September 12, 2016

Life Lately & My (Crohn's) Gut

Let's see, aside from my relaxing (?) week of conferencing and off-roading (which I'm still feeling a little refreshed from during work hours), what else has been going on in life lately?
My best friend from college and I have met up a couple of times to try new places - The Social Taco and Leaf Tea House (both delicious). I baked my first apple pie and took a new friend for (my first) bibimbap for her birthday. I cooked a surf & turf dinner, not to mention I rode all the way to Fossil Cove Brewery on my bike without incident! (Ironically, this morning's On This Day tells me I posted to Facebook that I rode for 10 seconds at the Honors Retreat in 2009 this past weekend.) It's the best I've ever ridden (and I was even more terrified without the frequent stopping as per usual). We graduated two of our families last week and have a couple more graduations approaching.

Oh! And I have a new roommate! Ha! I'd said at the time when I decided "no more roommates" that I wouldn't specifically look for a new roommate and bank my lifestyle on it (get it?), but if I came across someone I just wanted to live with I still would to help out with the bills. A certain circumstance fell into my lap that fit that criteria so I took it as a sign!

I also went to Whole Foods Market for the first time. Now, I'm not crazy about Whole Foods, especially since I have access to places like our local farmer's market and Ozark Natural Foods, but it's still better than Walmart - but mainly, I'd never been in one and wanted to check out what all they had that I maybe couldn't find elsewhere. I still ended up leaving with a "few" items and am looking forward to trying these Epic bars that keep popping up. I'm leaning towards the Autoimmune Paleo (AIP) diet - but my own modified version (which is the end goal of the diet) - before I dive head first, however, I'm going to re-introduce more anti-inflammatory foods to my diet so I can adjust to their flavors once again (fermented foods, etc.). I've done this before but I lost steam and am looking to refocus my energies so I can start feeling good again. I'm really missing the feeling that prednisone gave me at the beginning of this year (though I do not miss the self-conscious moon face)...

With that said, I may just end at eating more anti-inflammatory foods. I don't know that I can actually stick to the AIP diet, and the best kind of diet is the one you can stick to - not to mention that there are certain conflicts between the two (with certain "no-no" foods being great anti-inflammatories). Nightshades make up a lot of my favorite meals and I'm not confident I could ever give them all up (especially tomatoes & peppers). I try to look at dieting as a focus on adding more good foods than elimination desirable "bad" foods - that way, you're less likely to eat the latter if your focus is on the former. But before I really start all this, I have some prep work to do: adjusting my taste buds (I've homebrewed kombucha a few times and it's certainly an acquired taste), using up groceries that do not fit the criteria, and obtaining a few unique items (like restarting a new SCOBY's continuous brew). I want to make it as easy to commit as possible when the time comes to switch over and make any lapses easily avoidable. This doesn't mean I'm going to turn down meals others have cooked for me or not order what I want at restaurants or take holiday breaks - the entire purpose is to live a generally more healthy lifestyle, not be perfect.

- - -

I guess I've mentioned a few times that I would write a future post (or posts) regarding my Crohn's disease, and going on about this diet stuff is as good 'a time as any. At the beginning of freshman year of high school I began to have severe abdominal pain, almost suddenly. A few years prior I'd had similar on & off pain without thinking too much of it (I assumed it was the early signs of starting my cycle, being told how bad menstrual cramps can be) - but this new pain at age 14 was more consistent and intense. For whatever reason, my pediatrician at the time swore up and down there's no way my older brother (who'd already been diagnosed with Crohn's) and I could both possibly have Crohn's. (Luckily we all know now how common it is to run in families - my cousin has it, too.) He decided I simply had irritable bowel syndrome (IBS/IBD) and prescribed some medicine that may or may not have set off an even worse attack shortly after I started taking it.

When I went in at that time, the hospital staff thought I maybe I had appendicitis, but when they realized that wasn't the case, I was shipped off to Arkansas Children's Hospital (ACH) and eventually given the diagnosis of Crohn's disease, which was later re-confirmed with a tissue sample that had been shipped off as well.

My Crohn's stayed moderately in control throughout special care and various medications with the ACH doctors during high school (though looking back 10+ years I no longer really agree in comparison) until my senior year, when I began to have significant relapse. It was decided that I would have to undergo ileocecal resection (surgical removal of a few inches of my intestines, where the small meets the large) when my intestines began to attach themselves to my abdominal wall and fistulas (small holes) began to form, in addition to the inflammation causing sever blockage. It was a big deal for my family at the time because even my brother, ten years older than me with a seemingly more severe case of Crohn's at the time, hadn't been forced to undergo the surgery (he since has).

While it was scheduled for a later date, it ended up happening as an "emergency" surgery. I happened to be in Little Rock for an FBLA conference and a few hours (at most) before it was time for us to leave for home, I began having severe pain and vomiting - my school group took me to ACH and stayed as long as they could, giving my mom time to head my way (a ~2.5 hour drive).

I still had to wait for a slot, of course, but they admitted me to the hospital. There was a little girl in my room, maybe 10, with a complete blockage who was in such misery during my stay, it was absolutely heartbreaking. A diagnosis at 14 had seemed young to me - I can't imagine being in elementary or middle school at the time.

The day of my surgery it was taking forever to find a wheelchair and they let me walk (if you're very familiar with those circumstances, that never happens) - I quickly agreed as I was ready to get it over with popping a white pill in as I entered the room and climbing on my own operating table. (I was mostly glad to be asleep... they had kept me numb but awake when putting a PICC in my arm which was terrifying, even with the Eagles in the background.)

The surgery went smoothly, and I was very impatient to get out of the hospital afterwards. First, however, I was given triple the steroid dosage I was supposed to be receiving (and it had been the doctor's fault, not the nurse's). Whether or not your familiar with what that means, it's a really big deal. What was worse was that my mom and I had been trying to point out something was wrong and no one had really been listening to us - I was so small without steroids that, to someone who didn't know me, I looked "normal" when I was puffed up on them. Finally, my PA paid a visit and she jumped on it immediately, recognizing my cankles as unnatural. I was "temporarily diabetic" and had to measure my blood sugar and take insulin for a while afterwards - can you believe they made me buy my own insulin after their mistake? (To clarify, the rest of the staff was amazing at Arkansas Children's Hospital and I love a good nurse - but I do wish the hospital would've taken more responsibility for their horrible mistake and are fortunate it turned out as "minor" as it did.) The main other disappointment was I didn't fit into my prom dress (!), which they let us go sooner than they wanted to so I could attend my senior prom with my friends. After everything my mom had supported me through, I was a total brat to her that day as she worked hard to lace up the side opening like a corset and find a matching scarf to cover up with.

Post-surgery, my Crohn's was the smoothest it had ever been since diagnosis - up until last winter. They told me at the time of surgery that 2/3rd of those who undergo the surgery have to have another within 5 years. I had gone from April 2009 to December 2015 without any significant pain, and I'd been pretty stupid and loose with how I treated my body during that time (meaning I didn't consistently adhere to any diets and totally took advantage of feeling good). But at 5 AM one cold morning, I awoke in churning pain reminiscent of my younger days. I decided to wait to see if it would pass (I had, after all, experienced the occasional ping of pain or dull stomachache throughout the years) and hopped in the shower, hoping it would relax me... but by the end of this shower I was on the floor of the tub, pulling my pajamas on, grabbing my keys, and taking myself to the emergency room.

They found a sizable but not complete blockage and admitted me into the hospital. I received a new GI doctor (had never found one in Fayetteville) and was put back on Humira. It was when they put me on steroids for a couple of months that I'd realized how bad I'd been feeling for some time - not by my stomach but by my joints and energy levels. The smallest tasks had worn me out, but now it was like I was on speed. I accomplished all the things and constantly made delicious meals a kept an impeccable house during that time.

The funny thing is I was really just living a "normal" life... I wasn't really accomplishing anything extraordinary. It was just the stuff the average person completed within a week's time, I could now do as well. Unfortunately, I can't just stay on steroids (and I wouldn't want those chipmunk cheeks 24/7 anyways as I already "suffer" from a round face shape), but I guess the beginning of this post started because I miss that steroid feeling. I want to stop being lazy about the scrumptious but unhealthy things I feed my body and start using food as my farmacy (in addition to the Humira, of course).

Anyways, with all that said, stay tuned and you just might read about some dietary changes and consequences in the future. Let me know if you have any questions about my story or if you're in need of support as you learn about your own gut or autoimmune disease. Cheers!


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