Pop out and cool on a rack
  7. keep in your fridge or freeze them in baggies

I keep mine in the freezer, pop out two the night before, stick in the fridge, then in the morning before I head to work I peek off the wrappers, sprinkle in a bit of cheese and a LOT of sriracha, then heat up at work and eat.

 

 

 

So Excited!

Where has the time gone?  I did NOT intend to leave such a gap between my posts… but life has this nifty little habit of getting in the way of so many things.  And now, suddenly, it’s just days away from Christmas and so much has happened.

I have lots of ideas I will spit out over the next few weeks, but FIRST, some amazingly exciting news – though for anyone that follows my @GutcheckYYC instagram account, it’s old news.   On January 28th, I am hosting what will hopefully be the first instance of an annual event – the Gut Check Ride to raise funds for Crohn’s & Colitis Canada and their “Make it Stop.  For Life” campaign.  This little event includes a charity Spin & Yin (combo Spin & Yoga) class and a fun little after party, and I could not be more pumped to share the details with you.  The class is being held at my favorite spot, Hot Shop  Spin & Yoga – at their Northwest/University location in Calgary.  The amazing folks there have very generously donated the studio and instructor time, so all proceeds raised for the event go towards my cause.  I do have a few spots left, for anyone in YYC who wants to participate, there is a minimum $30 donation required – comment below or use the contact page to email me.  If you cannot attend, but want to contribute, you can make a donation directly to the CCC through my donation page to attend in spirit as an “honorary rider”.  Spin is something I have really gotten into this year, and I can assure anyone who is on the fence that this is will be a completely positive and fun environment that only encourages everyone to do the best they can.  And… if it’s the Yoga that has you hesitating, let me tell you… this girl is completely green as well.  I have attended a total of one single yoga class in my entire life, and am about as flexible as the wooden stir stick in my coffee right now.  For real, I would be lying if I told you I was not at all intimidated, so if I can do it, so can you!   Afterwards, I encourage all participants and any honorary riders who want to partake to join us at Brewsters in Crowfoot for a pint and some food.

To make the Gut Check event even more successful, I have been seeking the support of local YYC businesses for donations of prizes for contests and raffles during my event – the name of the game is fundraising here folks.  Calgary is full of some amazing businesses, and in today’s economy, supporting local has never been more important, so I began reaching out to businesses that I love.  We have some exciting prizes lined up, including a few freshly filled Growlers of locally brewed Kombucha from True Buch (a personal fav of mine… but I will get into Kombucha in another post), and a Gift Certificate from the incredible Cru Juice, a Calgary based cold pressed juice company that has saved me in times of flare ups.  We have two beautiful, hand crafted necklaces from the wonderful Sophie of Tribes Society Jewellery & Metalwork, also based in Calgary and a Gift Certificate from White Rose Vegetarian Kitchen, located in my own community of Bowness, this place is wonderful for veggie and meat eaters, with an appreciation for great food, alike!  We also will have the Promo Team from Popeye’s Supplements on hand hooking up participants with some samples and some supplement advice.  All around, this is shaping up to be a great event, I cannot wait to post pictures and share with you how much money was raised!

Why am I doing this?  Well, aside from the obvious self-preservation motivation of you know… wanting to find a cure for this little disease of mine, I find myself overwhelmed by this urge lately to raise awareness for the CCC and all they do, as well as these diseases that fall under the IBD catagory.  As you have already seen a bit, through my previous posts, my experiences leading up to diagnosis were not exactly pleasant… and the scary thing is, I had (and still do honestly) it relatively EASY compared to a lot of other people.

The fact of the matter is, Crohn’s and Colitis are not simple, they are not easily explained with a short list of symptoms.  There is no list of foods that all of us can avoid that will promise a stay from symptoms.  There is no list of guaranteed symptoms I can tell people to watch out for.  Even the name Irritable Bowel Disease can be slightly misleading, in my opinion, because our symptoms and experiences are not limited specifically to tummy troubles.  My experience is not the same as others, and if you have IBD, or know someone who does, some of my points may ring true, and others may have you going “oh, I didn’t get that”.  Every single day I hear something from someone else, through social media or my own daily interactions, that makes me go “hmm… I didn’t know that”.  It is only through the awareness, programs and communities that Crohn’s & Colitis Canada exposed me to that I began to find my own place and voice in this new world.  Attending the GUTS 2016 conference in Calgary re-inspired me to get involved, and I hope maybe I can inspire someone else.  You don’t have to have IBD, or even know someone that does, to get involved either.  Three Albertans will be diagnosed with Crohn’s or colitis TODAY… and the instance of children being diagnosed is sharply on the rise as well.  The CCC is the only National, volunteer based charity focused on finding cures for Crohn’s and Colitis, but it doesn’t stop there – they are also dedicating to improving the lives of those of us affected.  There are programs like the recently launched in Calgary, GoHere, that has collected over 166 businesses to provide washroom access (could have used this one in Mexico, but I digress…), and Camp Got2Go, a summer camp in Bragg Creek for kids with IBD.  There is the PACE Network – elevating patient outcomes in Canada with IBD Centres of Excellence at the U of A and U of C, which are taking the lead in advancing treatments to reduce steroid overuse (if you have read previous posts you know how I feel about steroids).  There is also the Gutsy Peer Support Program, a confidential online portal with volunteer mentors who provide psycho-social & emotional support to 250 mentees.

Oh, and did I mention RESEARCH?  The CCC has invested over $100 MILLION since they were founded in 1974.  This year alone, they are investing $6.5 million to research in Canada, fuelling 7 research grants at 2 Alberta Universities.  I strongly believe that while we may not have a full on cure in my lifetime, we are well on our way to something very real.  Every day, new and promising ideas come forward about treatment options and that is thanks largely to the CCC and people like you and me who want to make a difference.

I will step off my soapbox now, I know I just spewed a lot of facts and stuff at you.  Either way, I hope to see some of you on the bike on January 28th, it is going to be a GREAT time.

Are you doing something in your area to raise awareness you want to talk about?  Comment below and let me know what you are doing, I love hearing about all the different ideas and efforts around the country & world.

And of course, Merry Christmas to you and yours.  I hope you have some time planned to sit around with family and friends.

 

It’s No Surprise To Me…

… I am my own worst enemy, and every now and then I kick the living sh!t outta me…

Not going to lie, I have had that song  and this topic, in my head for weeks now.  In fact, there are many drafts sitting on hand, having started this post more than a few times.

It’s one thing to talk in general terms about the insecurities we have as women, as humans, or to admit that you have “fat pants” that you wear on applicable days.  Hell, I could easily sit face to face with you and admit that my middle name should be “yo-yo” for all the times in my life I have had to re-stock my closet with different sizes.  What I struggle with is talking about how I see myself, truly… how I talk to myself… how despite all that, sometimes I get stuck in my own head and cannot motivate myself to do what I need to do to feel better.  It is hard to admit that in this state of mind, I can easily justify making things worse by making poor food choices, which naturally leads to more guilt and self loathing.  It is painful to tell you that at a certain point I can SEE what I am doing, I become very aware of it, and sometimes not even that is enough to snap out of it.

At a certain point, when I get really bad, I catch myself doing what I consider the worst stage of this little spiral – I start to use my disease as an excuse.  That statement right there fills me with shame.  You see, from day one of being diagnosed with Crohn’s, there is a specific characteristic of our “community”, of any chronic illness community at all really, that has always bothered me a great deal.  That is the penchant for letting the disease we suffer from become us, and the tendency to let it become an excuse to do very little and be miserable, and in that moment, we let the disease win.  In that moment, it has you.  And when I let it, I am just as bad as the people that drive me crazy.  When I was first diagnosed, I spent a lot of time on google, and I found a million forums and blogs about IBD, the majority of them full of negative comments about how miserable life is with a disease, all suffering, no bright spots.  People would post asking for advice on how to handle some symptom or scenario and dozens of others would respond, eager at the chance to talk about their own bad experiences.  What I am saying now is likely going to piss some folks off, but it doesn’t make it less true – but rarely, if ever, did I see anyone say “it will be ok” or “you will get through this”.  Disappointment, frustration and sadness is all I feel when I see that.  Yes, IBD makes life less than ideal, and I am well aware that I have had it relatively easy compared to many others, there is no denying there are bad times that are worth talking about.  However, we do not speak enough about the good, and THAT is what I want to change by being honest with you.  There are a ton of great days, there are little wins, little tips and tricks you pick up along the way that work for you – things you learn to adjust in your life.  We need to share more of these things.

All that said, clearly, I do let the negative side envelope me from time to time as well.  I try, however, to keep it inside.  I might tell myself, in private, that I can’t make it to the gym today because my stomach hurts and I don’t want to get all the way there only to spend 30 minutes in the bathroom and then have no energy to workout.  But I won’t say it out loud to anyone else.  All this attitude does is work against me and I am hoping that by sharing this with you that I might find my self again too.

My true self is a loud mouthed, opinionated blonde who loves horror movies, music from the 90’s and really loves her little life.  I am hilarious (clearly), extremely social and, as it turns out, fairly vain.  I have always been insecure, I have just learned how to hide it a bit better as I got older.  When I was a teenager, I was, by all standards, considered a fat kid.  I was lazy, never considered the pros and cons of food choices and suffered for it – I was bullied for a long time.  After I graduated high school, I dropped a bunch of weight and found a new confidence I had never had before, but I hadn’t really made any positive changes – needless to say, I entered a cycle of unhealthy yo-yo’ing – well into my 20’s I went up and down.  Then, after being on Prednisone for a while, I hit my highest weight ever and swore I would never let that happen again.  It took me until I was almost 30 to realise that I had to think about what I ate, for my overall health and weight, as well as get serious about activity.

Like many people, my relationship with the gym is kind of a love hate thing.  However, now, in my 30’s, it is generally more love.  I am in the best shape of my life, doing more than I ever have before – weight lifting has made some real changes, changes I can see and feel, the satisfaction of bumping up my weights because I am getting stronger is the best feeling.  The challenge lies in getting over these bumps in the road where I let the negativity set in, and sometimes, it comes out of nowhere.  When I am going to the gym 4 – 5 days a week, I feel confident and good, it’s amazing how my outlook on my own body can change over night after a good gym session.  When I am at the gym, I am on top of the world – I have no problem with motivation once I am there, being surrounded by other like minded people helps me, and I will stay until I can’t lift my arms anymore or walking makes my legs shake.  I’m good at it too – I know what I’m doing, my education ensured that, and while I realise I don’t look like those fitness folks on Instagram, I really do love it.  When I get into a good cycle and am going consistently,  I even start to become part of the regular crew of muscle heads in the free weight area and I love it.  I can SEE changes, and while I still have some flaws and some things I don’t love about myself, in this upswing, I know I’m not training for a competition, only for myself, and I’m good.  I walk with confidence and my head held high.  When my pants don’t fit quit right, I’m able to easily understand it’s because I upped the weights on the squat rack, when my blouse won’t fit, it’s because my shoulders and arms are finally showing the results of hard work.

But… in an instant, I can drop off into a downswing.  Lately, it’s a shake in my confidence that has got me down.  You see, I was feeling great, just like I said, I was sure I was kicking some butt and doing well.  Then I saw a bunch of pictures of myself over a few days I thought I looked great.  Literally, on each of those days, I looked in the mirror and thought “you look good, nice job”.  But the pictures showed a person I didn’t recognise, flaws I didn’t see in the mirror, and in that moment, I shut down.  I’m sure my friends and family think I’m crazy – all adamant they don’t see what I do, but I can only think of one thing – is that REALLY what I look like?  And just like that, I am looking in the mirror and seeing every single dimple, seeing rolls I didn’t see before, a double chin suddenly, and it’s all downhill from there.  I know it’s not logical, if I really feel that way, what I should be doing is hitting the gym again, but instead, I retreat into my mind.  And my mind is not very nice.    So, that’s where I have been for the last few weeks, but I have to admit, even by writing this out, I feel a little better.  In fact, I was planning a gym trip today, a slow ease back into things, but I am bed ridden instead with one hell of a chest/sinus infection – a little oops on my part for getting a Remicade dose when I had sign of acute infection (what I thought was just a cold, but a mistake on my part none the less).  So, once this little set back works its way out of my system, I will begin my climb back up out of this hump and into the light again.

It’s a funny thing, the logic that gets me here, but I am working really hard to reduce the frequency of these swings to the negative, I can’t promise that it will never happen again, but I am working on it.  That’s all I can do.  I have already made some improvements, my eating habits have improved a great deal over the years, and while I’m not perfect (I LOVE me some pizza and the occasional late night DQ run), I do my best to make solid choices and follow the 80/20 rule.  All I can do is go up, right?  Thanks, again, for stopping by.  Have a great weekend!

 

Do as I say… Not as I do

Nothing beats an great weekend surrounded by your favourite people.  My world revolves around my family and friends, and I am lucky enough to have many.  So naturally, being surrounded by the people I love in a large social setting is kind of my jam.  This summer, I was lucky enough to be part of not one but TWO weddings!  The hair, the makeup, the dresses, the dancing, the food, the drinks, the laughter – what more could a social butterfly want in an event?

Unfortunately, the very things I love so much about a good party are the same things that can wreak havoc on my body.  A weekend packed with eating, drinking and late nights can take out a completely healthy person, but for those of us who suffer from some health issues, it can potentially be disastrous.  For me, I am at my best when I am eating a healthy balanced diet, keeping super hydrated with lots of water, exercising and getting lots of sleep.  While there is no set list of “do’s and do not’s” for people with Crohn’s Disease, and no instruction manual for how to keep symptoms at bay, there is a little thing called common sense.  I have learned, time and time again, that I need to listen to my body above all else – it will tell me what’s going on before it even happens.

And yet, here we are…

This summer’s celebrations were a whirl wind of fun, laughter and dancing.  I’m afraid my incredible ability to ignore the signs has led to a bit of a crash and is putting a damper on my plans for fall.  While I sit here plotting my recovery and return to the land of the living, I figured I could help someone else avoid this situation.

Learn from my mistakes, my friends.  In the spirit of sharing from our experiences, here are a few tips I’ve picked up over the last few years…. and selectively followed myself!

  1. Sleeping Beauty had the right idea… for real.  Proper rest is the difference between a great time and a full on melt down.  I’m not saying you have to keep a curfew, I’m just saying plan accordingly.  Get plenty of rest leading up to the big day to keep your tank full and make sure you leave time the day following to relax.  It’s not being lazy, you NEED to recharge, don’t feel guilty.  Give yourself time to recover so that you don’t spend the next week feeling like you can’t get caught up.  Exhaustion opens the door to infection and flares, and we get hit by it much quicker – keep yourself from getting run down and catch a few winks.
  2. Be a picky eater…  I am NOT saying avoid the appies going around, or stay away from the buffet table and I am the LAST person that will tell you not to take seconds.  This is coming from the girl that ate like 6 tray buns on Saturday.  What I am telling you is this is not the time to disregard your sensitivities or pretend you don’t know what that giant scoop of sour cream dip you are about to put on your plate is going to do.  Take a bit, take your time, weigh out your options – is the bloat, discomfort, pain (and food baby that’s gonna make that dress or suit more uncomfortable than it already is) going to be worth it?  For the record… 5 buns was, the 6th… maybe not.
  3. Raise ’em up… Confession time!  I know I said there was no list, no book of rules, but that’s not entirely true.  When it comes to standard Do Not’s, alcohol is at the top of the list.  That said, I do still indulge, I’m an adult and I make my own choices.  However, I am very well aware of my limits and certainly pay the price from time to time.  If you are like me and enjoy some wine or a few pints now and then – a few more at a party, then you have to make a choice.  Water is your friend, at least a glass of water for every adult beverage, and a few more every now and then.  Try to stick to sipping drinks, avoid sugary or fizzy pop mixes, and try to pick one type and stick to it.  And of course, the dreaded “shot” should be limited.  Hang overs aside, a night of drinking can really set me up for days or even weeks of stomach upset and discomfort.
  4. Come prepared… At the end of the day, you know you are going to need a little bit of extra support.  In my party clutch, you will find  the basics of cash, ID, lipstick, gum, bobby pins and possibly a spare pair of shoes/flip flops.  But, I also keep a few extra vitamins, especially Omega Fish Oil, chew-able pepto pills and a scoop of BCAA’s in a baggie.  Just a few little things  that can help me extend the night and time with my loved ones.
  5. Know when to throw in the towel… The biggest thing I have learned in the last few years is to not be afraid to be the first one to leave a party if I have to be.  It pains me to do it every time, but when I ignore the urge to go home and crawl into bed, I pay the price.  When you surround yourself with people that understand your condition, you never have to explain and it makes all the difference in the world.  If you catch a bad time for heading home at 9pm then you need to find a better group of people to chill with.  If you can make it until the wee hours, all the power to ya, that’s the goal, but if aren’t feeling like you can make it, do not fight it.

That’s it, that’s all, just a quick one… mostly common sense, all of it pretty basic.  IBD or not, we could all stand to take better care of ourselves.  Be it a night out or a full weekend of celebrating, take a moment to think about it, weigh out the consequences and then live and learn from your choice.  Accept that from time to time you aren’t going to do the right thing, sometimes you are going to have one more whiskey pickle shot instead of a glass of water.  Sometimes, you are going to eat the fries even though your dress is already so tight you can barely breath.  Take your vitamins in the morning and start again.

Enjoy your week!

 

 

And Nothing Else Matters

I can’t believe that it’s been a week since my last blog post – time has just flown by this week.  Since my little story was posted, the response I got was overwhelmingly supportive.  It’s funny, I got a lot of messages thanking me for being brave, for being so honest, but when I sat down to write, it never occurred to me that sharing the beginning of my story would be a big deal.  Over the last 6 years I have met a lot of people suffering from Crohn’s or Colitis, a lot of people who have had it a LOT worse than me – honestly, I have always considered myself very lucky, all things considering.  Since my diagnosis and that original flare up, I have only had 2 fairly minor ones to date, I have been fortunate enough to stay off the operating table and thanks to my current treatment regime (more on that later), my symptoms are relatively minor and mostly manageable with diet and a few other life style choices.  Once I understood this disease and the symptoms of a flare, I could pin point at least 3 other instances of flares in my life, albeit un-diagnosed at the time, from about 18 to a year or so before diagnosis. But, I have dear friends missing several inches of their bowel.  I have met people who have spent more time in the hospital than at home in the last few years.  And despite the fact that statistically, the odds are against me, and that IBD continues to be a disease with no cure, I still count myself extremely lucky.

However, as someone I respect a great deal reminded me this week, none of that makes my experience less valid or less worthy of talking about. I’m not looking for pity or for a pat on the back – I appreciate the kind words, I really do, but that’s not why I am doing this.  When I was diagnosed, I was completely devastated and alone – don’t get me wrong, I was surrounded by friends and family that were nothing but supportive, but absorbing what was going on is a difficult thing to get past, and I don’t want anyone else to go through that.  So… lets get on with it, here is a little bit more of my story.

The night following my scope and diagnosis is a blur.  I will spare you all the details, anyone who has had one before knows, a scope is not the most pleasant experience… the sedation did it’s job, but I reacted poorly to it overall and was pretty out of it for the next 12 hours.  In the days that followed, I spent my time googling Crohn’s Disease on the internet then promptly having melt downs because of what I found.  Family and friends dropped by, our house was full of get well flowers and cards from the many wonderful people in my life.  A friend of mine with medical training dropped by with some reading for me, including information on nutrition and supplements for someone with IBD, and while I was still exhausted all the time and tired easily, I was enjoying being able to move a little easier and being pain free.

I took my medications faithfully, enjoying the positive differences they were making initially, and eating.  Yes… Eating.  Without pain and most importantly, without the violent and urgent reaction that had followed for the last year.  At first, I LOVED me some meds – I took them, I felt better, what was not to love?  My stomach had shrunk a great deal so I could only eat small amounts at a time, but I was really enjoying feeling normal.  My joint pain was getting less every day, the stiffness in my hips and knees eased considerably and though I was still weak from months of malnutrition, the ability to walk without pain was amazing and I would spend time just walking up and down the stairs.  Each and every day I was discovering just how sick I had been – as symptoms of the flare disappeared, I would notice the little things… when I leaned against the bathroom counter to put on makeup, it didn’t hurt in my stomach!  When I went to the bathroom, I didn’t double over in pain.  When I slept, laying on my left side didn’t send stabbing pains through my core and wake me up, and I SLEPT!  Even though I had been nothing but exhausted for what seems like forever before I was diagnosed, I never slept through the night, I was never rested – every time I moved I hurt, I was feverish all the time and tossed and turned.  Whatever magic these pills were working, I was all about it…

I’ve been back and forth on if I should share exactly what I was taking, I don’t want to sway someone’s decisions, but why should I hold back now?  Besides, it’s a pretty standard script for anyone in a severe flare.  I was given a prescription for Prednisone, a corticosteroid and immunosuppressant drug that is given in fairly high doses in cases like mine, and Imuran, a second immunosuppressant that is often given to transplant patients to reduce their chances of rejecting the new organ.  A lot of immune suppression you say?  Well – that’s because Crohn’s Disease is an inflammatory auto-immune disease… in the simplest way possible, it causes my own body and immune system to attack itself – most specifically in the gastrointestinal tract, though it rears it’s head in many other ways as well.  It is a chronic  disease, generally characterised by periods where symptoms are relatively in check and times of Flare Ups where symptoms are NOT in check and my body hates me… and I hate it right back.  There are many different medications and schools of thought on treatment for Crohn’s, but ALL of them are to control & manage our symptoms – they are not a cure, they help heal damage, but they don’t erase it.  And, Prednisone & Imuran certainly have their place in the world of IBD, I cannot be more clear, they saved my life, but they have some nasty side effects too.  The combo had to be taken in a very specific way – Prednisone early in the day, as you would suspect with the classification of steroid, gave me an uneasy kind of energy that I quickly grew to hate.  I swear I could feel it surging through me, I had the shakes, my hand was never steady, it jacked up my body temperature and I was HOT all the time.  Everyone around me also learned that “Roid Rage” is a real thing, I legit could not control my emotions and would easily fly off the handle one minute, be sobbing the next.  It not only helped my appetite return, it made it almost insatiable – I could have eaten all day every day, and sometimes I did.  Naturally, that led to rapid weight gain, especially in my face, which was a special little bonus of  the drug that is lovingly called “Moon Face”.  I will talk more about the weight gain in another post – that’s a whole other topic of conversation.  The thing about Prednisone is that you cannot just STOP taking it when you are done, that would put your body into shock and withdrawl (think about that), so you have to taper – I had to taper over a very long time overall, being on it for nearly a year.  Imuran on the other hand, was far more subtle and was best taken at night because it could cause stomach upset, I am actually still on it, but the combo of the drugs did a great job of keeping down my immune system… and ushered in a new reality for me, one in which I got sick very easily.

After a week or so, I was able to go back to work – kind of.  In my first few weeks back, I learned the hard way what it truly meant to be immune compromised and how quickly infection can set it.  I had been so sick for so long, I didn’t know how to read my own body anymore, I didn’t know what was not normal.  Needless to say, after going into septic shock  at work for a bladder infection turned kidney infection and spending some time in the ER and hospital, it was a little tough to convince my employer I was fit to return to work.  I spent my fair share of time hooked up to IV’s for various rounds of antibiotics and blood draws to monitor things.  Infections and fever sucked, but it was nothing compared to the symptoms of a flare up, and I quickly came to the quiet understanding that the result was worth the cause.

Physically, my real self was returning, and with each day I got stronger and further away from the memory of how bad it was.  Mentally, I was struggling, my husband seemed to think that now that I had an answer and was on medication, there was nothing more to talk about.  Many people in my life did their own googling – everyone had ideas, tips and tricks, everyone had an opinion about how I should live my life now, it was becoming exhausting and overwhelming.  I was biding my time until I got to see my new GI Doctor again, convinced he would have all the answers for me – I honestly imagined he would basically just hand me a booklet with all the info I would need and I would be on my merry way.  Google told me there was no one treatment for us all, no one diet that worked for everyone, but that couldn’t be true, I hung all my hopes on that upcoming appointment.

Thanks again for taking the time to read a bit more about this little journey of mine!  There is more to come, of course.  I cannot be more clear, during this time, I have had amazing friends and family support me – expressing that I felt alone is NO slight to them, they did anything and everything in their power to help me.  The feeling was purely on me, and as I have come to learn over the years, many of us went through the same.  Again, if you have read this far, THANK YOU.  Happy Sunday friends 🙂  until next time…

 

 

Just begin at the beginning…

Go figure… I spent all day with my mind buzzing with ideas, thoughts swarmed in my little sleep deprived brain and I was so eager to get home and hit the keyboard that I could hardly stand it.  But now, here I am, sittin’ on my couch, dinner is bubbling away on the stove, and I am lost for words.  You took the time to pop in on the maiden voyage of my little blogging venture, and I have been staring at the screen for the better part of an hour now.

The truth of the matter is, until just this moment, in all this time, I have never put my story out, in full.  Of course, I have confided in friends and family, I am fortunate enough to have some amazing people in my life who have stood by me through it all… but I can honestly tell you that I have NEVER just started at the beginning and gone straight through to today.  Seeing as how you have taken a minute to check out my site, I figure I owe you an explanation about why I started this all. I’m sorry, it’s a long one, but if even one of you reads this and can relate, well then, this time has been worth it.

Flash back to early 2009 – I am in my mid 20’s, I’m engaged to be married and am planning a big wedding for the fall.  I have amazing family and friends and am pretty sure I am on top of the world.  Except… I am not healthy, and if you press me, I will admit I have been feeling like something is wrong for years.  It’s mostly my digestive system that causes the issues, cramping, bloating, nausea, and lately, horrible heart burn that gets so bad that the next day it hurts to swallow.  My mouth is full of canker sores all the time, and pretty much anything I eat goes straight through me.  That is the worst part – not just because it’s embarrassing, but because it often comes out of nowhere… no warning, no heads up, just a sudden cramp followed closely by a frantic sprint to the nearest bathroom.  I am constantly tired and achy, my whole body hurts, especially my major joints, but I don’t link it all together, after all – I’m planning a wedding, the stress is just getting to me and I’ve always had a ‘nervous stomach’, or so I am told.  I don’t want to talk about it, it’s super embarrassing to discuss an upset stomach and I have been doing some googling, pretty sure it’s something to do with Gluten, that’s a thing now, right?  I even go to the doctors and tell them half truths, choosing my wording specifically to fit the symptoms I have read about in private on my laptop at night while my fiance is at hockey or walking the dog.  They don’t even give me a blood test, we all just smile and nod and agree that avoiding gluten is worth a shot, and I head promptly to the grocery store. Many hundreds of dollars in GF products later, including at my own wedding, I am actually starting to feel better and I forget all about it… for awhile.

Move to next fall, I have learned that avoiding gluten is way more difficult than I originally thought, do you know how much stuff contains that crap?  It’s also extremely expensive and has become a lot of work to prep two meals, one for me and one for him – and it’s not even working anymore.  I am back to spending a lot of time in the bathroom, there are many days at work where I’m in there for an hour or more at a time, especially after a meal.  You could often find me doubled over on the toilet, in pain, silently pleading with the other women in there to hurry up and leave, holding my breath, tapping my toes and debating whether or not I should tell someone that these days it’s mostly blood that I leave behind.  I’m a horrible employee, I am sick a lot, constantly exhausted, fighting some infection or frankly just too depressed to get out of bed in the morning.  I hardly ever leave the house anymore, the constant anxiety of not knowing when my body will decide to betray me again and send me frantically looking for a bathroom is too much.  That is by far the worst part, that shock when you realize your body is going to turn on you – too many times I had to park illegally outside some fast food establishment and shuffle, knees together, awkwardly hunched over, to the bathroom, praying an employee didn’t stop me.  Here I was a grown woman, facing the daily realisation that today might be the day I don’t make it… and unfortunately, it happened.  I even started keeping a roll of toilet paper in my car, just in case.  When I did leave the house, I would carefully plan the route, stayed off major roadways and stuck to roads with lots of quick stop establishments.  Eventually, he started going out a lot without me, not that I could blame him, I had ruined so many nights out before they even started by suddenly pleading to pull over at the Tim Horton’s on the corner – I kept a stash of loonies in my purse just in case I had to buy something before I could use the facilities, or, to ease the guilt and embarrassment because I was sure everyone had seen me go in and not come out for a long time.  I stopped taking care of myself, my skin was super dry and covered in patches of eczema and my face was so red all the time I gave up on makeup, my hair was stringy and fell out in clumps, so I rarely did anything but tie it up wet.  My hair is always wet these days because I am showering so much, I just don’t feel clean… and honestly I have sores now from so many trips to the bathroom.  When I do go to work, I come home and immediately sprawl on the couch… we don’t talk much anymore, I don’t have anything good to say these days, the depression is crippling and the anxiety of leaving the house now is too much for both of us.  I am not careful about what I eat, everything makes me sick so I just don’t care anymore – it’s safe to say the weight of it all was consuming me, one year into my marriage, I am a burden.  My joints feel like they are loaded with cement and nails, I can barely walk up a flight of stairs without getting dizzy and going down is so painful I wince with each step.  It is my Manager that first pulls me aside and tells me he’s concerned about me – together we decide that maybe I should take a small leave to figure it out, I reluctantly agree because I am so tired I just want to go to bed.  The reality sets in on the ride home… I must look as bad as I feel, and I assure you, I did.  The next morning, I can’t make it down the stairs from our bedroom to the kitchen and my husband has had enough, he basically carries me to the car in my pajamas and we go straight to my doctor’s office.  He insists on seeing the doctor, the receptionist takes one look at me and drops her protest, within minutes we are in the exam room, I’m answering some very awkward questions while my husband paces in the corner, adding extra comments when he thinks I’ve left something out. He glares when he hears me admit that I have been passing nothing by mucous and blood for days now, and I realised I hadn’t told anyone about that part, not even him.  I am sent home with colonoscopy prep instructions and an appointment to come back to the hospital first thing the next morning.

That night, I slept like a baby, for the first time in months… there was a possible answer here, there was a name for all  this.  He had said it once quickly, almost under his breath, then louder as he flipped through my chart reviewing the dozens of pages added in the last few weeks.  Crohn’s.

The following day is a blur, I hadn’t had anything to eat for almost 24 hours and I was terrified.  I was being “slipped in” when the GI Doctor was free, so I laid in the prep room of the GI Department for almost 5 hours, alone, with an IV in my hand, watching people go in awake, come out sleeping.  When my turn finally came, the sedation worked it’s magic quickly and I, thankfully, remembered very little of the process.  The man I would come to know as my GI Doctor then brought my still slightly sedated self & my husband into his tiny little hospital office, looked me in the eye and simply said “without a doubt, you have Crohn’s Disease”, he then looked at my husband, passed him a script for what he assured me would “help get back to normal” and told us to call his office in the morning to make an appointment for 2 weeks later.  Then he walked out.

That script was for a popular treatment of flare symptoms – a steroid and immune suppressant combo that I would grow to hate.  But regardless of how I feel about them now, in the days and weeks that followed, those little pills literally saved my life.  My new life, as a member of a not so elite club, with more and more members every year – my life with an Irritable Bowel Disease or IBD, my life with Crohn’s Disease.

There is plenty of time to talk about the in between, and I will share more, can’t spill it all at once, or you won’t want to come back.  It’s been shockingly difficult for me to write this out.  I have cried a little bit, including when I accidentally deleted like 3/4 of my work (what’s up, first time on WordPress)… But, spoiler alert, so far, I have made it through alive!  It’s been a few years, one divorce, one or two job changes, a new relationship, some lessons learned and a flare or two since, but I’m still standing.  I have Crohn’s Disease, but it does NOT have me.

Where did this urge to spill my guts online come from?  Well, yesterday I spent some time with an amazing group of people, people just like me… I got to attend the first session of GUTS 2016, hosted by Crohn’s and Colitis Canada and I left feeling inspired and motivated.  To me, it’s ALL about us sticking together, working as a team, to get through this life together.  I don’t care if you have IBD, you know someone who has it (and odds are good that you DO, especially here in Canada), or you just found me by accident and have miraculously kept reading, I want you to feel inspired to do something.  I want to use this little platform I have created, and my Instagram account (@gutcheckyyc) to help.  I want to motivate, I want to help, I want to make you feel less alone, I want to make you smile.  I want to talk about working out, I want to talk about lifting weights and how much I love it.  I want to talk about eating, and my love/hate relationship with food and health, I want to talk about living with Crohn’s as a productive member of society, I want to talk about lots of other stuff!  What do you want to talk about?  Tell me!!  I look forward to chatting with you, and filling you in on the rest of my story.

Until Next time!