My long journey towards diagnosis appears to have finally tottered to an end.
I haven’t updated this story in a while – when last we heard, our hero had discovered that 9mg of Budesonide EC was no longer effective in managing the abdominal pain. Since then, I’ve discovered that I had an FC (fecal calprotectin – don’t ask) score of 376 (it’s supposed to be < 50, so let’s hear it for “You Definitely Have Crazy Intestinal Inflammation”), and I’ve been to see a pain specialist, who turned out to be marvellous.
Absolutely marvellous. I’m now on 150mg of Lyrica (pregabalin) per day to manage what is apparently termed “Visceral Hyperalgesia” which is what happens when your viscera (innards) are so used to being in pain that your spine starts sending pain signals even when there is no reason to do so. It turns out that peristalsis should not hurt. I now rarely take my prescription codeine (although it is necessary when I break keto for fieldwork, because my inflammation and thus pain levels skyrocket). I can even take an extra 25mg of Lyrica one hour before a running workout, and the change in blood supply to my abdomen won’t cause me to stagger to a halt from pain.
To continue on this winning plan, I turned out to qualify for a pill cam, thanks to some surprisingly low iron (honestly, I was not expecting that).
This was exciting, I-live-in-the-future stuff. I actually ate a camera. I wish I’d taken a photo of the damn thing. It was probably about the size of a large fish oil pill. Then I wandered around all day with a belt and a sensor attached, while taking Amos for a walk, collecting next door’s dog for a visit, and watching Netflix. It was the most productive medical examination I’ve ever undergone, given that usually I’m unconscious at the time.
Anyway, then I went on a ship for nearly three weeks of fieldwork, during which time I was, unsurprisingly, not getting Telstra reception and thus not able to get my test results. As soon as my feet hit dry land, I called my surgeon.
And got my result.
I was right. I have Crohn’s Disease, ileal (i.e. in the small intestine). Patchy inflammation throughout, so reasonably widespread, although I’ll get more detail on how widespread when I go see my surgeon. It just hasn’t turned up in the first 80cms or so of small intestine that can be examined in a gastroscopy.
At first I was relieved. Immensely relieved. Also, surprised. I wasn’t surprised by the diagnosis – since that’s what I thought I had, for a long time – but by the fact that I actually got one. I’ve been getting medical tests that say “well… sort of?” or “you look normal, honestly” or “that’s a bit weird but…” for so long that, even after the FC score, I was still expecting the result to be inconclusive.
Now, it’s started to sink in that I actually do have an incurable progressive autoimmune disease and, while I feel a great deal better about the fact that I have an actual label I can put to what’s wrong with me (it’s not all in my head! I HAVE PROOF!), I’m not feeling great about the big picture.
My future will probably involve some reasonably terrifying immune suppressants, and it’s overwhelming. Imuran is the nominated drug in question, and Googling that made me want to curl into a little ball of panic. Fingers crossed that my reasonably good luck with side effects continues (I’ve managed to avoid side effects for Zoloft, Lyrica and Budesonide so far, because I’ve been blessed with the medication tolerance stick, but those are relatively benign drugs). I won’t find out more about it – the dosage, the risks, the monitoring plan – until my next appointment with Surgeon Sam, which is – who’s counting? – eleven days away.
What else my future will involve… is unclear. I’ve been brushing up on Crohn’s, reading the books that I’d already read albeit now with closer attention. Previously I’d been reading up out of curiosity, a bit of concern, and suspicion, as well as the comforting notion that if I did have Crohn’s Disease, I had a relatively mild form of it (this is still true. Mild for Crohn’s). Now I’m reading it with the reality that this all applies to me, at least potentially. This changes things.
My short-term goal is to get into remission. This will aid my long-term goal, which is to reach a ripe old age with my small intestine intact. This is now a goal I have to actually think about, as opposed to a smart arse off-side remark about something I might or might not have. I have to consider the literal possibility that I might have loops of my intestine resected (which is, as near as I can tell, a fancy medical term for “taking out bits of you and joining up the other bits, you’ll never notice, I swear”).
I probably have carbohydrate malabsorption (hence, why I do better on keto). I may have some iron malabsorption (hence, low iron, in spite of the vast quantities of iron-containing foods I consume on keto). There are huge categories of nutrients my damaged gut might be unable to absorb, leading to long-term issues. Iron, calcium, magnesium, folate, and the reabsorption of bile salts are all a matter of some concern (that latter one will explain the agonising gall bladder pain I occasionally get. I am hoping to hold onto my gall bladder for as long as possible, since I eat a high fat diet and I use the damn thing). The giant pile of supplements I started taking to account for deficiencies in my diet now morphs from paranoia into necessity.
Here’s my dream outcome: the terrifying immune-suppressants work, and I get into remission. I slowly wean off the steroids – and the immune-suppressants – and get to be a person who is just monitored. My flares are rare and separated by long periods of happy, non-active-Crohn’s time. My fatigue issues go away. My pain issues go away.
This is medically possible.
Whether it’s likely – and whether it’s more likely than other outcomes, which involve surgery and long periods of being unable to work – I don’t have the expertise to say.
So this is an emotional rollercoaster, but on the bright side, at least now I can stop wondering, and I can access more aggressive treatment, and I can easily describe what’s happened to me (this is crucial. Labels are very important to me).
It’s very hard to think about anything else. I might be a one-trick pony for a while.
Happy Diagnosis Day.