Diagnosis Roulette: “Wow, that was unpleasant,” and “What next?”

In our previous exciting episode, we learned that Dr Kate is flailing around trying to work out what chronic condition #3 is. In terms of impact on her life, Dr Kate isn’t sure whether #1 (hypermobility – pain exercising, lack of coordination, pathological physical dorkiness) or #3 (multiple trips to the emergency department, crippling abdominal pain, surgery after surgery) is more severe.

#2 (endometriosis) is periodic and mild (edited to add: for me! My endometriosis is relatively mild. Painful and awful, but mild as it goes).

But – abandoning this attempt to talk about myself in the third person – I’d really like to know what #3 is. It’s been making my life socially awkward and physically painful for 20 years now, and if I’m going to be constantly getting strangers looking at my butt (medical professionals, I’ll have you know), I’d at least like to know why.

So I got a colonoscopy (note, you don’t have to stop reading if you’re squeamish – I’m not going to provide details of prep).

As a side note, every specialist I’ve spoken to on this front over the past few weeks has uttered the phrase, “…and you’ve never had a colonoscopy?” in tones of shock, closely followed by, “Who has been handling all this for you?” with an implied undertone of “Whoever your family doctor is, they’re a fucking hack and should be suffocated with adhesive dressings.”

(there’s probably something more scary to be suffocated with, but since I’m allergic to most adhesive dressings and I get a painful nasty rash, I feel that’s pretty bad.)

At which point I explain that I’ve gone a long time without a regular GP, due to moving house a lot. I’ve probably had two over the past ten years – one of whom I lost faith in (and yes, although I liked and respected him for a long time, he should have recommended me for a colonoscopy while I was on his watch. I had a ludicrous number of abscesses during that period), and the other of whom changed clinics (and did recommend me mildly for a colonoscopy, but I chickened out, and she never had a chance to nag me about it before she left). After about a year, I followed the previous GP to her new clinic. It’s half an hour away, but she’s awesome, and having one person in charge is clearly the way to go.

Anyway.

There are numerous horrified personal accounts of colonoscopy prep on the internet. If you’re a person who is about to undergo their own delightful experience and wants to know what to expect, I refer you to those. In terms of the elimination side of things – ahem, the “bowel cleanse” – it wasn’t too bad, but then again, I’ve done something mildly similar before on a smaller scale and knew what to expect. My study is right next to the bathroom. I played a lot of Mass Effect. The Pico-Salax didn’t taste vile and my nausea was mild. End story.

The part I will write about is that the combined factors “not eating for over 30 hours”, “having nothing in your gut” and “not drinking any liquid for six hours before the procedure” leads to feeling like a fucking zombie.

The thing is, I’ve fasted before. I was toying with 5:2 as a way to deal with some of my comfort food snacking impulses (it was very effective on that front), and giving my poor mysterious gut a bit of a rest a couple of days a week did make me feel better. So I didn’t actually expect the “not eating” aspect of things to get to me so intensely.

It turns out that when you combine “not eating” with “powerful laxatives” (and dehydration), you actually end up feeling fairly hideous. By the time I actually turned up to the clinic for the procedure, I was dopey, dizzy, uncoordinated, and suggestible (Husband was talking to me while I was filling out paperwork, and I kept writing down whatever the last word he said was, instead of, say “State” or “Title”. The receptionist eventually told him off). I tried to read in the waiting room, but only got through a few pages before I lost focus and just gave up and played Freecell on my phone.

Look, I was a teenager in the 90s. For mindless distraction, it’s either Freecell or Minesweeper, and Minesweeper can be quite stressful. WHICH SQUARE DO I PICK OH GOD… So, yes. Freecell.

I think if I had to do it again, it wouldn’t be so bad, because I would know what to expect. It turns out that fasting for a colonoscopy is much nastier than a light day-fast for 5:2, and it’s not just the duration. Forewarned is forearmed.

The actual procedure

I was unconscious! I remember nothing!

Well, that’s not entirely true. It’s sedation, rather than a general anaesthetic. The anaesthetist said that in terms of personal experience, the distinction is semantic (not his words), but the difference is that I’ve never woken up under a general, and I sort of woke up under sedation.

This is not a horror story, don’t worry. I just came to a bit, heard them talking (they were gossiping about colleagues I think. Not malicious. Don’t remember what was said. Just smugly thought to myself “I knew this was the sort of deep, intense scientific discussion that happens during routine procedures! I knew it!”), and mumbled.

“…hello?”

Gossip continued.

“…umm… I’m awake here…”

“Oh!” said the anaesthetist. “No worries.” And I dimly saw another syringe being attached to my cannula. The liquid went in, I went out.

Propafol, man. That’s the good stuff. I did get a few seconds of feeling quite high before I passed out. I do live for these medical silver linings

I wonder if this is the redhead gene acting up again. I know we’re more resistant to analgesics and local anaesthetics, but I’ve never heard that about sedation. Go figure.

Anyway, I woke up eventually, feeling pretty ordinary in the belly region (full of gas), and then they gave me coffee and biscuits. Which I ate. Because fuck keto, I’ve just had a goddamn colonoscopy.

Then I ate more biscuits. Because fuck temperance, I’ve just had a goddamn colonoscopy.

The coffee was Nescafe. I drank it black, with sugar. Because fuck standards, I need caffeine (this is actually surprising. Even when I’m desperate, I usually find Nescafe literally undrinkable. I can’t get it past my tastebuds. I can only assume that my body shut down said tastebuds in desperation during this temporary crisis).

Anyway I sat around for a bit, and was reminded I couldn’t drive, operate heavy machinery, or sign legal paperwork for the next 24 hours (or rather, I could, but it wouldn’t be a solid plan).

Eventually I picked up my report and Husband took me home.

The result

Being me, I read the report in the car.

Normal colonoscopy.

I have really mixed feelings about this. On the one hand, not having Crohn’s disease of the colon (and remember that phrasing, it’s important) is a pretty good thing. As I said previously, by all reports, Crohn’s disease sucks.

But having unexplained abdominal pain and recurrent abscesses for twenty years also sucks; and I’d started to make my peace with a Crohn’s diagnosis. A moderate presentation, based on my symptoms, seemed like a survivable diagnosis; and the possibility of medication that might mean I wouldn’t have to turn up to the emergency department for surgery on a regular basis was appealing. Especially if that medication would prevent the severe abdominal pain that sprinkles itself randomly throughout my life. Also, having unexplained symptoms suggests that something might get worse if it is untreated, and you can’t treat it if you don’t know what it is.

Anyone else who has been on the diagnosis rollercoaster will understand this feeling. You get attached to a potential diagnosis, and when it’s taken away, you feel adrift and confused and upset. “But if that’s not what’s wrong with me, what is?” you wonder, lost once again as you have been since before this whole process got going.

And there’s also this other issue: any diagnosis that isn’t cancer starts to sound pretty good. Cancers come in a dizzying array of varieties and an extraordinary raft of potential symptoms. Any time someone has weird, unexplained symptoms, it occurs to most of us that maybe it’s a tumour. Hence the long term appeal of the classic Schwarzenegger denial: “It’s not a tumour!”

The other issue is this:

A normal colonoscopy doesn’t actually mean I don’t have Crohn’s.

Crohn’s disease can affect any region of the alimentary canal, although admittedly Crohn’s of the mouth, oesophagus and stomach are pretty rare, and Crohn’s in these areas are usually also found elsewhere in the intestinal tract.

About 70% of Crohn’s patients experience some Crohn’s involvement in the colon, which would mostly be detectable by – naturally – a colonoscopy. 50% have what is called ileocolitis, which involves the colon and the ileum (small intestine). 20% have colitis only, affecting only the colon. I actually don’t have many of the symptoms of colitis.

This, of course, leaves a whopping 30% of cases that affect only the ileum. Approximately. That’s 30% of patients in which the disease can’t be detected by a colonoscopy. A gastroscopy – ahem, going in the less personal end – isn’t too useful either, since that stops at the stomach.

There are a number of other ways in which Crohn’s of the ileum can be diagnosed, but it’s a piecemeal affair. Generally, they look at other symptoms and issues, blood tests and the like, and in many cases it rests on the idea of inhibited absorption and deficiencies. Since I’m not anemic, I’m not sure how useful some of these tests would be.

My last panel did have elevated liver enzymes and B12. I stupidly put this down to another cause, since I’m (a) an idiot, (b) not a doctor and (c) in complete denial and wussed out of talking to my doctor about it (this wasn’t the awesome GP that I followed. I would absolutely have talked to her about it).

And I just found out that Crohn’s can cause elevated liver enzymes and disfunction in that area.

Crohn’s can also cause inflammation of the gall bladder and gallstones. While I’ve never been diagnosed with gallstones (an abdominal MRI failed to show any, but then maybe I passed them by that point?), I have had stabbing agonising pain in the gall bladder region. It’s one of my two “agonising gut pain” patterns (the other one is lower right stabby pain).

The other option is a capsule endoscopy. This is the one where you swallow a little device that takes footage of your small intestine and walk around with it for eight hours. This sounds super cool to me.

Basically, between the recurrent abscess/fistula problem (and points go to my last surgical consultant who said “perianal disease is a shitty thing to have”, because I don’t think she meant to make a joke, but it was hilarious anyway), the lower right abdominal pain, the upper right gallbladder-ish pain, and my crazy liver blood test result, I suspect my next “diagnosis roulette” entry will actually involve a capsule endoscopy.

Today, I’m going in for surgery to correct the fistulas that are resulting in recurrent abscesses. Hopefully this will work. Fistula surgery can, apparently, sometimes be a bit of a crapshoot (heh).

I got up early to have coffee and breakfast (a protein cookie and a bag of nuts, since I haven’t been to the supermarket in a while), and now I’m considering going back to bed until my admission time. It’s been hard to work on any projects at the moment, as I’m constantly distracted by this medical business.

Look forward to the next exciting episode…

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