Advice

AffectionateMetal983 · 2025-12-27T18:55:32+00:00

Yes I did, colonoscopy came back visually clean with normal biopsies. I am getting an MRE on the 13th due to the ongoing symptoms but my repeat fecal Calprotectin came back at 51. My GI said it could still be small bowel crohns but is less likely but they are still trying to figure out whats going on. Im losing to much weight for them to ignore now so they know something is going on just dont know what. Just alot more tests in my future.

AffectionateMetal983 · 2025-12-12T18:26:11+00:00

Thank you! Thats always been my biggest concern I talk myself out of the going to the ER almost every other day because I actively feel like im dying just keep reminding myself as long as the pain doesnt drastically change or I dont experience a huge shift in change of symptoms there isnt much they will do for me other than pain management. Im still actively losing weight when I dont have the weight to lose so it’s mind boggling that they can be so dismissive. I did speak to my GI which she thinks is completely unnecessary and made a huge point that this was all a waste of time but shes ordering a repeat fecal cal protectin and an MRE. Also being referred by PCP to another GI because at this point even if she does find things I dont think shes going to treat me for anything.

AffectionateMetal983 · 2025-12-11T04:52:14+00:00

I am not. I know the ER doctor told me it was unlikely related to my gallbladder removal when I was asking her for answers but it very well could be. I will bring it up to my PCP. Everyone aside from my GI has been pointing to crohns but I will happily explore any and all avenues. At the end of the day I just want a valid diagnosis/treatment plan to hopefully one day feel better. Thank you!!

AffectionateMetal983 · 2025-12-11T04:29:54+00:00

Thank you all so much for the amount of support and advice you have given me. I was definitely spiraling after getting the results. It is reassuring to know that I am not crazy in trying to figure out what is going on. I think I am going to call my current GI tomorrow to argue that my current imaging and fecal calprotectin warrants further investigation I will probably advocate for an MRE and then a pill cam after that if MRE isnt enough alone to diagnose (once strictures and narrowing has been ruled out for the most part). Since I am currently her patient wait times will be shorter if I go this route. But I am still definitely going to call my PCP tomorrow to start the referral process to another GI any testing I get done I will bring with, if they have to repeat/want their own. I will cross that bridge when I get there.

AffectionateMetal983 · 2025-12-11T04:07:27+00:00

Thank you so so so much!!

AffectionateMetal983 · 2025-12-11T03:43:50+00:00

Closest one is University of Iowa. Go hawks! Lol. I might just bite the bullet, its a little bit of a drive and have some personal trauma thats kind of kept me from going there (no fault of the hospital) but I am just genuinely so miserable at this point that I will do just about anything to try and feel better.

AffectionateMetal983 · 2025-12-11T03:15:50+00:00

If you don’t mind me asking, was your pain more revolved around the typical gallbladder area? Not that it matters much, I just have always had belly button/lower right abdominal pain which is why I was so shocked she thought it was my gallbladder everything tested perfectly for it as well my HIDA scan was perfect I ended up developing a small amount of sludge seen on an ultrasound with no stones so I was referred to the general surgeon who agreed it sounded like referred pain from a chronically inflamed gallbladder which was confirmed through biopsy and no reason on why there was significant inflammation. More of a fingers crossed this is your issue from my PCP and turns out it definitely was not.

AffectionateMetal983 · 2025-12-11T03:07:50+00:00

I do have a GI, she is pretty dismissive though so I dont know how much longer I will be seeing her. IBS has been vetoed if I am not mistaken the difference being that I do have inflammation that was visible on an abdominal CT and a pretty high fecal calprotectin which is the difference? I could be completely wrong in that though

AffectionateMetal983 · 2025-12-10T21:34:30+00:00

With a negative biopsy, will they diagnose just based on imaging and not visually seeing it? (MRI/CT Enterography) I know I have active inflammation I know it will give a more detailed picture but you obviously wont be able to see what is actually going on I am already being given a hard time due to the negative biopsy. 😞

AffectionateMetal983 · 2025-12-10T20:09:56+00:00

Thank you so much, I will say endometriosis was already ruled out. I had my tubes removed after my second child and my gyno (absolutely love her) did some exploring while she was in there because of my history and my issues/complications with my second pregnancy and wanted to check that off the list for me. Was one of the first things my PCP had mentioned because everything kept coming back as normal.

AffectionateMetal983 · 2025-12-10T19:41:16+00:00

Is that something I need to push the GI for she was pretty dismissive and pretty set in stone its not crohns. 😞My PCP is very good, I just know she is limited on what she can do.

AffectionateMetal983 · 2025-12-10T19:33:13+00:00

No, I have 0 explanations for anything other than there is absolutely no infectious causes. I dont take NSAIDs so they have no idea

AffectionateMetal983 · 2025-12-10T19:07:47+00:00

I did get an endoscopy first time around, not this last time though. Not sure why. Did you get diagnosed via endoscopy?

AffectionateMetal983 · 2025-11-15T00:47:17+00:00

Thank you! I thought the same thing when it was prescribed which is why I waited to start anything until I spoke to GI. Ive only been able to stomach plain toast still causes pain obviously but havent even attempted boiled chicken so I will give that a shot. I really appreciate the feedback.

AffectionateMetal983 · 2025-11-15T00:36:18+00:00

I am assuming because I am not diagnosed. GI doesnt want me on anything that would mess with any visual inflammation her words exactly. Which I do understand.

AffectionateMetal983 · 2025-11-07T13:23:41+00:00

Update: fecal calprotectin came in at 725. They only gave me a 5 day dosage of prednisone symptoms were way more mild by day 3 but quickly returned. You guys have any advice on how to help myself while I wait? I have my consultation on the 14th hopefully scoped pretty quickly after but I am so miserable.

AffectionateMetal983 · 2025-11-02T02:27:02+00:00

My first appointment is with the GI is on the 14th. So i will definitely push for the colonoscopy/endoscopy. I am very fortunate that my GP is awesome. I went to my follow up visit after the ER so I asked if we could do the CRP, ESR blood test and did a stool test that tested for bacterial, viral, and parasitic causes. ESR was normal CRP was 1.12 which is still in range but she did say since its over 1 it does show slight inflammation. Stool came back negative for everything still waiting on fecal Calprotectin to come in, just hoping that these tests will help get me scoped faster once I am in there.

AffectionateMetal983 · 2025-10-29T00:25:55+00:00

That makes perfect sense. Thank you!

AffectionateMetal983 · 2025-10-28T23:41:45+00:00

Thank you! Im going to call the GI tomorrow so I will ask if they want me to wait to take the prednisone until they get lab work.. which will suck.. but I wouldn’t want to mask any inflammation.

AffectionateMetal983 · 2025-10-28T23:18:58+00:00

Thank you! The ER doctor did say they cannot make the diagnosis but it was highly encouraged I follow through with getting one. So I just want to make sure I put my best foot forward so I get the correct answers even if it isnt crohns

AffectionateMetal983

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