This Keto Life: It’s nice to be validated

When you tell people you’re eating keto, you get some weird responses. Sometimes those responses are perfectly normal, like “what the hell is keto?” and sometimes there’s a lot of “hmmm, and you say you eat a lot of fat…?” and a lot of reserved judgement (which is fine; at least it’s being reserved) and people privately considering that they’re going to have to visit you in hospital when you have a heart attack and how on earth are they going to resist saying “I told you so, you pseudo-scientific noob.”

That’s okay. I have some of those thoughts about other people’s decisions, and most people handle this in a pretty mature way with the understanding that what goes in my stomach is my business, and what goes in their stomach is their business.

However, at the moment, I am wallowing in a giant pile of smug. The disclaimer is that this is not “smug” meaning “I am doing a sensible thing and you are all idiots who are not doing that thing” – different things work for different people (and there’s hopefully a good explanation for why carbs make me feel sick, and I’m pretty damn aware that most people don’t have have that experience). This smug is more “I am doing a sensible thing for me and it is working stupendously well.”

I just had a checkup with my doctor, and we had a gander at my most recent lipid panel. My total cholesterol is, unsurprisingly, what would be considered “high” by most standards. Not dangerously high, but high. This would be a concern if the scientific thinking on cholesterol hadn’t undergone a massive shift over the last decade or so, where even LDL vs HDL is a vast oversimplification (not even all LDL is actually problematic; just small pieces of LDL).

My ratios, however, are amazing. My LDL/HDL ratio is very low. My triglyceride/HDL ratio is staggeringly low. And my GP said that my HDL was some of the best she had ever seen. And my raw triglyceride measurement is also very low.

I said that was a relief, because even though I’d done enough research and trawling of the primary literature, when you go against popular medical advice, there is always a kernel of doubt (you sometimes feel like you’re being treated as an anti-vaxxer when you feed yourself eggs and hollandaise as a perfectly sensible lunch).

“Well, if you really want to double check, we’ll do a cardiovascular risk assessment.” So she took my blood pressure (96/66 – BAM!), and ran the numbers, and it all came back in a big fat green zero. Some of that is because I’m a pre-menopausal, 34 year old woman – my risk is pretty damn low as it is – but a lot of it is these improved ratios. One day I might sum up my discoveries about cholesterol and how it seems that how it actually works is significantly different to what was thought thirty years ago (and salt), and that will involve a lot of reading and referencing and an actual kind of science journalism that I haven’t really attempted on this blog before.

In summary: my GP, who is marvellous, but not particularly radical, is quite happy with me eating keto. She’s happy with my numbers; and since I have a great deal of trust in her, I’m happy with my numbers.

Now, if this had panned out another way – if it looked like my situation was getting worse while on keto, and if this doctor that I trust was concerned – I would have felt extremely conflicted. I don’t want to go back on a standard diet, or try a low fat/high carb diet. Not only does it make me feel sick (and break out in acne, and get more abscesses, etc.), but my palate has gotten quite used to regular doses of flavoursome fats, and I think it would be difficult to manage. I also still have my fun sensory processing issues which make it impossible for me to eat a lot of raw veggies (ie, vegetables that haven’t been prepared in fats, which these days is how I consume them).

I suppose I would have tried to find a way to make it work, but it would have done a number on me.

It turns out that keto really is my path to health. And honestly, although I mostly trust my research, I’m also aware that I’m not a biomed-head, I don’t have that background in human health, and it’s a load off my mind to have it all confirmed by a medical practitioner who knows what my numbers mean.

Now, if I could just stop eating muffins when I’m on holiday, I’d be set.

 

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…

Diagnosis Roulette: Overviews and Epiphanies

2016 has gotten off to a rather rocky start for the denizens of the Mountain Fortress. Jabba, my thirteen year old cat, is quite sick (hyperthyroidism and other issues and difficulty medicating him), and there will be a post on that; but it turns out I’m not in great shape either.

Except I am. And here’s where it gets confusing.

My mental image of myself is of someone who is very active. I run 2-3 times a week, various distances (my current best distance is 7.5km without stopping). I lift weights 2-3 times a week, and while my mediocre bench press weight will not be striking competitive terror into the heart of the average powerlifter, my maximum weight is – very slowly – increasing. SCUBA diving is something I do on a professional level, and I’m fit and strong enough that I can do multiple Melbourne shore dives in a day, with long walks, in full dive kit, not only well, but comfortably. I do get fatigue, but it doesn’t really hit me until I get home (adrenaline, perhaps? Diving is fun and exciting). Until that point, I have enough fuel in my metaphorical tank (not to be confused with air in my literal tank) to help anyone who needs it.

Even when I injure myself – which, being hypermobile , I tend to do far more often than most people – and am forced to halt my usual exercise regime, I tend to compensate by going on long walks in the forest (presuming I am capable and it’s not an ankle injury). Lately, these have been clearing 10km distances and steep hills. I’m fortunate to live in a place full of lyrebirds and wallabies, so these walks are both restful and fascinating.

I even did the Tongariro crossing in New Zealand last week with a good friend of mine – 20+kms and some very steep parts.

So. All this is true. I’m well enough, for the most part, to do all these things. I am even at the point where – I flatter myself – I look “fit” (insofar as society has a somewhat flawed image of what a fit person looks like), kind of. I am far more svelte than I once was, and you can even see my arm and shoulder muscles without me bothering to flex.

I think of myself as fit, active and relatively strong. I see physical challenges as things to be met, for fun, and many of them are things I need to work up to slowly, but where once upon a time I would have dragged my aching body away and said “That is pain I do not need,” now I think, “Well, I can’t do that… yet… but let’s see how we go.”

But I also suffer from chronic illness. Multiple chronic illnesses.

I don’t think of myself as someone with chronic illness. I have quite a few friends with various chronic conditions, and I compare myself to them, and tell myself that I’m just whinging. Having a sook. Things could be way worse.

They are… starting to pile up, though.

They’re each a bit complicated, and they tend to interact, and today we’re just dealing with physical illnesses. I’m just going to provide a brief overview of each, because I am, naturally, fascinated by my own medical condition, and it might explain things to people who wonder why I have apparently disappeared off the face of the earth, socially speaking.

Chronic Condition #1: Endometriosis

Diagnosed: 2012. And I didn’t really have the nasty burning stabbing pain before that – just painful periods.

Symptoms: menstrual pain, fatigue, nausea. Can also be symptoms associated with any affected organ – bowel, bladder, ovaries, etc., wherever lesions set up house.

Severity: mild. I tend to spend a couple of days couch-bound. The fatigue is really intense. I can work through it, but I get a bit of a grey haze. I don’t tend to get symptoms much between periods, as near as I can tell, but that’s hard to say because of the other issues.

Treated?: Yes, through laparoscopic surgery, but it seems to have come back (although it’s not certain, see “Note”). That happens in about 20% of cases as near as I’m aware.

Management: contraceptive pill and heavy-arse painkillers when needed.

Note: what I am experiencing now may be a recurrence of endometriosis, or it may not. It’s hard to tell whether it’s just that or more generic dysmenorrhea. The only way to know for sure would be to get another laparoscopy.

Chronic Condition #2: Joint Hypermobility Syndrome

…or Ehlers Danlos Syndrome (Hypermobility Type).

Diagnosed: informally, by various physiotherapists and one podiatrist, about 2009. All quite fascinated by the way my feet move. It’s fun to watch their jaws drop, but it’s also a bit of a bummer. No-one wants to surprise any sort of medical professional…

Symptoms: defective collagen leading to unstable joints. Excessive flexibility around joints associated with ligaments and tendons, not muscle flexibility. Poor motor habits, reduced proprioceptive feedback, chronic pain in joints, dislocations (I don’t get these, except for my kneecaps, and that hasn’t happened since I started management), subluxations (like super miniature dislocations), joint inflammation, etc. etc. Frequent soft tissue injuries – sprained ankles, shoulders, etc. Poor physical coordination. There’s a bunch of other stuff but it gets complex.

Severity: moderate. That’s not a formal assessment, as I’ve never taken myself to a rheumatologist for a connective tissue biopsy (which is a thing you can do). I’m basing this on the fact that many people have hypermobility without the pain and coordination and various other issues, which I’m calling mild, and others can end up constantly dislocating and being unable to walk significant distances due to pain and floppy joints, which I’m calling severe. I’m able to exercise and work out and walk long distances – I just have to do a buttload of prep work to get away with it, and if I don’t work out for a reasonable period, I start to hurt (ie, muscles go a bit lax, things start flopping around more when I move, equals inflammation).

Treated: …sort of. It’s genetic, so obviously there’s no cure, but there’s management.

Management: see above. A buttload of physiotherapy work (up to an hour daily if I do everything), clinical pilates (in theory, weekly, but I’ve been sick and haven’t gone for a while), strengthening work to build muscle (I lift weights. Not big weights. YET). Also orthotics, and a check up every six months with my podiatrist to make sure everything is going well with my feet (which tend to bear the brunt of everything when it all goes wrong). I cannot be inactive for too long, or it really goes pear-shaped. I also need to avoid large amounts of progesterone (ahahaha, more on that another time), because that exacerbates the effect. This is why I tend to drop things and walk into things even more when I have my period. I basically undertake all physical activities with my hypermobility in mind – the things that other people do instinctively (balance, activation of stabilising and supporting muscles), I have to do consciously, and it is genuinely exhausting, so there are some fatigue issues. My balancing reflexes are poor – they always kick in a little too late – hence the tendency towards sprained ankles and falling on my arse. I even choose my dive fins with an eye to reduced finning effort, because the more movement in my ankle, the more likely it will start clicking and getting inflamed.

In a three week period earlier this year, I had three connective tissue injuries. Shoulder. Hip. Lower back. I think the owner of my physiotherapy clinic can now buy an additional yacht. There’s a reason it takes me a long time to increase strength and fitness – I keep having to take breaks from workouts. And, funnily enough, most of my injuries happen outside of my workouts (I am super careful). Except the hip. That’s usually related to running.

Chronic Condition #3: WHAT IS THIS I DON’T EVEN

Diagnosed: hopefully, 2016? But when we thought it was something else, 1996.

Symptoms (previous diagnosis: hidradenitis suppurativa): recurrent abscess formation, mostly in embarrassing places. And I mean recurrent. Severe pain. Scarring from multiple surgeries (easily double digits). Fatigue (try having an infection site the size of a golf ball with poor blood supply, you’ll get pretty tired yourself). Not that it’s really worth mentioning, but embarrassment. I’ve lost count of the number of times I’ve had to haul arse to a new GP or to the Emergency Department and just drop my pants. Honestly, I’ve become very blasé about people looking at my backside.

Symptoms (possible new diagnosis: Crohn’s Disease ?): All of the above, plus the mysterious agonising “I am being stabbed, no, actually fucking stabbed” abdominal pain I get a few times a year, which would be partial intestinal obstruction (if this diagnosis is correct). Other digestive issues (IBS sort of symptoms. Also a correlation with FODMAP issues, which I also have). Fatigue. Joint pain and inflammation (uh oh!).

Severity: No idea. If it was the old thing – which it’s not – I’d be a mild case. If it’s the new thing, we don’t actually know until I get an examination. It’s one of those things where the external symptoms don’t match what’s going on internally.

Treated: Sort of? Multiple surgeries. Potential new diagnosis might lead to a buttload of medications, depending on what they find. More on this a bit below. But again, neither diagnosis is curable.

Management: A buttload of medications, see above.

Hence my confusion

So, the last surgical consult I had turned out to be a woman who had previously done a dermatological residency. She was adamant- in no uncertain terms- that I did not have hidradenitis suppurativa. Since it’s a fairly obscure condition, most doctors who have suggested it have looked puzzled and have been half-hearted about the diagnosis, so this is the first I have heard definitively, in either direction, in the twenty years since I first developed an abscess I wouldn’t tell my mother about until I couldn’t walk (ah, teenage self consciousness. Sending kids to hospital since, well, forever).

The leading diagnosis appears to be Crohn’s Disease. I do not want Crohn’s Disease. It ranges in presentation, but it can be incredibly nasty (although I venture to suggest that if I had the worse form of it, I’d know long before I hit my mid-thirties). It is difficult to treat. In many cases, you end up with surgery to remove bits of your bowel. Now, I’m not overly fond of my bowel – it’s caused me problems – but it’s a useful portion of my anatomy and I’d like it to stay right where it is.

But on the other hand… Crohn’s Disease, or at least a mild-to-moderate form of it, explains a lot of my symptoms, including the abdominal pain that has never been successfully diagnosed (leading theories have run the gamut from gall stones to kidney stones to appendicitis – the pain is that bad – but it’s all come to naught). My innards get inflamed and painful and it’s horrendous, and I’m just glad it doesn’t happen more than a few times a year, because the only thing I can do is take high dose prescription codeine and sleep it off. That also suggests it’s a mild-to-moderate form – because if I had severe Crohn’s, it probably wouldn’t pass. I’d end up in surgery. I think.

It would be nice to have an answer, even if it’s a complicated, unpleasant answer. Knowledge is power, and I don’t mean in the evil, megalomaniacal laughing villain sort of power – I mean the power to make good decisions about your own life. I am almost pathological about trying to make rational decisions (gets messy, since life is messy, and often there’s no “right” answer).

So.

Next week, I’m going in for – sigh – a colonoscopy. This is how Crohn’s is diagnosed. Two days after that, I’m in for day surgery to correct a problem that might be caused by the Crohn’s. After that, it’s a crapshoot (oh, I’m such a wit). I don’t know what will happen.

The epiphany mentioned in the title is pretty brief, and can be summed up as follows:

I’m pretty active and healthy – true. I can do physically demanding tasks, if I am careful and sensible – true. But I am also, at the same time, sick. My body has a lot of crossed wires. I get very tired very easily at the moment, and I need to plan out how I spend my resources. This has been true for the past year.

The fact that I haven’t been able to concentrate through the brain fog enough to write any papers for the last year? The fact that I seem to repeatedly need to nap in the afternoon (I soldier through this at work and collapse when I get home)? The fact that I’m accomplishing the bare minimum?

Is actually not my fault.

I’m not lazy. I’m not stupid. I’m not incompetent. I have to keep telling myself this.

I’m just very very tired, because I am sick – even though I don’t quite believe it myself, because I’m so active, so I end up sort of accusing myself of faking (it’s very odd) – and I am managing that the best that I can.

And this sort of self-compassion is an epiphany. I don’t usually cut myself a lot of slack, but I think I have to start learning to, because my body has a few things wrong with it that make life a little harder.

I will still do the things that are important to me. I will get it done.

It’s just going to take a little longer, and that is okay. It has to be okay.