So for years 6-ish I believe, I've been dealing with doctors trying to find resolution for chronic stomach and abdominal problems, as well as fistula outbreaks in the rectal area. Three surgeons (all colorectal surgeons) & a dermatologist since my skin has been seriously suffering during this time
I've done an MRI, the first EDG & colonoscopy only showed polyps, then I went to a new doctor. Did another MRI and EDG/Colonoscopy. My esophagus was pretty burned (was getting heartburn from jello on the clear liquid diet), and they showed signs of inflammation in my small intestine/stomach opening.
I've been being really careful to eat regularly, drink more water, but there's no weight loss, no easing of the discomfort. Even fiber powders destroy my insides to a painful degree. Probiotics including kefir & plain old yogurt cause an insane amount of discomfort.
I've had issues with chronic constipation and diarrhea since I was a child.
I've had to get my rectum repaired surgically twice in the last 2 years and now they want to do it again.
But the doctor said that the inflammation is "due to anti-inflammatory medicines.". In order to have NSAIDS mimic this type of chrons disease, I have to be a regular user. I don't think once every three to four months counts and I've gone long stints without any NSAIDS and still had issues, including as a child when my mom didn't give them to me.
I'm supposed to be doing a follow up visit tomorrow as the EDG/colonoscopy was done just a few days ago. But I'm at the end of my rope. I don't need another doctor writing me off because they can't take me seriously. Because I might actually have an uncommon form of chrons disease. What can I do? What do I even say? I have inflammation that is literally the same as an uncommon form of chrons but she's just going to tell me I don't have chrons. These were in her test result notes. I also have iron & vitamin D deficiency which are also symptoms of chrons. What am I supposed to do when they're going to tell I'll suddenly be miraculously healed by stopping ibuprofen but then turn around and tell me I need my butthole surgically fixed for a third time?
Maybe I just need to vent, or see if anyone else has had this issue and no doctor trying anything or diagnosing so they can get a treatment plan. So far I've gotten Prilosec and "try a different fiber powder." I'm ready to give up and just suffer or maybe thrown in the towel completely because now it's causing a lot of muscular pain in my abdominal area too.