My Dear “Kindred Spirit,”
So, part 2. (Part 1 is here, if you haven’t read it yet).
Where were we?
Oh, yes – diagnosis: Ulcerative Colitis.
Allow me to take a moment here and try to convey to you just how much I abhor the name of my disease. The Crohn’s people get to say “Crohn’s Disease,” and if you don’t know much about autoimmune disorders, that could be anything! Same with Celiac Disease. Even “Irritable Bowel Syndrome” – which, granted, doesn’t exactly have a great ring to it – at least doesn’t have all the descriptive grandeur that “Ulcerative Colitis” does. The only thing I hate more than having to tell people the name of my disease is the disease itself. So I usually just shorten it to “UC.” Doesn’t help much, but at least it occasionally lets me save a little face…
Ok, rant over (for now, at least).
So I get home, still feeling pretty miserable (did I mention that I also had a cold at the time?? Yeah, it was just a great day for me overall…), with two more courses of antibiotics, a little packet of steroids, and a huge bottle of Asacol.
I didn’t take the pills. Any of them. For like 2 or 3 days. Then my brother came over.
“So… dad called me and said you’re not taking your medicine. He’s afraid that if he tries to talk to you about it, he’ll just be so upset that it’ll be counterproductive. So he called me, and I’m supposed to get you to take it.”
I honestly don’t remember why I was being so stubborn about the medication – now I have my reasons, but at the time I wasn’t at all the crazy hippie I am now. I really didn’t have anything against taking medicine. I think it was just that I couldn’t bear the thought of being on medication for the rest of my life, so I didn’t even want to start down that path.
And the antibiotics… they were the same ones I had taken after being in the ER the previous fall, and I just remembered having such a difficult time with them (gagging on the pills while trying to swallow them, puking them back up once or twice…). I wasn’t in a hurry to repeat that whole process.
I guess my brother can be quite persuasive, though. I started taking the medicine… (Well… except for the antibiotics. They’re still around here somewhere. Please don’t tell my dad!).
Boy, them steroids work! While you’re taking them, that is…
I felt awesome for the 10 days I was on the steroids. Then I was off them, and immediately started feeling not-so-great again.
It was supposed to take up to a month for the Asacol to really “kick in.” I guess it did at some point. I know I eventually started feeling a little better. Key word there is “little.”
I can remember being at the doctors for a follow-up appointment, and him asking if the medicine was helping.
“Well, yeah, I guess… still getting a good bit of cramps, though”
“Oh, that’s probably just a side effect from the medication.”
Lovely. So this medicine has side effects that are the same as the symptoms of the disease they’re supposed to be helping. Nice. Real nice…
I kept trying to bump down the dosage on my medicine. It was bad enough to have to take medicine every day, but taking 10 or 12 pills a day was just crazy. So I kept lowering the dosage (hey, the doctor was planning on lowering the dosage anyway. I just decided to do it a little sooner than he probably would have, that’s all!).
The next year or so was just a roller coaster for me. We (as in, me, and – sometimes – the doctor) kept messing with the dosage, but it really didn’t seem to make much difference with my symptoms. They just did whatever the heck they wanted to do (much like my hair, actually. Just does whatever the heck it wants to do, regardless of what I think it should do…). Most of the time the symptoms were manageable, but sometimes they decided to act up and put me in a lot of pain.
By this time, I had already asked Google a lot of questions about my disease, and was, without realizing it, beginning my process of becoming a hippie.
It started with looking up herbs. I have had an interest in medicinal herbs for as long as I can remember. In fact, I did medicinal herbs as an elective in high school. (Hah! Can’t do that kind of an elective in public school, now, can ya?! Are you non-home ejjikated people jealous of my awesome homeschool education yet? Cuz ya should be!!).
So I wanted to find out if there were herbs I could be taking instead of prescription medications. (I found out there are some herbs that help, but that’s another post for another day…).
I wondered about the side effects and long term effects of the medicine I was taking, so I read up on that a little. My desire to get off the damn stuff – yesterday! – deepened.
I wondered whether UC really was incurable, like I had been told, and started reading about that. I slowly came to believe that the human body is capable of healing itself from just about any disease, if given the opportunity.
I wondered whether diet had anything to do with my symptoms (the doctor claimed it didn’t, but… I had a hard time swallowing that). I started reading about the effects of diet on digestive/autoimmune disease.
Long story short (you’ll get the long story sometime, but I’ll go with the short story for today), I came to the conclusion that I needed to change my diet – drastically. I decided to follow the guidelines of the “SCD” (Specific Carbohydrate Diet, developed mostly by Elaine Gottschall). I chose this one because it is the slightly “easier” version of the “GAPS” diet (Gut and Psychology Syndrome, developed by Natasha Campbell-McBride), after reading the “GAPS” book and being completely blown away by the information I found there.
This meant cutting out all grains (yes, all grains… including rice and corn), refined sugar (the only sweetener allowed is honey), most dairy (except for aged cheese like cheddar), and many other “starchy” foods (such as potatoes…).
A very life-changing diet, as you can imagine.
I kept putting off starting it, even though I really felt I needed to eat that way to begin healing. I was just too nervous and lazy to “take the plunge.”
In February of 2014 – a little over a year after being diagnosed – I had my first “major” relapse. I didn’t end up in the hospital or ER, thankfully, but I went a few weeks not being able to eat much of anything, and in a lot of pain every day.
It wasn’t fun, but it was also the “kick in the pants” I needed.
I bit the bullet, and changed my diet. Big time.
(For a while, at least).
P.S. Yeah, there’s obviously more to the story, so… To be continued (again).
Edit: Make sure to check out part three of this story as well!