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.

Continue reading “How do YOU survive a colitis flare? day7 and it’s been a #shitshow thus far.”

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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. 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. [update: i’m a bit skeptical of the dairy kefir. so for that I’ve been off of it.]

 

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

another bad flare-up. ulcerative colitis.

today I am finally able to reflect on what has happened in the last 4 weeks and I’m putting my thoughts in to words. up until now I couldn’t bring myself to write since my last ‘to be continued post‘. 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 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 pains)
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 healed, my tummy started bloating up really big (which hasn’t been an issues since the first 5 years of having colitis) and I was getting a pain in my lower abdomen when I had to go pee.
my body was exhausted. and 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*’s 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 almost 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 cheat foods – when I was in remission last year I was able to have the foods/drinks that I should be staying away from or at least be eating in moderation…  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 my intestines are raw and full of open bleeding sores. so yeah, liquid food, not so fun, but is a must. 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 weird, 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 came to my senses and now 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.

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’s 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! (even if you can’t afford it) There are a lot of testimonials out there  –  it’s even being used for Autism and some have noticed a significant difference  (which also includes being on a specific diet. I believe that is true with any disease, but I digress.)
so 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 ‘healers’ for ulcerative colitis flare-up: 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 management 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 (this disease) actually all started to worsen 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 so kind). my residential design 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.)