The Reuleaux of my health

The meaning behind the logo

For the last 20 years I have been trying to better understand and ‘treat’ my endometriosis with surgeries, birth control pills and pain medications. In the latter years I started to get wiser about the effects of nutrition and thus started to explore dietary solutions to mitigate the symptoms associated with endometriosis, namely the inflammatory diet. 20 years later, I found out that I also have ulcerative colitis, a form of IBD (Inflammatory Bowel Disease) that was present for years without rearing its ugly head. The triggers expressed themselves as common symptoms associated with endometriosis (bloating, diarrhea, pain/discomfort) that lead most endo women to be (mis)diagnosed with IBS (Irritable Bowel Syndrome). All it took this time was one trigger – perhaps a glass of red wine – that flared the colitis so badly that it was enough to show up in stool workups and a colonoscopy. To understand how they diagnosed me for UC see my article here: Part 1 and Part 2

While endometriosis is not an autoimmune disease, there are a number of co-morbities, suggesting women with endometriosis may be more prone or susceptible to developing autoimmune diseases. Likewise, 25% of people with one autoimmune disease are likely to develop a second autoimmune disease. Part of that equation is genetics, some of it may be due to epigenetics (the lingering genetic effect from your ancestors), some of it of course may be environmental including the things we eat. Yet while there are billions of dollars going into understanding the mechanisms behind autoimmune diseases, there are not enough doctors who specialize in understanding the underlying causes of inflammation,… as a whole.

Up until recently my life was regaining momentum; with another endometrial excision surgery behind me in March of 2018 and rapid improvements through biologic treatment for my Ulcerative colitis. But then on July 1st 2018, I woke up knowing something was wrong. I had not eaten or drank anything funny the day before, I didnt overly exert myself, but my hormones were off, my spoons were run up, and I started to feel achy in my upper abdomen. Needless to say this pain went from a 1 to a 9 throughout the course of only a few hours and I ended up back at the hospital for what was the beginning of the journey into the investigation of my idiopathic pancreatitis. Note that I have not been definitively diagnosed with anything yet, but the doctors are puzzled as to whether they are seeing true pancreatitis, autoimmune pancreatitis, an abnormality somewhere along the upper digestive tract or if this is endometriosis on the pancreas (spreading from the known implants on my diaphragm). You can read about this journey in Part 1, Part 2 and Part 3.

What my life now comes down to is a Reuleaux triangle  – the middle part of a Venn diagram (the fatter, black outlined ‘triangle’) – where I can reduce my three diseases down to its commonalities and start to treat them together. For the first time in my life I can start thinking about the big picture and stop trying to interpret all the different nuances of each of the diseases. While each of them have their particulars (for example NSAIDS are great for endometriosis but increase ulcer bleeding in colitis patients) that need to be well understood, perhaps looking at whats causing inflammation for one disease could assist with reducing the inflammation associated with the others (aka a holistic view).

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My Reuleaux Triangle

The best (hidden) meaning for the logo though, is the perfect triangle in the middle of the reuleaux triangle – the Greek symbol for ‘change’. Honey, if there is one thing I am determined to do from this day forward, it is to change. Not my core being (I like who I am) but …

Change my mindset of how to look at these diseases.

Change my approach on how to combat these diseases.

Change the way I feel after a doctor tells me I’m insane or that I dont have any options.

Change the way I look at, and feel about, my body – the one I believed was flawed.

Change the way I carry myself.

Those are hereby here in writing so that if I forget my way, I can come back to remind myself.

Needless to say, through my journey of targeting my reuleaux triangle I hope I can continue to bring knowledge and experience to others who are diagnosed or looking for answers for undiagnosed autoimmune diseases and chronic illnesses.

My body is attacking itself

Having multiple autoimmune diseases

I was born a fantastically healthy baby, with no jaundice, asthma, or abnormalities that would see me through to adulthood. Until I was 14 and the much raved about menstrual periods started.  I was overjoyed by the fact that I was part of the club that I didnt bother mentioning to anyone else the pain and flow that accompanied mine. At the age of 14, I was sent to the hospital with period pain and was pre-diagnosed by a brilliant doctor, a disease called Endometriosis. At the time we didnt know much about it but several years later the industry learned that it was an autoimmune disease. Up until recently it was believed that endometriosis was endometrial tissue that escaped back inside the body – outside the uterus – onto organs. But now, we have learned that endometriosis is endometrial- LIKE tissue that forms on organs out of bloody nowhere, and acts like your endometrium – blood, pain and all. WTF!

Starting around my 25th birthday I started having very rare, intense pain in my upper abdomen. It would strike out of nowhere, often accompanied with alcohol, and would send me to the hospital. The pain was followed by throwing up, blacking out, and waking up with a doctor telling me I drank to much and sent me home. This happened about once a year for 4 years. Doctors came up with everything from alcoholism to anxiety to phantom pains. Nah…. didnt add up.

Just shy of 2018 I was diagnosed with severe ulcerative colitis. Ok this one threw me. I mean I had no idea and apparently I have had it for years. I just assumed the diarrhea and wrenching pain was from my endo. Ive since been treated with Entyvio and so far so good. Well,… until last week.

Right after Canada day – no alcohol in site – my upper abdominal pain kicked back in. I had remnants of it when they tried to give me a 5-asa back in November. And it kind of feels like my diaphragmatic endo. But its not. I assure you. This pain has lasted 9 days and counting.

At first they thought it was pancreatitis but they ruled that out with a CT Scan. They are still exploring PSC which they think they found back in November. That should be ruled out on Thursday with an MRcp. And its not my gallbladder which was taken out back in 2007 which later was hypothesized was due to endo and not gallstones.

Which organ is next? Why is my body attacking itself? What is the cause and are they all linked? IS there one cure to fix it all?

Where did my Entyvio go?

What happens when your biologic starts wearing off

Those of us with autoimmune diseases know our bodies so well, and while we often cannot explain what we are feeling, we know something is up. Starting in February I had my three loading doses of Entyvio, and then experienced my first 8 week interval without the medication. So in theory I have had 4 doses of entyvio. I can honestly say I started feeling results after the first or second infusion, and was excited that things were moving in the right direction.

But this last 8 week period has been a doozy. After 5 weeks I could start to feel some symptoms (or maybe they were side effects) of the drug. At first my GI was concerned that the extreme bloating around week 5 (see my post about my belly!) was a side effect of the medication. She had me do a calprotectin test (ugh, thats a blog post in itself), then another, and I still havent heard back from her so, thats a thing. Meanwhile, I reached out to the lovely folks on my facebook group and they guided me towards activated charcoal pills. Folks, I kid you not this stuff is amazing! It is designed to work with the bacteria that converts certain foods into gases such as methane, and it absorbs the gases. While it doesnt act on any cytokines or inflammatory factors it definitely reduces the bloating by way of the gases.

Unfortunately around week 7 the charcoal was no longer doing the trick; there was more happening than just bloating. First it was upper colon pain, which I was scared it may have been liver pain as they havent ruled out PSC yet and this pain was very prevalent back in November during my diagnosis. So I went to the hospital, and my blood work was all normal (CRP levels to come, and no Calprotectin obviously). They discharged me, and that night I started developing radiating leg pain, and joint pain. I became so tired, I didnt know what to do.

One day before my next infusion (yesterday) I was scheduled to hop on a plane and get back to Vancouver from Ottawa (thats across the continent for those of you not familiar with Canadian Geography) and that didnt happen. Just as I was approaching the airport my nausea became so bad, and I wasnt sure I could make it through the airport without either hurling or fainting. My first instinct was to call the Innomar clinic that administers my Entyvio infusions and asked them if they could fit me in that night or the next morning. They were so kind! They squeezed me in for this morning, and contacted the Vancouver site to let them know I would be having my infusion in Ottawa.  I also had to call the Vancouver General Hospital to let them know I wouldnt be back in time for my MRI (for my PSC) and they too were very lovely. They rebooked me somehow for next week.

Today I received my infusion, met the nurses that will be administering my infusions come September when I move back to Ottawa, and have done literally nothing but sleep all day!!! I mean, all day! Pretty sure I have been delirious for days, and may have even attempted to write some emails that I cannot remember (lol). The pain has not gone away, but the leg pain has, and the joint pain is lessening. Hopefully this is a lesson learned, and something tangible I can take back to my GI to optimise my treatment frequency.