Listening to my body – part 2

It’s hard to tell whether I will lose some followers on this one, just because of how complicated this journey is getting. So I left off on part 1 telling you that my 1) entyvio infusions were being moved from 8 weeks to every 4 weeks 2) Im due to meet my Endo specialist and 3) I’ve taken the liberty of switching off of progestin-only Visanne (oral birth control) to a estrogen-progestin oral birth control called Minovral which seems to be keeping me on my cycle and has reduced my endo-belly.

Let’s start off with my endo visit exactly a week ago. For the sake of public scrutiny I will avoid mentioning names of my doctors. Let’s call my Endo specialist ‘Dr. E’ for now. Skipping ahead past the routine questions, Dr. E had a resident doctor come assess me first. To be fair, I took a cancelation endoscopy for an hour after this appointment so the doctors were rushing on my accord. The resident was interested in my birth control path, and agreed that putting myself on some form of birth control was the right idea, and certainly if Minovral had helped me in the past it was a good option. She also reiterated that I would use it to skip my periods as I had been, to reduce the ‘cycle’, and eliminate the bleeding which in turn should reduce new endometrial growth. This is key to the understanding of how the disease works. However, where we disagreed is her plan to attack the pain. She was comfortable assessing whether the birth control itself would reduce the pain and then we could address next steps in two weeks. My thinking was that birth control hadn’t worked in the past, Visanne certainly didn’t work, so going back to birth control as the line of defence was practically moving backwards. She called in Dr. E to help with the issue. I wasn’t being irate, I was being rational and she appreciated this. Meeting Dr. E was like meeting a celebrity. He has a fantastic reputation in the community and has overcome tremendous feats for women suffering from endometriosis that I was admittedly somewhat star struck when he walked into the room. Mom helped me gain my composure to address the pain question and this prompted him to get me to lie on the table and see where the pain is located.

Upon inspection I was able to show him that my lower left side, right around where my stitch for the ovarian suspension was, always hurts. Always. Every examination Ive had since my excision in March has resulted in me wincing in pain every time a doctor pokes in that general area. This was a red flag for Dr. E. He then asked me where my upper pain resided so I showed him the right side under my rib (which one could say is my right side of my diaphragm). Practically, this would align with the diaphragmatic endometrial lesions that were cauterize during my excision. Scientifically however, lesions on the diaphragm (so I learned) do not express pain on the diaphragm but refer pain to the right shoulder. This is where we paused for scientific clarity.

In Dr. E’s opinion, one should be pain free 6 months to a year after a thorough excision like the one I had. While the cauterizing did not effectively remove the endo on my diaphragm it should have – along with skipping my periods – significantly halted any growth or spreading of those implants. Dr. E also mentioned that doing surgery on a patient is usually refrained from IF the patient has NOT had this time frame (at minimum) of no pain, as it may point to other explanations of pain rather than it being a direct cause of the implants. Yikes. We agreed that we would order some scans to physically examine the state of the implants (for preparation of any future surgery) but that our primary goal (kind of what I was gunning for in the first place) was to address the pain.

Here is where my life turned upside down. Dr. E told me that there is a Neuroscientist who believes the body can learn to address pain in a constant fashion, even when the body doesn’t meet protection. For more information on this concept, Dr. Lorimer Moseley has created this fabulous video called “Tame the Beast”. (This link will open the video in a new window). Under this concept, Dr. E has administered a pain blocker to many women like myself who are feeling pain in an area that is perfectly healed and not in danger. With my eagerness, Dr. E’s Resident administered two long needles into my nerves associated with this over-firing of pain. It was such a weird feeling. Ugh! I was told that if it is the problem, I should get a rise in pain initially and then the pain should go away within 24 hours, for 4-6 weeks! Note that the pain did go up after the injections but only if I really pressed on the nerves. The pain went away 100% after the first 24 hours and I can happily report there has been no pain for ONE WHOLE WEEK!!!! With regards to the upper pain, the theory is this could also stem from the same problem but given its complex location I would need to be given a neuromodulator (similar overall function of the pain blocker). BUT we decided to hold off as this area is still under scrutiny by my GI.

Perfect Segway…

After this appointment to which I was numb from emotion, I quickly drove over to the hospital down the street for my endoscope. So, this was ordered by my GI (Lets call him Dr. G) to reexamine my pancreas and get to the bottom of this recurring acute pancreatitis. In some ways this would also help to rule out the theory of endometriosis on my pancreas but the rest was up in the air.

When I was about to be sedated the GI (Call him Dr C), asked me if the episodes of pancreatitis ever happened before I started on entyvio. The answer was no. He then told me that a recent publication (2018) showed 4 cases – two adult and two paediatric – of pancreatitis linked to Entyvio (Vedolizumab) and he suspects this may be the case with me. The endoscope was quick and dirty. When I started to come out of the fog, Dr, C waited behind to explain to me that the endoscope looked fine: no inflammation on my pancreas, no scarring, no signs of damage. This substantiated his theory that it could be from my medication and that if my infusion frequency has been moved to every 4 weeks this could exacerbate the pancreatitis. On this front, I have left it to Dr. C to let Dr. G know, and contact me for next steps. The challenge there will be having to take me off a medication that is working for my Colitis and figuring out which other medication will work.

Stay tuned for part 3.

Listening to my body – Part 1

With so many things happening to my body at once, I spend a great deal of time discerning between endometriosis pain, ulcerative colitis pain, anxiety, stress and just an off day. I run out of spoons a lot, and I am starting to look at my body with disdain – something I don’t even want to admit to myself. To put this all together Im starting to become unfamiliar with the body Im living in. Truth be told the last year has been one of the toughest emotional roller coasters of my life (even worse than that time my first husband cheated on me). But everything is coming to a head now…

Ulcerative Colitis

I have met with my GI. He has sat with me and taken all of my specifics down. He was wonderful. He listened to me talk about how my body feels over the course of 8 weeks between infusions and agrees with me that they should be moved to every 4 weeks. This should mitigate the symptoms that creep up around week 5. With the looming possible Primary Sclerosing Colingits (PSC) he wants to ensure we do a colonoscopy every year, with intermittent Calprotectin testing and blood work to stay on top of the whole system.

Pancreatitis

He also wants to get to the bottom of my pancreatitis. We talked about the possibility that this could be endometriosis infiltrating the pancreas. His explanation, which I agree is sound, hypothesizes that the endometrial lesions would have to infiltrate deep enough into the pancreas to cause a blockage or some physical inflammatory response for this to be the cause of my elevated (spike in) pancreatic enzymes. That being said he is willing to look into it, have me looked at by a pancreatic specialist and communicate with my endo specialist to have my body examined from different angles/groups of thought.

Endometriosis

Well, see the rest of my body wants to cooperate but my endometriosis is still a stubborn bitch. On Jan 10th I finally meet my endometriosis specialist and will hopefully get clarity on the chronic pain I have down below, the periods that are still happening despite the Visanne, and the diaphragmatic pain that’s a thorn in my side (figuratively and literally).

Leading up to the holidays my endo belly was killing me! I was almost at 3 weeks of the most uncomfortable endo belly. I mean, I went online and had to buy new pants that would allow for the extra circumference I just developed. And with no sight of this going away, I was getting super depressed. Nothing I tried helped. I thought at first it might be soy milk but I took that out of my diet. I am on gluten free, dairy free, sugar free meals so what the heck was causing this? I wasn’t doing anything out of the norm, and I could tell it wasn’t colon inflammation.

On Christmas Day my uterus decided it wanted to give me a full on period – the first one I’ve had in over 8 months. FML! I knew the Visanne wasn’t working as I was still having a ‘cycle’ without the bleeding. Now… this?? Screw Visanne, Im done. I decided to stop the visanne altogether as it wasn’t providing me any help whatsoever. Three days into the bleeding my period pain was way too debilitating and I had to put my thinking cap on. I wasn’t going to be seeing the specialist for another 2 weeks so think fast. I decided that since birth control is usually the first line of defence against period pain, I decided to pop one of my Minovral oral birth control pills. This way I was getting some sort of hormone into my body, despite it also having estrogen there.

My other line of thinking was that maybe visanne – or rather the lack of estrogen – was somehow behind this outrageous endo belly. This theory was based on nothing at all, other than listening to my body and knowing how it might be reacting to certain changes over time. In case my specialist thought this theory was crazy, I catalogued my belly over the course of a few weeks leading up to my appointment.

 

One day off Visanne
Two days off Visanne – no difference yet ūüė¶
One week off Visanne – things are looking up!
Two weeks off Visanne. I feel human again!!!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

So now I wait…

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Periods and Poop

Why we need to listen to our bowel symptoms

So many young women have approached me about endometriosis – and its related symptoms – to help determine if they have the disease. Because of their age, the vast majority have been told by their doctors that it is likely they have endometriosis but it has not been confirmed through laparoscopy – the only way to confirm endometriosis today. In almost all cases, however, the number one symptom that is consistent with all these young women I have spoken to is increased diarrhea during menstruation.

Over 90% of women diagnosed with endometriosis actually present with GI symptoms as their initial symptoms. Bloating is the most common presenting symptom, and is typically reported by 83% of women with endometriosis” – Lagyndr.com

Not only is this so common, it is a leading factor in misdiagnosing these women with either IBS before the diagnosis of endometriosis has been made. But why is that? Why do we poop more during our periods? Why arent doctors being more diligent in finding the right cause?

OK lets start with ovulation…

Estrogen and progesterone – both naturally occurring hormones in the body – play a role in reproduction (aka sex hormones). Leading up to your period, during ovulation, estrogen is at its peak levels to stimulate the release of an egg. “From then on, oestrogen levels begin to fall.¬†Meanwhile, after ovulation, progesterone does the opposite of oestrogen and continues to rise; this is in order to prepare your womb for the fertilisation of your egg.” – Emma Thornton.

Menstrualcyclegraph..fw

Progesterone can typically cause a bit of constipation but when levels of progesterone are depleted so quickly toward these last two weeks it can release its constipating effects and as result can stimulate some diarrhea (or rather, increased gut motility). While most women between the age of 18-40 are on birth control to help with the pain, the levels of these hormones are usually not as controlled in women with endometriosis and thus symptoms like cramping and diarrhea still break through.

Then you start bleeding…

It has been shown that cramping associated with menstruation is linked to prostaglandins – a hormone-like substance found in the tissue that are signaled to contract to facilitate the shedding of your lining (thus your period). Unfortunately, prostaglandins are found in basically any tissue that is able to contract (aka inflammation) and therefore when the body sends signals for them to contract, it most likely also results in contraction of your bowels. We all know cramping of your bowels is a sure way to stimulate some poop. Note that “Higher levels of prostaglandins are associated with more-severe menstrual cramps” and these higher levels are associated with a number of possible hormone-related issues such as Endometriosis. For those of us who have endometriosis on other parts of our bodies such as our thoracic cavity, we also notice cramping there too. Ouch!

Now lets talk about the gut…

In parallel we know that estrogen hormone receptors are found within the gut. There are several different interactions between estrogen and the gut that we are just beginning to understand, one of which may be the interaction of estrogen with estrogen-metabolizing bacteria residing in the gut which may promote certain side effects such as bloating. Gut microbiota shifts (lower lactobacilli concentrations and higher Gram negative
bacteria levels) have been demonstrated in a primate study of endometriosis, although the mechanisms linking these remain unclear.

We also know that medications such as the well known drug Lupron work by blocking Gonadotropin. “Gonadotropin releasing hormone agonist (GnRHa) stimulates the
production of follicle-stimulating hormone and luteinizing hormone¬†thereby suppressing estrogen production making it a common treatment¬†for the estrogen-driven disease, endometriosis.” If you are not familiar with Lupron and other drugs that work by this mechanism, they put you into chemical menopause which results in a laundry list of potential side effects. However we have seen that by this mechanism – by suppressing estrogen production – certain symptoms such as diarrhea may become tolerable.

Now you talk to your doctor and the conversation goes like this…

“I have painful periods and with it I get a lot of diarrhea” – the doctor glazes over the part about your painful periods and goes right to the diarrhea. First thing, lets get you a colonoscopy to see if there is any inflammation in your colon. Dr. Ken Sinervo from the Center for Endometriosis provides a wealth of knowledge about this very topic here. In a nutshell “As many as 8% of endometriosis patients with bowel symptoms may eventually be diagnosed with inflammatory bowel disease. IBD is usually characterized by abdominal pain, constipation, diarrhea, or alternating bouts of constipation and diarrhea as well as intestinal cramping.” You may be saying this sounds like you but your doctor said they didnt find anything. IBD is very distinct when looking through a camera. The gastroenterologist can see particular parts of your lining (Ulcerative Colitis) or throughout layers of your bowel (Crohn’s Disease) that are massively inflamed from physical ulcers formed therein. If the gastroenterologist doesnt see this they may order a fecal test called fecal calprotectin, which will test for inflammation specific to the gut through a biomarker that can be found in your stool. If both come back negative, and your doctor is thorough, they may choose to monitor any subsequent flare ups by ordering recurring calprotectin tests and measure the potential escalation in inflammation.

But my doctor gave me antidepressants and shooed me away…

If your doctor doesnt know how to look for the signs of endometriosis or doesnt feel the need to put you through a colonoscopy they may diagnose you with something called IBS. IBS is very similar to IBD but in lieu of physical lacerations in your colon you have a faulty gut-brain signal which means your brain is sending your gut these signals to poop. Accordingly to Dr. Sinervo:

Irritable Bowel Syndrome (IBS) is usually treated with dietary changes to avoid food triggers, and increasing dietary fiber. In some patients, stress can be a trigger. Avoiding stress or learning to deal more effectively with stress may help reduce the number of episodes. Exercise is beneficial for many patients. Medications are necessary for some patients. These may include anti-depressants, anti-spasmodics and other medications. In addition, medications that work better for patients with predominantly diarrhea or constipation are also available and have been shown to be beneficial for some, but not all patients.

Lets get technical for a second…

Both IBD and IBS, while they have different signature features, affect the gut. The goal then is to slow down the gut motility – the speed at which food moves through your gut – to try to reduce the number of bowel movements you have in a day. One hot topic at the moment is the gut microbiome. Many women with endometriosis experience something called ‘endobelly’. People with IBS or IBD have similar bloating without the catchy name. If a food diary is kept on hand most patients will identify certain trigger foods that will result in massive bloating. TMI Alert: this bloating is not something you can fart out, it needs to be dissipated over time. Why does this happen?

There is a community of bacteria that live in your gut – known as your gut microbiome. The bacteria have been around since birth, and each person has a unique microbiome based on their diet, their environment, their immune system and a wealth of other factors. The important thing is that you want to keep your gut microbiome healthy, meaning you want to keep particular strains of bacteria in higher quantity – the ones that have a protective nature – and you want to keep other bacteria like sugar-loving bacteria low in population. Antibiotics are a sure way of killing both the good and the bad bacteria, which is why so many of us in the medical community are really against shotgun approaches that render the host (thats you!) without any defense. Nonetheless, after your doctor has guided you on some diet changes such as low fiber and perhaps to stay away from dairy and red meat (other foods that cause bloating and inflammation) you might notice that your bloating is controlled and your diarrhea is not so bad. This is great! Lets not knock it, but it doesnt mean you dont have endometriosis. It just means you are killing off the bad bacteria in your gut – the ones that feed off dairy and sugar and in turn cause massive bloating. These bacteria – if fed properly – would emit gases that cause your bloating. Not convinced? Try taking some capsules of activated charcoal when you are really bloated. The charcoal absorbs any gaseous toxins and removes them through your poop (your poop will be black from the charcoal), and in turn will relieve the bloating caused by these gases.

But the pain is back (or never left)…

If the dietary changes are working for you, stay on them. Because even if you do have endometriosis you will eventually want to adhere to what’s known as the ‘endo diet’ or the ‘inflammatory diet’ which is similar to what you have been doing: no dairy, red meat, or gluten. For those of you with diagnosed IBD, you can follow along in my journey converting from a low residue diet (full of rice, bread and pasta) to one that is low in gluten.¬†But what about the pain? All of a sudden you have to scream for someone to listen to you because, while it’s great that you are not pooping ten times a day anymore, the period pain is still unbearable!

Unfortunately at this time the only way to diagnose endometriosis is through a laparoscopic surgery where they will take a biopsy of the tissue and will remove any endometriosis that can be found while they are inside of you. In Canada and many other countries you need to have had 1 year of failed pregnancy to be referred to a fertility clinic where they then assess your eggs, fallopian tubes and other hormonal factors. Putting the pieces together they can make a case for surgery to make an official diagnosis. For women who are too young to be trying to have a baby, or choose not to have a baby, you will need to be referred to an endometriosis specialist who may or may not want to operate right away but instead help with pain management until it is too unbearable. I know I am painting a very sad picture right now but this is the reality. And to be honest I don’t know the process in other countries.

The first step in pain management is birth control. I know…, they suck! But the reality is that getting your hormones in check will certainly help with the pain. You may need to experiment with a few different types of birth control to see which one fits you best. If estradiol-progestin birth controls dont mitigate the pain, the next step might be to try medications that only contain progestin. Reducing the estrogen content in your body by removing the chemical mimic (estradiol) might help with the pain as well. In fact, along with the progestin-only birth control they may suggest getting rid of your cycle altogether by taking the pill continuously. The hope is that by eliminating any spikes in estrogen which would occur during your cycle this would completely stop menstruation and any side effects that come along with it.

Now it’s time for surgery…¬†

During the surgery you will be put under. The laparoscopic surgery makes three tiny holes in your abdomen and leaves very small scars. There is no telling where the doctors will find your endometriosis but the goal is to remove anything they can see. The point of me dragging this blog on for so long is because in a small percentage of women the endometriosis may be found on or around the bowel which may have contributed to the diarrhea in the first place. That contractile tissue we talked about earlier would have been contracting against your bowel which would have definitely produced some painful diarrhea.

When the endometrial tissue is gone all we can do is hope for the pain, cramping and pooping to be reduced and then we continue the journey from there. Part of the reality is having an official diagnosis which in some ways does bring a sigh of relief. Always looking at the positive ūüôā

Please reach out if you have any questions!

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).

IMG_0605
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.

What the poop?

The battles of submitting your fecal calprotectin test

When I was diagnosed with Ulcerative Colitis almost 8 months ago now, I met my GI for the first time. She and her team were the ones to perform the colonoscopy that would reveal my diagnosis as well as the particulars about the severity of the disease. I was later to meet with her in her office and go over the long term plans. Like many colitis patients, I had some trial and error in finding the medication that was right for me. A high proportion of colitis patients are still struggling to find the right medications for them, and it takes years for any one of us to finally get into remission (if ever). I am still waiting for that day.

If you are new to IBS or IBD you will soon discover that a lot is unknown about these gut-related diseases. While IBD involves physical ulcers in the colon, and IBS has a neurological component, the similarities between the two diseases tend to be more nutrition and supplement related. The former, however, involves an inflammatory component as the ulcers bleed into the gut and can cause tremendous pain and discomfort along with the diarrhea.

Introduction: The disease brings about a mix of symptoms like bloating, diarrhea, fatigue, dehydration; as well as systemic and invisible symptoms such as inflammation. Patients are usually on their own when it comes to managing their symptoms above and beyond that which is relieved through their treatments but the primary goal of the right medication is to reduce the inflammation; the primary indication of ‘health’ that can be carefully monitored and understood by your GI. Your GI will routinely order a fecal calprotectin test which is a poop test to screen for inflammation, or rather, a particular biomarker in the gut (and thus carried into your bowel movement). At the beginning this test is used to help determine the right management program/treatment to reduce the inflammation. Secondarily, the test can then be used as an assessment tool to determine – if on biologic treatment – how regularly the infusions need to be administered to help maintain stasis (ie tolerable side effects and low/no inflammation).

The Test: Depending on where you live, you either need to take a requisition to a clinic to pick up the collection device, or one may be ordered to your house directly. In the kit you should have one container (with our without a stabilization buffer), a toilet bowl collector for you to catch your bowel movement, a tool to scoop part of your bowel movement into the container (sometimes this is connected to the lid of the container and sometimes it is separate) and an ice pack to freeze 24 hours before collection. It comes in a nicely packaged box, and nothing too complicated about it. Here’s the problem though.

IMG_5265

So you get this kit home, and you lay out all the parts, waiting to have a bowel movement but, you gotta remember to freeze the ice pack for 24 hours (or so) before you can start the process. Fair. Alright the next day you lay everything out again, stick the collector on the toilet bowl and finally have some success. The kit doesn’t really tell you how much sample to put in so there’s a bit of a handling struggle there, trying to plug your nose, turn off your brain and scoop your own poop (endlessly) into this container. You close it up, write your name on the sticker, stick it to the container, and place it in the foil bag along with the ice pack. The whole thing then goes into a shipping bag and you call the courier to pick up the package. Here’s the kicker – the biomarker is only stable if it is ‘frozen’ (ie sitting next to the ice block) and must be shipped to the lab the same day! Now you have to wait for the courier to pick up your sample and of course you’re given a random 4 hour window, so no hope in heck you’re going to work that day. The courier comes, helps you fill out the paper work and gets on his/her way. Done.

 

There’s more: More often than not, the sample doesn’t arrive on time or is sent to the wrong address and the whole thing needs to be redone. That means the lab has to call your GI for a new requisition, and your doctor calls you saying you need to be more compliant. I definitely speak from experience here, but I know and can attest to many many others who have experienced this very process. Not to mention that some states/provinces have health care coverage for these tests but the majority of us pay out of pocket each time. In canada this test costs roughly $130 CAD. Lastly, I don’t need more excuses for taking days off work. Us UC’ers are already on thin ice with sick days. In fact us UC’ers have enough to worry about than to chase down our poop samples.

There are other biomarkers that are more stable at room temperature which may provide more wiggle room on how long you have to ship the sample. But those markers may not be as reliable as calprotectin (say, lactoferrin for instance, but this comparison is currently being evaluated).

So how do we close this loop? How do we get the results to our doctors in a reliable, timely fashion so that they have the tools they need to assess our colon health and can make informed decision on our health care?

Some hope: Recently I came across a very interesting development for the calprotectin test. A company by the name of Buhlmann – A Swiss company known for their Calprotectin ELISA assay – has developed an at-home collection kit that can be done in the comfort of your own home, on your unique bowel movement schedule, without the need for shipping or lab processing. To learn more, watch this instructional video.

As a patient I am inherently sceptical of new technologies and large companies, but the more I look into this test the more I see a sincere need for this technology. Many GIs, including some very renowned ones here in Canada, have been actively validation this product in hopes to implement this tool into the medical system to derive higher compliance and patient outcomes.

Preliminary results have shown that the test is easy to use, comprehensive, and quick. The results from the fecal tube are registered on the IBDoc app, and then sent immediately to your doctor’s portal where the results can be read and acted upon with quick turnaround. To read more on this test, see the links below.

https://www.buhlmannlabs.ch/products-solutions/gastroenterology/ibdoc/

 

Disclaimer: I have no affiliation with Buhlmann but 1) do work at a private company that offers calprotectin testing and 2) I have personally experienced all the trials and tribulations listed above. Seeing the issues from both sides I would love to see improvement on patient experience and reliable testing methods to benefit the patient.

References:

P134 Home based faecal calprotectin testing: a Canadian user performance evaluation study of IBDoc¬ģ

P273 Validation of a smartphone-based patient monitoring system measuring Calprotectin as the therapy follow-up marker

N804 An evaluation of patient satisfaction with IBDoc calprotectin home test system

Agreement Between Home-Based Measurement of Stool Calprotectin and ELISA Results for Monitoring Inflammatory Bowel Disease Activity

Pro-active Fecal Calprotectin Monitoring PROMOTE-UC

My new sistas!

The Support Network of Spoonies

It has been 23 days of constant (chronic pain) and sadly I dont see a light at the end of the tunnel yet. I am trying my very best to live, and breathe and be positive but some days are better than others. To say the least I have been spoiled by my friends and family and I admit they have seen some of the best and worst of me lately.

Two days ago my mother kept coming into my room (she flew across the country to take care of me) to show me new blogs she has come across reporting on ‘ways to cope with endo’. We still think its thoracic endometriosis so she has gone full fledged google monster. While I should have been thinking ‘wow look at her taking an interest finally’, my brain went straight to anger mode. I said to her ‘these are things I have known for 20 years. Find me a doctor who can remove this from me, thats how you can help’. Yeah I literally said those things. I love her to death and dont know what I would do without her but sometimes – especially in these moments of frustration and exhaustion – I get mad at the band wagon jumpers who assume I havent googled everything from here to Mars.

Needless to say while I did apologise, Ive found that the best way to keep me positive is by reaching out to the community of spoonies that just ‘get me’. I recently, before experiencing this marathon pain, rebranded myself and started reaching out to others who have both colitis and endometriosis. In such a short period of time I have made friends over instagram and twitter, along with a fantastic support system on several facebook groups.

My way of helping you, while thanking them, is to introduce you to some of my new friends.

Meet Erin, aka The Herbivore Kitchen. She is a local to me – right here in Vancouver, BC. I started following Erin on instagram and fell in love with her meal ideas. When I found out she was local, we quickly started chatting over email and hopefully will meet in person one of these days. She has inspiring endo-friendly meals but has given me inspiring words through her email hugs.

Meet @mycolonaintcute on Intagram; A Welsh Londoner who has held my hand through some big ups and downs lately just by being there for me. Her meal ideas are fantastic for both flare and non-flare times. And most of all she has a great sense of humour.

Meet @lowfodmapchatherine who is a recent friend but is helping me – with her words and her delicious low fodmap menu ideas, how to turn my colitis diet into a healthy one. Check out her instagram when you get a chance.

Meet The Heatpad Queen, a beautiful soul showing the most gruellingly honest parts of having endometriosis and other autoimmune diseases. She has created a wonderful network on instagram and through her blog.

Meet @one_spoon_at_a_time_ another beautiful soul on Instagram who is battling motherhood with Crohn’s Disease. Beware her pictures are absolutely stunning. And best of all she’s another local here to BC.

Meet @mygreencolitis who has been capturing her own going green pictorial journal as a way keep motivated. Meanwhile she has been holding my hand, both in the journey of eating well with colitis, but in finding my way. If you are a UC patient looking to go green, this Instagram will totally motivate you.

I thank all of you for being a part of this journey from far and wide.

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 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 Рoutside the uterus Рonto 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 Рblood, 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.

Travel Symptoms for UC and Endo

I have mentioned in the past that the diet for endometriosis and the diet for Ulcerative Colitis are quite contradictory to one another. In the years that I only knew about my endometriosis I knew exactly how to avoid getting endobelly – the distended belly that results from inflammatory foods such as carbs. But once I was diagnosed with UC, I noticed that sometimes the distended belly is not from endo but in fact from some bodily confusion where my colon decides to just hold tight to my “food” for a while before releasing it. Here are my observations:

As my food moves down the descending colon I think it gets stuck there for a bit and is painful to say the least, due to the massive pressure it puts on my body. Then as the bulk finally moves into my sigmoid colon it is painful  Рlike actually painful Рand very speedy. As I am often curious how healthy my bowel movement is (cus who doesnt look in the bowl after a good one?!?) the size of the bowel movement is much smaller than the size of my swollen belly before everything came out, which leads me to believe there is a lot of swelling and edema (water retention) happening as well.

Last week as I was preparing for my trip to Atlanta I had a bit of (what I thought was) endobelly. I thought, “maybe I should do one of those before and after pics to share with people”. But I also forgot that traveling also makes me bloated. After three days (below, left) my belly was quite the basketball. I waited and waited,… no relief until finally I landed back in Vancouver last night (5 days later) and my body felt at ease (below, right). Needless to say there are endless trips to the bathroom to go from the left image to the right image, but man does it feel good when its out.

I have NEVER shared these types of photos before so Im a little nervous at the criticism I might get, but knew in my heart it was time to share this. I hope this makes others feel less alone with these symptoms.