Undiagnosable Abdominal Pain

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Most of my life I have suffered from abdominal issues. In my early childhood, I had to consume special products in order be rid of baby colic. Growing up, I had dirreaha frequaently, but it was not of a debalitiating sort.

4-5 months ago, I awoke in the night with stomach pain. It was managable but as time passed it became unbearable. I felt as if I had dirreaha, but I truly did not. Almost like a constipated form of dirreaha. The episode lasted for a week, during this period I was barely able to eat or drink. Sitting and laying made the pain worse, so I stood and paced barely getting any rest. No medicines I took helped and I took many. Common pain relievers all the way to over the counter abdominal medicines (Anti-dirreaha and so on...) None helped. The pain, it was constantly there, this horrible cramping that shot into my stomach making me naseous. The cramping stayed pretty constant like with dirreaha, I felt the sudden cramping had a little bit of rest and another cramp started. The problem was, these cramps, I couldn't bear them. I have never felt such a strong and debalitating pain.

Since, I have had 5-6 of these debalitating episodes. Later on I introduced an anti-spasmatic, which helped prevent the cramping. Instead of struggling for weeks for it to leave, the cramping would go away within a few days.

Over the months my symptoms have changed but they all seem to reoccur eventually. I have had constant dirreaha over the past few months (no change in diet able to help; I cut out allergens, dairy and gluten, and even attempted the FODMAP diet), dizziness, weight loss (over 20 pounds), abdominal spasms on the right side, severe abdominal pain leading to many ER and doctor visits, menstrual problems (symptoms shifting with periods and pain while urinating while menstrauting), excessive belching, abdominal fullness, lack of appetite, pale to multi colored stool, mucus (a tiny bit of blood) and odd white particles appearing in stool (some look stringy almost worm like, others clumped and inbedding in the stool, while even others look like a fungus; if you could picture a white fungus on the stool), pain after eating, pain when I don't eat and leave my stomach empty.

As you can probably tell I have had a wide range of symptoms. I have seen many doctors and known seem to be able to diagnose me. One doctor labeled me with FAPS and sent me on my way, stating to "get over it". I have tried to, I have done many things to become healthy again. I try to exercise consistently when I am able to get out of bed. But my social life and all other aspects have died, I am no longer able to leave the house due to the pain. I have been tested for many things such as common parasties, urinary track infections, pregnancy, and other issues. I have had scopes which have come back clear, other than spotting some bleeding in my stomach which my doctor was not too concerned of. To the medical eye, I seem to be healthy.

Has anyone here had anything similar, if not have you heard of any disorders that fit this description? 

1 like, 31 replies

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31 Replies

  • Posted

    First of all may I kindly ask, which anti-spasmatic medication you took that helped since wether Mebeverin (Colofac/Coleste) nor Hyoscine (Buscopan) does anything for our 24/7 abdominal cramping.

    Never take anti-diarrhae drugs please if you don't have really diarrhea, especially if they are meant to slow down gut motility (like loperamide/Imodium).

    What is FAPS please?

    When you have those 'white bits' in stool again, take a sample and bring it in to doc to make sure what it is. I guess the stool sample which was parasite/bac negative was not with white bits.

    Did you get a 'Calprotectin' tested in stool, an easy, non invasive, not too expensive (I had to pay privately) test?

    It gives a hint for inflammation of the intestine since the small intestine cannot be reached with normal gastro- and colonoscopy. (of course it can be false negative, but is rarely the case. If it was positive, one can push for more tests of small intestine.)

    There is the pill camera gastroscopy to assess the small intestine by real pictures if something could be up in there, that can be missed by MRI or CT enterography. (we still didn't get that one even severe cramping has persited for more than a year)

    There are two other not directly primary GI conditions that do cross my mind (since we are on that track now) and can cause abdominal pain:

    one is a few forms of porphyria

    the other one is ehlers danlos syndrome (EDS) mainly hypermobility type, that in some cases can affect the GI system (with no cure unfortunately) since collagen is everywhere needed to function properly.

    Both conditions are genetical (the later cannot be tested, only other EDS forms, but the hypermobility is clinical testing if joints are hyperflexible - ours are), hence not cureable and often excrutiating life long. The first one (porphyria) can be tackled with food (glucose, potassium, carb diet) and medication iv.

    The problem (as we experience too): to get tested correctly and a doc knowing this stuff to confirm or exclude....and the waiting period if you finally did get referred.

    Just some ideas for you to read through, if it would fit at all and if you got tested already or not.

    All the best

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    • Posted

      No, I have not had a Calprotectin, MRI, CT enterography, or pill camera.

      Yeah, the parasitic test had samples that did not contrain the white material. I will have to ask my doctor if she would like a sample.

      Can you further explain porphyria?

      Also, thank you so much for posting. smile

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    • Posted

      First I would go for stool caprotectin. Go from there.

      I don't have porphyria and there are many different types as there are many enzymes that can be effected (genetically) and cause different metabolites to build up in the heme cycle and cause symptoms. 

      It's very rare, hence one of the last ones to be tested.

      I would look for those (in internet), that cause severe abdominal pain.

      ALADP (Aminolevulinate dehydratase deficiency porphyria), AIP (Acute intermittent porphyria), VP (Variegate porphyria), HCP (Hereditary coproporphyria).

      It seems constipation goes more with it than diarrhea, but it is also possible.

      Take your urine when you have pain, put it in an (open) jar outside under sun, min 24 hours (so 2-3 days sunlight, we do have nights). UVA changes the colour to red/purple.

      Good luck!

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  • Posted

    You may have an overgrowth of yeast in your body.  Take probiotics.  Chamomile tea and ginger also help the tummy.  Did you get your liver tested?  The liver has a lot to do with digestion. A medication called Diflucan kills yeast in the body.  You only need to take one pill.  Hope you feel better soon.
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    • Posted

      Yeah, my liver has been tested and it is well. smile I will ask about the yeast problem, it's definietly worth a shot. Thank you!

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  • Posted

    If anti spasmodics helped you, you may have IBS especially since all your tests have been negative.  Periods tend to make IBS worse.

    Your symptoms do sound like it.  However if the white fungus appears again,  I would get a sample tested and ask again about the bleeding.  Ask for a fecal calprotectin test.

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    • Posted

      My GI ruled out IBS a long while ago. He stated with IBS, you usually get relief after a bowel movement. I have never gotten said relief from going to the bathroom. The pain and cramping sticks around. As for periods, my dirreaha actually lessens on my period. It is the oddest thing, before any of this I always had bowel issues on my period. But now... My direaha and spasming stops on it. Could this be an odd form of IBS?
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    • Posted

      Which spasmolyctic meds helped please?

      and what is FAPS? (the only definition I find is nothing to 'get on with'wink

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    • Posted

      It is possible because IBS symptoms vary widely from person to person.  However, most IBS patients do get relief after a bowel movement and tend to get more pain while on their period.  My IBS was worse at the time of the month when my stomach woes first started.  Now, everything is a lot better.
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    • Posted

      Sorry for the delayed reply.

      The medicine that seems to help some is Hyoscyamine Sulfate.

      FAPS is functional abdominal pain syndrome. My doctor described it as pain with normal functioning of the bowel. The exact opposite of  IBS, pain with no change in bowel activity. I have researched some online and it seems very contradicting to my symptoms. But who knows, I may have just been slapped with a label.

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    • Posted

      What have you done in order to get in control of your IBS?

      And the pain you were in, what was it like?

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    • Posted

      AH! Thank you. No new wonder drug to try then. ;-) (Tried Buscopan, even administered iv to highest dose, doesn't do a thing. )

      Thank you for FAPS explanation (since I only could find FAP = familial adenomatous polyposis, nothing to 'just live with it'wink

       

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    • Posted

      Buscopan and avoiding stressful situations help.  I have had four different types of pain: dull, deep grinding, stabbing and sore to touch.  The pain used to keep me awake at night and msde me feel sick.  The pain tends to move around my stomach.  However, after my diagnosis, my pain got better because my panic disappeared.
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    • Posted

      How often did the pain come and what was the duration?

      Sorry for all the questions, I am trying to understand why my doctor ruled out IBS to begin with. I think I definitely need a second opinion.

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    • Posted

      My pain was constant and I was reliant on Nurofen for weeks.  However, painkillers only reduced the pain rather than getting rid of it entirely.  The intensity of the pain would change from barely noticeable to extremely painful throughout the day.  I also had very persisent constipation and a bout of loose stools with nausea.
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    • Posted

      They tested my urine, I had an ultrasound, a celiac test, and a h pylori and fecal calprotectin stool test.  Everything was negative.
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    • Posted

      No I was never given a food allergy test because I was diagnosed before it became necessary.   Had they. still been unable to diagnose me, they would probably have looked at food triggers.  However, food does not cause my symptoms and I can largely eat what I like.  Stress causes my pain usually but sometimes stress causes no reaction at all.
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    • Posted

      I have Aspergers Syndrome and tend to get stressed very easily.  I lose things when distracted and have a poor sense of direction. I am also very sensitive so unkind comments can really set me back.  Any one of these things can trigger pain.
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    • Posted

      I see.

      Thank you so much for putting up with my questions. I know I can be annoying. XD I wish you all the best and thank you for all the advice.

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    • Posted

      It's better to ask because doctors don't have much time to deal with our worries and questions and often the answers don't make much sense.  I was at the doctor eight times before I got help.  It's hard to think back on how awful the first few months of last year were.  I spent from March to the middle of May in constant pain and panic.

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    • Posted

      I panicked because no one could diagnose my pain and I thought something was seriously wrong that had been missed and it was too late to anything thing about it.  In an effort to give doctors more to go on, I googled too much and terrified myself.
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    • Posted

      Some things on google were useful to give me ideas to ask the doctor about.  However, I looked other more frightening conditions and assumed my symptoms matched the conditions because stomach pain can mean many things.  This was not helpful to me because I don't have the doctor's skill in interpreting the information I was reading.

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