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.
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…
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