Diagnosis Roulette: Cautious Optimism vs O FRABJOUS DAY

So far, in 2016 I have had:

  • surgery to correct an abscess
  • an MRI, recommended by a doctor at the outpatient clinic after the surgery who was horrified that no-one had ever actually tried to figure out why I’ve been getting regular abscess since I was fifteen (implied: “The A.F.? Your GPs are all hacks?”)
  • an “examination under anaesthetic” combined with an extremely minor incision to correct the proximal cause of that particular abscess
  • A colonoscopy to look for signs of Crohn’s Disease in large intestine (possible ultimate cause of abscesses): clean.
  • Another MRI to look for signs of Crohn’s Disease in small intestine (possible ultimate cause of abscess): clean.
  • Blood test to look for signs of Crohn’s Disease (when advanced, it causes various deficiencies): clean (in fact, my B12 is amazeballs)
  • Stool test (sigh) to check for signs of inflammation: came back borderline. Definitely over the “normal” range, but not comfortably in the “holy crap, something is wrong with your crap” range.

At this point, I took a break. I’m reasonably sure that “Diagnosis Fatigue” is a real and common problem, and I was so tired of being told that everything was more or less normal. I’d spoken to a colorectal surgeon and a gastrointestinal surgeon and a gynaecological surgeon so far and there were no solid plans or answers.

I went on a holiday, diving in Vanuatu. I mostly stuck to keto, except when I was on holiday. I was in pain more or less constantly, but the nausea and fatigue were much worse when I ate carb-heavy meals. I went to a conference in New Zealand. I signed up for another year of national committee service, about which I feel conflicted as I have been too exhausted, sore and miserable to do much productive work on that.

The pain steadily got worse. I put some of it down to endometriosis, which I’d been diagnosed with in 2012. I’d had a laparoscopy, which had corrected the endo, and had a year or so of much easier periods, and just figured it had come back.

So I got back into the game, because who needs to put up with that shit if there might be answers? I girded my loins (there’s a pun in there somewhere), and picked up my Diagnosis Bat (it’s like a cricket bat, but way more metaphorical), and went back to my specialists.

In the second half of the year, I’ve had…

  • A second laparoscopy to correct endometriosis. There was no endometriosis. My intense period pain can potentially be attributed to gut issues (they interact in a fairly intense way – particularly if one is an inflammatory disorder. Any inflammatory disorder can potentially make your periods hell).
  • …another poop test (SIGH).
  • A CT scan of my small intestine (mmm, delicious barium sulfate): clean (the tech thought there might be a small region of “narrowing” but it wasn’t certain and my surgeon thought it was probably just peristalsis).
  • A gastroscopy: small spots of inflammation spotted in jejunum (first loop of small intestine). Biopsies taken. Biopsy came back clean.

These last two procedures happened very quickly, largely because I went back for another consult with my G.I. surgeon, and in contrast with my previous consult I was able to say with some confidence that I was literally in pain all the time. The previous appointment, a few months prior, had merely involved being in severe pain intermittently.

We’d progressed from “intermittent” to “all the time.”

While all this was happening, I was more likely to become nauseated after eating, no matter what I ate (again, less nausea with high fat foods). I was more likely to get what I refer to as “stabby pain” which needs to be distinguished decisively from “burning, cramping pain.” The latter is really awful and is constant. The former is genuine agony, which last week rose to indescribable heights and I would have ended up in the Emergency Department if I’d been able to think clearly instead of just sitting on the couch crying and screaming and upsetting my dogs.

My G.I. surgeon is a lovely man. I had no troubles about reporting pain, and at no point did he assume that “I can’t find an obvious cause” correlated with “the pain is all in your head” (which happens to a lot of people). He has taken this very seriously at all turns, and he also knew I was about to head off on fieldwork (I fly out tomorrow), and some action needed to be taken. He was comfortable diagnosing inflammation in my small intestine, regardless of what the ultimate cause might be (still could be Crohn’s. Still could be something else, although names for those Something Elses escape me presently).

He prescribed me 9mg Budesonide.

This is a corticosteroid that is mostly processed in the liver (about 90%), so unlike prednisone, the excess drug doesn’t just wander around causing systemic side effects. It’s much more target specific in that sense. The drawback to this is that it takes a lot longer to take effect. Prednisone can result in improvement within 48 hours. Budesonide takes – on average – 10-14 days to kick in.

I have been dutifully taking my three capsules, half an hour before food, every morning when the alarm goes off. I’ve been curiously watching out for ‘roid rage and mood swings (got a wee bit manic a few days ago, but there could be alternative explanations for that).

This was before my horrendous “stabby pain” (which I am cautiously and relucantly putting down to possible pancreatitis or gall bladder issues secondary to the Undiagnosed Inflammatory Issue, as the pain profile matches exactly, and also this is why I am not drinking alcohol of any kind for a while because I am just too scared of that happening again).

Today is Monday. On Saturday night, I was out at a show with a friend (Matilda. It was awesome). I was in quite serious pain – not hospital-level pain, and not “stabby pain” but serious pain – throughout the entire evening. I took some Panadeine Forte and it took the edge off it a wee bit, but the burning cramping agony was there, in the background, until I went to sleep that night.

Saturday was day nine of the Budesonide regime, and I was starting to reluctantly conclude that it wasn’t working. My mood was starting to plummet. I’d had a pretty awful day on Friday as it was, and this was making me feel a bit hopeless. I was struggling to maintain any kind of psychological equilibrium.

Sunday (yesterday) was a reasonably good pain day from a gut perspective. I had a lot of joint pain and inflammation and fatigue, so it was hard to really assess what else was going on. There was stomach pain, the kind of pain I’ve come to think of as “normal” rather than the increased levels of the day before.

And I’ve taken three pages and over 1100 words for a recap. Why are we re-capping, Kate?

We’re re-capping because I woke up this morning with no pain at all.

Alright, that’s a slight exaggeration. My ankle feels a bit sore, my lower back is still strained from an injury that took place about a week ago, and my left hip is wonky, but I have no belly pain.

None.

Zip.

Nada.

I noticed this when I first got out of bed.

I then ate actual food. No nausea. No pain.

I drove into the city with Husband in the car and marvelled, occasionally changing position, hunching, straightening, shimmying (look, if you don’t dance in the car, what are you doing with your life?), taken deep breaths and holding them, exhaling sharply, basically doing everything I could to compress my abdominal region to see if there was pain.

Nothing. Perhaps some very faint, mild tenderness on the left, under my ribcage.

It could all go to shit (pun intended). I could be wrong. This could well be false optimism. I am trying not to get excited.

But… at day eleven, of a drug regime that takes 10-14 days to take effect, I have a very sudden cessation of gut pain.

I don’t know if this is diagnostic of anything other than “You had inflammation and now we gave you steroids and there is no inflammation.” I don’t know if this means we can say what caused the inflammation – whether it’s Crohn’s located more deeply in my ileum than the gastroscopy could examine (apparently he managed to look at a good 80cms of intestine, but with 4.2m of ileum, that leaves a lot of mystery), or whether it’s some other cause.

All I know is that I am not in pain and it makes me staggeringly happy.

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