How do you survive a colitis flare? day7 and it’s been a #shitshow thus far.

Well 5 days ago I thought I was gonna get crowned ‘master colitis-flare-up-kicker-asser’. In my mind on #day1 of the flare I was already #winning. but then the wicked evil Mr.jerkface called STRESS kept getting in the way. stress prevails. stress wins. stress kills. all the time. even thinking and writing about the past week is probably gonna do damage.

today is day 7 and I’ve been in bed all day. [feeling thankful for an ensuite. ha.]

this is how everything went down….

day 2 of the flare: my truck had to get towed to the shop. being without a vehicle sucks, but the $930 estimate sucks even more. I own a home and run it on my single salary. (plus my special diet full of non-gmo and organic foods, and a lot of supplements.)  money is tight. ESPECIALLY after Christmas.

day 3 of the flare: 3 am while I was sound asleep, my cat brought me a LIVE MOUSE IN TO MY BED. the shit show that followed cannot be explained in words. all I have to say is that I am the last person on this planet that this should have happened to. still to this moment I am traumatized and can’t look at my cat the same way.

I turned to Facebook because I was all alone and needed someone to calm me down!! (I couldn’t bare calling and waking anyone up at that crazy hour.) the third picture is the morning after and I think the mouse was there in the wall by the doorframe. Baxter would not stop staring at that corner…

cat_and_mouse

somehow I managed to fall back asleep around 4am. when I woke I ran straight to the washroom. and there was a noticeable amount of blood this time. from a minimal amount on day 1 to a moderate amount on day 4. STRESS.

day 4 & 5 of the flare: I slept with one eye open. I finally caught the little asshole in a mouse trap. Baxter has still been acting a bit weird so I haven’t made peace with the whole ordeal, worried that there could be another one lurking around. needless to say I haven’t been able to get a sound sleep. every time my cat jumps on to the bed I jump up out of my sleep. I can’t keep my door shut because he scratches at it to get in. more stress.

day 6 of the flare: my cousin came over for a visit. thankfully he was happy to help dispose of dead mr. mousehead who got his ass kicked killed in the basement.  when we went down there to get it we discovered that my hot water tank was LEAKING and there was a fair bit of water pooling up on the floor. FRICK! what next! when it rains it pours, I guess? just one thing after the next. after trying to investigate the problem on our own texting family who know more than us, hoping for a simple fix, I ended up calling a professional.  tears were almost pouring down my face when they told me that it was going to cost $1300 for a new one. (gas hot water tanks are more money and of course that’s what I have.) anyway, the second company I called had a plumber call me back with a quote. he happened to be close to my area and was about to be done for the evening and just so happened to have a new tank with him. he said that if I got it installed right away that he’d save me $100. I wasn’t sure what to do as I hadn’t really done my homework as far as getting many other quotes. but considering it was after hours and that I had used every last towel in my house to soak up the leaking water, I decided that this was a meant-to-be kind of moment and that it was a pretty quick fix to this stressful situation that I didn’t need to deal with any longer. I had no choice but to jump on the opportunity. as my cousin later pointed out to me…someone was watching over me. what are the chances that there was a professional close to my house, with a new tank, offering to save me $100, AFTER HOURS.

so the discovery of the water in my basement happened around 3:30pm. sure enough, I was doomed and shortly after 6pm I was running to the washroom for the rest of the evening. by the time the dude had come and put in a new water tank and left it was 8:3opm. I definitely felt so so relieved that it was done and dealt with but the damage (to my body) was already done.

It’s a simple concept to say, oh don’t stress because that will aggravate the flare. but it’s SO NOT THAT EASY. when I first saw all that water I was upset because it was something I wasn’t prepared to have to deal with while being in a flare. but because I know so many people that could potentially help me out it ended up being a stressful situation trying to get the problem fixed on my own. at one point we decided that it was only the pressure relief valve that was leaking. which would have been an easy fix. and something my brother could have probably changed for me. but after about an hour of comtemplating what to do I decided that since the tank was at least 15 years old it was not worth investing money to fix the valve.  in the back of my mind I was thinking about the $930 bill for my truck that I wasn’t able to pay for to begin with, so again, naturally that’s going to send signals to the stress hormones and they’re gonna have a party.

since my diet has been so tight throughout this flare, being extremely dedicated to eating the right foods and avoiding the wrong ones, determined to get out of this flare, I KNOW that it’s stress that’s made me worse.

i’m still incredibly determined to not let this flare get out of control like the last one, but I’d be lying if I said I am not feeling a bit defeated and depressed and sad and angry. the physical pain of this disease is just one part. a lot of the time it’s hard to not get caught in a vicious circle: I get sick, then I do my darnedest to do everything in my power to heal, but then life happens and uncontrollable stress takes over and makes me even sicker. so then I’m stressed about being stressed and stress makes me sicker. OYE.

tomorrow is a new day. and no more stress allowed, universe!!!! 2017, can we please have a re-do???!!?

I think I’m going to order a box of VSL#3 to be on the safe side. hell $930 + $1200 all in less than a week, what difference is an extra $115 gonna make!!!???!! cause at the moment I refuse to go on a more powerful drug. the reason I fight this hard [with food + exercise + mindful living + positive attitude, for the most part] is to heal my body, not mask the symptoms.

food_thy_medicine

Last fall I introduced myself to Yoga. officially. before that I was just learning poses off the internet and practicing them on my own. but not consistenly. then my work started to offer yoga classes so it was super easy to commit to doing it on a regularly weekly basis. it helped tremendously and now i’m HOOKED. unfortunately classes were done at the end of November and don’t start back up until Jan 19. now that I’m in a flare I’m needing it more than ever. I turned to google today and searched ‘yoga for colitis’ this is what I’ve found. I shall start toute suite!

http://www.findhomeremedy.com/6-yoga-treatment-for-colitis/  

be well, everyone. xo

p.s. to all my fellow #ibdfighters out there. how do you fight off a flare-up? please reach out. I’d love to hear what works for you. THANK YOU.

d57fcdfb544456e8bd23e50d48e641e9

Happy New Year + [not so happy] new flare. colitis.

I’ve been working on this post for the last two weeks and the title was supposed to be ‘199 days in remission for colitis girl! and now today is day 1 of another flare. insert sad face here. nice to meet you too, 2017.

I can’t say that I am surprised though. that I’m in a flare. in the last month and a half i’ve been carrying on like I was magically cured and could eat, drink, and do whatever I wanted. maybe that’s a bit dramatic because I do actually work hard and limit myself very much so.  but this time of year it’s a lot harder with all the holiday gatherings and treats constantly shoved in my face. when I say treats I don’t mean just baking and chocolates. treats for me are POTATOES of all kinds (mainly potato chips),  gluten, dairy (cheese is a super hard one for me and tis’ the season for eggnog!), + WINE. wine wine wine.

I am usually pretty dedicated when it comes to following my restrictive diet except when I am invited over to other people’s places… if there’s only one kind of appetizer on the table in front of me that I should NOT be eating, 9 times out of 10 I’m gonna eat it. (unless I’m in a flare. when I’m in a flare I have all the willpower in the world to not touch something bad)  My one dear friend though, mama Mia, always goes above and beyond for me. When she has me over for dinner she always caters to my needs and I am beyond grateful to her for that. she also LOVES to cook and she started her own blog recently… www.miacucina.blog. (check it out!!) I can’t wait to collaborate with her on some colitis-friendly recipes and I will be sure to share them here.

anyywaaay……

for the last 6 days or so I’ve been getting some warning symptoms. as soon as I was waking up in the morning I’d have the urge to go to the washroom right away. and more than once. my instincts were telling me that it was a bad sign but I talked myself out of it because: my tummy wasn’t big and bloated, I wasn’t experiencing my typical colitis tummy ache and pain, no cramping + there’s been NO BLOOD. except this morning. the damn unwanted guest came this morning. but not lots, thank God! I had a ladies night at my place on Friday and I’m pretty sure (along with a couple other bad dietary choices days prior to that) that that’s why I am back in a flare. the appie menu I had served was pretty much all okay for me to eat on a good day… in remission, far away from a potential flare. like: non-gmo cornflakes for gluten free chicken nuggets (and all other non-gmo corn for that matter *in moderation*), goat cheese, nuts, grains + more examples in another post. the killer for me on Friday night, was almost an entire bottle of wine. insert feeling stupid face here. it was also a 3 am-er and I got maybe only 5 hours of sleep because I was hosting brunch the next morning. needless to say, New Years Eve was a very chill evening (+ NO alcohol cause I had a hunch I overdid it) and Bax and I did the countdown in bed. lol. I’m surprised I even made it til midnight. Anyway all that carelessness brings me here to today. in a flare. resting. I haven’t left my peaceful pad since. trying to redeem myself with lots of R & R and very strict eating.

Can anyone spot my little dude? he was helping me colour earlier… peaceful_pad

so the plan for today’s post was gonna be a bit of bragging for being in remission for 199 days. ha, that backfired a bit. and then I was gonna finally share my colonoscopy story which is about 6 months overdue.

here’s a quick side note for my fellow #ibdfighters who may be inspired to ‘cure’ themselves too!  last year I made it almost an entire year without going in to a flare. that’s a record for me in my 12-year-colitis-life. almost 11 months in remission. and that was also the year I was introduced to bone broth and started drinking it every. single. morning. except for right now!! lol. which probably has a little something to do with me being in a flare again. I ran out of bones right before Christmas, and I was supposed to steal some already-made broth from my aunty but that didn’t happen. I called farmer Jim a couple of days ago so hopefully he’ll have me hooked up soon!! I ended up stealing some bones from my aunty and they’ve been in the crockpot since last night. beef bones take 48 hours so they’ll be done tomorrow night. not soon enough!!!

so rewind back to May 31. 2016. 2 days before my colonoscopy. (I document everything in my Day One journal. best app ever. I write everything down about my moods, stress levels, digestion, versus what I ate that day / cheated on, and note when I exercised, and then it becomes super important data in helping me to learn how to stay in remission.) so back to May 31. was my first official day in remission as there was no blood in my stool that morning. (blood is the last symptom to take a hike when I am going in to remission.)

then the eve of June 2 I am chugalugging 4 LITRES of liquid drugs aka poison toxic overload. all the while wondering what it was doing to my recently healed, ever so delicate, intestinal lining….

the last three times I’ve gone in for a colonoscopy (this one was number 6 or 7) the nurses have problems getting my IV in and I end up blacking-out. [for those who haven’t experienced passing out, it’s not pleasant. your brain doesn’t get enough oxygen and blood so you lose consciousness. when you finally come-to you feel nauseous and sick. certainly not something you want to go through right before a colonoscopy.]

so, colonoscopy day… My nurse this time around, Nurse Jean, was a Godsend. I explained my situation and she was determined and assured me that this time around would be different. I trusted her as she was a nurse for forever, retired and came back. she knew her stuff. and it’s important to know that I am not passing out because I’m afraid of needles lol… As you can see in the first pic below I am in great spirits having a jolly ole time. after about 30 seconds of her doing her thing, I was convinced the needle was in and I actually even yelled out to everyone that Nurse Jean is my hero, woo hoo, she got it in!!! and I was pretty much doing a happy dance in my mind. but then she said aloud that it wasn’t in and that she was having trouble. so I’m pretty sure subconsciously I was going in to panic mode. my mom was by my side and we were joking around trying to distract me from what the nurse was trying to do but then the feelings starting to come. I felt my head start feeling weird and spinny but in slow-motion. it was a horrible feeling. so that’s me coughing in the second picture. I told everyone that I was about to go sleepy. that I could feel it coming. So I was instructed to cough cause apparently that’s supposed to help. I felt myself struggling to stay conscious and at the same time I was wanting to black-out so all bad feelings would be gone.

I thought for sure the coughing worked, but my mom swears I ended up fainting. I was adamant that I did not [because i’m stubborn and need to be in control], but then I saw the 4th picture, middle below. lol. so who really knows. I think at that point maybe I was just taking a rest. lol!!

but then the craziest shit happened. they finally got the IV in, but the whole ordeal ended up putting me in to ‘shock’ ..it was one of the craziest feelings I’ve ever experienced… all of a sudden my hands, arms, legs and feet got all tingling and immediately began to blow up. like you would a balloon. I was so freaked out by the pressure building up in my extremities and I started panicking trying to explain to nurse Jean what I was feeling. from my perspective she looked worried so that freaked me out and intensified what I was feeling. she just kept telling me it was my nerves but I wasn’t convinced. I ended up half calming down because I remembered I was in a hospital and if something terrible was happening I would probably be okay. within minutes it was time to wheel me in to the procedure room and then that’s when I got stabbed with a really bad colitis tummy ache. all of that was a crazy amount of stress that I endured. STRESS. is. a. WEAPON. and it’s POWERFUL. the dangerous thing about stress is that if I were to have experienced the exact scenario in remission, I wouldn’t have got that tummy ache as a sign of the damage the stress was doing, yet the physical damage to my body would have been the same. think about that. the signs are only there when it’s too late. and that’s not a colitis thing. that’s a stress thing. it just manifests its way differently in everyone.

when they wheeled me in to the procedure room I begged the anesthesiologist to drug me up quick so the feeling and pressure that was going on in my body would subside. no dice. my specialist (gastroenterologist) needed to ask me a bunch of questions before the procedure.

post colonoscopy, after I woke up, I had the urge to run to the washroom. pretty much to empty nothing but blood in to the toilet. so yes. I believe that the crap I had to drink the night before, plus the stress of the whole IV thing, and the probing around up there with the camera + biopsies, put me back in to the flare. (Nurse Jean promises me that the ‘IV team’ will be called in for my next colonoscopy and all the fainting shenanigans should hopefully never happen again)

My GI came to chat with me in the recovery room and told me that I was in an active flare. I was quite ticked by the news since 2 days leading up to my colonoscopy I had got myself back in to remission. not without tons of hard work and effort. and lots of help from VSL #3. and my bank account.

He explained to me that the drug that I’ve been on for 12 years (Asacol, which apparently is the most ‘safetest’ IBD drug to be on) is no longer doing its job and that I need to go on a more powerful drug. an IMMUNOSUPPRESSANT drug. okay so hold on here.. the year before  I almost made it a complete YEAR in remission. and the year before that I went in to two flares. and all the years before that I was in flares on and off all the time. so. according to MY calculations, I can’t justify switching to a more harmful drug. sorry doc but NOOOO THANK YOUUUUUUU. I told him I don’t feel comfortable going on a different kind of drug that will, one: only mask my colitis symptoms, and two: weaken my immune system for me to develop all other kinds of problems. He encouraged me to go for a specific kind of blood test that would see if my liver could handle this particular new drug and that we would talk about it again when I went for my follow up appointment. I agreed at that moment but I was pretty sure that this blood test would be pointless because I wasn’t going to change my mind.

I later told my chiropractor the story about the troubles I had with the IV and that my arms and legs ‘blew up’. she knew right away what I had experienced, nodded and said, yeah, that was ADRENALINE (!!) racing through you. CRAZIEST FEELING. I wish my mom would have had a video camera instead ha ha.

SO. two of the biggest changes / additions in my life, that I’ve done since I got out of that last flare….

ditching my Brita/tap water!!!  for the last 6 months I’ve been buying distilled water from World of Water. thanks goes to my interior design instructor! when I was missing all those classes last spring because of how sick I was I finally told her what was up. that I had colitis. she was very familiar with a similar disease and she’s the one that pointed out to me that the chlorine in my tap water was killing the good bacteria in my gut. I guess I thought the Brita was taking out ALL the harmful stuff in my tap water. little did I know that it was still full of chlorine. I am SO angry at this oversight. all these probiotics I was pumping in to my gut and the TONS of tap water that I was drinking every day was counteracting my efforts. so, so grateful to her for bringing that to my attention. I hooked myself up with an pretty water cooler (thanks, mom) and also looked in to getting a filtration system put on my shower as well. our skin absorbs 10 times more than any other organ in our bodies… (think about what we put on our skin every day…washing our hands with anti-bacterials, lathering up in body lotions, face creams etc.) I now save my bathtub time for at the lake where I can soak in *just* lake water. and I’ve also been making my own body butter for the last year and a bit. [I use this recipe and sometimes add beeswax.]

the next best thing in my life has been KEFIR. all thanks to my moms friend from work. I had heard of the stuff before but didn’t pay too much attention to it until it* showed up at my doorstep shortly after my colonoscopy. I’ve been making my own kefir and eating it everyday since! and this post has gotten waaaay too long so more on kefir later.

because of the minimal blood today, no tummy aches or cramping, I’ve got a gut feeling *no pun intended, ha* that I’m gonna nip this little b*tch in the bud and i’ll be good as new SOON.  I’m pretty confident that the new additions to my diet / lifestyle in the last 6 months have been making a positive difference.  I honestly believe that I have the power to control this disease. it’s not easy, and I suck at it sometimes, but I BELIEVE. and that’s always half the battle. our mindset.

so quick quick before I go, for my fellow #ibdfighters, here are some of the things I do when I go in to a flare (in addition to my daily restrictions regardless of being in a flare) :

I ‘up’ the asacol from 3, 800mg pills to 6 pills per day. take salofalk suppositories before bed. increase probiotics. no more daily coffee (that’s the hardest for me) no cold liquids/foods. try and limit solid foods… more smoothies the better. limit grains. absolutely no alcohol, no corn and popcorn, no seeds, no turmeric (or spices), no soy, limit meat, increase alkaline foods, limit exercise to yoga or walking – I don’t do my regular 3 flights of stairs at work, no body building, nothing that will leave my body having to rebuild cells. get TONS of rest and be mindful about STRESS and avoid it as much as possible. and REST if I haven’t already said it ;-) go for a massage and chiropractor (I see Dr. Kelly who practices Korean Specific Technique).

holy moly that was long. thanks to everyone who read right to this point. I love yas. you keep me going.

nighty night. xo

-me

calm and peace can always be found at the lake

back to April…

last week started off not so good for my brain and heart.  sadness and anger and worry hogged the majority of my thoughts. and this time I can’t blame it [these feelings] on a lack of Vitamin B (or so I thought). without going in to detail about what happened, a few different things just added up [from sad thoughts, to mean people, to worry and anger and back to sadness] and gave me a sucky Monday. AND it was still cloudy after a weekend full of clouds and cold and wind. at some point tho the sun did come out cause I remember it when I took a breather and walked to the Thrift store on my lunch. I guess my mind was too distracted to notice  that I had stormed out of the office without my purse. #damnit.

Tuesday I woke up feeling very depressed about all the new thoughts Monday had given me. and of course what you throw out in to the universe… the law of attraction, and all that magic, it’s very very real. sooooo > > > one bad thought leads to the next bad thought and one spilled smoothie splattered all over leads to your crabbiness about your blush colour looking horrible and you messing up your eye liner. and running too late to worry about garbage day and the litter box is full and oh! okay, lets miss the bus by 5 seconds. and kaBAM we’re playing a wicked game of dominos. oh and yay, more clouds. by the time I was almost at work standing at an intersection waiting to cross the street, I was fighting hard to hold back some tears. at that point I was sad and angry for being sad and angry. and then, like meant-to-be kinda stuff , this old rough looking homely man with a cane came hobbling towards me and as he crossed in front of my path he looked over to me and said, ‘GOOOOD MORNING! Can we get a smile! (???)’  and it completely overwhelmed me with [more unneeded] emotion. I gave him a half-big smile just as it was my turn to cross the street. I made it to my desk just in time for the tears to start flowing. I was incredibly moved by the old-man-smile moment, sad about Monday’s thoughts and the clouds and also mad that I was even crying and feeling all this crap in the first place!!! the old man thing was a huge moment to me because, one > i’m usually always smiling. two > he doesn’t even  know that i’m having a sucky day. and three. > strangers don’t usually blurt things out to other strangers, so the chance of that happening to me in the state that I was in…. was a big ‘woah’ for me.

anyway, maybe hard to understand but that moment shook me back in to perspective. I was still crummy for the rest of the day but at least mindful about trying to fight to get out of it. this too shall pass. or so I thought.

later that evening I was going through my journal and reading some old entries as some sort of therapy I guess and I came across a post that actually put me at peace for a moment. I guess maybe it brought me back to my exact feelings in that exact moment. and I was there again. and I felt GOOD.

peace-and-calm-at-the-lake

Wednesday rolled along and with it brought a lot of good things to be happy about. nothing in particular…
the SUN, for one. frick YES.
international pink day and an excuse to wear the brightest pink shirt I have. + pink popcorn. he he. of course NOT to eat tho.
great workout at the gym – it’s so incredible how powerful exercise is for the mind.
my #pimpinJOY bag finally arrived. which is about spreading good things and thoughts to one another. so very fitting to arrive on a day that is about our fight against bullying.
my residential design class was starting back up and the excitement of almost being graduated ensued.

international-pink-day-

aaaand my happy was back. please don’t leave me again.

but it did. I think maybe only a day or two later and my friend sorrow swooped me back up. (but WHY?)

* * *  * *     **     *  * * * *    *    * * **        * ***      *********

the above note was written over 4 weeks ago. which was also supposed to be ready to post, 4 weeks ago. but the (above) emotional mess I was in + more physical illness (that I’m dealing with now) got in the way of that.

today I am finally able to reflect on what has happened and I’m putting my thoughts in to words. up until now I couldn’t bring myself to write. I kept putting it off cause my mind was so full. of everything. full of to-dos, and planning, and dreams, and ambitions, and cloudy judgements, and failure, and unachieved goals, and physical + mental stress and illness. full of gratitude. full of worry and challenges. anxiety. full of THOUGHTS. my mind is always full of thoughts. usually mostly positive ones! but this time, this round in this game of life, has been a little more challenging.

about 3 weeks ago I had an appointment to see my naturopath – it was supposed to be a quick appointment to go pick up a homeopathic treatment to get myself off the birth control pill, because apparently it’s a really bad thing to be on. and I’ve been on it for 12 years. and I’ve had colitis for almost 12 years…hmm. (I went on the pill for excruciating cramping)
interesting enough is every time I go in to a flare it’s right before my woman cycle starts. (more on that later.. I’m pretty sure there’s a theory there).
so this 15 minute appointment turned in to a 2 hour therapy session. everything that’s been weighing on my mind and heart, the emotional stress that I apparently had bottled up, all unloaded on to my poor doctor.  I guess I was just mentally and physically exhausted from all the illness that seemed to be ongoing – flare numero uno started on Feb 14 and lasted for my entire vacation. then after my flare was done, my body was weak and  I caught a wicked flu/cold that lasted for almost 3 weeks (who knows, maybe I picked up a bad bacteria that took residence in my gut). then after that I got a ridiculous cold sore. after the cold sore was thru my tummy started bloating up really big (which was not normal even for colitis girl) and I was getting a pain in my lower abdomen when I had to go pee.
my body was exhausted. and so my immune system took a hike and left me for the wolves.

so bring on another flare why not!

and it’s bad this time. I can’t remember a time where I’ve ever had two flares back to back. except way back when – those were the days that the flares never actually stopped. those were the days of prednisone. this is my grade 12 grad photo. that I never ordered.

prednisone-face

speaking of prednisone. for those following the blog, remember back in March when I became desperate to have a half-decent vacation and I took prednisone to get out of my flare? well, yesterday I went for an MRI of the brain as part of an IBD research study. When I got there I had to sign some waivers and go through some prep checklists. one of the questions was – have you been on any steroids in the last 4 months? ah, YEAH. good ole pal, prednisone. so she said, sorry, we’re going to have to cancel and reschedule your MRI.
for the life of me I CANNOT UNDERSTAND why these questions were not asked prior to me making a special trip down to the hospital? especially in my condition! I asked her why it mattered if I had been on prednisone. and the answer is because it F* up my brain. in a nutshell : )
seriously though. the prednisone messes with the chemicals and the hormones in the brain.
and now I am quickly reminded how important the mind and body connection is. (and going a little easier on myself for the emotional mess I was in last month)

anyway, every flare is bad, but this one is bad bad. bad like they used to be 10 years ago. it started at the end of April and it came out of nowhere. or so I thought. my first mistake this time around was pretending like it wasn’t happening. I was in mega denial that it was happening again. ESPECIALLY because last year I went an entire year in remission and now this year I’ve had TWO flares already? and only a month apart? wth.
(so yes, I was in denial.)
At the very first sign of a flare I have to reeeeallly tighten up my diet. and that means NO COFFEE. and I love my coffee so that’s a really painful one. and it also means no roughage – no nuts or seeds, raw veggies, anything that is hard/crunchy etc.  it also means, no cheating – when I was in remission last year I was able to have the foods/drinks that I should be staying away from…  dairy, gluten, potatoes, popcorn, alcohol + more. anyway, the flare started and I continued to have my coffee like a moron. 4 days later I accepted what was happening and said my goodbyes to Joe. I started pureeing all my food to give my intestines a break – when I go in to a flare-up they are raw and full of open bleeding sores. so yeah, liquid food, not so fun. a week in to the flare and only eating ‘liquid’, I was getting worse. so the liquid diet thing must not be helping then, right? WHO KNOWS. but I convinced myself that it wasn’t and went back to eating more solid (but soft) foods. by the start of last week I was falling a part in every way. I was going running to the washroom 20 + times a day, my brain started working weirdly, and I was still trying to go to work. which I know wasn’t a good thing – I was overdoing it but we had an event coming up that I thought was more important than my health? or something stupid like that. STEP ONE in curing any illness is REST. so I’ve been off work since last Wednesday (missed the event and all that insignificant stuff.. in the big scheme of things) and I’ve been getting lots of rest which in itself has been very beneficial. when I’m in a flare as bad as this one, a simple glass of water will make me sick. every time I leave the washroom, I only have enough energy to go lay my head back down. when I saw my naturopath last week he said I was on the way to anemia from all the blood I was losing (remember I go in to flares also when my cycle starts. yes, FUN TIMES) so he gave me a B12 shot which gave me my energy back for about 2 hours. I really should have gone for blood work because my iron was probably for sure low. I’ve just been so sick of so many dr. appointments. all I wanted was to lay on the couch and get lost in someone else’s world on tv. my brain was paralyzed. a glass of water was enough to make me run to the washroom. and after running to the washroom 20 + time I’m pretty much just passing blood and rubbing my tummy over and over praying for the pain to stop. sorry for the TMI (too much info) but I have to be careful not to sugarcoat this disease. a really big struggle of mine is dealing with an invisible disease. when people say to me, oh you don’t look sick, that hurts. a lot. and this disease is a tough one to talk about. but after 11 years I’ve finally found the courage. I will try to be the voice for so many who can’t speak about it. you are not alone and I hope pray you find this blog.

The major game changer for me in healing this particular flare has been a very very powerful probiotic I started last Tuesday. I’ve known about it for quite some time now but never tried it before because it is very expensive. and it’s not covered by insurance. It’s called VSL#3 and the pharmacy orders it in. It’s $114 for 30 packets. I would recommend it to anyone suffering with gut problems. If you can afford it, it’s worth the try! there are a lot of testimonials out there  –  it’s even being used for Autism and some have noticed a significant difference  (that also includes being on a specific diet)
I started with 1 pack per day but quickly upped it to 1 + 1/2 packs a day because of how much of a positive difference it was making in my gut. it only took two days of being on this stuff  that I started to noticed an incredible difference. Today I’ve been on it for 1 week and am going to start taking 2 packs per day to try and get me out of this flare quicker.  I was taking one before bed and FINALLY started sleeping through the night. so now I’m also going take one first thing when I wake up.

colitis-flare-remedies
my ulcerative colitis flare-up fixes: cognitive behaviour therapy (don’t STRESS), sweet snuggles, and VSL#3!!!

the two very big changes I had made to my diet a year ago was eliminating gluten and adding bone broth bone broth bone broth. this is what I believe played a big part in keeping me in remission for that entire year. (exercise and stress are two other key components). What took me out of remission (and lead me to the flare in Feb / the flare that just keeps on givin’) was chronic stress [about something specific] and not following my diet. I had two alcohol ‘binges’ 13 days apart. SO ridciulous of me. but heck did we have fun! ;-) (not so worth it now)

I’ve been on asacol for 11 years.(and that scares the shit out of me – LOL no pun intended) this is a drug used for maintenance and for flare-ups. so when I’m in remission I take 3 800 mg pills per day. when I have a flare-up I take 6 of these pills. this medication is specifically designed to only ‘open’ when it reaches the intestine. and yesterday I found 3 unopened/undigested pills in the toilet. so yeah. my digestive system is still broken.

so the mayhem continues. it actually all started around the time I started this blog. which is kind of ironic because one of the reasons I started this blog was because of how well I was doing with my colitis. and wanted to help others. funny, I want to help others and I can’t even help myself.
that’s not true. but sometimes it’s easy to believe.

aside from being a little broken [physically] at the moment, I am happy to report that my sweet friend sorrow has left me. which is a perfect sign that I am slowly healing. (they say the gut is our second brain. and these IBD research studies I’m involved in are studying the brain. I am VERY happy that is being studied ) I am also so so thankful for all the support I have from my family, friends, and colleagues. impromptu visits with Kate and my Mase man <3, my (better be future) sis-in-law did my grocery shopping for me last week. bless her. my boss and colleagues are so caring and understanding – they’ve got my back and have been stepping in for me. what a great team. a very sweet lady I’ve only met once, texted me her work schedule and said to call her for whatever I need (SO kind). my instructor is an angel and has been so accommodating with all the classes I’ve been missing.  my mom, my hero. she is still taking care of me like she did when I was a child. except now she has two kitchens to clean! ha ha. messages from friends and fam checking in on me. it all means SO MUCH to me and I THANK YOU.

as long as we have love in this world, everything will be okay.

-always with a grateful heart,

j

 

colitis sidelined me on this vacation. but that’s okay.

colitis-eating
[it’s okay] because, it could be worse. > > > I could’ve been on an all-inclusive vacation!! I would’ve been SOL. I would’ve had to cancel probably. can’t eat ‘normal’ food and bevies are a DEF no. SO. I am very gratefuI that I was given the means to survive on this vacation. cause being here in Mesa, with papa Gordie allowed me to prepare and cook my meals the way I need to.. being in a flare-up. and the comfort of a home to rest versus a hotel, super good thing.
prior to my arrival dad was tasked with finding a farmer with grass fed cows to get me my organic beef marrow bones. for my [miracle potion] bone broth. (/a big\ MORE on that later.) and he was also tasked with making it for me. it takes 48 hours to cook and was done on my first morning here. woo hoo. merci buckets daddy-o. it also cost him a small fortune to feed me these past two week. organic / non-gmo everything. also suuuper grateful for that. the money I brought down to pay for my food instead allowed for a shopping spree. ha. YES.

since my ‘coming out post‘ things got a little worse for me here. gosh darnit hey. I’m not for sure certain that I wasn’t getting better but I definitely was paranoid (because I felt and saw some changes) about getting worse. and started thinking about the evil monster, prednisone.
prednisone and I go way back. and we are not friends. prior to last last January (2015) I hadn’t had to think about prednisone for probably about 7 years.
rewind to last January. that was probably my worst flare-up in 8 years. and it started about 4 weeks before my holidays. It was only a week before my trip (to Mexico, then Mesa) and there was no reprieve from that flare-up in sight. I was freaking out because I couldn’t be on holidays in that condition. my specialist gave me two options: either I sign up to participate in a new trial drug that would involve me going in to the hospital every 6 weeks to be injected intravenously  OR I go back on prednisone. (actually there was another stupid option that involved me injecting myself every 2 weeks. yeah hell no. God bless you diabetics) anyway. for those of you that have experience with this drug [prednisone] long term, you know how horrible it is. but what option did I have? I sure as heck wasn’t about to try out any new drugs (+ trial?!) only a week out from my trip.
frick.
so anywaaay.
I took the damn prednisone. [side note: the first 3 years of this disease I was on prednisone all the time. and it didn’t even get me out of flares back then. and the side effects are hell.]
long story short, I ended up getting out of my flare half way thru my week in Mexico. I was on the prednisone for a total of 5 weeks (the last 2 weeks were small small doses just to ween myself off). then after that I swore I would NEVER go back on it. but then hey look at me here in Mesa thinking about the devil again.
so here’s what happened. I had some left over pills from last year and  took them with me. just. in. case.
and I was thinking about them like a bloody drug addict. (not a drug addict.) I only had enough to last me like 5 days, at a small dose (20mg). and I had them in my hand ready to pop them down and I talked/guilted myself out of it. I had done such a great job at keeping this flare under control (this time around) that I really just wanted to get out of it on my own knowing that I could do it without succumbing to stupid prednisone.
then the next day I was pounding those pills back. cause it just felt easier. like a done deal I guess. a deal that I would get to fully enjoy my vacay.
but deal my ass. by the 4th day of me self-medicating I wasn’t seeing any noticeable signs of the flare taking a hike. and all my selfish-self wanted was that ‘guarantee’ that I could enjoy the rest of my vacation and for the love of God just FINALLY have a cup of damn freakin COFFFEEEE. how in the hell preggo people do it for 9 months is beyond me.

so last Wednesday morning I had a good little cry. and then dragged myself to an Urgent Care. to get me some more damn prednisone.
and guess freaking what. because she [the doc] wasn’t a GI Specialist (Gastroenterologist) she couldn’t/ wouldn’t give me more than a 5 day prescription (and at that point I had 11 days here left). OR. she could schedule me to come back for a list of a gazillon different tests that would reconfirm the disease I’ve had for the last 11 years. like FOR REAL. I already had my colonoscopy for this year, thanks. they are not fun.
So I begged her for the biggest dose she could give me. I knew I’d have to cut it down and make it last for the remaining 11 days of this trip. (I did not tell her this).

and here I am tonight, feeling like today was my first day coming out of this flare. WOO HOO. (!!!) betcha I’m 100% good-to-go by the time I board the plane home on Saturday ;-). but that is okay. yes, I was limited on what I was able to do and had to pass up an awesome hike up Superstition Mountain – super sad to have missed that. and having no alcohol on vacation is kinda painful too. *but* I still really did make the best of my trip. it was as great as it could be. and I made chocolate muffins out of QUINOA. I will share the recipe.
tomorrow I have some really exciting plans for my last day here. will tell you all about that + more, next time.

subconsciously I think I was worrying and stressing about not being well for my trip which in turn made things worse for me in the end. it’s unreal how crazy important the mind and body connection is. mindset is half the battle.

and I feel guilty for turning to prednisone this time around. but whatever. i’ll get over it.

bon nuit my peeps.

– j

my ‘coming out’ post. ulcerative colitis.

*yesterday*
sitting here up in the sky, flying away from all the busy and hectic, I have finally found a moment to just focus and really think. think about how I want to officially come out and talk about my important ‘why’ for this blog.  it’s been 4 weeks since we started this blog and I’ve been waiting for, or searching for, or planning for, frick I dunno, the “right” moment to just come out and say it. or maybe i’m trying to find the courage? i’m kinda scared I think? going back and forth in my brain wondering if this whole blog thing was even a good idea to begin with. scared to put myself out there and share all this private stuff. and for nothing maybe? what if no one listens..or cares? what if no one believes? and all this DOUBTING… is not my style either. geeze. jenna. just believe!! ;-) [Side note: just believe World is a company that I co-founded back in 2010 and then life got in the way and it got put on the backburner. I still have plans for it. and big dreams.] 

maybe I thought my first post about {this} would be me sharing my celebration with you. celebrating the first time **ever** going a whole entire year in remission. maybe that’s what I was waiting for…. for that one year milestone. but then it never came. cause another flare-up attacked instead. when it happened this feeling of defeat and sadness took over.  but then someone reminded me, that even though I may not have made it to my one year mark, I have not failed. I am like two weeks short of going a whole year without a flare – and that is amazing!! (in the last 8 years, except this last year obviously, it was typical for me to have 2-3 flares per year. and the first 4 years of this disease it felt like the flares were one after the other. I was a very sick girl.)

the last two weeks have been a little chaotic to say the least. chaotic with this flare-up, work, school, projects, unexpected shit, family time || *life* . right now, I’m on my way to Mesa, Arizona which has been a planned trip for some time but is turning out to be a much needed escape. i’ve left the worries and the exhaustion and hopefully the illness, behind.  (environment does make a difference)

so here it is. when I say flare-up, I am talking about colitis. I have ulcerative colitis. and I have come a long long way in the last 11 years that i’ve been fighting this battle. i’m pretty much to the point where I can almost say that I control this disease and it does not control me.    >>> I control this disease. it does not control me <<<    ….for those that fight this fight, you know that that statement is HUGE + bold. and you may even think i’m crazy and that it’s not possible. if someone would have told me that 8 years ago, that I could have control over this disease, I think  I would have been skeptical.

*today*
well I am happy to report that Mesa has welcomed me back with arms wide open. SO. bleepin HAPPY to be here. time for the healing to begin! this morning I found an AMAZING grocery store called Sprouts Farmers Market – this place is like a dream come true for a girl like me: *fresh*health*organic*devil-free, like my brother puts it, ha ha (gluten-free)*so.many.options/selection*  if only Winnipeg had a place like this. damn I love the states.

for those reading this who feel like they are suffering, it is my wish that you too can live a great story despite having colitis. I would really like to share with you what I have learned.

for those reading that don’t know what colitis is, i’m hoping to spread awareness. to give a voice to this invisible disease. the way my first specialist explained it to me: it’s like someone took a cheese grater to the inside of your intestines. and then they just don’t work. and you bleed and you hurt and you can’t eat/drink and you’re weak + more.

tbc cause I need some zzzzzzzzz’s.

-me

(to get a better understanding of this post, read my first post.)