I have tried searching the title of this blog article many times over the last three years, hoping I’ll find a flood of information and women just like me. But it seems like a needle in a hay stack finding anyone who has even a remotely similar journey to mine. And then I remember that the topic at hand – dealing both with endometriosis and with constipation – is not easy for people to talk about. It has been over two years of this so, I figured it was time to share my story.
As I had said many times in the past, I find it utterly frustrating that my endometriosis specialist and my GI (I have ulcerative colitis) don’t talk, especially in instances where surgical mapping would often lead to involvement of my bowels. This is what happened – or didn’t happen – leading up to my third surgery (second excision). My first surgery (ablation) and second surgery (excision) heavily involved removing endometriosis from my bowels and now my third surgery required many hours of work to remove my left ovary and rectosigmoid from my abdominal wall. Not a small feat and certainly a process that would alter the state of my bowels. Nonetheless the surgery went very well, and I was instantly pain free when I woke up in the post op. I was gradually mobile and optimistic the days after my surgery, but at around day 30 I started having constipation issues. Calprotectin showed my bowels were ‘fine’, and an ultrasound showed there were no complications related to the surgery. I was advised to take restoralax daily to move the bowels.
The timelines are hazy now but as a general recap, one cap of laxative didn’t work. Two didn’t work. And then, I was put on constella at a low dose. While this medication is very ‘safe’ a constant dose of laxatives can result in lazy bowel and – as in my case – small intestine bacterial overgrowth (also known as SIBO). My endo specialist was kind, but not helpful in this particular case. My GI was less than helpful and even had a reprimand from the patient advocacy group for patients administered Entyvio which is the biologic I am on for my colitis. The disregard for the constipation was a huge red flag for someone in my condition. Just like that – boom – my GI called to apologize and figure out what we could do. Unfortunately just as it would have been appropriate to get some testing done in person, the pandemic hit and all the hospitals were in lockdown. Elective procedures were put on hold as was all the testing I needed to get further in my prognosis.
In these long 8 months of trying to be heard, I was on every laxative, stool softener, enema and suppository, just to get some relief. On average, I was having a bowel movement every 14 days or so, which caused a lot of brain fog, exhaustion and sluggish behaviour. I was getting full often, and then on top of it all I started having very smelly farts. I tried to get around it by curbing the fibre in my diet. I looked microscopically at everything I was eating and tracking it’s safe effects which is really hard to do when something is stuck inside of you for nearly 2 weeks. I was at a loss.
That summer of 2021 when the world was shut down, I was fortunate enough to be considered emergency for a defecography, This is where you lie on an MRI table and they fill your rectum with gel, in anticipation that the MRI will measure how much of the gel you are able to push out by your rectal muscles alone. Needless to say the tech was able to give me a resounding fail on the test. Not a drop was released when I neared down. In addition, they found an ‘insignificant’ 3cm rectocele which inevitably was the product of pushing during all of these months of constipation. While the results felt like a win to me, it provided no help in a diagnosis or any treatments. Following the let down of this test, I contacted my naturopath and figured the only thing I had control of in that moment was to treat the SIBO. I went on a 4 month journey of testing positive for all three gases, and then using natural agents to open the colonies of microbes, blasting them with natural microbial (rinse and repeat 3 times to be sure) and then a SIBO diet to ensure nothing comes back.
By the time I had completed the SIBO treatment it was a year since my surgery (a year I had been chronically constipated), at least 4 months since the results of my defecography, and no hope in sight. I wish I could say after that milestone everything got resolved. But, sadly, I went on an aggressive naturopathic journey to establish the boundaries of my constipation (is it muscular? Is it nerve related? Is it kidney or liver related? Is it the top of my digestive tract or the bottom? Is it the valves?). With all of the dedication and money put forth to really try and nip this in the butt, we came up empty.
By July 2022 I had just about given up. I was coming up empty on any diagnostic, I was still on the wait list for the gastric emptying test with no booking in sight, my back pain (presumably from the pressure built from constipation) led me to walk with a cane at least a few days a month, and we were no further along. I paused all the supplements and meds, which in a way ended up being a good thing as I was starting to have a bowel movement every 7-10 days rather than every 14. That, in my books, was sheer luck. Related or not, Im not yet sure, but along the beginning of summer with the onset of biting bugs I noticed my reaction to bug bites was beyond the norm. Doing some of my own research it had always niggled at me that anything involving histamine was always such a gross reaction in my body. Low and behold there was significant research on histamine intolerance and in combination, something called Mast Cell Activation Syndrome. For me this personally rang a lot of bells and was something I could begin to tackle naturally. Most of the literature for HI and MCAS suggest taking H1 and H2 blockers but I could tell immediately that this wasn’t going to resolve anything. Instead, my naturopath prescribed me a high dose of quercetin which works to strengthen the cell walls of the mast cells. I cannot tell you why, but within mere days my back pain went from a 7 to a 2. In theory quercetin works as an anti inflammatory and it is likely the pelvic inflammation from the constipation was reduced with the quercetin. Finally a win! The jury is still out on whether its helping with the MCAS but I have noticed a dramatic reduction in period poop cramps which might indicate less prostaglandins leaking out from the mast cells during menstruation.
All that aside, I thought I had discovered a real win. The back pain was intense up until that point. I was booked to drive to Toronto for a friend’s birthday and I was feeling well enough to do the 5 hour drive. I arrived, had a great dinner, had a few drinks and went to bed. This was the night before the party. That night, around midnight, I started having the most intense stomach cramps. The kind I always used to get with my endo but I knew it wasn’t that. The kind I always get with my constipation but why now? I endured hours of rocking my body in fetal position hoping I would either fall asleep, puke, or poop my pants. I was up for anything at this point. Puke it was. Over and over again, but it wasnt helping the pain. At that point I had to go to emerg. Not unlike any other emerg appointment I was told I was severely constipated, was told to take lots of restoralax, and then I was given a prescription of Reglan for 5 days (not to be taken any longer! And to stop with any unwanted side effects). When I got home, I did some research – as I always do – about this drug Why had I not heard of it before? Was it for constipation? No, it’s for gastroparesis.
Gastroparesis has now been my new hot topic. Why had nobody suggested this? I know why. Because the gastric emptying test I have been waiting for for two years is the only way to diagnose it. Without the test: no diagnosis. So I have been watching many TikTok videos about how to resolve it but without the right medications there is no way to get ahead of it. There is no cure. Am I hoping I have it? No, but its something tangible I would work with. In the meantime I was referred to a specialist in Toronto who works with endo patients who suffer from nerve pain thereafter. The specialist told me I had already done all the thing I could do and that he had no other tools for me. However, he put in a referral to yet another specialist who surgically implants sacral nerve implants in patients like me. Most of the research I find has to do with diarrhea or fecal incontinence but not with constipation so we shall see. All I can do at this point is hope Im a candidate.