The Bladder & GI Tract

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!!

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20 thoughts on “The Bladder & GI Tract

  1. kneillbc

    Wow! The combination of hings you’re struggling with must make figuring out what is going on a huge challenge! I have inflammatory arthritis as as-yet unspecified Mast cell disease of some kind- in all likely hood MCAD. I had no idea the peeing ALL the time might be a mast cell thing- that would explain it for me!!! I’m on a hypoallergenic formula now (NO food), and I slept for 5 straight hours the other night (a revelation). Everything else has calmed down- the non-stop peeing too. I had pit it down to the narcotics actually, but it being mast cell related makes WAY more sense. By the way, did I tell you I started a blog? It was you and one other that convinced me to start. Thanks for the inspiration! It’s password protected- as it isn’t edited for public consumption yet. If you like, go to awalkingallergy.wordpress.com. The password for all of the entries is KEWN. I figure anybody that those who are interested in your blog and MCAD might be interested in mine too.

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    1. bertieandme Post author

      Congratulations on starting your blog 🙂 I’ll go and have a read when I have some time this weekend.

      Really pleased your symptoms have calmed down on the formula and you managed to get some decent sleep. I can tell when my mast cells are flaring up cos I start peeing at night again!

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    2. bertieandme Post author

      I had time to visit your blog tonight and it’s great – you really should open it up to the public as I’m sure lots of mast cell people could relate 🙂

      I have such empathy for your struggle with doctors and hospitals. My last inpatient stay was 15 years ago and I swore I’d never do that again – it was so traumatic I didn’t see another doctor for the next 10 years!! Your Dr A truly was an arsehole!!! I’ve lost count of the number of arseholes I’ve come across, who kept telling me I couldn’t possibly be reacting to all the drugs and I just had an anxiety disorder. I felt like dying from anaphylaxis just to spite them lol!

      Hope you get to have your tryptase test soon – what a cockup that’s been!

      Jak x

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      1. kneillbc

        Thanks Jak for the vote of confidence. I will open it up- I’m going to go through and remove a few identifying details- change the kids names, that sort of thing, before I make it searchable. I know how helpful it has been for me to read yours and others’ blogs. It’s made it easier for me to say ‘No, I know it’s possible, I’ve read others first-hand anecdotal stories of exactly xyz….

        I have to admit, I changed a LOT of the doctors minds in hospital when I had an anaphylactic reaction to the potassium pill. It was right there, the nurse saw my throat closing up, there was no doubt about it. It wasn’t much fun, but there’s nothing like seeing to believe… My family doctor has been amazing all along, but even she saw things differently when I went into anaphylaxis at her office. She had started my appointment, gotten called away. Then, a pharmaceutical rep brought in teriyaki lunch, and set it up in the lunch room (next to the exam room I was in). I interrupted the receptionist, said I was going into anaphylaxis. By the time my doctor was back, I couldn’t breath- my lungs had gone into full ‘lock down’- asthma spasms plus wheezing like crazy. My doc even said- “But I saw you a minute ago- you were fine!” Then she said “I guess that the point isn’t it!? Be right back with the Epi!” And of course, after the Epi, Benadryl etc., I was fine, they had an ambulance pick me up and so forth. Like I said, even though she believed me wholeheartedly (she’s known me for 15 years), seeing it happen really shifted her thinking subtly. She was able to focus less on the abdominal pain (which, while it’s painful and has to be managed, isn’t the scariest part by a LONG shot), and more on the allergy piece. Of course, it still isn’t solved yet… But I gather that I’m not the on,y one where people say ‘but it can’t be’ for a long time before they finally admit ‘it must be, there’s nothing else to explain it.’

        This last hospital stay had its frustrations, but it wasn’t too traumatic. The first one- it was traumatic. It took me a long time to realize and admit that, and then a long time again before I was willing to go thru it again. At least it sounds like things are moving along faster then they did with you, probably because I’ve been able to learn from those who have gone before. Thanks again!

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  2. Shirley Phillips

    Thanks for the insight into your mast cell issues. I have also had the same issues with my bowels and now have reflux but don’t stop burping….all day, on an empty stomach or full… So annoying!

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  3. Marley

    Has anyone asked their GI MD to stain for mast cells in the GI tract? They don’t routinely check for CD 25 or CD 117 mast cells which are malignant. For over a decade I had a misdiagnosis. I may have Mastocyctic Enterocolitis.

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      1. Marley

        What is NHS? What is it like? Why would they think a patient is crazy? If a disease is rare and the Doctor has not seen it before, pull up an article from a professional journal and show it to them. Marley

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        1. bertieandme Post author

          The health care system in the UK is state run and pretty much rubbish Marley 😦 It’s virtually bankrupt and most of the consultants are totally arrogant and think they know best. If a patient suggests something to them they REALLY don’t like it and make you feel stupid for bringing it up. Very little is known about mast cell diseases in the UK and finding a doctor who’s even interested in looking for mast cell issues is virtually impossible x

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          1. chrissy

            Exactly. I’ve conversed with lots of people in U.S. And they say go tested for this and this. In the UK it is just not viable. Had ibs for years, ic since last September and now almost certainly mcad, but impossible to get a diagnosis. The nearest is my doctor saying I had mast cell degranulation due to massive reaction to prescription med I April. Feel so poorly with all this histamine creating havoc in body. But nowhere to turn to. On h1 and h2 blockers to try to help. That’s it. Cried myself to sleep last night. So frustrated with it all.

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            1. Jak Post author

              I really feel for you Chrissy and remember the frustration well from my early days of MCAD. If you can’t afford to see Dr Seneviratne in London it’s almost impossible to find an MCAD doctor on the NHS, or someone even willing to admit the disease exists let alone try and treat it. I wish I had a magic bullet for all of us. Hugs. Jak x

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  4. E. Milo

    We are two peas in a pod. I’ve been constipated my whole life, used Senecot always as a teenager, was diagnosed with IBS, was told I didn’t have endometriosis because my ultrasound was normal and periods were regular and not heavy- even though the pain caused me to collapse and lose consciousness and go to the emergency room multiple times. I also have the right side abdominal pain and ALSO declined the laparoscopy because I won’t do meds and I certainly won’t let anyone do a lumbar puncture again!
    I’ve had some abnormal tests, but then the doctors don’t know what to do about them, so what’s the use in getting tested?!

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      1. E. Milo

        It actually is really comforting to befriend other freaks. ME aside, I’ve had weird things like this my whole life and just downplayed them so I didn’t sound “sickly”. You really make me think that I’ll be out and about in the world again one day!

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        1. bertieandme Post author

          Of course you will! It took me 10 years but I got there in the end. I also have a friend who became bedridden with ME at the age of 15. Very very severely affected and bedridden for about 15 years. She’s now 32 and literally last month moved into her own flat for the very first time 🙂 She still uses a wheelchair and needs lots of help daily but is doing little bits of cooking etc and improving all the time!

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    1. chrissy

      Totally agree. Even if you finally get a diagnosis it doesn’t change your situation. All that happens is your wallet is empty due to cost of tests, cause it will have to be done privately if you can find anybody knowleageable enough.

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  5. Chrissyc

    Unbelievable. Your site and blog has me fascinated. I have ibs for over 20 yrs. interstitial cystitis for a yr. umpteen allergues to meds and in the past 4 weeks after 5 b12 injections massive reaction to them. Covered in hives. Now taking fexofenadine – an anti histamine at 180mg and although hives not gone, my bladder has calmed considerably. I thought i was wheat and gluten intolerant making ibs bad, so gave that up a while ago, but i think i have histamine intolerance. Loads of symptoms like in your blog – love your pooping section! It is just me. Thank you so so much for joining up the dots. Keep well.

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    1. Jak Post author

      Thanks for taking the time to comment Chrissyc and I’m glad my blog has been helpful 🙂 . It’s fabulous when you finally get that “a ha!” moment isn’ it and your symptoms actually make sense at last! Jak x

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