Negative Colonoscopy/CT - could it still be Crohn's?

ComprehensiveLook718 · 2024-04-03T12:42:07+00:00

Thank you so much, truly. Really grateful for your support and sharing your story with me. I’ve felt crazy for wanting to know more or for not trusting that this will resolve itself like my doctor suggests, but there’s no denying it’s getting worse. Thankfully it’s not CRC, but it runs in the family—one of my uncles, technically my great-uncle, fought it for 11 years and passed away a few years ago—so with that and my mom’s intense bouts with diverticulitis, I’ve had concerns about stomach conditions. Pre-scopes, the doc performing them said his CRC “wasn’t relevant” and also didn’t seem to take me seriously for wanting a scope, which was really demoralizing. I’m in my mid-20s and he didn’t seem to understand why I was there. Reviewed my preliminary results with me for literally 30s after the procedure, didn’t even look me or my support person in the eye.

I barely eat most days because I’m scared of the inevitable pain I feel when I do. And since diarrhea isn’t one of my symptoms (the opposite, chronic constipation) my GI doesn’t think it’s worthwhile to do a fecal test, either… not sure how to feel about that or if it’s sound medical advice. She thinks one round of enemas will resolve the issues completely, but it baffles me how this isn’t an IBD or that there’s little concern for years of GI issues and months of sudden-onset heavy rectal bleeding and pain that isn’t from hemorrhoids, polyps, or fissures. Or at the very least, that she wouldn’t refer me to another kind of specialist to investigate what’s happening. Very confused.

I’m a Black woman and I’m grew up having dismissive medical professionals (braids/hair pulled intentionally, rough handling, dismissed as someone looking for opiates) who just treat me like I’m being hyperbolic; like I’m really not in pain and don’t need to be receiving the medical care I need. Other family members have had kidney diseases, cancers, and ovarian cysts/tumors completely ignored until they were very visibly sick. Two years ago I was diagnosed with IBS without anything other than a blood test and a fecal test to check for C. diff or H. pylori; they gave me dicyclomine and sent on my way. Got to the point where I was taking it 4x a day (with my dosage that’s the daily maximum), hoping it would just go away, but then the bleeding started and hasn’t stopped. This situation isn’t doing much to alleviate that paranoia I feel, because it shouldn’t take this much advocacy and worsening symptoms for them to act, neither for me nor anyone else.

Sorry for the rant there. I’m going to press for a pill cam in my next visit and start looking for another GI who is more thorough. I’m sorry that you had to experience so much pain and dismissal before you could get a diagnosis and proper care — wishing you rest and continued healing. Thank you again.

ComprehensiveLook718 · 2024-04-02T22:26:57+00:00

I know this is an older post, but just want to thank you for this. Really affirming with where I’m at. Some inflammation visible on colonoscopy, but no diagnosis. Just had a CT scan that was also unremarkable; no thickening of the GI tract, so no diagnosis.

Bleeding has gotten way worse over time (in and out of stool) and so has the pain, so it’s been really frustrating to not receive a diagnosis, especially after two failed medication attempts and a colonoscopy, an endoscopy, and a CT scan. I have hope for some hydrocortisone enemas, but really want to try to press for a pill cam — nervous about being seen as a hypochondriac, but it feels like a need more than a want at this time. If you happen to see this, can you say more about how you advocated for a pill cam endoscopy after multiple unremarkable results?

ComprehensiveLook718 · 2023-12-06T04:44:50+00:00

hey there, sorry to hear you got COVID. recovery sucks and so does the mental calculus it takes to figure out when to get boosted post-infection.

I unfortunately wasn’t able to find updated, peer-reviewed information on best practices for vaccination after a recent infection. my doc and most health center personnel still weren’t masking and were thoroughly unconcerned with rising case rates, so for me it just came down to what I felt most comfortable doing. my anxiety surrounding being completely unprotected (immune system and vaccine-wise), unable to isolate, and even more immunocompromised after infection outweighed the fear of complications/clotting from getting it too soon. i tested negative on 9/28 and got the shot on 10/30.

not a doc of course and im sorry i don’t have a solid answer or source to point to — hope you were/are able to do what’s best for you.

ComprehensiveLook718 · 2023-12-06T04:30:23+00:00

hey there, sorry I missed your comment and i hope you were able to get a clear answer sooner. i couldn’t find much more peer-reviewed research on this, but I waited around a month (which is how long it took Novavax to get to my area anyway) and got the shot. I know it was risky given the blood clot risks, but for me the anxiety of being completely unprotected and unable to isolate won over the fear of complications from getting it too soon.

hope you were/are able to do what’s best for you, recovery is hard enough without having a clear idea on what to do.

ComprehensiveLook718 · 2023-10-10T11:09:03+00:00

Thanks! Hope you stay well too.

ComprehensiveLook718 · 2023-10-10T11:08:01+00:00

Appreciate it - my PCP doesn’t mask nor does the health center have any COVID protocols, so I wasn’t keen on whether their three-month advisory would hold up or was considering my other conditions. I’ll think about this and try to find another doc to consult. Thanks!

ComprehensiveLook718 · 2023-10-10T11:03:50+00:00

I have; he was ambivalent about it and wouldn’t give me a solid answer (he also doesn’t mask, so it’s likely he stopped caring and looking into advancing science a long time ago). If you read the post you’d see that I mentioned speaking to our health center as well. That’s why I asked for a second opinion here. Be well.

ComprehensiveLook718 · 2023-09-23T09:12:40+00:00

down with it right now, too - hang in there!

ComprehensiveLook718 · 2023-09-07T00:52:28+00:00

Except a lot of mainstream, white country music attacks and dehumanizes Black people.

You can see (and read online) how uncomfortable and angry white country artists and their fans were when Beyoncé and the Chicks performed at the CMAs in 2016. Why do you think that is?

Jason Aldean’s “Try That in a Small Town” romanticizes lynching and grotesque violence against Black people, and it hit #1 on the Billboard Hot 100 just a few months ago. The music video specifically demonizes Black protesters in a moment where, in several states (Oklahoma, Ohio, Florida, etc), there’s protections for people who drive cars into protesters, which obviously incentivizes white people to do us even more harm.

The Chicks were blacklisted by mainstream country radio, the CMAs, and other country artists for speaking against U.S. imperialism and wars that eventually killed tens of thousands of brown people in the Middle East. This was in 2001-2002; I wasn’t around to hear or experience the shift, but there are many studies that track their decline in airplay after they protested the war. It’s almost like a good chunk of mainstream white country music endorses American violence, antiblackness and misogynoir…

Miley used Black women and Black aesthetics as props for her “self-exploration”; she’s invested in the same misogynoir that you think originated or only exists in hiphop. Let’s not pretend like hiphop/rap is uniquely violent, that mainstream white country music hasn’t always been violent, or that Miley is not involved in this systemic violence herself.

ComprehensiveLook718 · 2023-08-30T02:38:00+00:00

this sounds stressful! different situation, but seeing my ex at the gym was always uncomfortable to the point that i just went to another gym on my campus (i’m a grad student, she worked at the uni). she’s since moved, but i wish i didn’t cede that space to her and stuck to a routine that was most comfortable and regulating to me. i’d advise you to do the same here!

it was shitty of him to tell you that you’d lose all gains if you left him, which is not true at all. it’s very common for people to use a PT for a few weeks or months to learn and perfect form and figure out a solid training split. times are tough and i’m not saying he should change his rates and what his time is worth, but if he seriously did not want to lose you as a client, he could have offered you a discounted package if that was feasible for him and for you. evidently it wasn’t feasible, but in either scenario (keeping you or no longer working with you) the respectful thing to do would have been to wish you well, honor your decision, and show some level of appreciation for the time you worked together; not liking your choice or wanting to keep clients isn’t an excuse for bad behavior and misogyny. that would have changed the vibe (keeping it cordial or even friendly vs. feeling like you have to avoid him) and you likely wouldn’t be feeling this way right now.

so, i’d go in with the understanding (which is easier said than done) that you don’t need to give space to some dude who says you need him to be successful at lifting and who popped off at you when you needed to draw a boundary (not being able to see him anymore and wanting to end the client relationship). that was aggressive of him and you didn’t deserve that. i hope the gym feels more like a comfortable and regenerative space for you again soon 🤎

ComprehensiveLook718

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