I finally had most of the colon testing done that I needed and I think I will put off or ignore the other proposed GI tests because I have one big anatomical* problem that is at the root of all of my bowel troubles and it needs surgical intervention.

*My surgeon always says ‘anatomic,’ but the internet tells me there’s no difference between anatomical and anatomic, so I’m sticking with the former (unless I need to write about ‘an anatomic bomb’ because that just sounds cooler). 

This week, I had four back-to-back appointments at the hospital and – for anyone in my area – every aspect of this visit to Virginia Mason was so much better than the last decade of overall experiences at Swedish or the University of Washington. Everything was streamlined and on time (even when I was late to my first appointment–total calm kindness greeted me); every clinic was in the same building; everyone I asked to wear an N95 did so with no issues; nobody read my lengthy records and insinuated anything negative or dismissed me for being too complicated or too young; everyone knew what Ehlers-Danlos was and they weren’t scared of it; and, most importantly, everyone was kind and didn’t rush me and answered all my questions. 

I had a barium fluoroscopic defecography, an anorectal manometry and internal exams plus consults with both the colorectal and urogynaecological surgeons, separately. 

The results from these appointments, along with the info gathered from my own daily hellish routine and other testing from this past year (colonoscopy, MRI defecography, abdominal CT, two mesenteric vascular duplex ultrasounds (one with breathing protocols), Genova Diagnostics stool test, urodynamic (bladder) testing, pessary trial, splinting trial, pelvic floor physical therapy, exams by a prolapse specialist and another colorectal surgeon, diet changes) have finally given us a very good idea of what is happening. And–shocker!–fiber, papaya and probiotics aren’t the answers to my problems. Neither are Miralax, Linzess, Motegrity and all the other medications that have been thrown at me (although, I’ll have to continue to use them for life). 

In the interest of transparency, education and destigmatization, I’d like to tell you exactly what I go through every day in order to defecate, but I’m going to save that for another time (you’re welcome). Instead, I’m going to tell you exactly what is happening to me anatomically because everyone has an asshole, so this shouldn’t be taboo.

My big, bad problem is an enterocele. An enterocele is a prolapse or hernia of the small intestine. The back of the vaginal wall and the front of the rectal wall should be fused, but mine have separated and my intestines–probably the small bowel, but it’s not quite clear which part–have dropped into that space, obstructing defecation. I also have a severe rectocele and less important sigmoidocele, cystocele and uterine prolapse. Everything is collapsing and falling. I also have intussusception of the rectum, which means it is telescoping into itself when I bear down. If you google this, it says it is very rare and life-threatening, but mine is happening every day, whenever I have a bowel movement and, so far, hasn’t caused a complete blockage and hasn’t telescoped itself outside my body. However, that is the normal course of things – it is probable that one day my small bowel will fall out of my anus and that will be a surgical emergency. Or my uterus or bladder might fall out of my vagina. These things have been happening to women forever and no one talks about it. Thank dog for online support groups – I can’t hate facebook when it has connected me to others going through this craziness.

Prolapses, both internal and external, are almost always caused by childbirth – usually in women who have had multiple pregnancies. Mine is caused by the poop babies I’ve carried around my whole life (chronic constipation) coupled with Ehlers-Danlos Syndrome (EDS), a disorder which affects the integrity and strength of the connective tissue throughout the body. In other words, the walls of my intestines aren’t strong, so they herniated under the pressure of poop. My pelvic muscles are affected, too, and have become lax and atrophied, so they’re not holding anything up and in place. 

I have found all of my testing incredibly fascinating (although, brutal because of the way my body pays me back for any intervention). The other day, I got to watch the barium defecography on the screen–I got to see how my anatomy moved as I pooped and ask the radiologist questions in real time. There was a huge pouch of barium mash (they literally squirt instant mashed potatoes up your bum) that descended anteriorly across the base of my pelvic floor when I bore down. I asked if it was my rectum and the doctor said no, it wasn’t meant to be there at all – that was the rectocele (or maybe enterocele–I need to get the imaging disc and look more closely). I couldn’t believe it – I wish I’d had the foresight to take a photo. It was upright and vertical and, when I pushed, it just splooged forward into a horizontal cavity that shouldn’t be there. By “it” I mean my intestine, which was outlined by the barium.

I told the tech that if she ever had another nervous patient (I had never had barium before and didn’t know if my body would react to it), tell them they get to watch the x-rays and talk to the radiologist as the test is performed. I would have been sprinting into the exam room, if I had known that!

The surgeon said this is not a functional problem with digestion and motility and there was no point in doing a Sitz Marker Study (or Smart Pill) because it would give false information. It measures how long it takes for markers to move through your GI tract, but they wouldn’t move due to the enterocele and rectocele clogging up the pass, rather than a problem with the migrating motor complex.

He said an upper barium study and/or endoscopy (my GI doctor wanted both) might be warranted if I had reflux or problems with swallowing, but I don’t. I was diagnosed with “gastroparesis” (food won’t leave my stomach), but it’s only a problem when my bowels are backed up. He thought I might have a hiatal hernia because they often go along with pelvic prolapses, but since the symptoms aren’t bad, he’s not concerned.

The other tests that I found fascinating and informative were:

• The anorectal manometry was mostly normal: No evidence of nerve damage or Hirschsprung’s disease. No dyssynergia, meaning the muscles work as they should and in the correct order (rectum contracts first and then the anus relaxes). No pain, pressures were normal and sensations were okay-ish. The two abnormal findings were my anal sphincter is tight (cue the tightass jokes) and it took quite a high volume (a balloon being inflated inside my rectum) for me to have the urge to defecate. This could be because I’ve become desensitized from daily large-volume enemas for so many years or it could be because the rectocele creates more space in that area for the balloon to expand into. 

• The abdominal CT, which showed an “enormous bladder,” four times the size it should be, and a distended sigmoid colon that was “pushed up the wazoo” (quotes by my neurosurgeon, Bolo, which his other patients will appreciate). 

• The stool test, which I assumed would show dysbiosis, infections and metabolic imbalances, but it didn’t. It was pretty okay. 

• The Duplex ultrasound that showed my duodenum was being compressed, which could explain the pain in a certain high-up place after I eat.

• The colonoscopy, which showed the inside of my large bowel is lovely, with no issues. I’ve had constipation my whole life, my mother and aunt have diverticulosis and my grandmother had bowel cancer, so I assumed I’d have something wrong, but she didn’t even find a polyp. Even more interesting to me was that my cleanout in preparation for the colonoscopy was easy. I didn’t even need the second prep. I assumed I had loads of backed up stool. I thought I’d be one of those horror stories: It was found during the autopsy that she had 10 pounds of fermenting meat in her gut!

The main issue found during the colonoscopy was that it was difficult to get the scope around the bends in my colon, even using a pediatric scope, which means it is difficult for poop to get around the bends, too. My GI doctor said things were tweaked and compressed within my abdominal cavity because I am such a small person and it’s further complicated by not having a lot of fat around my organs – my colon bends at acute angles rather than soft curves because there isn’t enough fat to act as a buffer to smooth out the turns.

This is exactly how it feels, subjectively, when I’m sitting on the loo. I know I said I’d spare you this part, but one of the things I have to do is squeeze my intestines with my hands like a toothpaste tube. I have to physically push stool around those sharp angles with my fingers. 

The lack of organ fat contributes to the issue they saw on the ultrasound, too. My duodenum is compressed in between vasculature (the aorta and the superior mesenteric artery*) and the first-line treatment is to gain weight to try to bulk up the mesenteric fat pad, which will help separate the arteries enough that food can pass freely through the duodenum. 

*This is called Superior Mesenteric Artery Syndrome (SMAS), which can be very serious and life-threatening when it lets nothing pass (mine isn’t, thankfully, and we’re not even sure if the measurement was accurate, so this may not be my diagnosis). It can occur with other abdominal compression conditions, such as Median Arcuate Ligament Syndrome, Nutcracker Syndrome or May Thurner Syndrome, and seems to be more prevalent in people with EDS, mast cell disease and dysautonomia.

I didn’t believe my EDS diagnosis for years. I’m not the typical bendy person who did body-contortion party tricks as a kid and suffered subluxations my whole life. After being schooled by numerous doctors, I now believe this might be the root of all of my issues. My rheumatologist showed me what my joints aren’t meant to do, my physical therapist told me I had the most hypermobile neck she’d ever worked on, my neurosurgeon explained how a tethered spinal cord, which happens more often with connective tissue disorders, is damaging nerves and pulling my brainstem down, blocking the normal flow of cerebral spinal fluid. And, the other day in the hospital, every doctor I spoke with said, yes, the reason for all of my poop woes (and digestive, bladder and uterine woes) is shitty connective tissue that has weakened the walls of everything: fascia, vasculature, intestines. 

The bad news is these conditions will only get worse and the only thing that will help is major surgery. The colorectal and urogynecological surgeons perform the operation together to fix the prolapses, lift everything back where it should be, suture organs to the tailbone and add mesh, so your body creates scar tissue to strengthen the vaginal and rectal walls.

The really bad news is that I can’t risk mesh. Not just because of the scary outcomes you hear about in “normal” people (those mesh class action lawsuits advertised on TV), but because my immunologist warned unequivocally that with mast cell activation, my body would react to and reject the mesh, causing complications. Not to mention the much higher probability of surgical failure because of EDS – my tissues would probably just sag and drop again, sutures would fall out. I’d have to be careful with coughing, sneezing, bearing down, lifting even a light amount of weight for evermore and there would be repeated repair surgeries. I can’t imagine a life where I don’t bear down. I even have to push to pee lots of the time.

And it’s not like I would miraculously be able to have normal, formed stools and easy bowel movements. I will still be taking daily medications, I will still have the acute intestinal angles and will I be able to toothpaste tube-squeeze my guts after surgery or will that be too risky? It’s a scary proposition.

The colorectal surgeon said, without mesh, it would be a “placebo surgery.” He said there was absolutely no point. I asked about the ACE surgery that allows you to flush water from a stoma created by your appendix – kind of like an enema from above – and he said it wouldn’t help because the enterocele would still be there.

I asked about a sacral nerve stimulator and he said they are usually used for nerve damage that causes incontinence issues, which I don’t have. He said the only real alternative to a mesh repair is a colectomy (with a colostomy bag). He said he wouldn’t do an ileostomy, but I can’t remember why. My immunologist suggested the same thing – go straight for the ostomy.

Mind you, removing my colon and getting a bag — even if I had a perfect surgical experience and recovery — won’t make all of my problems go away. There might still be complications with the mesh they put around the stoma to try to reduce the likelihood of a parastomal hernia (which is quite common). And I would probably have issues with scar tissue and reactions to the adhesive coverings and deodorant smells and bag emptying (which involves body positions that my spine doesn’t like to do), and your rectum still generates mucus after you get a stoma and there is leakage, both rectal and around the bag etc etc… It can still involve hours in the loo and pain and regular medical interventions. It is definitely not a cure-all or an easy road. You can’t believe the difficulties until you read patient stories. Some people’s quality of life is drastically improved – they can travel and exercise again, for example – but, of course, this wouldn’t be my case because ME/cfs is still very much the specter that keeps me mostly housebound. 

So, how long can I limp along like this and when will I have to get surgery? My doctor said, one day my small intestine will probably prolapse out of my body and I will have no choice. It could be in 7 days or 7 years, he couldn’t predict. And my daily interventions will eventually not work – more medications, more enemas with larger volumes of water, more pain, more dietary restrictions.

My quality of life from this one issue is very compromised, though my fear of surgery overrides this. I think I could probably manage to continue with my current routine for years if it weren’t for one thing: The vasovagal collapses. 

Those who know me know that these have been happening for 20 years. They started with dysmenorrhea (period pain would trigger prolonged blood pressure drops and my body would go into a sort of shock), then they started happening with bowel pain. I controlled these (or tried to) by taking nightly progesterone, so I never menstruate, and not taking any laxatives that cause cramping, like Senna or Dulcolax.

Then they started happening with pelvic floor spasms – once while using a vibrating device on my lower abdomen to try to stimulate stool/gas movement and twice from orgasms. I can stop doing those things, too (not happily), but, recently, my pelvic muscles go into spasm for no reason other than gravity dragging them down or pressure building up in my colon.

It’s not the spasms that are the problem – I can handle quite a bit of pain – it’s the subsequent collapses. They aren’t “faints” – I don’t recover by lying down and getting oxygen to my brain. In fact, they often start in the morning, after I’ve been lying down all night. My husband describes them as “catastrophic system failures.” Pale pallor, cold sweat, breathing difficulty, tunneled vision, unable to speak, bradycardia, prolonged hypotension, sometimes loss of consciousness, and often a call to 911. When an abdominal spasm occurs, if it goes on long enough and is painful enough, I will feel my body start to shake and then all the other symptoms encroach. I usually call my husband and have him on the phone until we know whether it will stop or if I will fall off the edge and need medical intervention (paramedics can’t do much besides make sure I recover, check my heart, give me IV fluids). 

I’m trying to describe this clearly, without hyperbole, but these episodes are terrifying. They are unpredictable and it feels like I’m going to die because I’m so weak and my blood pressure is so low and I can’t get a breath and everything is fading out… My specialist says it feels that way because, physiologically, it is the closest I come to death. Yikes.

Point being, if I thought these collapses could be curtailed by excising my colon, then I would be much more eager for the surgery. But nobody has ever heard of this issue. Is it vagus nerve damage? Part of dysautonomia? To do with spinal cord and brain stem? These episodes are still more frequent with hormonal fluctuations, so I’m praying that after menopause they will get better.

Maybe that’s my decision. Maybe I can hold out until after menopause – hope my organs stay inside my body and don’t rupture, hope I can keep getting food in and out with all of my exhausting interventions – and see what gets better and what gets worse after menstruation isn’t playing a part. Maybe then I’ll be able to stop taking progesterone, which might help the overall picture because it can cause constipation (in some people I’ve talked to, it paralyses the gut or stops motility entirely). I’m currently not willing to come off it and risk the angry mast cells that come with periods.

I held out a smidgen of hope that having my tethered spinal cord fixed would also solve my bowel problems and everything would get better, but it looks like there’s no getting out of this one and I have to face multiple future surgeries. Time to find some safe painkillers that don’t cause reactions!