u/Important_Carrot_183

i was officially diagnosed with small bowel crohn’s, ileitis, this last week after dancing around the diagnosis for 5+ months. looking back i’ve definitely had symptoms since childhood.. urgency, constipation & then accidents, anxiety and pain around BMs, etc. fast forward to being a high school and collegiate athlete. i was exercising so hard i would have accidents, but was always too embarrassed to say anything. so i suffered in silence. now im 27, finally caring for my body the way i should be but im in limbo between starting a biologic and taking prednisone.

prednisone makes me hungry!!!! but then i get constipated & am trying to stay active but man when you haven’t pooped in 2-3 days it gets uncomfy and anxiety inducing.

my calprotectin was 2367 back in may, just came in at 481 this week. still high but think i’m out of this flare. my brain keeps waiting for someone to question my diagnosis or have someone say it’s not real…. but this is life. waiting to get a pelvis mri enterography to find my fistula named karen… she’s a bitch we hate her

sending anyone struggling love & support. you’re amazing and are trying your best!!!!

probably a pointless ask but has anyone camped up near paulina or east lake today? i’m hoping to snag a first come first served spot & have no idea if that’s even possible. i just want to be outside in nature lol, got some pretty brutal health news this week & just want to wake up with the birds 😅 im open for camping anywhere

i (27F) finally got my diagnosis of small bowel crohn’s disease. after months of fighting for people to listen to me and a failed colonoscopy i woke up and the dr said that i have severe ulcerating mucosa on my terminal ileum and ileum valve. they had to switch to a PEDIATRIC scope to get through the valve….. the heck. not to mention the gray color of my intestines…. it was insane. she ordered MRIs with contrast to see the rest of my small and large intestines as well as try to find the fistula that i KNOW is there. she mentioned infliximab/remicade, hoping i wont have to wait the 6 weeks to my scheduled appt to actually start them. i’ll update when the biopsies come back!!

grateful to finally have an answer, scared of what is to come. this community has been such an amazing space and im grateful to have found it. 🫶🏼

colonoscopy #2 cause my first prep failed. i got thru the 4 dulcolax tablets and an entire bottle of miralax & then i was shitting out of my ass & my rectovaginal fistula that DOCTORS HAVE IGNORED ME FOR MONTHS ABOUT. the uncomfortable, disgusting nature of doing 2 days of prep with an open fistula & now a fucking uti/bladder infection is cruel work. i spent 8 hours at the ER last night. they did a pelvic ct scan with contrast & couldn’t see the fistula but i had a ton of inflammation and thickened walls around my terminal illeum. long story short drs are so dismissive, why don’t ppl write or read charts??? why am i telling 12 different people the same story????

i just want my diagnosis so i can start biologics and now im probably going to need a referral to colorectal and who knows HOW LONG that will take…… fuck this disease sucks. 🫩🫩🫩🫩

i went in for my first egd & colonoscopy and my gallon of gavilyte g didn’t completely clear me out.. it took 5 hours for the first dose to kick in… so i woke up and they said sorry girly you’ve gotta do another.

the biopsies they took all point to crohns.. but now i have to wait until AUGUST 4Th for my next one…….. i want to start meds and begin to feel better. feeling defeated & sad and a bit scared. now i get to do 2 day prep & start with dulcolax & miralax followed by my gallon 🤪🤪

hoping for a quick turnaround and some genuine relief soon

hi :) i’ve recently gotten really sick and had to quit working, couldn’t eat anything without extreme digestive upset, low energy, the works. i ended up at the er with what i thought was a bartholin cyst.. after a round of antibiotics, an IND and ANOTHER round of antibiotics it still hadn’t gone away. so i started looking at correlation between my GI issues & flares of the cyst.
after loads of abnormal test results followed by inconclusive ones. i found a naturopathic dr who specializes in GI health to run more tests (lol) i just got my calprotectin fecal test back & my level was 2327… it looks like normal is 50 & abnormal is 120+. the naturopath recommended an iron infusion because my ferritin level was 11.7 and my iron absorption was a 7.. yikes

i have a consult with a gastroenterologist to schedule my colonoscopy and hope it can give me some concrete answers next week.. along with my drs agreeing to cover my infusion cause i can’t afford it. im hoping im on the tail end of a flare up… i couldn’t eat for days & am surviving off of hard boiled eggs, probiotics, water + electrolytes and yogurt.

this subreddit has provided me a lot of insight & comfort knowing i’m not alone and that there are other people who are unfortunately going thru similar symptoms while continuing to live their lives.

i guess id love some tips or advice on navigating the diagnosis journey, IBD/crohn’s recommendations for electrolytes, or other things that have helped you feel better. or if you’ve had any experience with a cyst or fistula of some kind, the random pains and weird feelings i get down there are obnoxious and not comfortable at all.

idk, it’s just been lonely staying at home on my own not feeling well.. thank you if you’ve made it this far <3 i hope you’re healing & feeling better than you were yesterday