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.
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.
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,