Category: Ulcerative Colitis Journey

What ‘fighting for care’ really means

It has been a day. I mean it has really been a mind-boggling day. It started early this morning as my alarm clock went off and my body was in so much pain. More precisely, my lower back was broken and I was not going to be able to manage without my cane. As usual I set the heating pad on medium and laid flat on it for 10min before crawling desperately out of bed. I showered, praised the lord I didn’t have to wash my hair, made my coffee and then settled into work. Yes I work from home and this particular day I was able to to work from my couch.

At 9:30am my rheumatologist called to go over my symptoms as one theory is the entyvio/vedolizumab is causing the back pain. While there is one publication indicating as much, these patients had progressive arthritis which I seemingly do not have. Needless to say we kinda parted ways at this point. Before hanging up I let them know about my MRI of the lower back – ordered by a doctor out in Toronto who thinks I might have a compression – and she asked me about what else is going on with my health. We talked about the neuropathy symptoms and the MRI of the brain which ruled out MS. She said ‘it looks like a doctor referred you to a neurologist specifically to rule out MS and it has been, so you don’t have a queued consult anymore”. Reasonably so, I went into a tailspin because that was the one appointment I had been holding out for.

I immediately got on the phone with my GP and left a message about this supposed canceled (or completed) consult and that without a new neuropathy-specific referral we would never get to the bottom of this. My GP and I are generally on the same page about this so I was not worried he would push back.

While I was trying not to get heated, I was hammering away at work, listening to a patient story about ordering one of Invitae’s genetic tests and she said “genetics doesn’t have to be used as confirmatory it can also be used as exploratory”. Here I was, working nearly three years for one of the best diagnostic genetics companies in the WORLD, and I had not looked to see what I could utilize. I got online to Invitae.com and downloaded the requisition form for the Alnylam hTTR no-charge sponsor program which I felt was finally time to order. I emailed it to my GP and offered to do the leg work if he wouldn’t mind submitting it for me.

Hours later, anticipating my period and pushing back some oncoming muscle twitches, I decided to use one last tool in my box. I decided to text (yes this is his preferred method of contact) the doctor in Toronto who ordered me the last MRI (which is on Sunday!!!). I asked if it was possible to see a neurologist. Immediately he said YES. But what I had not realized was, he thought I was asking to see HIM. Sadly, with the pandemic and not being able to tolerate long car rides, I asked if he could refer me to a local neurologist. He said “it would take 1-3 years”, and that was that. Nearing the late afternoon I chalked the day up as a whirlwind and was hoping I’d have a callback or an email in my inbox by the morning.

Logging on to another work session, the hospital called me again. This time it wasn’t the automated appointment reminder and it wasn’t the rheumatologist. ‘Hi Ms Gandhi’ she began, “I am so sorry but we had to cancel your appointment for Feb 24th but Dr. M would like to instead see you over zoom on Jan 20th instead. I know it’s last minute”. … “That’s fine I,… sorry… what doctor is this for? I mean… what type of doctor?”. Confused was putting it lightly. “Oh this is for your neurologist”.

“I don’t have a neurologist” I said politely.

“Oh, sorry I missed that this is your first appointment with him. Is it still ok?”

Shocked and elated I of course said yes, got on my patient portal to confirm and sat in shock for about 10min. I called my GP back and spoke to a human (my favourite lovely human who always helps me out) and told her (the admin) what had happened. We agreed to put the genetic test and the pain meds on hold until we had some data to go on.

What a day.

by Categories: endometriosis journey, Neurology, Ulcerative Colitis Journey Leave a comment

The Shittery -volume 1

I haven’t written a post in so long, and honestly, I was afraid that with everything going on I would just be a wet blanket. The fact is I was going in circles trying to figure out how my gut health – something I have worked so hard on – could all go down the tubes after an excision surgery. And now, 11 months later, I’m more confused than I ever was because of the last three days. But let me back up.

In October of 2020 I had a 6 hour laparoscopic surgery to remove endometriosis and adhesions from the span of my ovaries to my lungs. Luckily the endometrial growth was minimal but extensive work was done on my bowels and left ovary to remove them both from the abdominal wall by way of adhesions. Within a day of my recovery I could feel the difference; the way I was able to expand my lungs, the way I could move and twist, the way I had more energy than before. I used very few hydromorphone pills and was able to walk and move around to the best of my abilities. The only hiccup I had was a fussy nerve along the side of my pelvic wall which we fixed with a nerve block. The goal from this point onward was to switch me off of Gabapentin (which I was on after my 2018 surgery for central sensitization) and try me on amitriptyline which my doctor has seen better results with. As for endometriosis and pain, I was to continue on birth control (oral contraceptive of combination hormone) on a continuous basis so to skip my periods, reduce the pain and potentially limit the estrogen that fuels the (re)growth of endometriosis. You can pause on that one if you’d like. I did.

About 4-5 weeks after my surgery, while still recovering slowly at home, I noticed I was having difficulty with bowel movements. Not only were things not moving well, but I wasn’t able to push anything out. So began the whirlwind trial and error of laxatives, stool softeners, fibre, enemas and suppositories. My GI reluctantly gave in to my request for more tests and much to my dismay everything kept showing up normal. On the contrary my symptoms were getting worse AND I was starting to have reduced mobility because of the laxatives. Around the 5 month mark I threw my hands in the air and stopped everything. I turned to my osteopath and my naturopath after realizing that both my GI and my endo specialist were not able to help (or… not optimistic in finding a solution). I have to give my surgeon credit, he took me off the amitriptyline because of its constipating effects and was more than happy to learn about SIBO (see next paragraph).

For those who are naysayers on the natural therapies you can skip this part but basically my osteopath could conclude I had a lazy bowel and my naturopath was able to conclude with a gold standard breath test that I did in fact have SIBO.

For those of you who prefer the more medical flavor, I had a defecography which showed ‘stasis {was} severe’ and a 1.3cm rectocele (a hernia that protrudes from the rectum into the vagina). Yay me! But none of this, in conjunction with some blood work was anything to cause alarm. I proceeded with the natural path so that I felt like I was doing something.

SIBO treatment is still ongoing at this point BUT in phase one – opening the biofilms – my flatulence decreased significantly after 5 weeks. Into the second phase – eradication of the bad bacteria – I started to regain complete mobility. COMPLETE MOBILITY! That was worth celebrating!! But I did not regain the ability to literally poop. So, I started taking a suppository every day and this was enough to poop out the most glorious poop. Once a day. Regular. Nicely shaped and sized. I mean this was something worth sharing LOL. Anyways… now we come full circle. See, aside from all the changes that were made to my body after the surgery the one thing that remained consistent was… the birth control pill. I don’t want to lose you here because at this point I am perplexed and fairly confident I will never know the right answer to any of this but …

A few days ago, around the 11 month mark of all this fecal chaos, I talked to my naturopath again about the PMS, boob swelling, cravings, and discharge – what feels like a period – minus the bleeding. She said sometimes the body’s own estrogen levels can combat the effects of the birth control pill. That same day I felt like I was bleeding but I wasn’t. I did what any insane person would do; I stopped the pill to just allow myself to have a period once and for all. That same day, I had the urge to poop and I was able to poop: 2 things I have not experienced in ELEVEL MONTHS!!!! What did I do? I texted my mom, my sister, my fiance…. I danced. The next day and the next day? same thing. Urgency and poop.

Is it the prostaglandins? Is it the naturally constipating effects of the pill? Is it the certain levels of hormone that are being maintained with the pill? I found this quote today which kinda sums it all up:

Studies have shown that oral contraceptives negatively impact gut flora, and estrogen metabolism. This can lead to weight loss resistance, increased risk of irritable bowel syndrome, depression and anxiety, and unresolved digestive issues.

Nutrition Rewired

In the end, this is an n of 3 days, and I have shifty data points to base all of this on. But all that to say, I thought back to why I was on birth control in the first place. Yes, of course to minimize the pain (dysmenorrhea) from my periods; no not as a method of birth control; but mostly because of the theory that it could prevent new or existing growth of endometrial lesions. I posted the question on social media today and there was a resounding NO IT DOESN’T PREVENT ENDO BECAUSE:

  • The theory only works on the retrograde menstruation theory.
  • Endometriosis fuels itself by producing its own estrogen.
  • Many individuals on birth control had growth of lesions between surgeries.
  • Menopausal and post menopausal individuals who inherently have lower estrogen levels maintain their existing endometriosis and may produce a new form of endometriosis by way of hormone replacement therapy (HRT).

Complicated, right? Well I have one more week until I speak with my gynaecologist but Im thinking this might be an excuse to do my own little case study off the pill (I’m secretly jumping for joy right now).

Thanks for tuning in to my shittery:)

by Categories: endometriosis journey, Ulcerative Colitis JourneyTags: , , , , , , , Leave a comment

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.

by Categories: Ulcerative Colitis JourneyTags: , , , , , , , , Leave a comment

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.

by Categories: endometriosis journey, Ulcerative Colitis JourneyTags: , , , , , , Leave a comment

Cannabis for chronic pelvic pain

I wanted to do a post about medical marijuana as I think this is such an important topic. The legalization of these products has opened the eyes of individuals who would not normally smoke a joint – let’s say – to explore the effects of cannabis on pain, as these products are becoming more accepted and easier to obtain. Likewise, those skilled users are sharing their experiences more and more on social media. I am not one of those people. In fact the thought of smoking a joint doesn’t jive with me and never has. The handful of times I’ve smoked a joint in my life I’ve laughed my head off, been paranoid about leaving my house, and have consumed more chocolate than I thought possible. Each time I have woken up in the morning feeling rough. But I got to a point recently where it was either opioids or nothing.

Our cannabis journey began nearly two years ago when Greg was talking to his cousin about having trouble staying asleep. She told us her husband found tinctures at an Indian reserve down the street that he now relies on for good sleep. We went there on the way home and picked up two bottles; one labeled ‘sleep’ (mostly comprised of THC) and one labeled ‘pain’ (mostly CBD). Gotta say, we stopped taking them after a while because we ended up titrating 5 drops worth and still felt nothing. No high, no sleep inducement, nothing. And that’s when it ended.

And then – two years later – I got to a point in my health journey where NOTHING was helping my pain. Morphine makes my pain worse, hydromorphone mostly only works in injection form, I am limited to NSAIDS due to ulcerative colitis, and nothing else even touches it. Tramadol became my go to, and then I decided I really didn’t want my go-to to be an addictive opioid (a drug chemically formulated in a lab and resembles that of codeine). That’s when I decided it was time to pick this ol’ cannabis thing back up again.

I have a few really good friends in the industry who were able to give me the push I needed to get started. And the scientist in me made sure I was doing this in a fairly comparative and repeatable way. With that I made some notes of what the goal was:

  • I needed something that would take away my pain in those moments where I would normally reach for tramadol
  • I needed something that would not make me too high as anxiety and insomnia are not in the cards
  • I needed something that wouldn’t hinder me during the work hours. That meant if I needed to take something for pain during the day (like I do with Naproxen) it cannot make me high, cloudy or stupid. Likewise if I take something at night, it cannot carry through to the morning when I need to work.

Phase 1: Research

My research told me that there were two things I needed to be aware of: 1) the CBD and THC content, as well as 2) the strain (Indica vs Sativa). Studies were showing that those with pain experienced psychoactive and pain alleviating effects from THC, but high pain alleviating affects with CBD (and only a slight high). Anecdotal evidence was also stating that indica was a more calming strain that helped with sleep, whereas sativa tended to bring about more active highs. So with that in mind I decided to start with Indica and low doses of THC and CBD.

Phase 2: Medium THC, Indica

Edibles (2.5mg THC, 0mg CBD: I started with something tasty and low dose: a peppermint chocolate with a total of 10mg THC from the Indica strain. Each square contained 2.5mg of THC. I ate the chocolate before bed, and within 45min I could start to feel … loosy goosy, a bit tingly but mostly zen, and tired. If I managed to get myself into a sleep position within those 45min I learned it would put me into a deep slumber – one that made me feel very rested in the morning! I will say, this was the best sleep of my life. I was asked “does it put you in such a deep sleep you wont wake up to someone screaming” and my answer is it is no different than regular sleep but it provides you with more instances of deep sleep. Your sleep style however, doesn’t all of a sudden go from light sleeper to ‘nothing wakes you up’ sleeper. It’s still you in there 🙂 Evidence of deep sleep and more REM sleep was noted on a fit bit which correlated perfectly to the quality of sleep felt in the morning. And then just my luck, the store I was buying from discontinued the THC Indica chocolates. This scared me a bit but it provided the perfect opportunity to move on.

Keeping with the same theme, I decided to do a gummy with the same dose and strain of THC. 2.5mg per gummy, 45min before bed. However, it provided a buzz within 15min, very similar in nature but a bit stronger than the peppermint chocolate. It was promising BUT one big component to developing a good product is reliability and repeatability. This product unfortunately flopped on me the second and third and fourth time around. The tingly buzz varied each time, always affecting me around 15min in, but did nothing for my sleep. I don’t have a reason for this, but I wasn’t really needing or wanting to try it again.

Phase 3: Medium CBD, Indica

Topicals and Edibles (12.5mg CBD, 0.2mg THC): So let’s parallel this with the CBD. On the first round of purchases I bought a topical CBD cream. Social media goes wild for CBD topicals and creams for the purpose of pelvic pain. As healing pains started to emerge post-operatively, I decided to buy a legal CBD cream. I didn’t know what I was supposed to feel, but I didn’t think I was feeling anything. I’ve tried it several times since I have purchased it and I find my mind wanting it to work but physically there are no real signs that it is doing anything for me. I was frustrated to say the least, as this journey began for the purposed of pain relief. I decided, along with the THC gummies, I would buy some high dose CBD gummies to up the anti a bit. We are talking 50mg (or rather 12.5mg CBD per gummy), which did a whole lot of nothing. I have never felt it, and I don’t know that I ever will.

At this point, I was able to feel zero with the topical and edible CBD products, I got a good reliable buzz and tremendous sleep on the 2.5mg THC Indica chocolate which they discontinued, and I got a higher but unreliable – mediocre sleep – result from the 2.5mg THC Indica gummy. Where do you go from here?

Phase 4: Blend

Edible (2.5mg THC): I was a bit stuck by this point, so I took a gamble and bought a 2.5mg THC blend dark chocolate. The blends freaked me out a bit because all I could picture was my naked self running around the house in a stupor. But at this point, I was in safe hands, in the comfort of my own home AND I kept reminding myself this is safer than morphine. The dark chocolate was very yummy (and on sale I might add) with a good buzz and a good sleep but not quite as good as the Indica. You could just tell in the morning you didn’t get all the good deep sleep and REM sleep as with the Indica pure. So where do you go from here? You call a friend.

Phase 5: CBD drops and disposable vapes

Phase 5 is something a bit more courageous and I didn’t think I would get here, but here we are. I called a friend to ask what I do next. She proposed that I try CBD drops that melt under the tongue. Sure, safe enough and easy to do. They reminded me of the tincture I used two years ago with little to no effect but I was willing to try something a bit more vetted this time. As for THC I was stuck without the product I liked so I asked her how I obtain THC Indica – not by edibles but not by smoking – so that I have something I can trust. She recommended trying a vape. Oh god a vape. I didn’t want to be one of those cool kids. But the one she showed me was this discrete little pen-like tool that comes ready to use, has ~50 pulls you can take from it, and you can control how much you want or need. I did some comparisons and went with a strain called Pink Kush. Mostly because of the name, and because it had a good concentration of THC; a good bang for my buck. This little hand held device is very sleek, very discrete and even easy enough for the likes of this green lady to use.

Disposable vape (THC, Indica): One night, as I could feel pain encroaching, I took out the pen and asked Greg if he could ‘see’ anything while I was pulling. All of a sudden I felt it give, and a light lit up at the opposite end. The little battery on the end was being charged (or warmed up) by my pulling. I didn’t feel anything or see smoke when I exhaled but I did the second time around. I did two pulls that night and almost within 10min I felt buzzed. This truly was like smoking it. There was no denying I had just smoked some weed LOL. But I did love the control it provided. I deemed to only use this for those nights I would have reached for a tramadol or a hydromorphone. Ultimately though, with it being the strain I like, and being more comfortable with it, I had ended up using it more often than I expected and I really like it. But there are some things you really need to be aware of here. Cannabis and Tramadol CANNOT MIX! They are lethal. So you have to make a decision which one you are going to take. I accidentally (yes I am admitting it), took both and felt like my heart was going to explore. I was sweating and anxious and this did not subside for hours!!! Secondly, the more consistently I was using it, the more I was feeling residual effects in the morning AND it was starting to affect my moods. It took me a few days to realize that the vape was actually making me depressed in a subtle but substantial way. While I didn’t expect this, it was reasonable to accept that it too would have unwanted side effects. I reserve this product for the really tough times, and for weekend nights when I know I am going to get those extra hours of sleep.

CBD drops (25-50ml, Indica): Next – not the same night – I tried the CBD drops. I took 25ml (I think) from the dropper and put it under my tongue to let it dissolve. It’s hard to explain this one. So I asked around to several different people to find out what CBD should feel like. And mostly people described it as loosening or releasing. Just a bit of tension release. Yup, that’s exactly what it feels like. There is no high, and there are no real ‘things’ that happen other than roughly 30min in you feel just a bit better. The tension around where the pain was is just a little less noticeable. I asked people why they take THC with it, and I can attest to the fact that the THC buzz is just de-stressing. So combining the less tension with the buzz makes for a pleasant and long sleep. Again, this is if you are using the right strain. I have NOT tried CBD with THC from the Sativa strain so I cannot comment on that. Mostly because I want to use this product in the evenings and weekend, and absolutely NOT when Im working. I don’t need something to keep me awake if it’s mixed with an active high.

Phase 6: THC Sativa

Edibles (2.5mg THC, 0mg CBD): To round out my little experiment we ‘accidentally’ purchased the peppermint 2.5mg Sativa chocolates as I misread and thought they were Indica. Nevertheless I wanted to keep them for a rainy day. One day, on a Saturday, feeling bloated and in pain, I decided to take one of the chocolates. BAHAHAH ok this was fun, to say the least. It gave me a great high, a fun high, and I could have cleaned the whole house at that point. I have tried taking it before bed and since it is calming still (though your mind is racing your body feels calm) it isn’t the greatest for sleep. If you happen to wake up in the middle of the night you won’t really be able to fall back asleep because of your mind. Maybe that’s just me. As for the pain, I think I was just distracted which was fine.

Literature:

OK nerd alert, here comes the scientific discoveries.

One article looked at the use of medical marijuana for the use of diminishing pain in patients with fibromyalgia. People with fibromyalgia have several types of pain so this was interesting to learn about.

As for cannabis, its major cannabinoid is Tetrahydrocannabinol (THC)…that produces a variety of effects including altered cognition and motor function, analgesia, and psychotropic effects (eg. drug high). Another key component of cannabis is cannabidiol (CBD) that, while nonintoxicating, does affect mood and cognition.”

This study concluded that overall, the pain threshold for these patients was heightened by the strains with high THC content. Conversely, the CBD content had no such effect on these patients which is counter to what I’ve heard and read. Of course, logically I wanted to find a study using cannabis for chronic pain in pelvic pain disorders such as endometriosis. Sadly, the one study I found was utter shit, starting with their definition of endometriosis (*eye roll*).

The best study I found was very informative. In an assessment of cannabis use, selection methods and results in those suffering from chronic pain, they compared men vs women, experienced vs novice users, and recreational users vs medical marijuana users. The findings showed that for the use of chronic pain, across the board users were selecting products with High THC;High CBD OR Low THC;High CBD. This tells you that for chronic pain the CBD component was most sought after (unlike what we read in the fibromyalgia study). And while both groups sought after CBD, it was only the recreational users who tended to also choose High THC whereas the novice users were comfortable with the low THC content. Those who had only used ‘medical marijuana’ chose to use vapes and edibles versus those who were used to using recreational marijuana and often chose smoking versus any other method.

The only conclusion I could draw from all of these finds is that we are inching our way towards products with evidence of medical benefits – ones that can scientifically be reliable and reproducible – so that even non-users have more tools in their toolbox for chronic pain. This is a cautionary tale as just like my experience with opioids is different from yours, so too will our experiences be with cannabis. Listen to your body, make sure you feel comfortable and safe, and try to get out of your comfort zone just enough to try some things you may benefit from. And most of all, please let me know if you have any questions.

❤ Crampmystyleblog

Resources:

Cannabis Use Preferences and Decision-making Among a Cross-sectional Cohort of Medical Cannabis Patients with Chronic Pain

An experimental randomized study on the analgesic effects of pharmaceutical-grade cannabis in chronic pain patients with fibromyalgia

Disease-modifying effects of natural Δ9-tetrahydrocannabinol in endometriosis-associated pain

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Our voices are much stronger when we shout together

Lately I have been able to channel my energy into my passion – an organization I am developing here in Ottawa, Canada – that allows me to put my advocacy into real action. While still in the early stages, the organization will turn into a pain center devoted to women with unresolved chronic pain, and will provide non-clinical means of mitigating pain in parallel to clinical treatments.  You can read more about it here at femade.ca (please be kind, it’s still early days!)

This is what gets me up in the morning, and what keeps me up at night. I am constantly doing research in medical journals to understand the gender-bias outcomes of pain treatment, and the gaps in medicine for diseases like fibromyalgia, a seemingly common disease. Having a science background and working in the healthcare field helps tremendously. And while the data is compelling, it’s not compassionate. So I decided, the best data I can acquire is through real people; real women suffering everyday.

Last month I revealed a pain survey and opened it up to women around the world to participate in sharing their pain journey. Within the first week I obtained 200 participants and the responses were both informative and emotional. New responses continue to flow in, and with every one it brings tears to my eyes. The message that I learned through all of this is that

our voices are much stronger when we shout together

Last week, I opened up a simple question on social media “When people ask you what the pain feels like, what do you say?”. 150 responses later, here are some of the ones that stood out (beware, some responses are graphic):

Endometriosis

  •  It’s like someone is taking a fork and scraping you from inside.
  • You know how you squeeze/wring water out of a sponge? It feels like someone is doing that to my abdomen…
  • Someone cutting my uterus out with a rusty spoon and no anaesthetic. All while holding my pelvis in a vice.

There’s a little man inside of me, and he’s angry. He wants to get out and he will stop at nothing to escape. Everyday he stabs and claws away, trying to dig himself out. But when Aunt Flow is nearing, and he can sense her presence from miles away, he calls his buddies and they use all of their strength clawing, scrapping, biting away.. they never succeed. But a week after Aunt Flo goes back to her castle, his buddies go back to their caves and he eases up a bit. But he never leaves, he never stops trying.
And don’t get me started on ovulation.. I say I feel as if I’m 10 mins away from giving birth to an elephant. And not a baby one either. A full grown elephant. The pressure in my butt and vageen, my LORD!

  • Tell them to grab their bottom lip and pull it over their head
  • Like your ovaries are being twisted and being attempted to be pulled out of your asshole

Fibromyalgia

Image may contain: one or more people and text

  • Try to imagine having bruises all over your body every single day.
  • Full on flu with body aches 24/7. Sensory issues that have made me curl into a ball, fingers in ears. Delayed responses due to brain fog.
  • it is like someone took my skin off, turned it inside out, beat it black and blue and then put it back on… the bruises are there, you just may not be able to see them…
  • Carrying 4 lead weights around 24/7 without ever being able to put them down or feel like you’ve been hit by a double-decker and bruised feeling/pain everywhere.
  • Like my muscles are being put through a meat grinder!

 I had a girlfriend who got the shingles. She said to me “I think I finally understand what you are going through, except mine will eventually stop and your pain is forever. It’s sad that even some of our best friends aren’t quite sure whether to believe us or not!

Chronic Pain (various illnesses)

  • Like someone took a baseball bat to the back of my head, then just for fun – shoved a lightning bolt through my skull. – Occipital Neuralgia
  • I tell people: let me light your leg on fire, the let me put a vice around your thighs and finally give me a cattle prod and shock you in the LB and tailbone – CRPS type II.
  • It feels like my body is at war with itself, like every part of my body is being crushed. Electrical sensations throughout my entire body and like my knees will give out any moment. –  Lupus
  • Jolts of electricity flowing through the limb while getting a 3rd degree burn after getting dosed in gasoline (think R2D2 when it got zapped crossed with any horror/ action movie where someone is going down in a ball of death inferno). Then, coat the limb in honey and lay it across an ant hill to let recover from the burn – complex regional pain syndrome (CRPS)
  • Imagine a pencil being bent to its extreme just before it breaks, now imagine that pencil is your ribs. Imagine the pain you’d feel – costochondritis
  • Imagine what it’d feel like to have your bones grinding together for the spine pain, and for the pain where the ligament meets bone I describe it as an intense stabbing pain. – Ankylosing Spondylitis

Have you ever rolled your ankle or stubbed your toe really hard and you see these white hot flashes in your eyes well that’s what my spine feels like all day long the second I get comfortable it happens again and then I get this tremendous jolt where I feel like electricity is screaming down my spine directly into my left leg the rest of the time that leg is stupid and does what it wants and parts of it you could stab with a fork and i won’t feel it at all. Also my anxiety feels like an elephant is sitting on my chest and i can’t breathe and then what is best described as a surge of feelings forcing my body to want to leap in every direction at once till it becomes so confused it stands completely still and prepares for impact. My spine is broken at T11 surgery is too risky and I had my coccyx removed because it was dislocating. I have terrible PTSD and anxiety from the car accidents that caused my life change and the chronic pain exacerbates it tremendously.

These stories are real, and there are many more out there like it. Each and every word above fuels my fire to make a change. Thank you to everyone who shared their stories with me. We will fight this fight together.

❤

 

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Divorce and Chronic Illness

During the last year I have battled with my health, and as a result have battled with loving myself. When I look in the mirror I see scars from surgeries, cellulite from poor lymphatic systems, bloated belly from something Ive eaten or just a mere buildup of poop. I see swelling and tension. I see the person I used to be with a few extra layers of stress. But part of what will make me a better Endowarrior, a better advocate for other endo warriors and ultimately a person who loves herself again, is addressing topics that Ive been harbouring for years. That buildup of stress is partly due to these psychological issues. So Im breaking them down, one by one.

***

When I was in highschool I met a boy, and he became my highschool sweetheart. Our naive child selves were blissfully in love for 8 years and then decided to get married. We held hands. We cuddled. We loved one another in every way. For 8 years we never argued (*red flag) and we came by very little stress. So when the stress hit, we didn’t know how to handle it. First, I wanted to start having babies. Lucky for him – and I say that because anyone who is married to a chef knows the chef is married to their work – we failed at getting pregnant for about a year before I went to the GP and got a referral to a fertility clinic. When the clinic asked for both of us to come in for examination I was ready, waiting in line. He, not so much. Taking time off work was the most challenging thing (in his mind) and he wasn’t all that interested in what the doctor had to say. But this was important to me, and reluctantly he came along. Results showed that he was perfectly fine to which he said ‘thank God its not on me”. Yeah,.. that happened. Let me just say it didn’t bode well with the doctor either. My results on the other hand showed a clear indication that I had endometriosis and thus an ablation surgery – the most robust surgery at the time – was to be scheduled for several months down the road.

In the meantime, my husband was accepted to be on Top Chef Canada – a reality TV series that took him away from home for 5 weeks, and delivered him back to me as a PTSD Zombie. In the past I was able to overlook his flaws, particularly those related to putting his work before me, drinking every night, and sometimes not even showing up until the wee hours of the morning. We were still young and I was able to keep making excuses for him. But once the PTSD kicked – a syndrome I read a lot about when someone is in a high intensity reality tv show like this, closed off from the world for an extended period of time, prided on winning – I was determined to get him help because it was only exacerbating these flaws. The drinking was endless. The working was like a drug. And his moods were manic. I was able to get him to see a doctor who evidently put him on a series of mood altering drugs; some of which helped and others made him an insomniac. That’s when he started coming home late, accompanied by another young lady. Unbeknownst to me, a large community of people were privy of this relationship and I was only speculating from the inside out. What fuelled my fire was my determination to have a child and start a family all the while he was galavanting around town with this other woman.

Over the course of 8 months, we struggled to find a balance of work-life and to gather tools to make us stronger as a couple – at least until the airing of the show and then perhaps the resolution of the show would give us peace. During March of 2012 the show started to air. My rockstar of a husband was kicking butt, and he was getting a bit more life into him. The anxiety and depression were still deep rooted, and I could support that as best I could, but we were challenged with having a baby which was increased by his absences yet again. A month before my surgery, and in the crux of the show airing, I woke up one morning and knew… I just knew I had had a miscarriage. In hindsight I could have, and perhaps should have, done a pregnancy test but in the depths of hollowness, that was much too logical. I felt empty. I felt lost. I felt, dehumanized. I was covered in bloody sheets. I called my husband, who didn’t seem to believe me, and didn’t rush home to be by my side. When all was said and done, he challenged me as to why I would lie about such a thing and was furious I hadn’t done a pregnancy test. This wasn’t the man I married. This Zombie – a hollow shell of the man I once loved – was challenging me on something my body knew to be true. If you have had a miscarriage, you know that immediate feeling of loss.

I was swallowed whole by the endeavour and honestly that was the straw that broke the camel’s back for me. There was only so much I could bounce back from – including the new revelation that this new girlfriend of his frequented our house during the week (late) nights when I was fast asleep and sometimes even slept over. While presumed, infidelity was not something I would tolerate but I could have worked through it if I was given the chance. Over a period of a month he continually refused to go to therapy; the last approach was when he said “You won’t want to go to therapy, you won’t want to hear what a bitch you are”. Again, I could have dealt with all of this, given the chance. But when the miscarriage was challenged I was left with nothing more to fight for.

Later that week when I insisted on accompanying him at the bar to keep tabs on his new relationship, and I drove us home late at night, he finally admitted that he didn’t want to have children. This to me was one less thing I now had to deal with. But the guilt set in. Here I was, scheduled to have a fairly invasive surgery for the purposes of fertility, and yet our journey to get pregnant had come to a permanent halt. What was I to do? I spoke to friends and family. I even spoke to my GP. It culminated into the idea that having three months – the estimated window of time I had to get pregnant following the ablation – of no period pain was worth the surgery altogether. My surgeon may have begged to differ but my body longed for a positive sensation after all of this.

During the surgery the surgeon found endometriosis on my ovaries (intrapelvic) and outside my uterus (extrapelvic) on my bladder and parts of my colon. These lesions were all cauterized with the exception of the those around the bladder as the surgeon didn’t feel comfortable in that area. I awoke from surgery struggling to comprehend how bad the endometriosis was. I wasn’t even aware endometriosis could infiltrate other organs. I thought it was purely a reproductive organ issue. I was struggling to comprehend how severe this had gotten and became immediately thankful that I had gone through with the surgery. Information back then was still truly lacking, and ablation was our best option, but with all I knew that day I was feeling accomplished.

My parents stayed with me for a few days, then my husband gleefully took over my care. I asked him why he was being so caring and he said, with a sheepish (and what I thought, selfish) voice “I like being needed”. But as the days went on and I began to gain mobility, needing him less meant things were going back to how they were before the surgery. He was at the surgery in body, but not in spirit, and nothing that I endured was impacting him whatsoever. It was only a matter of weeks before I packed my bags and left. There was nothing left to salvage. Maybe it was the endometriosis that gave me more clarity. Maybe it was the miscarriage. But I could no longer put myself responsible for his mood, his actions, his behaviours. I needed a fresh start, along with my clean uterus.

***

I moved away a few years later to a suburb of Los Angeles, taking my post-separation dog with me and started a new life. I admittedly still had a lot of endometriosis pain but it was primarily with my periods and I could mitigate the pain through Advil or basic low grade medications. Two years later Charlie (the dog) and I continued on our journey to Vancouver, residing back in Canada but still far away from my past life. It just so happened that when I wasn’t looking, I fell deeply madly in love again. My heart had had time to heal, and this man crept into my life when I least expected it. Only problem was he was in Ottawa; literally the other side of the country and where all my skeletons lay. Moving to Vancouver actually acted as some sort of a trigger for me, because two months in my body erupted with pain. I mean, earth shattering, overwhelming, everywhere pain. To this day I’m not sure how I got so lucky to be referred and accepted into BC Women’s so quickly but a specialist there was able to discern through therapy and pain pathways that over the course of 5 years the ablated endometriosis has continued to grow and spread all the way up to my diaphragm. A year later, living with this tremendously debilitating pain, I had surgery to excise (finally, to pluck everything out from the root) all of the endometriosis, but unfortunately the lesions on my diaphragm – while confirmed – were still in tact given the nature of their location. Only a thoracic surgeon can help navigate a surgery like that and it’s much more complicated. These are all things I learned after the surgery. 8 months later, I was rushed to the hospital and diagnosed with severe ulcerative colitis. I had no idea I even had it, but this episode brought it out of hiding and my life turned upside down.

My man at the hospital biding time while I heal.

From early 2017 to late 2018 my man traveled constantly to be by my side. Every surgery, every test, every missed holiday that kept me from flying home. He passed the baton back and forth with my parents. Eventually the stress of being in Vancouver alone, caring for a dog that ended up passing away before my move, it was time to be in closer proximity to my support network. I moved back to Ottawa and into my boyfriend’s abode to start our life together. While the skeletons are still here in the city, we conquer them together. While I stare at the mirror trying to remember who I am he reminds me that he loves me. And while we have chosen not to try to conceive, he provides for me in more ways than I can describe. So, as I write this I get a little bit of my life back, and hopefully shine light on the fact that my divorce was a great thing after all.

Sidenote: There has been a great deal of focus on the effects of reality tv series, and how the high intensity environment can elicit depression. In the year my husband was on Top Chef Canada, several of the contestants were shortly divorced or had moved away for sanity. My research has shown this is not isolated to cooking shows but any reality show where the contestant is trying to ‘win’ and is disconnected from friends and family for a period of time. The loss of sense of reality plays into the need for winning. If you have a loved one who has gone through this and is suffering in silence, please talk to your doctor on their behalf. With the right care, hopefully the effects can be reversed.

https://www.marieclaire.com.au/reality-tv-mental-health

https://www.cnn.com/2019/03/29/opinions/reality-stars-and-social-media-opinion-intl/index.html

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Pain Survey

Pain is realCramp My Style Blog is expanding. The new initiative is focused on neutralizing gender-biased outcomes in pain treatment. On the onset, the goal will be to understand the challenges presented to women (and transgender) when confronting their healthcare practitioners about pain. Once this initial information has been collected, the focus will be to lobby for, and create tools to, neutralize the gender-biased treatment outcomes with real data backing these policies.

If you are female, transgender, or non-binary and experience chronic pain; have confronted these challenges to your health care provider, and want to participate in this 5min survey, please click on the link below.

Identity and answers are 100% confidential, protected by Survey Monkey, and anonymized. Information will be used for research purposes only and will not be shared with any third party.

https://www.surveymonkey.com/r/PAINISREAL

Thank you in advance for your participating. If you wish to continue receiving information about the expansion company please use email crampmystyle18@gmail.com with ‘newsletter’ in the subject line.

by Categories: endometriosis journey, Ulcerative Colitis Journey 1 Comment

Listening to my body – Part 3

I would like to entitle this blog post “taking matters into my own hands” simply because the last month has been complete and utter HELL and I have not heard a peep from either doctor despite my concerns. I should preface this by saying I feel confident my doctors respect me so I don’t think they are adamantly trying to ignore more, but as the medical system goes I’ve been dealt a shitty hand and its up to me to fix it now.

I  would also like to take a pause here and say “sorry for being away for so long” but I think the journey below will paint a better picture for you.

If I were to summarize January I would say, 1) hopeful on the lower endo pain 2) confused about the upper endo pain 2) concerned about the pancreatitis flare and 4) happy-ish with my UC status.

If I were to summarize February I would say 1) pissed off about the lower endo pain 2) phenomenal resolution on the upper endo pain NO THANKS TO MY DOCTORS!! 3) very confused about the pancreatitis and 4) a little concerned about my UC now.

Endometriosis Pain Blocker

Dr E is a saint to be honest with you. Despite his tremendous workload is was able to squeeze me in for my second pain blocker and made sure he was present in the appointment. This time we decided to try the pain blocker + steroid which is meant to increase the longevity of its effectiveness. Wow that is a weird sensation when  need (a large needle) goes into your nerve. Ugh! I was immediately concerned with this injection because I was nauseous from equal parts psychosomatic and equal parts somatic. Dr. E insisted I sit and talk to him until the nausea went away and during that time we talked about birth control.

Birth Control

Since the regular Minovral Oral Birth Control was clearly not working (I bled for 22 days straight in January) Dr E was going to try me back on Visanne but I just knew in my heart it was a waste of time. We talked about the potential that my ulcerative colitis, or rather my damaged gut, was impairing the ability to absorb the oral birth control. It was a quick decision to book an appointment to insert an IUD. From everything I have read, Im pretty stoked about getting this implanted and to only receive Progestin again. Aside from the bloating, which likely won’t occur this time if I am bypassing my gut, the progestin sits really well with me (and my clear skin!).

After the appointment…

What a freaking shit show. Several hours after the injection both the lower and upper endo pain was exacerbated and medically this makes zero sense. Could I have been reacting to the steroid? I was expecting pain to get worse before it got better, like last time, but not in both spots and not to this severity. I let it ride. And over the course of three gruelling days it got worse. Intense. Crippling. Nothing – not even morphine – was helping, so I was subjected to being drug free. On the third day we had some lovely friends come to town and I was NOT going to let this pain stop me from seeing them. So I did what any woman in crippling pain would do… I drank! A lot. Until it numbed the pain. Judge me all you want but when you get even the slightest relief it’s a godsend and I wasn’t about to stop.  3 stiff drinks, med free, was the perfect remedy to help me sleep.

I awoke the next day in more pain than I could imagine and I was caught between a rock and a hard place: feed into the feeling that I may die here in this bed or risk going to the hospital for some pain meds. Ok the truth may shock you but I endured the pain for TWO MORE DAYS; I couldn’t bare the thought of him missing work to be with me so I waited until he was gone. Ladies I was so shocked at the care I received in emerg. The female nurses and doctors that took care of me were all very sympathetic and determined to try a variety of medications on me until we found the right one.

Sad news is after 12 hours they ran out of meds to try on me, and a slithered back home into my bed and succumbed to enduring this on my own again. My body relaxed with the comfort of my own cave, too weak to cry, and too frustrated to tell anyone. I lay there for hours just breathing and writhing. Why didn’t I go see Dr. E, you ask? Because that day he left for two weeks of vacation and the damage of the injection had already been done. No pain med could help me at this point. I needed a fresh start.

Call me crazy but that exercise sparked a whole new level of determination in me. I could have just called it quits and claimed myself a permanent alcoholic but I didn’t think my family would appreciate that so much, nor my boss, so I spent that time in fetal position thinking about next steps. Disclaimer: My heightened determination may have had something to do with 6 days until I leave for the dominican republic – get your ass up and figure something out! 

Taking matters into my own hands

So this is what I did. I booked an appointment that day for a massage to focus on my ‘diaphragm’ pain. Words cannot express to you (though I’ll try in a dedicated post on this) how much this helped! So I booked a second one, two days later. This one admittedly was a bit more painful but still helped. Next thing I did was went to an osteopath. Have you ever been to one of these? Lord almighty I had some skepticism when I realised most of her practice was done with her eyes closed but I was in NO position to pass this up. Again, I was astonished and perplexed at how much this helped. Mentally, physically, emotionally. I am now sworn to osteopathy. More on this in a separate post for those of you who are looking into this treatment.

The stigma of natural practices

I don’t want this to be a ‘holier than thou’ moment but more of an educational moment for all of you skeptics (or rather, what I like to call judgy judgers) who wouldn’t touch these methods of practice with a ten foot pole. I see support groups for natural remedies, diets, oils, and I lump them all into a category I like to call “No thanks I’ll stick with my doctor”. But then one day, something happens and you realise that the medical system is failing you; a system designed to cater to illnesses and diagnoses that are well-defined, treatable and non-urgent. You come to the day where, literally, you say to yourself “I’m going to die on this cold bathroom floor and nobody will find me for days but at least I will not be in pain any more.” And you are forced to make a decision: Give up or try ANYTHING.

This is literally what has happened to me and SO MANY women out there. I would even dare to say a number of men have come to a reality that had once been trivial to them – have a doctor with no answers – and have given in to alternative treatments. So on record, I say, “If I have to choose death or alternative medicine, I’m going to try alternative medicine”.

One week later I was in shape to go to the Dominican (with one day only, sick in bed at the all-inclusive) and enjoyed a much needed break from life.

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Listening to my body – Part 2 (B sides)

I’m not sure why I thought this would be the end of my journey – a perfect harmony of data points that would lead me to become a normal human being once again. It started out as if everything was happening in tandem like the parting of the sea, but no, not quite that easy. Here’s what happened.

After I met with Dr. E and Dr. C, I went home thinking maybe the lower pain could be eradicated with this ongoing treatment of injections, and the upper pain could simply be due to one of two things: the learned pain or the pancreatitis as a direct result of Entyvio. Either way, it would be easy to try out both theories and go from there.

On Friday January 18th I went to the clinic to receive my Entyvio infusion – the first of my 4 week interval injections. I was right on time, with needle in vein right at 2:30. Nothing unusual about this appointment and no reason for alarm that I was feeling particularly sleepy as it was nearing the end of a busy week. By 3:30 I was back at home, finishing up my day and looking forward to drinks with Greg and some friends. We left the house at 6:45, had our first drink in hand by 7pm, and … by 9:30 I was tucked in bed with a pain level of 8, a tramacet in mouth, and the heating pad on my belly. Pancreatitis came knocking on my door that night, and it almost seemed too good to be true that Dr. C’s theory was coming to fruition so readily. Unfortunately we hadn’t put anything in place for me to go get any blood work done to prove out the escalation of pancreatic enzymes, and it was nearing the middle of the night. On Saturday morning I called and left a message with Dr. G to let him know the pancreatitis, deduced based on previous symptoms, erupted 7 hours after my infusion. I don’t know why, maybe because of how drastic the pain was, I continued to take tramacet rather than any other pain medication. In part it was helping subdue some of the pain but mostly it was knocking me out so I didn’t have to endure this anymore. Saturday was a crap shoot.

By Sunday, with no relief I decided two things 1) I was going to switch to Naproxen (cus why not) and 2) I was going to be all better by 5pm. The naproxen surprisingly was helping a bit more than the tramacet, but not enough to throw a party. Sadly it wasn’t knocking me out in any way so I endured the pain by being awake. Deep down though, both Greg and I were kind of happy that the dots were being connected for us and one theory was being illuminated over the other. This could be a quick end to my journey. Then at 4:15 Greg hollars “don’t worry you have 45 min til you’re all better” (gotta love his witt). I got up, went pee and…. HELLO PERIOD! FML.

Not only was this annoying as I shouldn’t be getting my periods anymore but this totally just screwed up the entyvio theory. I was back to square one.

As I lay in bed, I started to think about how to describe the pain in each of these areas and was going to pull out a sharpie and start drawing on myself. Instead, I decided to sketch Miss Sassypants over here.  Ok from the diagram I want to point out a few things.

 

  1. When I get pancreatitis, it LITERALLY hurts on my pancreas. But I noticed that when I get my period my pain is less to the right side (where my pancreas is) and just below my ribs in the center. Looks awfully like my diaphragm but Dr. E says it wouldn’t necessarily hurt there. In any case, the pancreatitis pain and the ‘period’ pain are so similar.
  2. However, both those pains are significantly different (though close in proximity) the dull ache I get in my upper colon when my colitis is flared (or I’m due to get my next infusion).
  3. Note the base of my colon is so close to my reproductive organs so while they are very distinct organs the pain often feels a lot alike. When I have my PERIOD and I have poopy problems, it’s hard to tell whether my colon is aching or whether my ovary is angry. When Dr. E gave me the injection to stop the pain down there, it was effective for a few days but it was acting on the nerve, not on any physical organs. Thus with my period my ovaries started hurting, and with the pancreatitis wreaking havoc on my digestive system my lower colon was inflamed. Its currently hard to tell whether Dr. E’s injection is helping right now or not.

 

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