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What can I do now about GI issues?

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.
1 Responses
973741 tn?1342342773
No, I'd not think once every three to four months is chronic use.  I took ibuprofen daily for a few years due to chronic headaches.  THAT was chronic use (got rebound pain after a while, sigh, and stopped that altogether).  Have they examined irritable bowel syndrome for you?  https://www.mayoclinic.org/diseases-conditions/irritable-bowel-syndrome/symptoms-causes/syc-20360016  They have some medicines available that may help you.  
1 Comments
The doctor decided I didn't have IBS already because I don't have certain enzymes in my blood panel and no "typical symptoms" in my lower GI when they're looking for inflammation.  She also didn't think seeing an allergist would be helpful.
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