Gastrointestinal problems

I have several issues with my gastrointestinal tract so I thought I’d cover them all in one post, which has ended up stupidly long so you may want to make a brew before you start.  On the other hand, if you’re squeamish, you may wish to look away now 😉

Bowel

I had my first issue with pooping when I was a toddler.  My earliest childhood memory is being pinned down on the bed, screaming blue murder, while my Mum shoved Vaseline up my back passage (be thankful we now have modern laxatives for children).  It was shit (excuse the pun), made me feel like I’d been physically assaulted and, to add insult to injury, it still didn’t make me go to the loo.

When I was a child I didn’t much like food and was a “fussy eater” consequently my diet wasn’t as good as it could have been.  Knowing now I have Ehlers-Danlos and how that affects your gastrointestinal tract, plus my lack of soluble fibre, it’s no wonder I couldn’t poop.  I was permanently constipated in the true sense of the word, ie my poo was small, pellety, hard and only came out occasionally with me straining til I thought a vein would burst in my head.

At 21 I became vegetarian and everything changed.  For the first time in my life I started to enjoy food, ate loads more fruit, veg, beans and pulses and my poop became better in consistency.  Sadly though it still didn’t come out easily and I only managed a bowel movement about twice a week.  I was eventually diagnosed with a “lazy bowel” – in other words they had no clue why I couldn’t shit.

Fast forward 25 years and my change of diet to ‘low histamine’ following my MCAD and HIT diagnosis and my use of H2 antihistamines.  Finally I am able to poop almost normally.  I go virtually every morning and my poo is normal in consistency.  Well, as normal as it gets for someone with EDS and an overly stretchy bowel – I actually produce crap the size of elephant dung and when someone accuses me of being full of shit they have no idea how accurate they are 😉  I no longer strain when I go to the loo but it is a bit like giving birth, and I sometimes have to flush the loo three times before my monster poo disappears!

My endometriosis and many burst ovarian cysts have caused adhesions to my bowel particularly on my right hand side and this also affects my ability to poop.  Add to this a suspected floppy ileocecal valve, where faeces passes from the small intestine to the large intestine, and my poo does has the tendency to get stuck there.  It’s painful and I can actually feel (and often see) the long sausage lump of poo in the lower right of my pelvis sitting there waiting to find its way out!

Due to the enormous size of my poo I’ve now developed piles, which are swollen veins which appear either inside or outside of your anus.  They itch, and can be sore, but at the moment don’t cause me enough problems to want to do anything about them.  I also have various types of abdominal pain, from all over colic through to random sharp pains, but the cause is anyone’s guess.

Despite all this I’ve never been windy, either up nor down.  One has to be thankful for small mercies 😉

I still have issues with my bowel but I’m amazed at the difference a low histamine diet and histamine-reducing medication has made to my toilet habits.  Who knew the havoc histamine was creating and I’m sure no Doctor would believe that my lifelong ‘lazy  bowel’ has been largely cured by simply reducing the amount of histamine my body produces!

Bladder

Speaking of histamine, reducing it has made a massive different to my wee habits.  I’ve always peed a lot, but in the several years leading up to my MCAD diagnosis I weed for England, often going 3 times every hour and having to get up three to six times during the night.  Reducing the histamine levels in my body has changed my life and I now feel I pee almost normally.  In fact, I know when my histamine levels are high because I start peeing more, including during the wee small hours (wee, get it?  *groan*).

People with EDS have stretchy bladders which you would think would hold more therefore you’d go to the loo less, but I feel it somehow causes me to wee more often than most.  I also do the longest wees in history as my bladder holds vast quantities of liquid.

Reflux/GERD

In 2006 I developed a chronic cough.  I coughed so much at times I honestly thought I would die.  I had all sorts of investigations – xrays, scans, peak-flow and allergy tests – and everything came back normal.  I now know I had silent reflux and that acid was escaping from my stomach up into my oesophagus and being inhaled into my airways producing walking pneumonia.  With silent reflux you have no indigestion, no typical burning pain in the stomach or chest, just a cough for which no reason can be found.

After about 4 years of coughing I developed upper back pain.  It felt like a burning, muscular pain right between my shoulder blades and was so bad at times I could barely sit upright.  Nothing I did alleviated it and it became increasingly difficult to live with.  At the time I just put it down to my EDS ligaments but I now know this was acid burning the back of my oesophagus.

A couple of years after the back pain started the typical pain of reflux began.  My stomach felt sore and inflamed, and the pain in my oesophagus right between my boobs was horrendous.  It went all the way through to my back and felt like I was being stabbed by a bread knife every second of the day.  I developed intense and chronic nausea which also really got me down and had the most awful taste in my mouth all the time.  As it progressed I could actually feel the acid rising into my throat burning the flesh – it felt like I was being boiled alive. I wouldn’t wish severe reflux on anyone.

I ate Rennies like they were smarties and knocked back Gavison by the truck load.  I slept with the head of my bed lifted 6″ off the ground, cut out fizzy drinks and tried all sorts of different diets which didn’t help one iota.  Unlike other people’s experiences of GERD which I read about online, my pain didn’t come and go – it was constant, even waking me up from sleep at night.  I couldn’t tie it down to eating any particular food and it was actually worse when my stomach was empty.

I had all sorts of investigations which were largely normal.  No ulcers, no H-pylori infection, no bacterial overgrowth, no hernia, no delayed stomach emptying/gastroparesis.  The only thing they did find on endoscopy was 11 stomach polyps which all thankfully turned out to be benign and gastritis (ie stomach inflammation).  In the end I didn’t really get a diagnosis other than chronic GERD of unknown cause.

I manage my pain with H2 antihistamines, which definitely helps with the nausea and stomach pain but doesn’t do much for the esophageal/back pain which is still a constant.  I also continue to have the awful taste of acid in my mouth day and night and a sharp, stinging pain where my stomach meets my oesophagus which feels like I have a permanent piece of dry toast stuck there.  When it’s really bad, the burning stinging pain radiates up into both shoulders and down the inside of both arms and goes from the bottom of my neck to my waist at the back.  I also continue to have a chronic cough, though nowhere near as bad as it was pre-medication, and if I breathe deeply my airways feel constricted and irritated.

I suspect the mast cells in my stomach are producing too much acid, but quite how it’s finding its way into my oesophagus is anyone’s guess.  Although I don’t have a large hernia maybe my diaphragm is floppy due to my EDS and just doesn’t do a good job of keeping my stomach contents actually in my stomach?  Or it could be something else entirely none of us have considered.

I am having an ultrasound on my gallbladder shortly, as bile backing up from the gallbladder can mimic the symptoms of GERD.  Interestingly, my Mum developed horrendous indigestion in her early 40s.  She describes the pain as the kind that “makes you bang your head against the wall” and an abiding memory from my teenage years is listening to her pace the floor groaning night after night after night for nearly a decade.  She was told she was being “dramatic” and needed to see shrink – after all, she was female and we all know women are just hysterical hypochondriacs don’t we?!  Eventually she was given a gallbladder scan, which showed an organ so diseased it had shrivelled up to a black dot and she had to have an emergency operation to remove it.  I clearly remember the Surgeon saying “I’m amazed you didn’t develop septicemia and die”.  My Mum never had gallstones and was the 1 in 20 people who develops chronic gallbladder issues for no obvious reason (except we now know she almost certainly has MCAD which is, surprise!, implicated in gallbladder disease).

Difficulty With Swallowing

When I became severely affected with M.E. I constantly felt like I couldn’t swallow properly.  My muscles felt floppy and unresponsive and I always felt like a had a large, swollen mass in my throat which I had to swallow past.  Naturally all tests were normal and no-one’s ever been able to tell me what this is all about.

As I started to improve this feeling lessened but has never gone away.  Even as I sit here typing this post my throat feels hugely swollen and with each swallow I feel like I want to gag.

Sore Throat

Needless to say, if you have M.E. you will inevitably have a chronic sore throat.  I continually feel like I have some kind of infection though my throat looks entirely normal.  The more I do the more my throat hurts, and if I way over-do it (either mentally or physically) I feel like I have tonsillitis.

This kind of symptom is why I get irritated when the focus for M.E. research centres on ‘fatigue’.  It’s so obvious people with well defined M.E. have some kind of immune issue going on, and the ‘fatigue’ is just a by-product of that.

Oesophageal Spasms

When I was severely affected by M.E. I developed what are termed ‘oesophageal spasms’, in other words the muscles in the oesophagus cramp which, for me, made me retch and retch and retch…….and retch some more.  It wasn’t related to feeling nauseous, I didn’t vomit and they were often worst in a morning just after I’d woken up for reasons I’ve never understood.  Once I could manage a warm drink they’d sometimes settle down, but there were days when they wouldn’t and I’d be retchy all day.  I still get the spasms, although they’re occasional now rather than an every day occurrence.

When I have a mast cell reaction to food or drugs the spasms are severe and I can retch for hours on end.  The chemicals released when mast cells activate causes muscles to contract, so I wonder if my spasms have been mast cell related all along?  If so why do they happen on waking though?  It’s still a puzzle and, although I don’t ever worry about it, it’s still decidedly unpleasant when it happens.

Nausea

I’ve always been a sickly person, even from childhood.  I suppose with everything that’s gone on in my gastrointestinal tract over the years it’s no surprise, but it’s something you never get used to.

My bedridden M.E. years were plagued by severe nausea, though this only occasionally became actual vomiting and that was usually because my oesophageal spasms/retching made me bring up bile rather than any kind of projectile puking.

These days I feel nauseous when I do too much (like tonight!) and if my throat feels swollen (like tonight!) – even healthy people feel sick if they’re swallowing past a sore, swollen-feeling throat.

On the whole, my nausea hasn’t affected my appetite though and I can eat a 2 course dinner feeling sick to the very pit of my stomach – go me 😉

Appetite

Speaking of which, my appetite has always been excellent.  No matter what has been going on I’ve still loved my food, which is weird for a kid who never ate!  When my HIT/MCAD exploded and I started reacting to everything I put in my mouth it was one of the lowest points of my entire life and trust me when I say I’ve had a few low points over the years.  No matter what else in my body had gone awry I’d always looked forward to my meals (and snacks, and sweets, and anything else I fancied!).  To suddenly be terrified of food and not be able to eat many of the things I loved was torture.  I still think it’s unfair of my body to inflict this on me and to take away the one thing I had left which I enjoyed 😦

Dental

At the age of about 9 I had to have four of my adult molars removed as I had a vastly overcrowded mouth.  I didn’t know it at the time but it’s a classic sign of Ehlers-Danlos Syndrome, along with my high roof palate.

When my M.E. was really bad my teeth ached.  It was like having throbbing tooth ache throughout my entire mouth and didn’t respond to any kind of painkillers.  I had similar throbbing pain in other parts of my body, particularly my knees for some reason, so I assume it was just part and parcel of the pain of having M.E.  As my illness improved the pain went.

Ehlers-Danlos pre-disposes you to cavities and early gum disease and I have both.  All my adult molars were filled by the time I was in my mid teens and now I’m nearly 50 I’m at the stage where they are all having to be replaced, alongside new bits of decay.   I am already ‘long in the tooth’ and have pain in my receding gums and actual teeth.  Smiling when it’s windy is no longer fun and eating anything cold makes me wince!  I had my first adult tooth removed last year which actually took a lot of coming to terms with.  You’d think after everything I’ve been through it would be no big deal, but it affected me emotionally in a most unexpected way, particularly as I didn’t have the tooth replaced and instead just have a huge gap and now can’t really chew on that side.

Conclusion

M.E., EDS and MCAD can all cause gastrointestinal symptoms so most of the time it’s impossible to know which disease is causing what.  Please don’t tell me to change my diet – I’ve been ill since the day I was born and there isn’t a diet around that I haven’t dabbled with at one time or another including gluten-free, dairy-free, sugar-free and joy-free!  Having to eat low histamine for the rest of my days is bad enough, and I’m already a vegetarian who can’t eat soya, so I’ve no intention of embarking on any more restrictions particularly as all the diets I’ve ever tried (bar low histamine) have not made one ounce of difference to my health.

Obviously I’ve tried drugs to help with my symptoms and one by one have become allergic to them all, in particular the medications used to treat nausea, so I use my hot water bottle for virtually all my gastro problems and it probably helps as much as anything.  I also have some Sea-Bands which sometimes takes the edge off my nausea as does lemon verbena tea.  Other than that I just have to get on with it, which I swear should be engraved on my headstone:

“Here lies Jak.  She suffered but she just cracked on” 😉

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3 thoughts on “Gastrointestinal problems

  1. d

    Yep the weird and mysterious world of our gut. I have had a stressful couple of days and my gut is certainly letting me know about it. This is definitely a change since my mast cells started going crazy. You tolerate it all, and there is A LOT to tolerate, with grace and humour, and we readers learn stuff along the way. Thanks for always being so open. I love the epitaph : )

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  2. Laetitia Lalila

    Hi Jak, I know there is not one thing that I can say that could help improve your suffering, only that I’m here for you, I hear you. It must be terrible to have so much pain daily and frustrating to be so misunderstood my the medical community!

    I can relate with many of your symptoms, my gut is terribly inflamed from my stomach down to my bum, I have muscle and joint pain, endometriosis, raging insomnia and spend most of my time curled up in bed, agonising in pain. Your posts keep me company, you seem so much stronger than I am, dealing with even more symptoms, so it’s always inspiring to read your blog.

    Wish you well.

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    1. Jak Post author

      So sorry to hear you have similar symptoms to me Laetitia. We all cope in different ways. Trust me when I say I have my bad times like everyone else, but I’ve had many years to come to terms with my diseases and just try to enjoy life despite them – easier said than done some days! Jak x

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