"The goal is to become the unique, awesome, never to be repeated human being that we were called to be." -Patricia Deegan

Sunday, February 10, 2019

IBS: Iron Burn Syndrome

No, I'm not mistaken. I know it's supposed to be Irritable Bowel Syndrome. But I've just re-diagnosed myself.

In mid-January 2019 (last month), I was misdiagnosed with "IBS." It turned out - and I discovered this through my own "Dr Google" research - that I had iron-pill (Ferrograd-C) induced gut lining damage. I went from being a gut-mess to being 100% in a matter of a few days. It sounds like some exaggerated story, where I will now launch into my sales pitch on the magic crystals that cured me...which you, too, could have for just $29.99! Nope, this is for-real. And there's nothing for sale.

I share this story because it might help others. But don't read it if you don't want to read words like poo and gas/wind! 

A different kind of wind. 50kph on Prairie Mountain, Alberta, Jan 2019
At the end of September 2018, I developed bloating (like 4 months pregnant), lots of wind/gas which got worse as each day progressed, often resulting in my sleeping on the sofa. Accompanying symptoms: narrow stools and going to the toilet 4-5x/day for a "number 2". Never constipation. No blood ever seen. No reflux type symptoms until early January, when I oddly started sometimes getting a few hiccups or burps for a few minutes after drinking water when running.

I've chronically had slightly low white cell counts, which my sports doc said fits with my athletic level. Though the GP kept hinting "bowel cancer." Recently, on routine bloodwork, I had high ferritin, too, which is not just an iron marker, but an inflammation marker.

I had a poo test in November to see if I had giardia or crypto or something - negative.
Pulk-pulling hike February - no FODMAP diet, hooray! 

On December 1st, I had a crazy pain attack in my belly that put me on the floor for an hour. I thought maybe I was just really hungry when I ate and ate too fast, swallowing air. I had the sweats, it was so painful.

I tried no spicy food plus the very complicated and restrictive low FODMAP diet at the beginning of December for two weeks, logging all my food. There was no change.

In late December, the GP re-did the poo test, as sometimes a bug can get missed. All good.

The GP then sent me for an ovary ultrasound (I was sure it wasn't a cyst or similar - the symptoms didn't line up). Ovaries were good. Once they found them underneath the wall of poo in the way of the camera. But they found gallstones. Now, I learned that lots of people have gallstones and never even know. But then I realised what the attack was on Dec 1st! I understand that you can get stones from red blood cell damage, and ultrarunners damage their red blood cells.... so it seems likely to me that it's this type. But I still have to meet with a gallbladder specialist in late March. Anyway, gallstones wouldn't account for my wind and poo regime.

In mid-January, the next step was to go for a colonoscopy and gastroscopy. Though I was dreading the liquid laxative stuff I had to drink (3 times!) in preparation, that wasn't so bad. The bad part was the anaesthetist telling me, in my vulnerable, naked-except-for-the-gown, half-delirious fasted state, that it would all be done under "twilight" anaesthetic. I'd be "awake" for the whole thing, she said. Well, that brought out a sudden (but quiet!) swear word and a few tears. Shove a pipe and camera down my throat whilst I'm awake?!? F*cking hell. She promised me she'd increase the sleepy-meds if need be. The last words I heard in the theatre were, "Have a good sleep, B." Right on. Wake me up for lunch.
Wide-eyed look of Wasootch Peak I'm climbing. Better than wide-eyed fear of a gastroscopy while awake!
No, it wasn't bowel cancer. One tiny polyp was removed (I understand it's the polyps that turn cancerous sometimes - so they just removed it so it couldn't get a chance to go rogue). That little polyp wouldn't have caused my symptoms, either.

The findings I got before leaving the hospital, which felt hurried, especially given I was just coming out of my morning snooze:

1. "mild reflux oesophagitis" - Inflammation of my oesophagus. The "reflux" part seemed particularly strange, as I didn't get reflux/heartburn at all. The doc at the hospital gave me a script for some meds to take for a month for this "reflux".

2. "mild duodenitis" - that's inflammation of my duodenum (my upper small intestine was also inflamed).

They tested and excluded Coeliac disease and H pylori bacteria.

Snowmen never have these problems. 
The result was the doc thinking I had "IBS" and that I should try a low FODMAP diet (I told him I'd already done that though). In addition to the script he gave me for my non-existent reflux, he told me to see a dietitian for FODMAP advice and take something called Mintec before meals and when I get abdominal pain.

However, I had to keep telling people, I don't (usually) get abdominal pain. I just looked 4 months pregnant, got increasing wind all day, poo'd a lot (but no pain), and my intestines sometimes 'churned' with the wind thing. I could feel it when laying in bed. Like I had snakes in my belly. But no pain, typically (except for that gallbladder night).

Here's where my own detective work came in:

I had to go off my 2x daily Ferrograd-C iron pills for a week before the hospital procedures. I noticed that "ironically" my symptoms seemed to be decreasing that week (but didn't connect it to the pills yet). After the procedures, I went back on the pills. Within two days, the symptoms were getting worse again.

Sudden aha moment - the ONLY thing that had changed had been the iron pills.

Bring in Dr Google. It turns out that not only had I developed two "itis" conditions in my gut from my 7 years of daily Ferrograd-C (iron is almost 'toxic' to the mucous lining of the gut I found out), but I had been taking my iron in a very poor way....right before laying down to sleep and with the tiniest of sips of water. I could often feel the pills in my throat.

Cue face-palm slap moment. If others can learn from this story to never take any pills before lying down and always with plenty of water, typing out this long story of poo and wind was worth it :) And really, really try to think outside the box when it comes to gut issues. I'd been on iron pills for 7 years without problems, after all.

I've had a happy belly for three weeks now, without iron pills. I never took the reflux meds. I've got to see my sports doc to discuss long-term iron options, but things are good.
Cue happy ending. No crystals for sale.
Endnote: Please don't associate my low iron with my veganism - I've had low iron since years before that part of my health journey began - and back then I even tried upping my red meat intake, cooking in cast iron, adding vitamin-c foods to my iron-rich meals....all to no avail.

1 comment:

  1. Well done Dr (or should I say detective), and good to hear you didn't waste time and create more issues by trying to treat non-existent reflux. Reminds me of something rolf said to me once about windows updates sometimes making things far worse than they were before...