Possible Crohn’s but still no clear answers
Hi everyone. I’m 29M and I’m hoping to hear from anyone who has gone through something similar.
About 7 months ago, I suddenly developed uncontrollable diarrhoea and ended up going to the ER. I tested positive for C. diff and was treated with antibiotics. After that, everything returned to normal for about 3 months. During that time, I was extremely careful and avoided anything I thought could trigger a C. diff recurrence.
Then I got a cold/flu, and shortly afterwards the diarrhoea came back badly — around 12–18 times a day. I went to my GP, who did stool tests, and C. diff came back negative. He then referred me for a gastroscopy and colonoscopy with biopsies to try to figure out what was going on.
The biopsies came back inconclusive, but there were clear signs of inflammation in my bowels. My CT scan showed mesenteric fat stranding around the terminal ileum, and during a laparoscopic procedure a few days later to remove my appendix, the surgeon also saw inflammation/fat changes around that area.
Because I smoked for over 10 years and Crohn’s disease runs in my family, the surgeon suspected I might have a mild case of Crohn’s. She started me on budesonide 9 mg daily.
For the first few weeks, I improved quite a bit. I was still going about 3 times a day, but it was no longer watery diarrhoea — just soft stools. Then the stomach pains started again, followed by diarrhoea again, this time with mucus and streaks of red blood. Keep in mind I also followed a strict diet the dietitian in the hospital gave me for Chrons patients.
I contacted the doctor, and she advised me to continue budesonide for another 3 months and also prescribed mesalazine 800 mg daily. Unfortunately, that hasn’t really improved anything.
I’ve now seen a gastroenterologist, and he wants me to stop the budesonide and mesalazine and repeat the colonoscopy with new biopsies. He said it does look like Crohn’s, but it could also be something else, such as a bacterial infection or virus mimicking IBD.
Has anyone else had a similar experience after C. diff, where symptoms returned but C. diff tests were negative? Did it end up being Crohn’s/IBD, post-infectious IBS, another infection, or something else?
I’m honestly exhausted and stressed. It feels like an endless battle with no clear answers or proper treatment plan yet. Any advice or similar experiences would be really appreciated.