25 years ago I was diagnosed with ulcerative colitis (UC), one of two illnesses that fall under the heading of Inflammatory Bowel Disease (IBD). Chronic illnesses that affect both men and women equally, impacting our entire bodies, well beyond the digestive system.
In my case, it is an illness that has remained active in various forms for every single one of those 25 years since my initial diagnosis. Impacting my entire digestive system, joints, eyes, skin and my overall immune function, while also playing it’s own role in disability and extensive periods of social isolation.
It is a battle that I have kept to myself for the most part, for obvious reasons … Until now!
A story that I have decided it is time to tell in a series of 3 separate blog posts, including this one.
What has prompted me to share this exceptionally private story in detail, in such a public way, is the appalling lack of medical support, information and open dialogue regarding IBD and chronic illness in general. Along with the fact that I am far from alone in my experience of medical inefficiency and negligence. —Across all forms of illness, injury and medical needs in general.
You see, my personal battle with IBD is a 25 year story of medical inefficiency that at times blatantly crosses the line into full blown medical negligence. A story involving FOUR horrific episodes of potentially life threatening Haemorrhagic Shock that have been consistently dismissed by the medical community, both at the time of each event and as noteworthy events in my medical history … It is a story that I would find hard to believe myself had I not lived this experience.
Besides my own experience, every now and then someone that Daniel and I know or meet reveal that they have been diagnosed with a gastrointestinal disease or digestive illness, just as I was 25 years ago. —And like me, they find themselves smashing their head against every brick wall the medical community throws in their way as they stumble around in the dark searching for answers. Clinging desperately to the hope that the next avenue they walk down will finally allow them to see a guiding light to at least remission, if not full recovery.
The simple fact is, even having fought long and hard against ulcerative colitis for the 25 years I have, along with bowel related health issues and digestive illnesses impacting several members, and multiple generations of my biological family — including my father having survived bowel cancer back in 2009 — the form of illness I have is still a subject that is not easy to talk about openly in any regard.
Sadly, medical professionals don’t make it any easier to talk about either.
Especially not gastroenterologists; of all fields of medicine!
Now there’s irony for ya!
The issue is all in the name, “Bowel Disease” — illnesses that just make the men and women who live with them run to the toilet alot and should be kept to themselves! … Right?
Well, no … Both of those easily made assumptions, are completely wrong!
Firstly, these are illnesses that actually need to be talked about a great deal more, rather than less, due to the growing number of men and women living with these life changing illnesses and the hereditary nature of bowel disease and digestive illness that I see all around me.
And look, I get it … It is simply is not acceptable to discuss bowel movements, diarrhoea, constipation, rectal pain, colonoscopies, issues of blood, discharge and even wind with anyone other than an inner circle of confidants (apparently not even gastroenterologists).
Much less is it acceptable, as a woman, to openly discuss hormonal and gynaecological factors causing exacerbation in IBD for women.
And as for the art of mastering hurricane capacity flatulence that doesn’t realise there is a time and place for a surprise party, in which surprise is supposed to come out of one’s mouth, not out of their… Well… You get the picture!
Or … Learning to belch discreetly to relieve some of the gas expanding one’s stomach in a way that makes them feel as if they’ve gone from conception to full term labour within an hour of eating.
These are the things a lady just is not supposed do; and certainly is not supposed speak about! —Especially when “fart” was a word never to be spoken in her childhood home, and belching was apparently that uncouth something done by blokes down the pub.
Simply put, no matter who you are, your age or how extroverted your personality is; discussions about the bowel generally involve plenty of laughter, screwed up noses and a good measure of alcohol to really let it all out. (Pun SO unashamedly intended!)
I do get it, it’s distasteful, vulgar, taboo and just plain gross! —It really is! —And completely worthy of all the humour thrown it’s way!
Which I can tell you, bowel humour becomes an everyday part of life with these diseases.
Because, if you don’t laugh at things like accidental bottom burps, spontaneous raucous belching that surprises even the belchee, and what I call “horsey farts” propelling you along as you trot down the hallway to the loo in fit of urgency while trying desperately to clench your butt cheeks together … Quite honestly, you’d go mad or spend all day feeling ashamed and crying with embarrassment.
Believe me, over the years I have cried alot from the shame and embarrassment of this illness. It took me years of living with this illness not to feel shame and embarrassment when my body betrays me in front of my husband … However, the shame and embarrassment I feel with extended family and friends when my body betrays me is still something I don’t think I will ever adjust to; despite my best attempts to apply humour and laugh off those embarrassing moments that inevitably end in tears of shame in my private moments.
The vulgarity, humour and taboo nature is without a doubt all well and good.
But on the other hand, bowel disease, as I indicated in my opening paragraph, sometimes refuses to remain within the confines of the category in which it has been placed.
For many of us, battling specific forms of bowel disease means managing symptoms that are widespread, throughout the entire body, including multiple systems within the body. —The reality of the illness so much more complicated than “bowel disease” sounds. —Complex symptoms termed Extraintestinal Manifestations (EIMs), that can affect every part of a sufferer’s body while significantly reducing the quality of their life and also impacting their family.
Added to which, is the reality of comorbidities for many of us, other illnesses or injuries that wreak havoc throughout our bodies in their own way, aside form, and at times in tandem with the symptoms of our bowel disease.
For me personally, those comorbidities have included gynaecological factors highly suggestive of endometriosis, that I endured from the age of 12, along with injuries from three significant car accidents from 1990 – 1996. —Car accident injuries that included significant whiplash and one clearly definable moderate traumatic brain injury (TBI). Injuries that have gone consistently unacknowledged and uninvestigated despite progressive neurological and cognitive symptoms consistent with post concussion syndrome, subsequent to the first car accident on March 13 1990.
(Or maybe just having a bleeding digestive system for 25 years can have a neurological and cognitive affect on it’s own!? … How would I know, I’ve just lived with all the neurological and cognitive symptoms for 31 years and had active bowel disease for 25 years … Yes, there is a lot of frustration to fuel much sarcasm!)
But I digress … Why am I so willing to share the “womanly” aspects of my story so openly, knowing that men may choose to read it?
Because, men are husbands, fathers of daughters, sons of mothers, brothers of sisters and friends to women who live with bowel disease and digestive illnesses. —Some men, are just as desperate to find answers for the ladies in their lives as the men who are seeking answers for themselves.
And in all honesty, with these diseases impacting both men and women alike, it is not inconceivable that a man’s illness may similarly be influenced by comorbidity of illness or hormonal, dietary and lifestyle factors. —Potentially making my story as relevant to men as it may be to other women.
All I ask, is that my story be given the respect and sensitivity this subject deserves. Simply, so that we can lift the lid on these illnesses, create supportive networks through open dialogue, and look for solutions that conventional medicine is so far unwilling or unable to work toward or provide.
SCRABBLE RESPECT IMAGE
Before I move onto the next post in which I tell my story from the beginning, let me briefly explain a few things I have learnt about the medical field of Gastroenterology and set the scene of my current fight to even be seen by a gastroenterologist, despite my history, along with having lost over 50kg in less than 9 months.
Bluntly, gastroenterologists are quite happy to shove a camera down your throat or up ya bum, write out a prescription or two and give you a good dressing down about your weight regardless of your already highly restrictive diet. —But don’t ever count on any conversation that could indicate you actually have the brain capacity to understand anything about your own body.
And most certainly, do not ask a single question that is wholey valid or significantly worthwhile to your own specific health concerns and symptoms … Because those questions, will never be met with an answer!
Much less, should you ever present to a consultation with a 5 year symptom journal and a timeline of your entire medical history ready to discuss potential patterns related to symptoms of illness; with the hope of getting to a root cause that can be fully treated, rather than having a temporary band-aid solution applied or being told it’s all stress related.
Let me put it this way, I was told the following by the gastroenterologist during my last pre-procedure appointment for both an endoscopy and colonoscopy during 2018…
“I don’t need to know when you last bled or experienced symptoms! … I don’t want to know! … In fact, no gastroenterologist these days will want to know what symptoms happened when … These days, we go in and we look for ourselves … What we find there for ourselves, that is what we work from!“
Patient reported symptoms aren’t wanted or needed?!
Was this guy for real?!
Horrifyingly, what this specific gastroenterologist told me is quite clearly common belief throughout the medical community as a whole! —As I have learnt repeatedly in wasting my time keeping and taking that symptom journal to medical appointments, both gastroenterology and non-gastroenterology related.
A journal detailing immune dysfunction, chronic sacroiliitis, muscle spasms & twitching, episodes of visible temporary paralysis, migraines, disabling joint pain and other neurological & cognitive dysfunction including speech difficulties, spacial perception, balance issues, fainting episodes, paraesthesia and much more, along with the ever present gastroenterological symptoms.
Even worse than the dismissal of patient reported symptoms however, is when a gastroenterologist literally shrugs their shoulders and states, “Well I don’t know why that would be!?”, as the only response given to a bowel related medical event that a GP saw the need to refer to the emergency department of the local hospital, due to the potentially life threatening severity of the event and related symptoms.
(One of those FOUR occurrences of potentially life threatening Haemorrhagic Shock from 2000 – 2003, that I mentioned earlier.)
The latter, only to be outdone by the gastroenterologist who represents themselves as specialising in IBD and not only dismisses a patient with a long documented history of gastrointestinal illness, but also insists in the first and only (highly abusive and categorically negligent) consultation that the patient is not physically ill, but mentally ill. —All based at first sight before any exchange of words, solely on the fact that the patient is a fat woman!
Overall, my case has been consistently viewed as too complex and thrown in the corresponding “Too Hard Basket” while doctors metaphorically stamp “Neurotic Woman Syndrome” across my file.
Those classifications of my case and the dismissal of me being nothing more than a fat lazy woman who is too stupid and undisciplined to lose weight and take care of herself … Being made even more acceptable within the medical community by the comorbidities of the gynaecological factors, along with the neurological and cognitive symptoms in relation to the car accidents.
As I now break my silence entirely, I do so having lost all that 50+kg during the last 9 months because I am now unable to eat almost every food imaginable due to severe oral, oesophageal, digestive and allergy type ramifications.
Literally all my body will tolerate now is the small amount of meat I eat each day in an attempt to maintain a daily calorie intake of at least 800 calories, simply for the sake of keeping my body functioning in daily life. And if I am really lucky, my body will allow me to eat a small amount of potato every 2-3 days without the severity of reaction I get from every other form of plant food.
Seemingly, my body has taken to viewing everything I put in my mouth as an invader to mount a terrifying histamine response against, including toothpaste, lipstick and my need to take care when kissing Daniel, because anything he has eaten or drank moments before kissing me may cause a reaction.
Fibre(?), plant proteins(?), oxalate sensitivity(?) or maybe of some kind bacterial overgrowth after three courses of antibiotics last year(?), has meant that the good healthy vegetables and fruits I had enjoyed my entire life, until early last year, have now become completely off limits to me.
The questioning and seeking answers never stops when your life is impacted this significantly in such a sudden and troubling way.
Mast cell activation? … Is it possible that after 25 years of gastrointestinal bleeding and digestive illness that some form of mast cell activation has now taken place in response to my chronically dismissed symptoms and the antibiotics I took last year for both dental and toenail infections that occurred in tandem?
Menopause? … Is it possible that the changing nature of my hormone levels are playing their own part in all this. I mean, my body has been highly reactive all my life to any form of alteration to my hormone levels, even natural alterations as in pregnancy, and especially my attempts to take the contraceptive pill.
The questions really are endless!
At this point, water is now all I can drink … And yet oddly enough, even water can cause oral, oesophageal and digestive discomfort with a troublesome histamine type reaction which has also involved heart and stomach palpitations, along with breathlessness and at times almost passing out completely.
Equally so, any form of exertion can and does flare those same symptoms, including a walk around the block, taking a shower or simply becoming overheated in bed during the night — with the added bonus of feeling incredibly weak in my stomach as it throbs painfully.
Irrespective of all this, beyond my ever so patient and supportive GP of the last 5 years, I continue to be dismissed and have every symptom downplayed by gastroenterologists and the emergency departments I have been forced to attended on rare occasions during the past year due to the terrifying symptoms of disturbing heart palpitations, my throat tightening, difficulty breathing and dizziness.
And the sad thing is, that back in 2018, when I wrote Acceptance of Reality? It’s Positively Moving Forward!, I had come to a place of accepting that I had exhausted all avenues within the medical community of South Australia, right across all medical concerns I live with on a daily bases … Despite how little testing had been done over the years, and the appalling lack of investigation while consistently dismissing me with the lazy doctor’s diagnosis of various forms of mental or psychosomatic illness.
I had come to a place of accepting that bleeding from my bowel was “my normal” for this life and prepared to never bother another doctor, of any field, with what was clearly — “My Issue” to deal with.
That was until 2020, when my body changed all the rules of the game and I had no alternative but to begin banging my head against that brick wall of our medical community all over again.
The digestive illness I now battle, is without a doubt, the culmination of 25 years living with active IBD amongst many other uninvestigated and unresolved symptoms. —All the while being written off with every diagnosis of psychosomatic pseudoscientific claptrap that currently fills the vocabulary of our overwhelmingly empathy void, self-indulgent and utterly inept, so called medical “professionals”.
And in all honesty, I can see it all quite clearly how this is going to play out as yet another psychosomatic pseudoscientific bullshit diagnosis while doctors refuse to do much of any testing or investigation that takes into account my fully documented medical history of digestive bleeding, gynaecological issues and multiple car accidents involving significant whiplash and at least one clearly definable incident of moderate traumatic brain injury.
So lets get into it, with the second of these three posts!
25 Years of Ulcerative Colitis in The Light of Medical Dismissal.