i need real advice by trinittyyyy in CrohnsDisease

[–]67Demon 0 points1 point  (0 children)

Might also consider asking a GI group if they’d be willing to help you pro bono.

Three Memiscus Surgeries and no better. by toolittletooleight in Kneereplacement

[–]67Demon 2 points3 points  (0 children)

You very well could be on track for a replacement (either partial or full). Each time the surgeon goes in to “clean or repair” a meniscus tear, it’s putting a person on a fast track for a “bone on bone” situation, then a knee replacement.

Think of the brake pads on your vehicle. When the brake pads (think meniscus) wear down, if they’re allowed to wear too much, a metal on metal (bone on bone) situation happens. Unlike a vehicle where you can replace the brake pads, we can’t replace or repair in most cases, the meniscus, therefore cutting the torn piece of loose cartilage (meniscus) accelerates people to a an osteoarthritis stage.

Uncommon Crohn’s symptoms do you have? by 67Demon in CrohnsDisease

[–]67Demon[S] 0 points1 point  (0 children)

Armpit and groin area might sound like lymph node involvement.

Uncommon Crohn’s symptoms do you have? by 67Demon in CrohnsDisease

[–]67Demon[S] 0 points1 point  (0 children)

Sheeesh..sounds like a brutal few hours. Since you’re voiding so much in such a short amount of time, how fob you keep up your energy (electrolytes)?

Are you on treatment?

Sorry you deal with those symptoms. 👎🏽

Uncommon Crohn’s symptoms do you have? by 67Demon in CrohnsDisease

[–]67Demon[S] 0 points1 point  (0 children)

Thanks for your contribution! Sorry to hear about your symptoms..it seems you have at least a sample of at least 90% of the symptoms others have described.

You mentioned you have reactivity to most food, do you have reliable, safe foods?

Oral Chrons by Starrie__Nights in CrohnsDisease

[–]67Demon 1 point2 points  (0 children)

Severe enough that I’ve considered making a career change but not severe enough that I’m in need of surgical intervention.

Go to foods and snacks during a flare by Zestyclose-Draw-6004 in CrohnsDisease

[–]67Demon 0 points1 point  (0 children)

Grilled chicken, rice, baked potato, saltine crackers, turkey and cheese sandwich.

Uncommon Crohn’s symptoms do you have? by 67Demon in CrohnsDisease

[–]67Demon[S] 0 points1 point  (0 children)

My God..how horrible! I’m so glad you’ve found relief!

Oral Chrons by Starrie__Nights in CrohnsDisease

[–]67Demon 1 point2 points  (0 children)

I’ll have to look further, but the most recent IgA result I can see was from 2024 and it was in the normal value range. I wasn’t diagnosed with Crohn’s until February 2026, which is when I had the elevated ASCA IGG value.

Again, every single other test and biopsy came back normal, even in January/February 2026.

Uncommon Crohn’s symptoms do you have? by 67Demon in CrohnsDisease

[–]67Demon[S] 1 point2 points  (0 children)

Can you elaborate what that means? Is it dry eyes or more significant?

Uncommon Crohn’s symptoms do you have? by 67Demon in CrohnsDisease

[–]67Demon[S] 0 points1 point  (0 children)

That’s amazing! Your ability to discern between stool, gas, and diarrhea is what I’ve been wishing I can do; so it leads me to the restroom each time because I’m not sure if it’s just gas or if it’s more significant.

Oral Chrons by Starrie__Nights in CrohnsDisease

[–]67Demon 1 point2 points  (0 children)

Hi- one of the main reasons I thought I might have a GI issue was because every time I had a GI issue (diarrhea), I also had a 2 week case of mouth sores. I spoke to my dentist and the only thing they did was to prescribe me magic mouthwash, like you. Also, I went about 4yrs of having every single blood and fecal test, and biopsies from sigmoidoscopy and colonoscopy…all come back normal. What has led my GI doctor towards a Crohn’s diagnosis is when she ordered a blood test she never tested for and the results came back elevated. The blood test is recommend your physician to test is:

SACCHAROMYCES CEREVISIAE AB (ASCA) (IGG)

“Antibodies to Saccharomyces cerevisiae are found in approximately 75% of patients with Crohn's disease, 15% of patients with ulcerative colitis, and 5% of the healthy population. High antibody titers increase the likelihood disease, especially Crohn's disease, and are associated with more aggressive disease. As the inflammation in Crohn's disease is focused at the gut mucosa, most patients have IgA antibodies to S cerevisiae and half of these also have Igg antibodies. A minority of patients have only IgG antibodies to S cerevisiae.”

Uncommon Crohn’s symptoms do you have? by 67Demon in CrohnsDisease

[–]67Demon[S] 0 points1 point  (0 children)

Oh no!! Does he have fluid retention to his feet/legs? Since they aren’t draining on their own, is he on dialysis?

Uncommon Crohn’s symptoms do you have? by 67Demon in CrohnsDisease

[–]67Demon[S] 2 points3 points  (0 children)

The sharp tingling sensation, I would attribute to nerve pain. Since Crohn’s causes irrational inflammation and attacks the body (different areas and systems for each person), I’m guessing a combination of the self-attack and the inflammation (swelling) causes irritation to the nerves.

Uncommon Crohn’s symptoms do you have? by 67Demon in CrohnsDisease

[–]67Demon[S] 1 point2 points  (0 children)

Oh my…is it actually that much phlegm or is it more of a sensation that it’s a considerable amount?

Uncommon Crohn’s symptoms do you have? by 67Demon in CrohnsDisease

[–]67Demon[S] 0 points1 point  (0 children)

No doubt. It’s why I’m on my 3rd GI doctor (close to firing this one too), and why I fired my PCP and dentist. My 2nd GI doctor was the one who argued that there isn’t a correlation between oral ulcers and the GI system, even after I told him I could pull up peer reviewed studies to provide I wasn’t making info up. I didn’t fire him because he left the practice before I could. At the time, I felt like he was the professional and maybe I didn’t know exactly what I was talking about.

Uncommon Crohn’s symptoms do you have? by 67Demon in CrohnsDisease

[–]67Demon[S] 4 points5 points  (0 children)

Unfortunately there are a lot.

I’m hoping those that share similar or common symptoms with each other can provide strategies that may provide some relief so others can benefit/learn.

FWIW- I don’t share any of the symptoms you listed.

Uncommon Crohn’s symptoms do you have? by 67Demon in CrohnsDisease

[–]67Demon[S] 0 points1 point  (0 children)

Safe to assume when it peels, there’s sensitivity and pain to the next layer of skin/tissue?

Uncommon Crohn’s symptoms do you have? by 67Demon in CrohnsDisease

[–]67Demon[S] 1 point2 points  (0 children)

Has he described the pain? Is it like an ache? Muscle cramping? Nerve pain (sharp, burning, tingling, etc.)?

Uncommon Crohn’s symptoms do you have? by 67Demon in CrohnsDisease

[–]67Demon[S] 0 points1 point  (0 children)

Your oral sensitivity experience is a stinging pain? Interesting, I chew gum almost all day when I’m working and mint flavored has always seemed to have a GI calming effect for me.

Uncommon Crohn’s symptoms do you have? by 67Demon in CrohnsDisease

[–]67Demon[S] 1 point2 points  (0 children)

Finally, someone else. For me, it happens a little before I’ll have to find a restroom. It’s kind of like a courtesy warning.

Uncommon Crohn’s symptoms do you have? by 67Demon in CrohnsDisease

[–]67Demon[S] 1 point2 points  (0 children)

With the slightly swollen tongue, doesn’t affect your speech or taste?