Looking for advice - dejected :(

[juljul]

Hi all,
This is an update for something I wrote in the undiagnosed club. I am posting here because I am hoping some ladies might be able to offer some words of wisdom, and I did not know about this section before and should not really have written about the stuff I wrote there ideally (suggested possible fistula with gas vaginally and urethrally).

Tests done:

A CT - which showed gas spots vaginally - is explained by air only.
A water soluble enema that found no fistula - proves there is no fistula.
And a sigmoidoscopy with no biopsies taken - is proof that there is no Crohn's in my entire GI system.
A normal upper endoscopy taken of my esophagus/stomach when I was not flaring - is proof I have no acid reflux/GERD/gastritis.
Abdominal Xray - showed lots of gas pockets - no explanation.
Defacating proctogram - minor rectal prolapse.


I read somewhere that a barium enema is about 34% sensitive. Wouldn't then the water soluble enema be about the same?

My GP herself said that upper endoscopies don't always show gastritis. She used to work in that area apparently.

Asked the registrar (saw the registrar for the firs time, not the new consultant who I haven't actually seen yet because he was presumably busy) if could be Lupus is in my gut? (have been diagnosed with UCTD/Lupus leaning - antidsDNA) recently.

He said I need to see the Rheumatologist about that. But wouldn't the Rheumatologist just refer my back to a GI doctor because they don't do GI investigations, do they?

NSAIDs worsen my GI pains.
NSAIDs seem to have started most of my GI troubles. This is true.

Get some relief from some antibiotics (Zithromax, Co-amoxiclav).

I don't know what to think, what to do. Any suggestions please. All tests listed are what I have had in the past two years.

Many thanks for taking the time to read.
[NB: my post has been edited ....my earlier post had been a vent, and don't want to be identified.....too much info ].

juljul xx

 

[GutlessWonder86]

First, I'm sorry for what you are going through. I'd definitely see your rheumatologist about the Lupus diagnosis to make sure that is what it is.

As a female crohn's person I can tell you that we can pass gas from the lower region and not have it be a fistula but it can be ruled out just to play it safe.

Gastritis is common even in healthy people and it can cause stomach noises, even heart burn if the gut is spasming & there is stomach acid present. That is where an antispasmatic would help like Bentyl.

As a patient, you have that right to get a 2nd even third opinion if you are having serious health issues. Talk to your primary MD to get his opinion on what these other GIs have said and the tests they've run on you.

Whenever I get a 2nd opinion outside of my medical team (primary MD, GI, GI surgeon, hematologist, neurologist) I will involve my primary MD and any other pertinent doctors to review current test results and then ask those involved to talk amongst each other to get a game plan in place. If they are still stumped, I will ask who'd they'd suggest for a 3rd opinion.

Good luck to you. Gutless Wonderwoman

 

[juljul]

Thanks for your insight GutlessWonder86.

 

[GutlessWonder86]

fyi julijul: NSAIDs are not good for IBD patients. for pain we can only take tylenol OTC because it will not cause a GI bleed.

remind the doctor whoever Rxed that because NSAIDs can cause serious GI issues.

hope you are doing better.