Someone please help me- undiagnosed and desperate for guidance

[alli]

Hi all,

I don't know what to do anymore and I am desperate for answers. I live in South Africa. I have been diagnosed with chronic kidney disease and have multiple bilateral stones at all times. A few years ago I started having pain that felt like kidney stones. I would be rushed to hospital only to find that there was no stone coming down. I have always been constipated so when the pain would arise doctors would give me laxatives and send me home. This would help relieve the pain a little at times but mostly not at all. Last year I was also diagnosed with pernicious anemia.
This year I have been in daily pain for more than 6 months. I am also always getting sick with any bug that might be around. Eventually my GP said it might be Crohn's and sent me to a gastroenterologist who performed a colonoscopy and gastroscopy. Before the colonoscopy even after doing the prep I was in severe pain despite clearly not being constipated at all. Did biopsies etc, all came back normal. She found candida in my oesophagus and sent me for AIDS and diabetes tests. All normal. Now she has kind of washed her hands of me and told me to stay on laxatives, which I am. Yesterday I ended up doubled over in pain again. I have lost faith in doctors. What is wrong with me?
Can anyone here help me?

 

[Cross-stitch gal]

Hi and welcome to the forum. I'm sorry to hear all that you're going through. Is it possible to be seen by another doctor? I do know that if you're being doubled over in pain frequently that it may be time for a trip into the ER. I hope that you can somehow get this taken care of. In the meantime, sending lots of hugs and support your way.

 

[alli]

Hi, thanks for the welcome.
I have depleted my medical savings so I am hesitant to see another doctor. I also have occasional bleeding but no explanation for it. I feel like I am going crazy because I have all these symptoms and no explanation, and if there is no explanation the doctors just say there is nothing wrong with you which leaves you ashamed and doubting your own sanity.

 

[Rebecca85]

The problem with scopes is they can only go a little way into the small bowel. It's possible for Crohn's to only affect the small bowel and for nothing to be seen on colonoscopy or gastroscope. I had a colonoscopy a few months ago which was clear despite me being diagnosed and having symptoms. My dr ordered a faecal calprotectin test which showed inflammation. I am also awaiting an MRI scan to see into my small bowel and see the extent of the inflammation.

So I would say if you can afford it, you might want to look into either the stool test or some sort of imaging (ultrasound, ct, MRI scan) which can see into the small bowel much more easily than a scope.