Where do I start?! I don’t know any of my ill friends who don’t have some kind of bladder and/or gut issue – M.E., POTS, EDS and MCAD all have the ability to affect the urinary and GI tracts and when you have all four diseases you might as well hold your hands up (or pull your pants down) and surrender 😉 .
I’ve had trouble pooping from the day I was born. As a kid I only opened my bowels once or twice a week and even then it was a strain. My constipation was always put down to the fact that I ate a very limited diet (I just didn’t like food much as a child) with not enough fibre. I know different now of course! My Mum used to give me Vaseline enemas (which, trust me, are as vile as they sound) and I regularly took Senocot (a natural laxative), although this was discouraged by any Doctors I saw as they said it would cause my bowel to become lazy. Of course, we’re going back to the 1970s and these days there are more sophisticated treatment options available rather than someone shoving a petroleum jelly clad finger up your jacksie.
During my bedridden M.E. years in the 1990s my bowels got even worse. You lose muscle tone very quickly when you’re not exercising and the bowel is no exception. I had to take laxatives every day but still only pooped a couple of times a week. This despite my diet having improved substantially: I became vegetarian in my early twenties, ate organic produce, fresh fruit every day (usually smoothies as I struggled to chew much of the time), sprouted my own seeds and drank freshly squeezed vegetable, fruit and green juices. My Mum told me if she ate that much roughage she’d be shit off the planet but it still barely kept my intestines going 😉 .
I started with some fairly serious and persistent lower right-sided abdominal pain around 2000. It was a constant sharp pain, didn’t come and go, and didn’t hurt any more or less when I pooped. Despite this, it was put down to Irritable Bowel Syndrome (how I bloody hate that diagnosis, which isn’t a diagnosis at ALL!), despite not fulfilling the criteria for IBS in any way.
I was convinced it was endometriosis (which can cause significant pelvic, bladder and bowel pain) and pushed for a referral to a gynaecologist. My ultrasound was normal (there’s a surprise) and the lining of my womb looked fine. Because my periods were also regular and my bleeding wasn’t abnormally heavy she thought endo unlikely – I’m still not convinced, having had horrendously painful periods since the age of 11. I also get pain in my lungs and actual stomach when I menstruate and if I stretch my body out it feels like something in my lower right-hand side is tugging. I was eventually offered a laparoscopy which is the only real way of seeing if endo is present, but they refused to do it by epidural saying they needed me fully anaesthetised so that they could pump my insides full of air. I’ve since learned this is rubbish and they could have done the lap without it. I explained about my drug issues and the fact that any kind of sedative gives me anaphylaxis, but because I didn’t have a mast cell diagnosis at the time this was dismissed as me just being anxious *sigh*. Having talked to the anaesthetist who told me that even if I did have a reaction to the anaesthetic it wouldn’t kill me, I declined the operation: I knew for a damn fact that the drugs they use during allergic reactions I was also allergic too, and they actually had no idea how I’d react to the op.
Over the past 14 years the pelvic and lower abdominal pain has gotten progressively worse but being as though I can’t take the contraceptive pill or any kind of pain killers I just put up with it – what choice do I have? I now have constant lower stomach/pelvic pain, it hurts every time I open my bowels and peeing can be excruciating 😦 As for my period pain let’s just say this: if I were an animal I’d be put down.
With the benefit of hindsight I’ve always thought my lack of bowel regularity was due to my Ehlers-Danlos. I obviously have very stretchy intestines which means my motility is compromised and I also suspect I have a lax ileocecal valve which means my poop doesn’t pass from my small intestines to my large intestines properly. However, it’s not the full story because after starting my low histamine diet in 2013 my bowel movements have improved substantially. It should come as no surprise as the colon, stomach and entire GI tract are packed with both mast cells and mast cell receptors, but surprise me it has. I eat much less fruit and veg than I used to, as many of the things I ate a lot of I either now react to or are high in histamine, which you would have thought would make the situation worse not better, but I now open my bowels at the same time virtually every day. My poop is often HUGE and expelling it is a bit like giving birth but it sure feels good to get rid of my waste like a regular human being! So my issues have obviously been a combination of both EDS and MCAD and not just EDS alone which has been a revelation.
I started with a dry, unproductive, chronic cough in about 2006. This was accompanied by what I thought was muscular pain between my shoulder blades. I didn’t tie the two together and realise I had GERD (reflux) until 2013, by which time I was having classic oesophageal and stomach pain, which frighteningly radiated down both my arms – I can see whey some people with severe reflux think they’re having a heart attack. Although I’ve been diagnosed with MCAD I’m still not convinced my reflux is down to excess stomach acid (or too little stomach acid come to that). I think my oeseophageal sphincter, which holds the stomach contents in place, is too lax due to my EDS and not closing properly so that the normal stomach acid that everyone produces is making its way up into my gullet. I have reflux 24/7, not just after I eat, which adds further weight to the theory. I’m currently on the maximum dose of Tagamet, plus extra Gaviscon Advance inbetween doses, yet still have chronically painful reflux which seriously gets me down. I really should ask my GP if I can go back and see the gastroenterologist but I know he’ll just tell me to try taking PPIs which doesn’t fix the problem in any way. Despite the severity of both my reflux and bowel issues however I’ve never suffered from gas either up or down – you have to be thankful for small mercies.
Nausea. I think my battle with nausea deserves a blog all of its own! During my bedridden years my nausea was often severe and for days, sometimes weeks or even months on end, it was all I could do to force down a smoothie or a slice of dry toast. As my M.E. improved somewhat the nausea did improve, only to come back with a vengeance in 2012 when my mast cell/stomach issues started in earnest. For the past two years there’s hardly a day gone by when I haven’t felt sick: sometimes it’s just a mild annoyance lurking away in the background, but at other times it’s all-consuming and involves hours of dry retching (although bizarrely I hardly ever actually vomit). It’s gotten to the stage where I can, for the most part, just ignore the nausea exists. I never knew it was possible to feel horrendously sick and hungry at the same time and I’ve learned to just eat through it – if I hadn’t I’d’ve died of starvation by now!
I’ve always peed a lot. For many years I didn’t realise I went to the loo more often than ‘normal’ people, until one of my boyfriends told me I “had the bladder of a budgie” 😉 . On average I’d say I peed every three hours, although this could be as much as twice an hour. In addition, during my thirties I started going to the loo at least once a night and in my forties I could go as much as six times, which seriously affected my sleep. Again, going low histamine has helped a lot with my urine output – the bladder is packed with mast cells and mast cell activation has been strongly implicated in Interstitial Cystitis. My Mum was the first to notice I wasn’t peeing anywhere near as often when I went to visit her and my nocturnal widdling is largely a thing of the past. I wouldn’t say my bladder is normal, but it’s miles better than it was and for that I’m truly thankful. I’m also thankful I’ve never suffered from any kind of cystitis or bladder infection and have never been incontinent.
There is so much going on with my insides I’ll never get to the bottom of what’s causing what and, in lieu of any drugs I can tolerate, can’t see much in the way of symptom control in the foreseeable future either. All the tests I’ve ever had (belly MRI scan, upper endoscopy, biopsy, Coeliac test, H-pylori test, bowel motility study using Sitzmarkers, ultrasound, faecal inflammatory tests) have all come back normal! Yet again I’m astounded I can be so dysfunctional and in this much pain yet all appears fine. Fine my arse!!