My diagnostic journey so far...

[JuliInCA]

Greetings, everyone!

I may not be able to keep this as brief as I'd like, but hopefully it will be a good read... LOL

Most recently: In late May I had one of my "stomach aches" with pain radiating thru to my back. I knew it was gallstones.

Nope - ultrasound of stomach, gall bladder, liver, spleen all clear. She gave me generic prilosec - again - and that was it.

Had another stomach ache 2 weeks later, which is really more of mid-abdominal pain, 2-3 inches above my navel and feels like someone is pushing in a bruise VERY hard. It's an all-consuming dull ache I've been having on and off for years. Only recently the pain started radiating to my back.

So I had a UGI that discovered "something that looks like a piece of food" (seriously!) in my stomach.

The follow-up endoscopy discovered "severe gastritis" and a nodule in the upper stomach. Biopsies were taken and came back negative for cancer, which thrilled the GI dept. but still left me with these painful episodes.

Oh, also I've had MAJOR bloating when I eat pretty much anything. I have to literally lean back on my elbows to relieve the discomfort. So they were thinking ulcer/cancer, which was now ruled out.

But gosh, I still have symptoms so I had a CT scan with dye that found a nodule on my lung and something that "worried" my doctor in my colon on the right side near the liver.

She ordered a colonoscopy which showed a pink, normal, healthy colon. They did keep asking me if I had pain in my lower right abdomen, and now of course I think someone thought of Chron's. But because the TI is not irritated perhaps they (think they) ruled it out...

Anyway, it's been weeks now, and of course none of these tests has actually done anything to relieve my pain and discomfort.

Just spoke to my GP, who told me my continuing symptoms are from the stomach irritation and to keep taking the prilosec.

But, I've been taking 2 prilosec each am and 2 each evening (as she directed), which is a LOT of prilosec - but I'm still having the symptoms.

It's like she's brain dead.

Soooo, I basically threw a minor hissy fit and demanded either a SBFT or MRI to actually LOOK at my small intestine. I explained to her that we have "looked" at everything except the small intestine. That the pain is not located in my damn stomach, and that every time I say stomach ache she says prilosec. Over and over again. That's a partial quote. LOL

I call to schedule a SBFT on Monday!

 

[JuliInCA]

Wow! That was long! Sorry bout that!

Also wanted to add that my theory is a partially blocked small intestine, that recurs, possibly from inflammation?? So I'm not even sure it IS Chron's, but knowing that there are several forms of it and that it can actually occur any where in the digestive tract (which I never knew...) made me think it's worth checking out, particularly since nothing to date has helped.

Thanks for reading if you made it!

Juli

 

[Jennifer]

No need to be sorry. Wasn't too long.

I'm assuming SBFT stands for small bowel follow through (first time I've sen it shortened like that Edit: hey look it does! Tagged the wiki link ) which is what I was thinking of suggesting but you got to it at the end, so that's great! If nothing shows up on that, then definitely go for the MRI. I know that when I had the small bowel series it showed ulcers and inflammation and all that good stuff so it really is a good test to do.

Keep us posted on how it goes! And good for you for standing up for yourself with your doctor!

 

[Gculk]

What'd they say about the nodule on your lung?

Also, severe gastritis, well, that's... Sort of not a good thing. It could be gastric crohn's (Crohn's of the stomach, don't these goofs know that Crohn's can occur anywhere from mouth to anus?), and even if they biopsied it, it's often difficult to make a solid diagnosis of Crohn's. The continued testing, SBFT and whatever is a good plan, have they looked at other causes for the gastritis, like H. Pylori? Worth a try, and would give similar symptoms.

If they find gastritis again, push to get something to treat the inflammation in your stomach, as if they find it again, it indicates a chronic inflammatory condition.

If you think it's partial blockages, that doesn't exclude Crohn's, and in fact would be evidence towards Crohn's as Crohn's causes swelling and scar tissue buildup that causes blockages.

Best of luck

 

[JuliInCA]

Thank you for asking, and also for your comments, Gculk.

About the lung nodule - they said it might just be a vein or something and not to worry about it for now.

I got the SBFT scheduled, and it's not until Aug. 22. So until then I've been eating as recommended for Crohn's by the Mayo Clinic, and it seems to be helping with the bloating/possible minor blockage and much of the diarrhea.

I'm not even sure what is really going on, but the diet is at least giving me some relief. However I've lost another 10 lbs without trying because I feel physically uncomfortable, but not in pain, if I eat more than a few bites of anything at one time.

I'm writing down everything I eat & drink, my meds and what time I take them, how my stomach and abdomen feel, and even lovely descriptions of what comes out of my butt in all the various forms. LOL I laugh when I think about someone else reading it, but if someone ever needs it, I have it!

I'm grateful for my mild symptoms, regardless of the diagnosis, and really hope the treatment will not be dramatic.

Hope this message finds you all well. I'll keep you posted.
As always, love any feedback you have.

Juli