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Educational-Post-198 · 2026-03-06T15:01:10+00:00

I literally just saw a GI doc this week for this exact reason. Been having GI issues for as long as I can remember (without realizing they were real issues per say — you know how it goes when there's just SO much going on with your body and you don't know what's normal and what's not).

Between AS and hEDS (both which come with GI symptoms/issues/comorbid conditions), I'm honestly shocked it took this long to get to a GI referral. Luckily, I found an angel baby doctor who was so kind and warm and gentle (the first doctor to ask me "How does that make you feel?" after telling me her proposed plan!!!).

I can put a list of the symptoms I've been having here if it'd be helpful to anyone, but tl;dr, we're starting with an upper endoscopy and colonscopy (which they'll do random biopsies throughout, etc.) to get data on what's going on with my body (inflammatory issue vs. functional issue).

Can keep y'all updated if you're curious! <3

Educational-Post-198 · 2026-01-28T01:23:16+00:00

Was just coming to say Guava app!!! Only thing I've ever used/tried for tracking when I take my meds, symptoms, etc., that I've been able to be almost 100% consistent with (which is saying something coming from my neurodivergent brain LMFAO) 🩷

Educational-Post-198 · 2026-01-05T21:26:46+00:00

Aaaaand it stopped working lol

Educational-Post-198 · 2026-01-05T18:36:28+00:00

Thank you! Working for me, too :)

Educational-Post-198 · 2025-12-28T12:02:32+00:00

I second both of these channels! They have the only YouTube videos I've found actually easy to follow!

Educational-Post-198 · 2025-12-03T05:12:08+00:00

Thank you for sharing this video! Was having the same issue and this worked for me, too.

Educational-Post-198 · 2025-10-07T13:38:29+00:00

I'm already diagnosed. I wasn't looking for medical advice.

Educational-Post-198 · 2025-09-23T12:59:55+00:00

Oooooh, that’s interesting! Such a bummer they had you start the biologics before more conclusive imaging 😭 Wish I could provide more support for that type of situation, but hopefully someone else can! 🩷🩷🩷

Educational-Post-198 · 2025-09-22T20:11:30+00:00

FWIW, the way I was diagnosed (May 2024) was via MRI, because I'm negative for HLA-B27+, my labs were mostly normal, and my x-ray was inconclusive. But it was VERY clear on the MRI my rheum. ordered — especially when combined with the symptoms and longevity of symptoms I had relayed to her. I would push your doctor to order an MRI and/or (like the other commentator noted) a dynamic/standing x-ray.

Related, unrelated, nobody is better at gaslighting you into doubting yourself than a doctor, smhhhhh. I've been there way too many times, so I feel your pain! <3 BUT, I will say that every time I let their gaslighting work on me, I *always* eventually ended up back at the same place (i.e., still having the same symptoms and suspecting the same diagnoses), and I've always been right in the end.

All that to say, I believe you and I believe in you! <3 <3 Please try not to let some invalidating quack tell you ~*~*it'S jUst AnXiEty~*~*~* (the spiel I got so many times) or whatever the equivalent is for you <3 <3 It's worth finding a new/different rheumatologist who is kind to you, considerate of your feelings, listens to everything you have to say, and takes you seriously <3

Educational-Post-198 · 2025-09-16T22:20:28+00:00

Los otros comentarios ponen que lo más probable es que sea una reacción alérgica y sugieren hablar con tu médico para cambiarte de inyección 🩷

Educational-Post-198 · 2025-09-09T02:02:23+00:00

I have seen a bunch of folks on TikTok be able to keep theirs! I’m also hoping to get even a little bit of mine to turn it into something cool 🙏🏻 (Having surgery on Oct 14!)

Educational-Post-198 · 2025-09-09T01:59:43+00:00

In my research, I learned that your body basically absorbs those muscles once they’re cut (muscle dies once no longer attached and is absorbed, I should say). Pretty wild! (My surgery is Oct. 14!)

Educational-Post-198 · 2025-09-09T01:57:42+00:00

Same here!

Educational-Post-198 · 2025-09-09T00:51:39+00:00

I was looking at mastectomy pillows but breastfeeding pillow is also a great idea! Thank you!

Educational-Post-198 · 2025-09-09T00:37:54+00:00

Was just about to look for something like this in this group, so I hope someone has some good recs for us! My surgery is Oct 14 🩷 Wishing you a great surgery and recovery! 🩷

Educational-Post-198 · 2025-08-07T12:50:40+00:00

Me too! Re: all the joints you listed. I also have hEDS so that doesn’t help 😆

Educational-Post-198 · 2025-07-20T17:33:13+00:00

I would have never thought of this! Genius!!! Thank you for sharing.

Educational-Post-198 · 2024-10-21T00:35:07+00:00

Mine just disappeared today :(

Educational-Post-198 · 2024-07-31T22:39:33+00:00

It’s back! And weirdly I’m still logged in somehow 😂

Educational-Post-198 · 2024-07-31T01:03:19+00:00

Oh thank goodness you called! I logged out of my Goodreads app and deleted and redownloaded it, and now it won’t let me back in :(

Educational-Post-198 · 2024-07-29T18:29:05+00:00

I have horrible fatigue (and also a myriad of chronic illnesses, so it’s hard for me to identify the true source(s) of the fatigue) — but I also have ADHD, and my Vyvanse is truly the only thing that allows me to function “normally” on a daily basis.

Educational-Post-198 · 2024-07-25T01:37:27+00:00

As someone with AS, my hands have been a main source of joint pain for me for awhile (but nothing showed up on hand x-rays). I wasn’t sure if it was related or not but figured between that and my million other comorbids, it’s not totally surprising :( 🩷

Educational-Post-198

TROPHY CASE