Chronic constipation after endometrial excision surgery

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.

Just a sick girl’s rant

I don’t know who is out there anymore or who subscribes to blog RSSs (is that what they are called), but I started out on this blog for me so hey, here we go. I don’t know how to do this anymore. The symptoms, the drugs, the expectations. It’s all heavy, you know? Like, you have this layer of existing that just seems to float through life. And then, there is this thin layer of grime that occurs on that light thin layer, when the drugs weigh in. And then on top of that there’s like a molasses layer when the fatigue sets in. And then sitting on top of this molasses layer are bumps – these things that hit life and set you off course a bit like when you stick your arm out of a moving vehicle on a windy day. Those bumps are all the expectations people put on you cus hey ‘you have a role in this life and you need to live up to it’.

I used to hate the slimy later of medication side effects but without it now, I feel like I have nothing anchoring me to the ground. Have no medications that helps and Im just floating and fluttering without any real direction. For me I spend way too much time focusing on each new symptom; a twitch on the arm, loss of feeling in a finger, difficulty swallowing. I spend too much time analyzing my bowel movements or my cramps. I put stock in one good day and then get miserable when I try to replicate it and it all turns to shit. And while everyone around me keeps moving and living and wondering about cool shit, I just hope and pray that the doctor is going to call me. With every new negative exam that comes through my patient portal I feel dread of having a diagnosis and equal or more dread of not having a diagnosis. It’s all so heavy. Every single day I am expected to just go on with my life, like it doesn’t hurt. Like it doesn’t just hurt so bad. One day the doctor will call. That’s that they say. These things take time. I wish I could sleep it all away sometimes. You know? Like just hang up my coat, crawl into bed, close the curtains and sleep. Sleep for days. Sleep for weeks if I have to and then come back to life when the doctor is ready to see me. But I cant do that. I have too much going on. We all have too much going on.

Keto Coffee – Promotion on now!

Alright everyone, you gotta hear me out about this Keto Coffee….

My friend KRISTI is looking for 5 models to try the KETO COFFEE ☕️ ☕️It’s non GMO and all you would have to do is substitute it for your morning coffee for 90 days! This coffee burns fat, fuels your brain so you can focus with more energy, and keeps your full until your first meal. Perfect for those people on the go! It tastes like a delicious creamy latte! She’s going to hook you up with her 40% discount too!! Where are all my coffee addicts that want to make that habit a little healthier?

So this is Coffee, collagen, MCT oil and grass fed butter and pink Himalayan salt all in an on the go pack, so it is a powder that you just blend either hot or cold. You get 15 in a bag. Just drink one cup every other day.

The packets are single serve and taste like a frothy latte!! The sustained energy is just clean feeling. No jitters 🙌🏼

✔Boosts energy, focus and mood
✔Kills cravings and satisfy hunger
✔Fuels body and burns fat
✔ gives stronger hair and softer skin
✔ gives a balanced metabolism 🙌🏻🙌🏻🙌🏻

To order, message me or order using the address in the card below.

 

 

Danielle Joy Designs

I recently connected with Danielle, founder and owner of Danielle Joy Designs.

I was randomly searching for endometriosis-related merch on Etsy the other day and stumbled upon bracelets that called out to me. They were bold and feminine at the same time, and I was quick to order one for myself. But as I started looking through the online shop I discovered that the owner is an #endowarrior like me.

Danielle was diagnosed with endometriosis after a year of excruciatingly chronic abdominal pain that no doctor could explain. Many MANY tests, scans and specialists later, she was finally able to find an endometriosis specialist who immediately scheduled her for a diagnostic laparoscopic surgery and excision of endometriosis if found. Stage 3 endometriosis was found and excised.

Danielle provides her clients with personalized jewelry and has a special collection of bracelets dedicated to the endometriosis part of her world.

A message from Danielle: The road to a specialist who can help women suffering with endo averages {TEN YEARS}! Yes, that’s right… women suffer for an average of ten years just to be diagnosed properly! 1 in 10 women have endometriosis! There are only a handful of specialists out there that even understand endo enough to help. There needs to be more awareness of this terribly crippling disease that still has {NO CURE}. Too many women out there are needlessly suffering day in and day out, merely existing, trying to just get through their day.

“We are researching on what the best foundation is for donations but we will be donating proceeds to an endometriosis foundation to help find a cure. Women deserve to get their lives back and we want to help fellow #endosisters as much as we possibly can.”

You can purchase Danielle’s jewelry on Etsy and Amazon. Be sure to use the promo code ENDOAWARENESS. Details are also on the sidebar of this site.

Danielle can be found on her website (daniellejoydesigns.com), her etsy shop (DanielleJoyDesigns) or on social media:

Facebook: http://www.facebook.com/DanielleJoyDesigns
Instagram: http://www.instagram.com/daniellejoydesigns
Twitter: http://www.twitter.com/djdjewelry

 

 

 

Versatile Blogger Award

I am so honored to be awarded the Versatile Blogger Award; you can find more information here: https://versatilebloggeraward.wordpress.com/

I graciously thank http://www.endotough.com/ for presenting this award to me. As a ‘pay it forward’ I nominate the following blogs for the Versatile Blog Award:

https://endohope.org/

The Medium @ Rachel Langer

http://www.jessicamurnane.com/

http://www.stillsunflowers.com/

https://bloominuterus.com/

https://www.emlwy.com/

https://lessthanbutterflies.wordpress.com/

http://girlinhealing.com/

https://www.gutlessandglamorous.org/

http://www.aliontherunblog.com/

Lights Camera Crohns

https://mywellbeingjournal.com/