Abdominal pain

I’m starting to get worried about my gut.  Actually, that’s a lie.  I’ve been worried for a while now.  For several months I’ve had chronic abdominal pain.  At first it came and went and, though it was unpleasant, it didn’t bother me too much.  I get all sorts of random symptoms that come and go and they eventually settle down.  Not this time.  The pain, I have to admit to myself, is getting worse.  It’s constant and for 3 months now it’s been waking me up from sleep.  Last night was awful and I am a wreck this morning.

I am in pain from the middle of my oesophagus to my backside.  My back is in spasm from my shoulder blades to my tailbone.  I feel permanently sick and, though I get hungry, I’m full quickly.  The only good news is that my poop is fine, still huge, normal colour, no signs of blood, no constipation or diarrhea and I go nearly every morning after breakfast.  It is, however, about the only thing in my entire digestive tract which appears normal.

I know my oesophagus and stomach are being eroded by acid but when I can’t take H2 antihistamines or PPIs treatment for my chronic GERD is almost impossible.  High dose Gaviscon does help but doesn’t eliminate the problem.

I have so much wrong with me that the abdominal pain could be thirty different things: my MCAD, inflammatory bowel disease such as diverticulitis or colitis, gallbladder issues (my Mum had hers removed in her forties after 10 years of indescribable stomach pain), nerve impingement, hernia in the bowel wall, stomach ulcer……the list is endless.  It could even be a back issue and it’s referred pain or it could be down to my endometriosis adhering to the bowel walls.  Trying to get to the root cause of the pain is going to be a bloody nightmare and treating it with my drug allergy history probably impossible.

Ehlers-Danlos can cause a whole range of gut issues.  MCAD obviously causes gut pain.  Many people with M.E. have gut problems, the reason for which can usually never be found and get put down to “IBS” (a non-diagnosis if ever there was one).  Endometriosis can also affect the stomach and bowel.  It could be all four or totally unrelated and something else entirely – how on earth is the doctor going to know what’s causing what?!

The pain isn’t worse when I eat.  In fact, it’s worse during the night and first thing in the morning when my stomach and bowel are fairly empty, work that one out!  It’s proper getting me down now, especially as it’s affecting my sleep 😦

Please can I not have any comments telling me to cut out dairy or gluten or do a FODMAP diet.  If only my health problems were that simplistic.

I think I’m going to risk taking some antihistamines and see if I can tolerate them.  I started reacting to both H1s and H2s last year so stopped them, but it may be that now I’ve had a break I can tolerate them again (I started reacting to Gaviscon in 2015 but am taking it again fine this year).  If antihistamines help at least I’d know it’s probably my MCAD that’s playing up (I am super itchy atm).  I’m also still trying to pluck up the courage to try a different brand of PPI for my acid but am such a chicken when it comes to trying new meds after having so many awful reactions.

I suppose in some ways I’ve been lucky.  I had no serious gut issues until I was 45 which, considering all my illnesses can cause stomach problems, is fairly miraculous.  I’d better make an appointment to see my GP (for which I may wait 6 to 8 weeks), who will refer me to Gastro at the hospital (for which I may wait 4 to 6 months).  So hopefully I might get to see a Consultant by October!


10 thoughts on “Abdominal pain

  1. Livvy Woodburn

    Hi Jak,
    So sorry your stiffening with GI so much you feel you need additional intervention.. we try & manage it independently for so long I know because of the complexity & lack of real specialist support.. the getting the GP to realise this & refer & then all the waiting is depressingly tedious. I know this isn’t a health forum but I just wanted to tell you of a GI doctor in London on the NHS who understands
    EDS/PoTs/Mcad (Dr.Zarate-Lopez @ the UCLH). If you have no luck locally with GI docs tgat is.. i had good experience with her & her letter back to GP was very comprehensive with a longterm treatment plan. Best of luck with it all xxxxx hope you get some answers & relief somehow xxxx


    1. Jak Post author

      Thanks so much for the info Livvy. My PCT wouldn’t pay for an out of county referral until I’ve tried the Gastro at my local hospital, but I’ll keep the doctor’s name on record for the future. Jak x


  2. Glo

    Don’t know if you have tried this or want to. For my mcad I went through all the usual belly drugs which did nothing. When I finally went to my immunologist she suggested claritan. Generic is loratadin and is usually used for sinus allergies. Works wonders for my stomach. You may have tried this but thought I’d send this on as maybe some of your readers will find it helpful. Hope you can find relief with what has helped you before.


    1. Jak Post author

      So glad you found something which helped Glo. I found the same – H1 antihistamine really helped my nausea, but although I tolerated it for over a year my mast cells suddenly rejected it. Now I’ve had a break I’m thinking of trying a different form of H1 but will have to get my body used to the H2 I’m trying first before introducing something else. Jak x


  3. Lanie

    Jax…sorry to hear you are battling the stomach pain. I find for me I do notice certain foods make it worse….usually Brussel sprouts, broccoli, cauliflower, coffee, peppers or nuts. When it’s real bad I elevate my pillows and use a heating pad for my back. Foods that help….oatmeal…yeast free bread/toast…for some reason the oats help the acid. I can’t take drugs either and I just have to ride it out. Sometimes I will take a Pepcid when it’s real bad. I take half the dose and only once every couple of days since it’s the build up of drugs in my system that messes with methylation and makes problems worse. The full quick feeling is dyspepsia and very common with MCAD.

    Liked by 2 people

  4. d

    Oh Jak I’m sorry to hear you aren’t doing well. I hope you find something that gives you some relief. Sending you positive thoughts.


  5. Marina

    Jak, when you have pain on empty stomach and food you eat gives you some relieve it often an indicator of too much acidity. It is very classic symptom of the acidity.

    If you want you could try all cooked vegetables, I do not know if you eat anything raw now like cucumbers and lettuce, no salads.
    May be cut all fruits and berries for a couple of weeks.
    Some less disturbing cooked
    vegetables like sweet potato,
    carrots, zucchini , beets if you tolerate it. Anything softly cooked . No even
    vegetable broth….


  6. That Other Jean

    No advice, just sympathy–that sounds beyond miserable. I hope you can get medical treatment from someone who understands your problems much more quickly than you think you’ll be able to.



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