Chronic Appendicitis vs. Irritable Bowel Syndrome (IBS)

I am writing because the word needs to get out.  Chronic appendicitis does exist!  Here is my story.  My son was a freshman at college and became ill in November 2017.  His stomach hurt, had lower right quadrant pain, vomited and had diarrhea.  His symptoms would lessen and worsen depending on the day and he began to come home every weekend.  He consistently had diarrhea and would also have flare ups where sometimes he would vomit (though not always) and his pain in his stomach lower right quadrant would worsen.  As we got into January of 2018, he also began to develop chest pains and other body / joint pains along with an elevated heart rate.  The pain would at times radiate to his sides and back.  Over a period of six months, I took him to the emergency room five times and every time they sent him home with no particular diagnosis.  He had every test under the sun including MRI’s, CT scans, ultrasound of the abdomen, upper endoscopy, colonoscopy, video capsule endoscopy, gallbladder function test, SGI blood test for IBD, stool cultures, over 25 blood tests and the only diagnosis he ever received was IBS.  The only abnormal finding that came back from his MRI’s was minor swelling of his mesenteric lymph nodes which the doctors wrote off as a remnant of stomach virus.  Nicholas saw 12 doctors including four gastroenterologists, three rheumatologists, two general practitioners, two general surgeons, and an oncologist.  We ultimately settled on a gastroenterologist who diagnosed him with post infectious IBS and put him on low dose antidepressants to help with the pain.  I knew in my heart of hearts this was not IBS.  Nicholas would show up on my bedroom floor at 2:00 am in the morning in agony and I would rush him to the ER.  We kept him home for his second semester of college so that we could work on getting him better.  When we would go to the ER, I would always suspect that this was the visit that was going to produce an MRI proving he had an appendicitis but it never did.  By January 2018, I began to spend my days doing research and immersed myself in my son’s illness and how to get him better.  I learned a tremendous amount about a lot of various potential diseases and kept coming back to something that I read about in the blogs called chronic appendicitis.  I asked his gastroenterologists about the prospect of chronic appendicitis and they all basically said that there is “no such thing as a chronic appendicitis”.  They explained that if he did have an appendicitis then his white blood cell count would be high, he would have a fever and an appendicitis would show up on the MRI’s that he had gotten while in the ER.  They diagnosed him with IBS, the go to diagnosis when they can’t figure out what is wrong.  I began to reach out to general surgeons on my own.  In March 2018, we met with two surgeons, one who said that he would do surgery but was not optimistic and another who said he would do exploratory laparoscopic surgery and while in there take the appendix out.  This surgeon said that over his 20 year career there had been several situations when an MRI had come back negative and the patient had lower right quadrant pain and he went in and removed the appendix and that person felt better post surgery.  He was willing to do the surgery and said that while he could not guarantee Nicholas would feel better, he said it was reasonable to do.  I took this news back to my son’s gastroenterologist and was met with a reaction of “a chronic appendicitis does not exist” and that he strongly cautioned against the surgery and that it was unnecessary and would fail – in so many words questioned the surgeon’s ethics and said that it would be irresponsible of me to move forward with this.  So, we were in a holding pattern with things not having gotten any better and by this time it was May and once again my son was in my bedroom on the floor in pain and I told him we were going to the ER.  I met up with the surgeon while in the ER and we agreed that it made sense to move forward with the surgery notwithstanding what gastro said.  Nicholas went into surgery that morning at 8:00 am and the surgeon came out about 30 minutes later with a picture of an appendix that was clearly inflamed to his naked eye and was confirmed by a pathology report two days later as an appendicitis!  When Nicholas woke up from surgery I could immediately tell he felt better just by looking at his face.  His symptoms were gone; no more stomach pain, no more right lower quadrant pain, no more diarrhea, no more vomiting, no more flare ups.  Long story short, he fully recovered from surgery in about three weeks and he is now back at college (August 2018) feeling 100% with no remaining symptoms.  Textbook (excuse me, this is not in the textbooks) case of a Chronic Appendicitis.

I don’t know why the gastro community is so against considering this as a diagnosis but they are and it is frustrating.  I sent Nicholas’ gastroenterologist an email with the great news and his only reply was “glad he’s feeling better”.  Without reading other peoples’ stories about their chronic appendicitis, Nicholas would still be in pain with diarrhea and heading to the ER every month.  I felt it was very important to give back and fortify these peoples’ stories with additional proof.  Now, I’m sure Nicholas’ story is the exception rather than the rule but here is my non-medical trained checklist of a possible chronic appendicitis (not all are necessary): right lower quadrant pain (his pain would come and go), stomach pain, diarrhea, vomiting during flare ups, other body pain (chest pain, join pain), your symptoms don’t change based upon what you eat and you don’t have excess gas and bloating.  If you have these symptoms and your gastroenterologist tells you chronic appendicitis does not exist he is just flat wrong.  Challenge that and go see a general surgeon.  Best of luck to all of you searching for an answer and I hope this story helps at least one person.

1 like, 1 reply