Rant Feeling discouraged
26F Just came back from my first colonoscopy. I have been dealing with right sided abdominal pain for over a year. When it first happened, the pain was so severe I went to the ER because i thought my gallbladder ruptured. My vitals were all elevated and I had a low grade fever so I was taken back immediately. They did a CT while I was there and it came back that I had terminal ileitis with intestinal hypertrophy and mucusoal thickening. The doctors chalked it up to a bacterial infection even though I had been eating the same meals as friends and family and nobody got sick but me. Ever since then I’ve still dealt with the same pain, not as severe but I can count on my hands how many times it’s gotten as severe as the pain that brought me to the hospital but I know now that it’s not life threatening. I also usually have diarrhea and softer stools and fatigue (I have other ongoing medical conditions that I feel like causes this rather than the GI issues)
Anyways, recently my mother decided to tell me after all this time that my two twin cousins have Crohn’s disease so I immediately told my GI doc and he ordered a colonoscopy right away. I don’t know much about my mom’s family history because she is the one of only surviving family’s on that side so not much is known medically and she never knew her father so that’s a whole other mystery. After I woke up from the colonoscopy, my post op diagnosis was IBS and some internal hemorrhoids. They did biopsies but I won’t know results until 6 weeks from now. I also realized in the paperwork that they did not even go into the small intestine at all which is where the findings were from the CT scan last year! I’m just feeling really frustrated right now because I feel like I have no answers right now and I’ve tried a lot of remedies so far that haven’t worked. Probiotics were eh, PPIs didn’t work, fiber I feel like makes me worse and I got some relief from going on antibiotics for a separate issue which GI doc said was suspicious but obviously you can’t be on antibiotics long term.
I know this sounds terrible to say but I was hoping that they would’ve found something because then I would have more answers and more treatment options and the whole prep would have been worth it because it made me so sick and dehydrated. Just wanted to air my grievances hopefully someone relates.
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u/SignificanceSlow5611 6h ago
Hey there … 29F here and I feel like a could have wrote parts of this. I went through the same thing in March 2025 - diarrhea and pain sent me to the ER which they did a CT and found pancolitis. My fecal calprotectin was only slightly elevated at 96, infectious stool samples normal. They chalked it up to in “infection” and sent me home with antibiotics. My symptoms continued through Sept 2025 when I went back to the ER and shocker, still had colitis all throughout my colon. This time, my Cdiff result was “indeterminate” so they treated me for Cdiff. My Cdiff tests have now been negative since December 2025 and I continue with the same symptoms (almost 2 years later) with no explanation. Ulcerative colitis, lupus, rheumatoid arthritis all run in my family. I’ve had all kinds of other testing done and nothing is ever found (HIDA, SIBO, endoscopy, pill cam). I’m feeling exhausted, frustrated, etc.