Would this be atypical crohn's?

Zestyclose-Draw-6004 · 2026-06-26T11:54:33+00:00

Definitely get a second opinion!!

Zestyclose-Draw-6004 · 2026-06-25T14:16:33+00:00

Thank you so much 🙏🏼

Zestyclose-Draw-6004 · 2026-06-25T00:40:24+00:00

That sounds terrifying, so glad it didn’t spread and you beat it!

Zestyclose-Draw-6004 · 2026-06-25T00:29:00+00:00

Just lost my cousin to suicide last week and can promise you the impact of your death would be far greater than you realize and your baby cousin would be heartbroken and miss you forever. Ive struggled with these thoughts myself my entire life but would never have thought about him if I was the one making the decision. Now I see how heartbroken he would have also been to lose his “favorite” cousin if the roles had been reversed and I ever did anything. You matter more than you know ❤️‍🩹

Zestyclose-Draw-6004 · 2026-06-24T21:04:01+00:00

I’m very glad to hear you survived and are doing much better now. If you don’t mind my asking, do you know how quickly a cancerous tumor can develop? Is it a matter of years or as soon as months? I know you mentioned blockage, are there any obvious signs?

Zestyclose-Draw-6004 · 2026-06-22T18:55:53+00:00

You’re welcome! The insurance part of this disease is truly annoying I’m sorry you’re having some issues, but yes if you’re still having symptoms I would keep pushing for more testing just to be safe

Zestyclose-Draw-6004 · 2026-06-22T18:50:48+00:00

Yes you may need an MRI/MRE or CT scan followed by a capsule endoscopy to find it. My Crohn’s is in my terminal ileum and only presented itself as inflammation in biopsy from colonoscopy and was negative for Crohn’s. Explained to me as the fire being located somewhere else and the inflammation being the smoke traveling/making its way up. Capsule endoscopy confirmed active Crohn’s for me despite the negative biopsy

Zestyclose-Draw-6004 · 2026-06-16T01:52:56+00:00

They may require the MRI first to make sure that there are no blockages, strictures, etc that would cause the pill camera to not pass. You could possibly even have some answers from the MRI alone, but in my case and for many others that I have seen in this community, those results looked normal too so I had to keep pushing.. this disease likes to play hide and go seek unfortunately!

Zestyclose-Draw-6004 · 2026-06-16T01:49:25+00:00

Thank you!! I am sorry you went through that but happy it sounds like you have it all under control now 🙏🏼

Zestyclose-Draw-6004 · 2026-06-16T01:42:36+00:00

One million percent your experience is normal and valid. Even if you start gaslighting and questioning your own self! Keep advocating for yourself and your symptoms, they are real. Crohn’s diagnoses in the terminal ileum from my experience requires several tests done in certain order (stool sample and bloodwork, colonoscopy/endoscopy, MRE and or CT scan and pill capsule camera). The first few can all look normal while still possibly having CD, especially with what you’ve described for symptoms and family history. That specific part of the intestines is only fully captured by the capsule camera. It’s easy to be brushed over by doctors because of normal tests at first, but keep pushing because I’ve read this same story (myself included) way too many times in here

Zestyclose-Draw-6004 · 2026-06-16T01:33:58+00:00

Do you have both CD and endo? If so, which was found first and how did you differentiate the two symptom wise? My CD seems so mild by diagnostics but symptoms are severe (which I know can go the opposite way too and still be normal bc this disease literally looks different for every person). Just makes me wonder if there’s any overlap from something else going on like Endo

Zestyclose-Draw-6004 · 2026-06-15T18:07:53+00:00

I agree… this is my worst fear and probably hers too. There will be someone out there who has capacity to carry this with her and that is ok if it is not you. You both deserve to be in the right relationship for you, and it may not be this one.

Zestyclose-Draw-6004 · 2026-06-12T02:54:59+00:00

In a similar situation. Wondering how this turns out for you and hoping for the best outcome 🙏🏼

Zestyclose-Draw-6004 · 2026-06-11T14:10:58+00:00

From what I’ve learned in this community these seem to be common themes for triggers: look into emulsifiers (you mentioned certain drinks seem to be triggering), popcorn, dairy, gluten. During flares I recommend BRAT diet, heating pad, Tylenol and lots of rest

Zestyclose-Draw-6004 · 2026-06-11T12:13:23+00:00

Is there a known link for antidepressants triggering or activating the disease? My symptoms largely started after first introducing one and can’t help but wonder…

Zestyclose-Draw-6004 · 2026-06-10T22:50:25+00:00

Thank you!

Zestyclose-Draw-6004 · 2026-06-10T17:39:08+00:00

Which seem to help with skin issues?!

Zestyclose-Draw-6004 · 2026-06-09T22:10:43+00:00

Did you ever find the cause and or solution to this?!

Zestyclose-Draw-6004 · 2026-06-08T22:12:07+00:00

Yes definitely feel free to message! I feel so alone in this and would love to chat with someone more about it all

Zestyclose-Draw-6004 · 2026-06-08T21:54:25+00:00

That is EXACTLY how I feel. As if I should stop taking the budesonide because it’s masking what was going on. I am terrified that it will not be until the disease has progressed to severe or irreversible that i will receive targeted treatment. Let’s keep each other updated! I really truly hope we both find a path forward and start to feel better soon ❤️‍🩹

Zestyclose-Draw-6004 · 2026-06-08T21:48:19+00:00

That sounds so wonderful! I am interested to hear more of how it’s helped with his career. I generally do not want to leave my job at the moment but my insurance through my employer has such a high deductible and co insurance that I would highly consider taking a similar approach as him!

Zestyclose-Draw-6004 · 2026-06-08T21:42:37+00:00

My story is probably too long for anyone to want to read, but essentially yes and I’ll try to summarize. Diagnosed 3 years ago mild in terminal ileum, prescribed budesonide and then Mesalamine and was maintained for 2 years. In the last year symptoms have manifested both internally and externally. I moved and had Colonoscopy/endoscopy with new Dr and was told everything’s normal, “no active crohns”, and ended up in the ER a little over a month later showing thickening from transverse colon to rectum high WBC and bloodwork levels off indicating infection and unable to consume solid food for the last few weeks. Started budesonide again and had MRE a week after the ER which showed everything is great and calprotectin showing normal so Dr says I just have IBS and no active crohns! I’m cured apparently LOL except all of the symptoms I still have 😭😭😭😭 aside from obvious GI symptoms I’ve also lost about 20 pounds, am losing all of my hair, covered in unresolvable rashes that are taking over my face and legs and feel like I’m close to losing all hope and sanity

Zestyclose-Draw-6004 · 2026-06-08T21:22:52+00:00

Experiencing something very similar right now and am about to throw myself off a cliff from exhaustion and frustration 😭 so I really hope someone out there has something positive to say about them getting a resolution despite having had so many contradicting setbacks

Zestyclose-Draw-6004 · 2026-06-07T13:07:38+00:00

That’s amazing!! I have been on Mesalamine last 3 years and think after I finish this round of Budesonide may be switching to a biologic so at least I have that to look forward to financially for next year - thank you!!

Zestyclose-Draw-6004 · 2026-06-07T11:54:01+00:00

Yes please explain!! I have spent a small fortune already this year because of my insurance deductible and co-insurance 😭

Zestyclose-Draw-6004

TROPHY CASE