Undiagnosable Abdominal Pain
Posted , 3 users are following.
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
sanya11314 Roois
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
Roois sanya11314
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.
sanya11314 Roois
Posted
I tend to write too much
sorry.
sanya11314 Roois
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!
sanya11314
Posted
Roois sanya11314
Posted
Alright, thank you for the advice.
I'll look into it when I have the chance.
Anaheimkaren Roois
Posted
Roois Anaheimkaren
Posted
Yeah, my liver has been tested and it is well.
I will ask about the yeast problem, it's definietly worth a shot. Thank you!
philippa61759 Roois
Posted
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.
Roois philippa61759
Posted
sanya11314 Roois
Posted
Which spasmolyctic meds helped please?
and what is FAPS? (the only definition I find is nothing to 'get on with'
philippa61759 Roois
Posted
Roois sanya11314
Posted
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.
Roois philippa61759
Posted
And the pain you were in, what was it like?
sanya11314 Roois
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'
philippa61759 Roois
Posted
Roois philippa61759
Posted
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.
philippa61759 Roois
Posted
Roois philippa61759
Posted
philippa61759 Roois
Posted
Roois philippa61759
Posted
philippa61759 Roois
Posted
Roois philippa61759
Posted
philippa61759 Roois
Posted
Roois philippa61759
Posted
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.
philippa61759 Roois
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.
Roois philippa61759
Posted
philippa61759 Roois
Posted
Roois philippa61759
Posted
Oh. I understand.
I am guessing, Google wasn't very helpful?
philippa61759 Roois
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.
Roois philippa61759
Posted
That's true. A lot of the gastro disorders overlap when it comes to symptoms.