I saw my GP a couple of days ago to discuss my continuing reflux, breathing issues and cough.  When I described my symptoms, in particular the feeling that I have a piece of sharp toast constantly lodged at the bottom of my oesophagus, she said I’ve almost certainly developed a hiatal hernia due to my faulty collagen making the sphincter to my stomach weak, which is what I’d already concluded myself (hernias of all descriptions are very common in EDS).  Part of my stomach is pushing up through my diaphragm and into my gullet allowing my stomach contents, including acid, to reach places it wasn’t intended to.

She said I could go for an endoscopy to confirm, but the thought of having another tube down to my stomach without any kind of sedation, as the drugs set off my mast cells, isn’t appealing.  There’s also the fact that, due to my pressure dermographism and the force used to get the scope down, the last one caused my throat to swell to scary levels.  I asked her if the treatment would be any different if I had a confirmed hernia diagnosis and she said no.  Suffice to say I declined the scope.

She wants to switch me from my current H2 blocker to a PPI (proton-pump inhibitor).  I resisted for several reasons:

  • Due to my horrendous drug reactions it’s nothing short of a miracle I’m tolerating the H2 anti-histamine.  I really feel I’d be pushing my luck trying a PPI.
  • PPIs cut stomach acid by 80%.  There is, therefore, hardly any acid with which to digest food.  This can lead to nutrient deficiencies, and in extreme cases malnutrition.  Due to my EDS I already have slow GI transit – taking something which would probably make that worse doesn’t seem wise.
  • Even if tolerated, PPIs can have some wicked side effects.  I should know, as both my parents are on them (my Mum having had GI issues for years probably due to undiagnosed EDS).
  • I’m only 46 years old.  The thought of living on PPIs for the next 40 years isn’t appealing.

However, we both agreed that having stomach acid leaking into my lungs can’t be doing a whole lot of good.  I’m already on 4 Tagamet tablets a day, so can’t really increase those.  I also take Gavison before bed, and have my bed-head raised 6″ off the floor.  The only thing she could suggest is giving me co-magaldrox which coats the stomach and gullet to stop acid from burning so much.  It’s a bit of a sticking plaster over a gaping wound but I’m not sure what my other options are.

You can have surgery to correct a hernia, but it’s not always successful.  It’s also a big operation and considering I react very badly to anaesthetic, and can’t tolerate any kind of pain-killers, isn’t something I’m desperate enough to consider just yet.  I may, however, end up on the PPIs as living with this kind of constant pain, cough and the feeling that Nelly the Elephant has taken up permanent residence on my chest is very wearing, not only physically but emotionally.

I’m not well enough to work, but volunteer from my bed when I can (which I treasure as it’s not something I’ve always been well enough to do).  I produce my Church newsletter each month (which goes out to 7 parishes) despite not being religious myself; am a volunteer board member of the 25% ME Group, a UK charity which solely supports people with severe M.E. (as against the wider disease Chronic Fatigue Syndrome); and crochet blanket squares and garments for AIDS orphans in Africa through Knit-a-square when my hands will let me.  Having not had much help and support throughout my own life, and particularly while I’ve been ill, it’s doubly important to me that other people not feel abandoned, alone or isolated and this is my chance to help in a teensy tiny way.  As Oprah would say: pass it on x

Photo of crocheted children's vests


4 thoughts on “Hernia

  1. denise

    so weird that i saw this today, because i was suffering with MY hiatal hernia for the past few days. i fixed it yesterday and wrote about it on my facebook page. i take digestive enzymes with every meal, sometimes a little apple cider vinegar when my gut it really angry. my gall bladder acts up often, as well. however, my stomach likes to pop up and out and, thanks to my chiro, i’m able to pop it back where it belongs. i’ll just copy and paste what i wrote for my status, as i find the timing creepy.
    “i’ve been dealing with my hiatal hernia for a few days. it sucked until i figured it out. i was having more than normal narcoleptic fatigue along with constant nausea, dull upper stomach pain, ulcer-y like feeling, loss of appetite, gall bladder flare-up, torso and flank pain, etc. it took me the third day to figure out what it was, (as it had been many months since it’s bothered me). so once i started working on it, it took only about 3 hours to get it back to normal. ~
    i massaged deeply under my xyphoid process to loosen up my spasmed muscles, drank a cup of hot tea and jumped up and down several times. i knew it was working when i started belching after jumping. i took a valium and waited for it to relax my muscles, and then (while standing), i took a small vitamin bottle with rounded edge bottom (my hernia ‘tool’) and gently dug it deep into the cavity under my sternum and slowly pushed down towards my stomach. i did this about 4 or 5 times over a period of an hour, took a pain pill, and then slept again for many hours.
    then, i was fine. ta dum! pretty cool, huh? thanks to my chiro for showing this to me.
    yeah, it was a little sore around my xyphoid process (which is easily angered anyway)… but my gut is completely back to normal, pain is gone, stomach is back in its proper place, and my appetite is back.
    ~ it kills me to see people suffer with such an easy thing to correct, when they know it’s just a hiatal hernia. doctors with tubes and acid reducers and surgery, etc. ARGH!”

    anyway, here’s a little video of a chiro doing a similar maneuver on a patient. (not my chiro). if you do a search, you’ll probably be able to find a technique that works for you. the thing is to relax the muscles (why i take my valium) so the diaphragm allows the stomach to drop back down, use gravity, and take it slow.

    p.s. i feel i have so much in common with you and i appreciate your updates, even if i dont respond often. if we lived closer (i’m in colorado in the US), i’d like to know you, cuz i think we’d be friends.


    1. bertieandme Post author

      Hi Denise

      Thanks so much for taking the time to provide this information. I’m thrilled you’ve found something which works for you 🙂 I can’t do any of the drugs you mention as they are all mast cell de-granulators for me, but I have been doing the massage for some weeks now as I found a youtube video about it, and the jumping up and down thingy. It’s helping a little bit maybe. Obviously my inability to totally relax my muscles might be hindering my progress. Jak x


  2. Kathy

    Hi, I too suffer with a Hiatal Hernia. When mine is out of place due to vomiting or coughing I go off solid food, I fast usually in about 18 to 24 hours I start feeling it move during this time I sip warm not hot water or ginger water. I take VERY small amounts of Xanx to help my muscles relax. My Doctor’s have refused to do surgery it’s too close to my heart. not worth the bigger risk, the Chiropractic moves are helpful. Good luck hope you are back to feeling better real soon. HUGS



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