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

 

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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.)