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Upper GI Crohn's?

GroverCat

GroverCat

Hi,

I'm wondering if anyone on here has Crohn's of the upper GI? I've had some mild reflux and nausea problems off and on for years that required maintenance with a low level PPi along with more pesky lower GI stuff, but as of this spring, I woke up one day and my reflux and was off the charts and suddenly untreatable with PPis at all. Coincidentally I discovered I had Hashimoto's thyroid this last December (now under control with meds). I'm trying to get to the bottom of this, because my quality of life has taken a nose dive, and I've had more eczema than usual in addition to waves of really achy fingers and wrists that comes on every few weeks and then goes away again. I had never considered anything autoimmune before this year, but I can't' help but wonder if my reflux and nausea is connected to something more systemic than just a faulty esophageal sphincter?

I've never had any vomiting or obvious blood in my stool, but is it possible that the achey joints + untreatable reflux + nausea could = Crohn's? I had a genetic test done on 23andme, and it does show I'm at an increased risk for this disease as well as rheumatoid arthritis and Hashimoto's (no big surprise on the latter).

Thanks,

GC
 
GroverCat

GroverCat

Thanks for your replies... I'm sorry to hear from those of you who are suffering full system Crohn's-- sounds terrible.

Here's a question for you: can Crohn's hide if not in full flare? I'm scheduled for an endoscopy at the end of August, and while I'm still symptomatic, I feel better this week (with the exception of my aching hands) than I have over the last three months. Do you think the scope will still show evidence even if this trend of feeling better continues?
 
DJW

DJW

Forum Monitor
Generally speaking I don't know if it can hide. Last summer I had surgery for a blockage and perforation. Surgeon found active crohn's. Felt pretty good but did explain the fatigue I'd been feeling for 6 months or so. I got worse from then on. I'm still not feeling close to the end of this flare.
 
723crossroads

723crossroads

Location
USA
How did they determine it was hashimotos? That runs in my family. I have the same symptoms as you and was diagnosed with crohn's during a colonoscopy in 2011. I have reflux very badly and hand pain, elbow pain, knee pain, ankle and hip. Also diagnosed with Fibromyalgia and Myosis of the mucsles. I have bouts of excema and psoriasis on my scalp and scalp line. It itches and I need to go to a dermatologist! I believe these are all signs of immune disease and crohns is an immune disorder. So, yes you may! I suggest you get checked for it soon.
 
GroverCat

GroverCat

Thanks for the replies!

They figured out Hashimotos on a routine blood test that showed my TSH was elevated. When my anti-nuclear antibody level also showed up as high they tested for anti-thyroid antibodies, and they found them, so I got the Hashi diagnosis. My mom had hypothyroidism- diagnosed in her 40s back in the late 1980s, and nobody ever tested her for antibodies, but I'm sure that's what she has too since it's genetic. It would be worth asking your doctor about if you suspect it might be contributing to your symptoms. I have eczema on my hands off and on as well. Right now my thyroid levels are golden thanks to meds (on them since January), and I had them checked two weeks ago, so it's probably not the thyroid that's giving me troubles at this point.
 
723crossroads

723crossroads

Location
USA
Would this show up in a regular TSH test? Mine was within normal range.
Hope you get to the bottom of your troubles hon!:) I think you should have your blood tested for inflammation markers. Being fatigued can come from your thyroid or crohns or low B12. Get tested for that too if you can.:hug:
 
S

SarahCunnane

My crohn's is predominantly Gastro-duodenal. I had intractable epigastric pain ( unresponsive to high dose PPi) severe nausea, weight loss and anaemia. Also had a few bouts of diarrhoea. Initially my oGD showed chronic gastritis with multiple linear ulcers. Biopsies just showed chronic inflammation. There are lots more common things like NSAIDs. H pylori or just simple reflux that might be causing symptoms so you definitely need to get checked out. Have you had scopes yet??your biopsies should give the answer.

Having excluded everything else my GI trailed me on steroids and I felt like a different person, this eventually got switched to 6MP. My disease process has unfortunately worsened with more flare ups, particularly bad at the moment after a trial off 6MP.

Getting proper tests done and being listened to by your GI is the most important thing. Upper GI crohn's does exist but it is pretty uncommon. I hope they get to the bottom of it.
 
GroverCat

GroverCat

723, the regular TSH test should show whether your thyroid is out of whack. Mine was around 10 (normal between 1.5-5). They only tested for the anti-thyroid antibodies after the elevated TSH tipped them off. Thanks for the tips!

Sarah, I'm hoping to get a scope done in late August, but I'm waiting for a call-back from my doctor. It's an out-of-state trip to get to a medical center that I trust, so it's a bit of phone tag to get things scheduled. Sorry to hear things are bad for you right now-- hope things take a good turn soon.
 
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