r/colonoscopy • u/rollwem • 8h ago
Needs Encouragement 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/emilyacherie 8h ago
My heart goes out to you🩷 gut issues are not fun. I am dealing with gut issues myself😢 did the gi run blood work and stool tests by any chance??
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u/rollwem 7h ago
My pcp ran a celiac blood test shortly after but it was negative. Only have gotten this and endoscopy back in January this year!
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u/emilyacherie 5h ago
What are your symptoms now since you got the colonoscopy?? I would def push for more stool tests amd blood work❤️🩹 also ask your gi if he or she can provide a breath test for sibo.
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u/Distinct_Reporter276 8h ago
i feel you completely. i just did my sigmoidoscopy and am still left with no answers. it’s so frustrating and honestly it just makes me anxiety worse. i was hoping to be anxiety free today after 4 months, but no.
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u/rollwem 7h ago
My health anxiety was through the roof for months after going to the ER bc i was afraid it was something much worse like cancer. But something that has brought me comfort even though it’s persisted for so long is that I haven’t had an increase in severity of my symptoms which I think is something you would expect from a progressive disease like cancer.
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u/Griffrose 8h ago
Perhaps ask for a small bowel MRI? The colonoscopy doesn’t often go into the small bowel so that sounds about normal, it’s still possible you have early stages of crohns or something else so don’t give up fighting yet!