In the Middle of the Night

Can't sleep. Too uncomfortable. I'm doing my best to sleep upright as I've found that is the #1 thing that helps, but it's easier said then done. I bought a special wedge and it sucks. I've been trying different combinations of pillows and blankets and that sucks too.

I'm now on the couch. The couch tends to work, but makes the hubby sad. He misses me. I miss him and the dog--who snuggles so sweetly I can't hate her for being a ninja psycho who once broke my elbow.

I finally had a GI appointment with someone who did their job. They still breezed into the exam room convinced I had nothingburger IBS (I'm guessing with as often as IBS comes up for me that's all GIs ever say to patients, that diagnosis just seems to be a very popular dumping ground) but I wasn't eating still and had lost about 15 pounds so they couldn't write me off completely.

I had an MRCP which was interesting. The secretin reproduced all my symptoms buuuut I was told the pancreas looked fine.

HOWEVER, there is something going on with my liver. Which we kind of knew since the ER said I had a lesion on the liver.

Try lesions.

That *zebra alert* also happen to be rare. So they say.

I also have fatty liver. Here's that math: PCOS + 15 years high dose prednisone use = fatty liver starting around age ~29 in my case. (I didn't even party! I'm having all the downsides of booze without drinking any! And all the real alcoholics I know are fiiiiiine. Fuckers.)

Clearly there are happenings in my liver.

I'm now trying to get an appointment with a liver specialist. Even with a referral from the one GI, it's been the usual bureaucratic clusterfuck. I'll get the ombudsman involved if I need to.

Because I'm struggling to eat and sleep. The status quo is not sustainable. Not that it looks like GI has much to offer. I've been doing a lot of research on different GI things as a close relative has recently had a gas-tric cancer scare. I know more than I ever wanted to now.

I've come away from my deep dive into the medical science of guts with the impression that GI doesn't know much and can't do much either. The survival rates for gas-tric cancer are absymal...to the point where I thought to myself, as I read, 'chemo doesn't work for this at all' and whaddaya know? I then found a just published article where an oncologist said exactly that. Liver cancer survival rates aren't that great either.

Basically, if you can't avoid cancer, you want the thyroid one. That cancer has good survival stats. Keep your gut healthy. GI cancers are still in the Dark Ages.

And everything is IBS in the GI world. GI is like the Oprah of Guts. You have IBS! And you and you and you and you! Do you have a vagina? YOU HAVE IBS!

But...

I said, YOU HAVE IBS!

But...

HERE ARE SOME ANTI DEPRESSANTS THAT WILL KNOCK YOU OUT LIKE ROOFIES!

But...

GOODBYE!

The GI specialty has a whole alphabet of IBS 'types'. C, D, M...I forget the others. I think they proposed a new one recently. I keep saying they need to add an IBS-G for the gallbladder removal patients, because get this...when the loss of gallbladder screws up your innards and makes you dump bile, they've apparently decided that's IBS too. Even though it doesn't meet the diagnostic criteria for IBS (from what I can tell). There are dozens of IBS-G patients milling around in IBS FB groups going 'WTF, whhhhy am I here?'

If you spend any time with the patients, it's really obvious that there's more going on. My impression is that IBS is where they put you when they don't know what to do. At some point science is going to figure out some new diagnoses and realize they've given some patients a raw deal. At least that's how I see it.

I'm kind of fascinated by how social media has brought more and more patients together and almost nothing has changed in medicine. I'm not the only one who sees IBS this way. Other patients see it too and...nothing has changed. Critical mass doesn't matter in medicine. Not when it comes from patients.

Anyway, I don't expect much from GI, but I'm guessing my liver will need to be monitored. Maybe a biopsy or EUS. Depending on the type of lesion, this may have a hormonal component that will intersect with OB/GYN as well...not that anyone will know what to do because this is supposedly soooo rare. We'll see.

My goals right now are 1. Get that liver specialist appt. 2. Get into a new primary and get blood work. 3. Do a daily 20-24 hour broth fast as I do better when I don't eat and then eat one simple meal (which might just be yogurt at the rate things are going). I'm at that tricky stage where I'm better enough to be hungry, but not far enough along to actually eat anything. That is a special kind of misery, I tell ya.

If anyone remembers, the last time it was almost a year of this BS (literal and figurative lol) and then on and off again ever since my gallbladder surgery. I'm guessing it was my liver this whole time.

That's another thing I've noticed about GI stuff, patients have problems before there are clinical, objective signs of a problem. Chronic pancreatitis patients are parked on IBS for years until all the clinical criteria finally lines up and/or a doctor finally orders the tests.

I have the same BS from 5 years ago, but this time with liver lesions (and normal blood work, although I'm not sure all the liver things were checked, hence #2 above). Where were these lesions the last time? Who knows? Not the GIs.