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.

Is it rare or medium rare?

Back in 2012 when I had my first surgery to diagnose and treat endometriosis, my surgeon was able to ablate the lesions from my Fallopian tubes, but he was not comfortable working with the lesions on my bladder. For five years these implants continued to grow and spread, until my recent surgery in 2018 where endometriosis was excised from my bladder, colon, and ribs. Sadly, there were implants on my diaphragm that my surgeon did not feel comfortable removing as she was not trained in working with the thoracic cavity. In these cases of thoracic endometriosis, only a handful of doctors in the world are skilled enough to work side by side with a thoracic surgeon to carefully ablate the implants using a technique called VATS (video assisted thoracoscopic surgery). Thus, after waiting and suffering 5 years between surgeries to remove the endometriosis (for a total of 20 years) there were still residual implants left inside my body that I knew was going to spread eventually.

A few months after my surgery I went into the hospital with excruciating abdominal pain. Upon admitting me into the ER my blood work revealed elevated lipases at 2000. A repeat blood work showed the same spike and so I was admitted as an in patient to continue doing more tests. That story ended quite quickly as is the beast of the medical system: two doctors claimed I had pancreatitis but the more senior doctor disagreed and sent me home. I suffered – and continue to suffer – 2 whole months with this chronic debilitating pain. It so turned out that after around 7 weeks I started to exhibit symptoms of a colitis flare and was going to pull through at home until I had these weird heart pains which were new for me and fairly frightening to say the least. Skipping ahead to when I got to the ER, my lipases were at 4000 and this alarming number enticed the doctors to admit me once again, even though this wasn’t what I came into the hospital for. Back on the pancreatitis train we went, proceeding with blood work, a chest X-ray, fecal testing, two endoscopes and the list goes on. While my lipases continued to bob all over the place during my 7 day stay at the hospital, my colitis symptoms subsided and the mystery continued. This visit brought on the interest of the general medicine doctors and the gastroenterologists who ruled out acute pancreatitis (I don’t drink and I don’t have a gallbladder to form gallstones: the two main causes of acute pancreatitis). They failed to fully rule out autoimmune pancreatitis as my IGg4 levels were normal (as is the case with type 2, not type 1). They also failed to rule out EPI – exocrine pancreatic insufficiency – a disease in which your pancreas lacks the fundamental enzymes to break down foods into basic nutrients and thus your body does not absorb nutrients from foods you eat.

Along the way I had suggested that since none of the scans showed any abnormalities in the pancreas, any blocks or any stones, that perhaps this could be endometriosis on the pancreas, making it angry, and causing it to spike in lipases. The theory was not thrown out. In fact, the two teams of doctors thought it best to bring in the Gynaecological team for a consult to see how plausible this could be. First came the residents who stated this was an interesting theory although the endometriosis on organs such as the pancreas and liver were too rare. I begged the question “is it more rare to have it on my organs or on my diaphragm?” – needless to say the answer was not provided. The second step was to ask the attending doctor what he thought about this theory. Instead of having a voice he played the politically correct card and deferred to my endometriosis specialist who unbeknownst to me is the head of gynaecology at the hospital. Here is what she said:

I have never seen endometriosis on the pancreas in all my years of practice and I strongly believe this cannot be the case. She would be written up in a case study. I have told the patient that she should be on Lupron to use as a diagnostic tool to determine whether the pain she is having is in fact associated with endometriosis. I now, however, think that we should hold off on lupron as it could confound any other finding for this cause of pain, and so we will back out of this case until the other departments have run up against a wall,… and then we can bring lupron back on the table.

That, my friends, was the last time I heard from my endometriosis specialist aka my quarterback. I was livid. I was exhausted. I felt denied and betrayed all at once. The other piece of this story is that she refused to refer me to THE ONE AND ONLY doctor in Canada who is qualified to remove endo using VATS until I performed the lupron diagnostic. She never came back onto the case, and I fired her. Because, I can!

Today I continue to suffer from the abdominal pain, in the comfort of my own home, and have a few extra tests booked as the doctors are curious and excited to determine what is going on with my body. I cannot say I was denied proper care because the doctors at the Vancouver General Hospital have always gone above and beyond. What I can say is that while endometriosis on my pancreas may sound like a hilarious and rare probability, I have since been in touch with a handful of endo sisters who have either suspected or confirmed endometriosis on their pancreas and/or liver. So again, I ask you, is it really that rare, or is it medium rare?

Endometriosis is a disease that effects 1 in every 10 women. Some say it is genetic; others attribute the disease to early life trauma, and in some cases we hear cockamamie theories such as “women bring this upon themselves by having sex too early”. Women at the age of 14+ begin seeing a gynaecologist for yearly Pap smears. These doctors are specialized in the reproductive system but so few of them understand endometriosis. There are highly specialized endometriosis surgeons who have spent a great deal of time understanding how this disease spreads and furthermore how to eradicate the endometriomas from organs and spaces outside the womb. These surgeons, albeit experts in the field, may or may not be able to work with certain organs such as the bladder, the colon and in some cases even the diaphragm. Even worse, a very small number of endometriosis surgeons are trained in excision surgery; they continue to perform ablation surgeries that simply cauterize the lesions. The point is there are very few resources dedicated to better understanding this disease, and very few professionals who are specialized in the field of treating endometriosis.

If you are looking for proper care for your endometriosis please ask the questions you need to, to determine which piece of the puzzle your doctor is able to take care of. If your gynaecologist does not know how to treat endometriosis make sure they refer you to an endometriosis specialist. If a surgeon wants to perform surgery to treat the endometriosis make sure they are conducting an excision surgery – this is the only type of surgery that will remove the lesions and give your body a fighting chance.

A pendulum between two diseases

Between Ulcerative Colitis and Endometriosis

Where did I leave off?

Oh yes. So I kept you hanging with the MRI results, and still no word from either doctor.

On Monday morning I called to make an appointment with both my GI and my endo specialist. My GI had just returned from holidays and I was kind of expecting to hear back from her about all that had happened while she was away – and the pile of files she must have obtained from the various tests I had done – but instead they booked me in to see her later this week. My endo specialist doesnt have an opening until the end of August!!!

Monday and Tuesday were much like all the other days. Even keel pain, and some flickering of something down below (near my ovaries). The biggest thing though was intense (INTENSE!!!) exhaustion. I could barely stay awake. Monday I woke up at 7:30, did some work, and then fell asleep from 10am to 4pm in the evening. Tuesday, a similar pattern (shhh… dont tell my boss).

Wednesday was starting out to be like the others, but my boyfriend was sadly due to fly back to Ottawa, and mom was flying in shortly after to take over the ‘sicko’ shift. I coaxed myself to get up and do some things in the house; some real work, some chores, etc. Greg walked out the door, I had this shooting pain in my pelvic area, went pee, and… started bleeding. Spotting only, but then my ovaries were on fire. Great! Arent I freed from this burden by taking my Visanne every day? As the hours progressed before mom showed up, the bleeding remained a slow dribble but the intensity of the pain got worse, and with it so did the abdominal pain. This was quite the lose lose situation. Mom showed up finally and we somehow mustered up the strength to gab for hours until I called mercy and had to go to sleep. A restless sleep at that.

A pendulum between two diseases

Thursday morning (today) I prepared for my appointment with the GI. Here is what we concluded:

  • the pancreas and liver, and their associated markers, all look normal
  • my colon is happy as can be; no word of ‘remission’ yet but my CRP, Calprotectin and all other markers indicate that my colon is not inflamed, and that without diarrhea and bleeding the entyvio appears to be working.
  • so this further supports the notion that this could be endo, which is out of my GI’s expertise and hands.
  • Oh, and I still have what they consider early stage ‘possible’ PSC which calls for a colonoscopy and an MRI once a year to check on any emergence of odd cells or inflammation.
  • As a last effort on her behalf I am to take Dexilant for two weeks to address whether this is acid based (ie an ulcer or something related). If the drug works we see if there is time for a scope and if the drug doesnt work it further supports that its not a colon issue and more an endo issue.

 

The one good thing out of this is that I am able to try Neproxin for my pain, which was my saving grace before my excision surgery. The downside to this is the drug is advil-based so it may cause bleeding and diarrhea. So I am to monitor this very carefully and see what happens. Again, I will keep you posted.

My abdomen is not happy

Undiagnosed abdominal pain

I dont know how to begin this blog article other than to really start at the beginning of this journey. I thought for sure this wouldnt be worthy of an article as I just assumed this pain would go away through a fart, or a bowel movement, or maybe by way of antibiotics. But … I thought wrong. Now, 13 days later I think it might be worth sharing this journey for others who may have experienced (or are experiencing something similar).

The Beginning…

On Monday July 2, the holiday given to us Canadians for Canada day, I woke up utterly exhausted. I had nursed perhaps all of one beer the day before, so it wasnt the alcohol. I chalked it up to too much sun. But selfishly I knew there was something else going on as I started crying at the littlest of things. I didnt know how to explain what I was feeling… just ‘off’. As the day progressed I started feeling this dull pain in my abdomen – below and between my ribs, above my stomach. It got worse and worse, to the point where I was keeling over screaming in agony. This resulted in my first hospital visit of many. To the ER we went, where I saw a doctor who ordered blood work, and came back an hour later to discharge me with ‘we dont see anything abnormal. It could be your UC flaring up because your biologics may need to be administered in shorter intervals’.

Day 2 (Tuesday July 3)

By the time I was discharged it was midnight on Monday, and there was not much sleep to be had that night. In the following morning, I was preparing myself to fly back from Ottawa to Vancouver (where I currently call home). I was partly excited because I was scheduled for my next Entyvio infusion the next day and I had high hopes that perhaps the Emerg doctor was right, and the infusion would fix it all. The pain continued to escalate throughout the day, and just as I called my Uber to take me to the airport I started to get really nauseous. I made it to the airport… but there was no way I could get on that flight. I was distressed. Nauseous. Sweating. In agony. So I quickly got on the phone and called the Innomar Clinic to see if I could instead have my Entyvio infusion administered in Ottawa ASAP. They were so compassionate and understanding. Somehow they were able to get me in for first thing the next morning, so I crawled back to my apartment in Ottawa and crawled under the sheets hoping for tomorrow.

Day 3 (Wednesday July 4)

The morning arrived, with no shortage of pain, and off to the clinic

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I went. The nurses at the clinic were just so warm and friendly. I knew this was going to be the ticket to my good health again. After the infusion I felt rather tired, much like I had felt after the first few loading doses (this was dose 5!!) so I waited and waited for the Entyvio to melt away this pain.

Just melt it into an oblivion like it never happened. A blip in the road. Yeah that didnt happen. A whole day went by, no relief of symptoms, and just plain fatigue. I was knocked out for the better part of the day.

Day 4 (Thursday July 5)

Thursday morning at the crack of dawn, my boyfriend was already scheduled to fly from Ottawa to Vancouver to visit me, so I was smart enough to reschedule my flight to be with him. He was going to see me after all, so I should probably be there :). We got on the plane; things were feeling ok. I managed to read some of my book, have a latte to warm me up, I may have snuck in a 10min snooze in there somewhere. But by the third hour I was in agony. That dull abdo pain was back. No nausea thank goodness though I could have dealt with some fatigue at that point to knock me out for awhile.

Once we landed, I think the air pressure did make things feel a bit better to be honest, but only marginally. I was happy to be on the ground, in the city with all my specialists. When I landed however, I had a VM from my GI saying my calprotectin levels appeared to be normal, and she was headed off on vacation for 2 weeks, but to be sure to go to the ER if the pain persisted. Persisted it did! Off to Emerg we went again. This time I had more blood work, a ECG, and a CT scan done almost right away. They took be upstairs to become an inpatient which was great news because it makes it easier to order and expedite any additional tests. I was told that my lipases were high – which means pancreas issues. But my liver enzymes and CRP were low, so that was good. I was ordered more saline drip and I just rested as best I could. The fecal occult test showed positive for some blood but nothing alarming.

In the middle of the night the Resident Doctor who I had met briefly in conjunction with the ER doctor on call woke me up to tell me that the blood work and the CT scan both indicated pancreatitis. No idea what caused it yet, but that in the morning there would be additional tests to see where to go from here. So I slept.

Day 4 – the day it all went downhill (Friday July 6)

In the morning, around 8:30am, the doctors were on rotation, visiting all the floors. I was in a random room on the TB floor due to shortage of beds, but surprisingly they made it to me quite early. This was the day I met Dr. *Kid. Dr. Kid, the resident doctor and another female doctor walked in, with Dr. Kid leading the pack. He told me that the blood work and the CT scan both came back negative… (wait, didnt I just get told 8 hours ago that… oh nevermind, what do I know?!?). He said based on this information he was discharging me. I asked him why they would be so keen to let me go when I still had dyer pain, to which he responded “what were your expectations coming in here?” … lets just say I let that one go or else Dr. Kid would be walking out without an eye.

Somewhere between my room and the nurse’s desk Dr. Kid decided to extend my stay for one more night to keep an eye on me, however, my saline drip expired somewhere around 2pm, which was administered as the fasted bolus I have ever experienced and my IV had to be changed because it burst the vein. Great. Needless to say neither I or the nurses knew the plan but I knew I had to ween myself off the Morphine cus those would be unavailable soon too. The pain persisted and so did my anger. I struggled to understand why he wouldnt send me to a gyno or a GI (I asked BTW and his response was ‘im an internal medicine doc, there isnt anything they know that I wouldnt know’… yeah).

For some reason I was unable to have a bowel movement since I arrived at the hospital which was a nice change for me, as opposed to the diarrhea I was having at home. But I was expected to give a stool sample so I asked Greg to get me a soy latte for some assistance. A few hours later I had a tiny one, and it was like green mucousy sludge. So gross.

*Hiding Dr. Kid’s real name for his own protection.

Day 5 (Saturday July 7)

I had managed to stay in the hospital for 2 full nights which was unexpected to me. I knew my fate was coming to an end though. Luckily my BF was in the room by the time Dr. Kid showed up, alone. His tone changed significantly knowing that my body guard was there in the room with me. He told me that there was a slight elevation of my liver enzymes yesterday but it had since come back down, as well as my lipases. So with that information he was discharging me. Oh, and he said he would give me a courtesy handful of hydromorphone to help me manage for a few days.

The hospital, despite me being a UC patient, was giving me a regular diet so half the items were unworthy of my colon (*eye rolling*). When we got home, for the fun of it really, we decided to go on a soup-based diet to see if it would effect the pain. This is one thing that is recommended for pancreatitis. It did! Well,… let me preface that. The Bone-broth and broth based soup diet didnt spike the pain like solid foods did, so I continued with this. No solid foods, no alcohol or caffeine. Just a ton of bone broth. We even cut regular soups with the bone broth for added health benefits.

No bowel movement this day. Seems the morphine was making me constipated despite their lack of effect on the pain itself.

Day 6 (Sunday July 8 – aka my birthday)

I woke that morning to a beautiful bouquet of flowers and a hilarious birthday card. In light of it being my birthday I said ‘mind over matter’ and decided today was MY day. symptom wise, I was still feeling a lot of pain, and I continued with the soup diet. I added banana for potassium, and also started taking Vitamin D and Calcium just to make sure I didnt pass out from malnutrition.

Day 7 (Monday July 9)

Same as the day before. I dont think there was anything different in terms of pain, but I started to notice that my bowels were super gurgly and any bowel movement I had was dark green and loose like bile.

Day 8 (Tuesday July 10)

Something crazy happened that day. In the morning, Dr. Kid called me to ask me how I was doing. As soon as I told him I wasnt feeling any better, his arrogance sort of melted away. He thought for sure he would be right about this one. Again, his response was that none of the dots were connecting and hopefully I could manage on my own at home. To which I replied “yes I have a few other doctors interested in my case so I think thats my next step”. … I caution you…. never say this to a doctor you like. Only to the ones you want to knock down a few pegs. A few hours later Dr. Kid called me back and asked if I could come to his office the next day for a full blood work up. I was game.

That same day I was put in touch with a doctor in the US who is friends with my boss. This doctor has seen it all, and done it all. With him, he spent dedicated time over the phone to understand my full history. In a matter of minutes he told me ‘you need to make sure the doctors are listening to you. Without taking your whole history into account they wont find the problem”. He told me I deserved to be heard, and concluded that his guess would be my diaphragmatic endo was now spreading to my liver and other organs OR adhesions affecting my stomach and bowels. This call changed my life in an instant.

Day 9 (Wednesday July 11)

I hadnt slept much that night; partly due to pain and partly thinking about the things the other doctor had told me to consider. Needless to say, while I was kind of excited to see what Dr. Kid had to say to me today I wasnt overly ambitious that he was going to investigate anything further. With my GI still on holiday and my Endo specialist not involved yet, Dr. Kid brought me in to do a breathing test, to feel my belly, and then went through my symptoms again. No real change. No real interest. But for his own ego he decided to do two things: order a full blood workup and prescribe me Panto to see if this was acid involved.

I went to get the blood work done, and left the cortisol test for the next morning as I was scheduled for my MRI the next morning.

Day 10 (Thursday July 12)

I was scheduled to have this MRI last week but when I missed my flight in Ottawa I called to reschedule. This MRI was booked months ago to confirm or rule out my PSC from back in November when they say ‘possible signs of positive PSC’. In light of recent events they also looked at my pancreas (I think). I fasted for 6 hours leading up to the test, and then upon arrival was asked to drink pineapple juice. Something about pineapple juice plumping up the bile ducts. After the MRI was done I think I was in pain from the breathing exercises so we rushed over to complete my cortisol blood work and then went home. I crashed. Hard.

Staying on the soup diet, my stool was still regular but dark green. I also started getting nauseous.

Day 11 (Friday July 13 aka the end of Dr. Kid)

On Friday morning I knew there was going to be 1 of 2 things happening. Either Dr. Kid was going to call me and tell me there was something terribly wrong OR he was going to call me and tell me I was an idiot and nothing was wrong. The result was somewhere in the middle. He called in the late afternoon, just before the weekend, to let me know that my blood work looked good but he didnt have the MRI results yet. I take a pause because this is where us spoonies differ from the rest of the world.

The rest of the world: Oh my goodness Im so glad your blood work is fine. I can breathe now.

Spoonies: Im still in pain….

So thats how Friday sort of ended, with me utterly frustrated, and those around me feeling a bit more relieved. Needless to say, the pain persisted, and the weekend was coming (ie I didnt have to try to fit in work during the day and was free to sleep).

I also decided that if Dr. Kid was insistent it wasnt anything concerning my organs, I was gonna go back to eating solid foods. the soup diet was fun and all, but making me rather light headed. I had gluten free dairy free mac and cheese!!

Day 12 and 13 (Saturday July 14 and Sunday July 15)

The last two days I have been sleeping a lot! In fact yesterday morning I woke up at 9am, went back to sleep at 10:30am and slept until 4pm. I napped for six hours!!! Today has been better insofar as sleeping goes. I have had much more stamina but the pain has been pretty consistent. I just didnt want to waste the day. Mind over matter I guess.

On Friday I decided the Panto wasnt working so I stopped taking it (upon guidance from Dr. Kid of course). The drug is known to change your gut microbiome and I could tell it was making my bowel movements more of a clay color – no longer the bile green – and terribly hard. Ive also been having 3-4 bowel movements a day the last two days though they are of good texture (LOL!).

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The current plan is to see if either/both my GI or/and my Endo specialist can assist me into looking at what could be causing this pain. In an ideal world they will refer me to someone who can handle my complicated story – possibly someone who knows how to deal with thoracic endo!

I promise to keep you apprised as I learn more. For now, Im off to enjoy the rest of this Sunday.