A gut-wrenching diagnosis: more advice from my healing journey

Our book club finished Kasia Urbaniak’s book “Unbound: A Woman’s Guide to Power” this week. One of the many exercises we did through this book was “Things Unsaid“.

When it comes to my diagnosis twenty years ago with IBS – Irritable Bowel Syndrome – and ulcerative colitis, I have many things unsaid to the gastrointestinal specialist.

Things I never said because “I’m a good girl”.

But, as Kasia rightly points out, within every complaint we have, lies a much deeper “ask”. Something that we feel we could never request.

She has you do an exercise that says, “I never told ____ about ___.”

Unbound, a woman's guide to power, Kasia Urbaniak, things unsaid

Today, I want to share with you what I’ve never said to doctors over the past twenty years, as well as what I wish I had asked for!

I wish you would have told me…

Ulcerative colitis is an auto-immune disease

I realise that back in 2001, auto-immune diseases were probably not as prevalent as they are now. But I really wish my doctor had taken the time to explain to me in detail what was happening in my colon.

I never told you how angry I was when I found out that it wasn’t just “inflammatory bowel disease”, but rather that my immune system was attacking the lining of my colon.

I was furious ten years later when I found out I had Celiac Disease, which had been completely overlooked because you only did a colonoscopy and never did an endoscopy. Especially since we never had any conversation about Ulcerative Colitis being an auto-immune disease.

You can imagine my fury finding Celiac Disease a couple of years after an endocrinologist diagnosed me with Insulin Resistance and put me on a whole grains diet! Those were not good years, and I spent them beating myself up for “not handling stress” and not living a healthy enough lifestyle.

If you had listened…

I wish you would have listened when I went back for a check-up and told you that the Sulfasalazine (Azulfidine) didn’t seem to make any difference at all. You might have then realised that there was something more happening in my gut than just the ulcerative colitis.

I wish you would have told me…

IBS is not a catch-all for “we don’t know what is wrong with your gut”!

stress, brain-gut dysregulation, altered motility of intestine, altered gastrointestinal microbiome, transient infection, altered endocrine metabolism, serotonin, neuronal plasticity, altered motility of intestine, altered mucosal immune function, food hypersensitivity, bile acid malabsorption, increased mucosal permeability, ploymorphisms, irritable bowel syndrome, complications, this is my gut with ibs

Maybe, in 2001, it was. I now know, but not because of doctors, that Irritable Bowel Syndrome is a “chronic functional gastrointestinal disorder” (mBraining, Grant Soosalu & Marvin Oka). More importantly, it’s caused by changes in the nerves (the second brain and vagus nerve) and muscles that control the sensation and motility of the bowel.

Looking back, perhaps I didn’t even have IBS when I was diagnosed with it – because it literally happened “overnight” after food poisoning. I never told you how I blamed you for failing to recognise Celiac Disease. Could my gut have avoided learning irritability? Unfortunately, I’ll never know. But I never told you my frustration.

With what I know now about how the enteric brain learns and becomes over-sensitized by traumatic experiences, I’ve been able to reverse a lot of what has been happening with my gut and the IBS. Still, I wish you had told me that it’s possible to retrain the gut and how it responds to life.

When you told me “you need to learn to handle stress”…

I wish you would have been a LOT more specific, but I realise that probably wasn’t in your training.

You might have actually warned me…

A diagnosis of IBS is to the gut what a heart attack is in cardiology. This is your wake-up call that you need to make radical lifestyle changes to build health and wellbeing.

I’m pretty sure that doctors don’t even take IBS that seriously. And I never told you how I wish you would have sat me down and sternly told thirty-year-old me:

  • Give up coffee, because it affects your nervous system, your ability to sleep deeply and restoratively, and it is affecting your gut
  • Stop drinking, at least until your gut heals
  • Eat real food, not food products
  • Stop burning the candle at both ends: you can’t work hard and play hard any more.

Things unsaid…

More than anything, I wish you had told me about the loss I would suffer. You might have warned me about the process of grief I would go through for the life I had:

  • going out to dinner with friends without worrying about the menu
  • being able to travel anywhere and not plan my days
  • clear-headedness and being able to work till the early hours of the morning.

I wish we talked about depression and its relationship to gut health! You might have started by letting me know that 80-90% of the body’s serotonin is produced in the gut and that having IBS and ulcerative colitis could impact my serotonin production. You could have told me about L-Tryptophan, GABA and other supplements.

I never told you how angry it makes me: I thought I was losing my mind when I couldn’t hold it together because my gut was falling apart. You never explained the gut-brain axis and gut health’s role on my emotional and mental well-being.

I never told you how frustrated I was when I discovered that psychologists have documented the effects of uncertainty on sufferers of chronic illness, like Crohn’s Disease, Ulcerative Colitis and IBS.

I wish you would have told me to love myself and my body despite not understanding cause-and-effect and feeling that everything could veer out of control at the drop of a hat. You could have warned me that flare-ups would create instability for me, and I might never identify what caused my body to respond with inflammation. It would have been helpful to know that I could do everything right, by the book and letter, and still have no control over the flare-ups.

I should have paid more attention…

Ask any med student: “What are you studying?”.
“I’m studying medicine, biology, physiology, chemistry, pharmacology.”
If they’re lucky, they might get twenty-five to thirty hours of nutrition studies.

But I’m pretty sure that none of them has a class called “health”, “wellness” or “wellbeing”. There is no emphasis on wholeness, but rather their focus is on sickness and injury. That’s all fine and well, except that they don’t know the way back to full health any better than we do!

It’s my fault for not paying attention or listening initially.

Like many others, I imagined that the remedy came in a bottle, not in a radical change of my lifestyle, healing trauma, and working with all my body, emotions and mind.

Discovering & diagnosing Celiac Disease and Helicobacter Pylori

helicobacter pylori, h pylori, celiac disease, parasites,

I never told you that by February 2012, I was desperate. I felt like I was unravelling and was ready to throw in the towel on everything. My best friend and her boyfriend decided to go to Peru, to Cusco and Machu Pichu. They invited me to join me, specifically asking me to join them on ayahuasca journeying, “to hold their hands”. I was to be the solid rock while “tripping”.

Note: I don’t believe you should look to ayahuasca for medical diagnosis, but it plays a role in my personal journey.

My friends bailed on the ayahuasca when they found out that house rules were “no electronics” for the three days and “silence”. We were literally going on a silent retreat for three days. They bailed. I stayed.

People might have amazing ayahuasca journeys. Mine was much more mundane. But I only had one question “what the fuck is wrong with me?”.

I literally saw myself with my small intestines hanging out in front of me, and I was slowly working my way through all of my small intestines, “getting all the shit out”. As if I had a miniature ringer in my hand, squeezing all the contents out of my bowels as I worked my way along.

In the craziness of the vision, I then saw myself being “attacked” by millions of “demons”. Little purple “things” with three or four “tails”. Exactly as they appear in the image above. I don’t know that H Pylori are actually purple. But they were in my vision. And they were on the lab results I got back from the gastro specialist weeks later! So – you get a picture of purple H Pylori.

When I got back from Peru, I had an appointment with my gynaecologist, with who I had a high level of trust. So, I told him about ayahuasca, my guts, and my “demons”. He turned around and immediately asked for a test for Celiac Disease and parasites.

And that’s how I got diagnosed with Celiac.

I never told you how I have lived with shame for turning to shamanism to find out what was really wrong with me, rather than trusting medicine and doctors.

Worse yet, I never told you how my trust in the medical profession was eroded by this experience because I had to find out for myself and then find “a professional” to advocate for me.

Unfortunately, that wasn’t the end of the journey.

It took another couple of years of being gluten-free, trying various elimination diets, and getting into functional medicine to discover that to top it all off, I had SIBO.

What would I have done differently?

If I could do it all again, I would have been the squeaky wheel that drove my first gastro specialist mad with all my questions, insisting that he keep running tests and truly get to the bottom of what was wrong.

I would have stood up and advocated for myself and my health: demanding that I be taken seriously, rather than being “a good girl”. The cost of being the good girl who simply accepted my doctors’ authority was much too high!

Who the hell do you think you are, I'm that bitch

I would have dared to ask more questions and to demand more answers. I would have gone back time and again, rather than scurrying off and disappearing to handle it alone. I would have knocked on more doors and gotten more doctors involved. And I would probably have stepped on some toes.

But maybe I would have gotten more answers and suffered a lot less.


Books I wish I had read earlier in my journey (in no particular order):

I’ve tried to organise these by “topic” for you, but they are in no particular order of importance.

Where you might start (or not)

These two books radically changed how I looked at my body and health. But they are NOT easy reading. They are not self-help books. But once you understand the relationship between health, gut and your autonomic nervous system, you will probably want to get to reading these.

Deb Dana, The Polyvagal Theory in Therapy, engaging the rhythm of regulation, Stephen W. Porges
The Polyvagal Theory in Therapy
The Second Brain, Michael D. Gershon
The Second Brain
Three Brains, how the heart, brain and gut influence mental health and identity, Karen Jensen
Three Brains

Gut health

Ultimate Immunity, The lifetsyle plan to fend off flu, cool down inflammation, reverse chronic conditions, and lose weight naturally, Elson Haas, Sondra Barrett
Ultimate Immunity
Clean, the revolutionary program to restore the body's natural ability to heal itself, Alejandro Junger, Amely Greeven
Clean
The Good Gut, taking control of your weight, your mood, and your long term health, Justin Sonnenburg, Erica Sonnenburg
The Good Gut
Brain Maker, The power of gut microbes to heal and protect your brain, for life, David Perlmutter, Kristin Loberg
Brain Maker
Gut
Gut Feelings

Mind over Matter

The Biology of Belief, Bruce H. Lipton, Unleashing the power of consciousness, matter and miracles
The Biology of Belief
The Creation of Health
Why people don't heal and how they can, Caroline Myss
Why people don’t heal and how they can

The Mind-Body Connection

How the body knows its mind, sian bellock, the surprising power of the physical environment to influence how you think and feel
How the Body Knows its Mind
the Body Keeps the Score, Brain, Mind, and body in the healing of trauma, Bessel van der Kolk
The Body Keeps the Score
Healing and the Mind

Neuroplasticity & learning new ways of being

Brain Wash, David Perlmutter
Brain Wash
change your Brain, Change your Life
Feel Better Fast and Make it Last
The Brain that Changes Itself
The MInd and the Brain

More on the Vagus Nerve

Polyvagal exercises for safety and connection, deb dana
Polyvagal Exercises for Safety & Connection
Vagus Nerve, the step by step guide to understand the power of the vagus nerve, self-help exercises for chronic illness, ptsd, inflammation, anxiety, depression, finley smith
Vagus Nerve
Activate your Vagus Nerve

This is a peek at my bookshelves and those that stand out to me this week.

But for those of you who might suffer from chronic illness of any kind – whether it’s gut-related or not – I would say this:

You are the expert in living in your body. Doctors only know about the pain, discomfort, and things you tell them about. Keep a diary and use it to ask your questions. Try the elimination diets, and ask for more information. Don’t leave things unsaid.

Well-being is an inside job – it starts deep within you.


5 comments

  1. This reading list is a masters in gut health and wellbeing. Thank you for sharing your hard-fought wisdom. I resonate with all the absent conversations you describe.

  2. I can feel your pain and anger over your situation, I’ve been through a similar rollercoaster with my health diagnosis since 2007. They still can’t explain why all it is happening, my guess is an autonomic disorder. Have further tests coming in the new few months

    • All I can say is don’t give up until you feel in your body that you know what’s going on. I still get flare-ups, but I don’t feel any more need to know “what’s wrong?”…. it finally feels like I know all the different areas of possible inflammation and what care to take of myself.
      I wish I had stood up for myself earlier!
      So – keep asking until you are satisfied!

  3. Everybody should go through a hero’s journey. Yours was finding out what was wrong with you, and getting solutions that worked. I still remember when you told me about Peru. The universe will do strange things at times to get us on the right path. In the end Beth, you are one of my heroes because you taught me to speak up when things are not working right. Now I see how you learned the lesson.

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