I cannot poop

I cannot poop.

It is not lost on me how ridiculous that sounds. It is not lost on me how much of an exaggeration and an over simplification this sounds to someone else. ‘What do you mean you can’t poop?’ they ask. ‘There are things you can take for constipation’ they suggest. But it’s not that simple. I’m not constipated, as counter-intuitive as that may sound.

Five months ago I will admit I thought I was constipated. One month post excision surgery to remove adhesions that were attaching my bowel to my abdominal wall, among other things; it seemed like a logical explanation. I wasn’t overly zealous on the pain medications but perhaps the small amount was constipating enough. I would go days without pooping. And while my calprotectin levels showed my ulcerative colitis was still at bay I knew something was starting to get serious. Five months ago I tried magnesium baths, calcium pills, prunes, yoga, pelvic floor therapy, teas, chai seeds… you name it I tried it.

4 months ago, I was given a calprotectin test and told they would contact me if anything was wrong.

3 months ago I finally got to speak to my gastroenterologist. No, it wasn’t lost on me that my GI nurse told me constipation was a normal symptom of ulcerative colitis and that with normal calprotectin levels there was not much they could do. It was not lost on me that the one person who was – by title – supposed to care about my bowels no matter what was wrong with it was really tunnel visioned on active ulcerative colitis. But that phone call allowed me to explain what was happening. That I could go days without having a bowel movement. That the Envytvio infusions weren’t impacting that problem in any way. That my belly hurt constantly. That it felt like when poop reached the top of my descending colon (yes I am now well versed with the compartments of my intestinal tract) it felt blocked. That if poop made its way to my rectum there was nothing I could do to poop it out. Three months ago I bought a squatty potty which really helped push out gas. Three months ago, I was told by my GI to take one dose of Restoralax and one 145mg dose of Constella once a day.

2.5 months ago I was desperate. I was fading. I was in pain and exhausted all the time. I called my GI in a panic and said I needed more relief.

2 months ago, my GI called me back with a solution. A bomb. He said to basically double the Restoralax and double the constella. Fighting ‘constipation’ with a bomb means that 20 min after taking the double dose of constella my bowels are liquified into molten lava diarrhea. I would wake up constipated, take the pill by mid morning, and be empty and spasming by afternoon. Following the bomb, everything would plug up again. I did this once a day for three weeks and then called mercy. I couldn’t do it anymore. I gave myself a two day break and went to see my osteopath. Call it the magic touch but she was able to discern that I had no motility in my caecum. It wasn’t that I was constipated (ie. filling up with poop with no interferences) it was that my poop wasn’t moving into the large intestine. The call it a lazy bowel. After a 40min massage along the pelvic wall lining the caecum she motivated some momentum back into the large intestine. I went home and had a poop. She gave me some tips on how to emulate the same massage she just did, but with not being able to feel what I was supposed to feel, I explored the use of a TENS machine. For 40 minutes a day I applied one node above my caecum and one node on my descending colon (and paralleled that with nodes on the back side). I used the massage function and motivated some movement back into the colon. After about a week I was finding that things were moving along.

1 month ago, I discovered that while I was able to maintain some movement into the large intestine, I was unable to poop anything out. I talked to my GI again. I cried mercy. By the time I talked to him, I was using enemas every 3 days with the occasional suppository when needed. Every 3 days I would have to manually empty my bowels because I had no rectum power to push poop out. No amount of fibre or electrolytes or massage or pelvic floor therapy, or squatty potty has been able to help. I can’t poop. I eat for days, my belly gets distended, and then it pushes against my rectum until I’m forced to use an enema. I told my doctor this on the phone. I said the words ‘I cannot do this anymore’. One month ago my GI took me seriously and promised me we would leave no stone unturned. We did a colonoscopy which luckily showed no active ulcerative colitis. He has booked me a CT of the abdomen, a motility test (whereby I consume metal balls and wait for them to come out) and a defecography (whereby someone x-rays me while I try to poop). He suspects at this point there may be a bulge in the anus. One month ago I felt like there was hope.

3 days ago I took my last enema. 3 days ago I felt empty and energized again. 3 days ago the poop starting filling up.

I cannot poop.

The Chair Technique

I was able to hold it together for so long, with the endometriosis pain running my life, and the new diagnosis of an immune disease changing my life forever. I could hold it together while I was alone in Vancouver, but then I moved. I moved a day late because of a pancreatitis flare that held me up in Vancouver for an extra day in the hospital, but I managed – with the seamless help of my mother – to get all of my belongings into some duffle bags and onto the plane. I had a hard time settling in at first, but I was excited for a new chapter in my life: back in Ottawa, living with my boyfriend.

The settling in part was easy enough to do in the condo, but I wasnt settling in with my new bill of ‘health’. We were two entities struggling to survive in the same body and I just felt emotionally and mentally unwell all the time. So I decided to seek therapy. Just a sounding board for those times when I feel real deep emotions that would scare my family if I uttered them out loud. Just for those times when I wanted to say ‘this fucking sucks’ without being a wet blanket to those around me.

The first session was really hard. The therapist was so sweet and understanding. She did a lot of active listening which I was attuned to from my days of counceling, and while I knew what her ‘tricks’ were, I fell into them because I just needed to talk. I went through a lot of kleenex that day. Before the session ended she suggested that next week we do the chair exercise. I was apprehensive but eager.

As I walked into the office that next week I noticed there was a chair facing the couch that I sit on. The chair was not for the therapist. She let me get comfortable, asked me how I was feeling and then said: “Ok, so I want you to sit there, as you are. Imagine your illness(es) are sitting in the chair in front of you” – wow. I think I started crying right then and there. What a powerful image. She continued “If you could say anything to your illnesses what would you say?”.

“Why are you here?”

“I’m so tired, I just need you to give me a damn break”

“I don’t know how to live with you. I just need some space. I need to feel my body as it used to be without you taking over every inch of it”.

As the moments progressed I got deeper and deeper with my emotions. I got real. I got angry and sad, and every other emotional color of the rainbow. I was exhausted by the end of it. But it wasn’t over. “Now, I want you to physically get up and sit in the other chair”. I did.

She continued with a slow calm voice. “I want you to pretend you are now your illness”. What would you say to YOU?” (**crying as I’m typing here, sorry. This brings up so many emotions).

“It’s not my fault.”

“I’m trying to co-exist with you.”

“I didn’t choose you either but here we are.”

Hearing those compassionate words come out of my mouth, role playing as what I always refer to as the teenager endometriosis and the toddler brother ulcerative colitis I was all of a sudden out of words. I felt sorrow. Sorrow for the diseases that are trying to just ‘be’. How could I feel so deeply for something I – just a few moments ago – loathed completely?

She let me sit there, swallowing all of my words. Digesting the emotions and making them real. She finally said “next time when you look into the mirror, imagine that both of you are in there, co-existing in the same body. Look at yourself with admiration, not anger. Look at yourself as a new you, with entities that need to love one another, not hate one another.”

I took that with me, and still to this day try to remind myself of the chair technique. I wanted to share this with you as its not something only a psychiatrist can perform. You can do this too. Be aware of your words and the emotions. be aware of the way your body changes shape after you’ve finished the conversation. And then, remind yourself that your body is something to love, not loath.

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.


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.


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 😦

One week off Visanne – things are looking up!

Two weeks off Visanne. I feel human again!!!

















So now I wait…

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Leaning on your spoonie support system

Talking through endometriosis, ulcerative colitis, hysterectomies and more

Rachel Egan, I am so delighted to be interviewing you today as I think your story, while complicated, will resonate as a whole – or in parts – to a lot of people. To give people a background, I was admitted to the Vancouver General Hospital almost exactly a year ago with what I thought was the flu. 3 days in, the gastroenterologist dropped a bomb on me that I had severe ulcerative colitis and treatment would be discussed shortly, as well as pain management and next steps. In a flurry of emotions I reached out to the one health-related facebook group I was part of – the BC Endometriosis facebook group – and cried for help. “Does anyone here also have ulcerative colitis? I just got diagnosed and I need advice”. Rachel DM’ed me and introduced herself as having both diseases – endometriosis and ulcerative colitis. She calmly asked me what the doctors had told me already, which was that they would be putting me on asacol, prednisone and keeping me for a few more days to make sure the medication was a good fit. From there Rachel began telling me her story, provided me with the best perspective – a patient perspective – and became my voice when I was losing my own.

Rachel, thank you so much for allowing me to share your story with others. First off, many women with endometriosis are always curious how I was diagnosed with UC because we all share so many bowel symptoms. I think sharing your diagnosis would help others. Do you remember how you were diagnosed?

I’ve been sick most of my life.  I struggled with depression as a teen due to feeling sick and achy all the time.  I was stuck in a bad cycle of trying to get my doctor to take me seriously and it being told: “You’re an anxious person, of course you feel sick all the time.”  Fast forward to being a mom of a 3 year old toddler who needed surgery. The stress hit me like a tonne of bricks even though the doctor told me it’s usually harder on the mom than the child having the surgery.  The stress caused the colitis to flare up with continuous blood for a months. My GP at the time said, “Oops, I think we missed something”. I cried. FINALLY he admitted it wasn’t all in my head! It took 3 long months, but we finally figured out that it was UC.  I remember my first colonoscopy in its entirety. Prior to my scope, I researched what UC would look like on the camera. I remember watching the camera on a huge tv screen and right away saying, “Fuck…that’s not a healthy colon is it?”. Again the wave of relief that came over me.  Something had been wrong all those years! I finally had an answer!!

Its funny how we remember all the little details of a diagnosis because it’s so validating. Unlike myself you were diagnosed with Ulcerative colitis first. What medications did they put you on?

I was first put on mezavant and salofalk suppositories for 9 years; on and off entocort and prednisone the last few years.  Mezavant was working really well with no side effects but after a somewhat predicted flare from a surgery and the stress of quitting smoking, the doctors closely monitored me with the addition of Imuran and salofalk enima’s.

And what are you taking now for the UC?

I’m currently on 8 oral Salofalk pills, 3 oral imuran pill, with salofalk suppositories and enimas as needed. Thankfully I experience minimal side effects from all the drugs with the worst being nausea post imuran pill.  This was easily remedied with taking a dose at night and sleeping through the nausea.

And then all of a sudden you found out you had endometriosis. Do you remember how that went?

I had such extreme periods my whole life, and it had gotten to the point where I couldn’t even stand up straight without being in intense pain. My left ovary had shown a large cyst in a scan, and with me pushing for a hysterectomy (I was anemic due to blood loss from periods and UC), my gynecologist agreed that an exploratory surgery would be a good idea.  We had agreed that removal of my uterus would be a good idea to combat anemia and would try and keep both ovaries. Unfortunately my left ovary was mangled from the cyst and it had to be removed. I remember waking up from the surgery, hoping that a diagnosis of endometriosis was going to happen, hoping that it wasn’t all in my head again! I had such a huge wave of relief when my doctor spoke to me about the deposits she found and she tried her best detaching my bladder from my cervix!  Unfortunately she was only able to deal with what was at the belly button and down so we weren’t able to eliminate the pain above it.

One thing we talked about while I was still in the hospital was learning how to discern between the diaphragmatic endo pain and the colon pain. After a year I can probably describe the two but it’s still tough. What about you?

I was looking forward to a hysterectomy because maybe I would finally be able to tell the difference between the two diseases.  Some things I observed was that the endo and scar tissue created a bad ripping and tearing sensation in the abdomen, sharp lightning bolts and hot pains, and dull chronic pelvic floor pain. With endo you can feel tired but have some energy because you can still eat.  With UC, when it is bad, the body is weak and intestines are spazztic. The body just can’t absorb anything nutritional from food so one just becomes weaker. But what they share is ‘keel over below the belly button cramping’.

I know I find it hard not being able to take NSAIDS. The one thing that has always given me some relief from endo pain – especially the diaphragmatic pain – is Naproxen. But I can’t take it anymore because of the UC. What about you?

Pain relief is difficult for me as well. I cannot take NSAIDS either due to UC, and I have to limit acetaminophen because of the impact it has on my liver (due to being on imuran).  This leaves me in the world of narcotics, which really means I suck it up until i’m in tears. Fear of narcotic dependency always looms over my head so I avoid taking it at all costs.     

There are so many things we have to be careful of when dealing with both diseases. I was in so much pain post endo surgery #2 and was in the ER seeking relief. They were really hesitant to give me narcotics as i had previously been in that emerge numerous times for pain relief, so they gave me some sort of anti-inflammatory.  I reluctantly took it as I was desperate for relief. I ended up with what we thought was a bladder infection a few days later and needed antibiotics as well. That antibiotic is now on my allergy list because it caused such a bad reaction. The combination of NSAID’s and antibiotics put me into a full blown UC flare. My entire colon was inflamed.  It was horrible, and I was bedridden for months. I will never take a medication to ‘please’ a doctor ever again. I should trust my gut instinct and know that I know my body better than an ER doctor does.

Let’s talk about the hysterectomy for a second. More and more women of all ages are having hysterectomies as a therapy for endometriosis. My specialists have never mentioned this as an option, and it’s a big decision. How did you get there with your doctor?

I was anemic from the UC, and my periods were so painful and heavy (2-3 days of going through heavy flow tampons every 20-40min). I physically couldn’t handle a period anymore. I was so blessed to have a child, but my body was done and it was easy to rationalize with my gynecologist that it was in my best interest.  So this was part one of my hysterectomy, removal of the uterus and left ovary. Part two happened 2 years later after my local Gynecologist said he wasn’t skilled enough to do my surgery due to it’s impact on my bladder. I started going to BC women’s hospital where I was on Visanne for 1 year. This worked well for a year, and then gradually quit.  I was unable to stand up straight again, I had to use a scooter to do groceries. My quality of life was poor again so we decided to give Lupron a try before removing the last ovary. It was a horrible experience being on Lupron (still dealing with the side effects today), but it did show that my pain settled a bit with hormone suppression. This was enough to convince my surgeon that it was a good idea to remove it.   So surgery 2 happened. My right ovary was dug out from my abdominal wall (it took them awhile to find it) and they removed endometrial deposits from my pelvic floor and bladder, and all the way up to my diaphragm.

The past couple years I tried to immerse myself in yoga and meditation, but even gentle motions like yoga was causing tremendous amount of pain.  This may be because the excision surgery and massive UC flare put me on bedrest for a few months. The lack of mobility was the perfect storm for adhesions to form possibly fusing organs together again.  I’ve tried pelvic floor therapy, which did help with some of the lower pelvic floor pain, but the sharp stabbing/tearing pains remain.

It was so brave of you to have a hysterectomy at such a young age. Are you free of endometriosis now, or are you still haunted with pain and symptoms?

It’s a daily struggle for me.  I’ve recently had confirmation that UC is in remission!!  Yaaaay!! But i’m in a lot of pain from my bladder/kidneys/diaphragm.  The pain has taken me to the hospital a number of times. We first thought it was bladder infections and kidney stones. My cultures always come back negative, and scans show no stones.  Just crazy flank pain attacks with a huge loss of blood and protein. My family has helped me advocate for answers and we’ve been able to eliminate everything regarding the bladder and Ureters thanks to a recent hospital stay in a big city hospital .  

We’ve been able to eliminate endometriosis inside the bladder and ureters.  We are now waiting on a second consultation with a kidney specialist. The ideas swimming around right now as to what It could be are a rare kidney disorder, endometriosis on the outside of my bladder, ureters, kidneys, and large intestine or something called loin pain hematuria syndrome.   Currently the hardest part is not knowing what’s wrong. I’d like to know if what’s happening is going to destroy my kidneys, or if it’s just something that we’ll have to manage the pain for.

In the meantime, how do you cope with the endo pain?

Honestly, i’ve embraced the 80 year old Rachel and live life slowly and carefully.   I draw in help and support from my amazing family. I’m really blessed to be so close and have them fight the good fight alongside me.  I’ve had to swallow my ego, and learn that help has to come from lots of people and not just one. It really does take a village, and i’m super blessed to have the help and support to keep things slow and low for myself.    

What about the UC? How do you manage to keep it under control?

I take my medications as directed, adding the extras when I seem to start flaring.  I’ve been through a few GI dr’s due to them relocating, and my newest doctor and nurse were able to help me understand the importance of enimas.  If ¾ of your large intestine is flared, and you’re only slightly healing from oral medications, suppositories aren’t enough to reach the other 1/4 of your intestine. I was in a cycle of continuous flares due to only using oral and suppositories.  Enimas along with imuran were able to get things back on track. As icky as people find Enimas, USE them! They work!

One of the main reasons I keep reaching out to you is because when I am down, you always lift me up. I have not moved across the country and we still have never met in person but I depend on you. I don’t know how you stay so positive, and I will continue to love you for that. But if I could ask you to give one piece of advice to others out there with chronic illness, what would it be?

When times are hard, reach out to other and do things that make you feel good inside. Don’t save your energy for all the “have to’s”, use that energy for self care.  Visit friends and family, go for a walk or swim, and don’t give into the internal self critic of ‘you should be doing this or that instead’. Take every single person’s offering of help that comes your way.  One way that people help me if they don’t live close, is a simple text a few times a week, checking in to see how i’m doing is awesome. It gives me the opportunity to check in with myself and see if i’m struggling emotionally or not.   If you’re not strong enough to find the words to communicate with a dr, ask a friend or family member to join you on appointments. If your ‘helper’ knows what’s happening to you and your body, they can offer support and ideas to the dr or help you remember what you really wanted out of the appointment.  

There are very few people who truly understand what it’s like to go from dr to dr to dr and all of them struggling to find answers. I’m so grateful to have you, Anusha, in my life!  You help make it a less lonely place to be. You’re not only empathetic and understanding, but you can make a girl laugh when shit gets real scary!

Hopefully all my readers have found a little bit of clarity through this interview. Please leave us any questions or comments as both Rachel and I are here and eager to help others.

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).

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.


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.



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.


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

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 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


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!).


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.

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?