Chronic Appendicitis vs. Irritable Bowel Syndrome (IBS) - Chronic Appendicitis Does Exist

[cityboy67]

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 and lower right quadrant would worsen. As we got into January of 2018, he also began to develop chest pains and other body / joint pains. 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), symptoms don’t change based upon what you eat, no highly abnormal gas or 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.

[Cjc_woodworx]

I get pain down my lower right without vomiting have been doing for 6 years with my ibs apparently it's a common place to get ibs pain

[b1b1b1]

Thanks for this story. I think there are many cases where people see a lot of doctors and get no good diagnosis and are just brushed off. Your persistence is so admirable. Am glad it worked out.xx

[Maureen1958]

Hi, just wanted to thank you for taking the time to post this. Now that this post is "out there", it may help someone. Before I became part of the HealthUnlocked community, I often saw posts from this website by goggling varies questions. Thank you again for this and I hope your son does well at college and has a great life. Maureen.

[Eternity78]

Such an inspirational story ! the heart of a parent 💝 and your personal persistant research to seek the root cause of your son's agony surpassed all those " medically & experienced" doctors' ability to reach a correct diagnosis !! well done 👍and Thank you so much for posting this achievement to prove that we should always listen to our bodies , follow our heart , read and be open to other possibilities that the medical community would rather dismiss or even never recognize in the first place !! Hope one day the term IBS would vanish and a real diagnosis with clear pathology and treatment could explain and truly heal our so called " IBS symptoms " .

[Slowdown]

This is where the forums are so invaluable in exchanging information via our personal experiences and outcomes. A harrowing story for you and your son but due to your persistence, research and a lot of love, a great result, so glad. Thank you for adding to our collective knowledge. Best wishes.

[Jules4971]

OMG thank you for this. I recently had to rush to A&E because I had really bad abdominal pain. I had my gallbladder removed in 2011 which went wrong, I had a clip from the bilary tree fall off and is still in my lower left quadrant. So, I knew pain! Anyways cut a long story short - Cypriot Dr in A&E did an x-ray and I was full of gas. I didn’t realise that walking in from 40-50 degree heat into a air conditioned room gives you gas?! Who knew but I was convinced I had appendicitis. I couldn’t sit up straight I was in agony. I have been diagnosed with Ulcerative Colitis in 1993 and suffer mostly from constipation. It’s horrible.

[LCat]

I’m not surprised to read this. Great how you did this. In the subject of Gastroenterology we are still in the Middle Ages : very little research done in this area. ‘IBS’. means : we don’t know what it is, we don’t know what causes it and therefore we can’t treat it. Those very few Consultants highly specialised in the subject admit this and they believe it’s caused by various conditions which we don’t understand yet. Yet the others continue to have this arrogant attitude (arrogant whilst ever so ignorant) : if main stream medicine says this ‘blahblahblah’ .... this is the bible and they just repeat it .... even though they know close to nothing about this particular subject. And you’re so right : you have to challenge those narrow-minded inflexible views.... otherwise you’re doomed. I had a similar situation with my husband in another subject (too long to explain here). Don’t just blindly trust what they say, in particular, regarding a specific subject where they haven’t got a clue yet. One day, hopefully, so-called ‘IBS’ will be better understood (but that will take a while) and then I’m sure it won’t be called ‘IBS’ but will be given a different name. Thank for writing this ...for all of us.

[MarsRover]

I had chronic appendicitis about 10 years ago. My pain was deferred to the middle of my abdomen. My doctor kept giving me acid blockers like Tagamet. I found a case history online of someone who had chronic appendicitis and it sounded just like what I was going through, so I told my doctor about it,and he said flat out that chronic appendicitis doesn't exist. Appendicitis is always acute,he said,never chronic. I had an ultrasound examination, and during the procedure I had to run to the toilet and vomit. Doctor said the ultrasound was inconclusive. A few weeks later, I took myself to the ER because I was in so much pain and had a high fever. It was the intake nurse who said "you have appendicitis". I told her no, my doctor says I don't. But the ER doctor called for emergency surgery,and sure enough, my appendix had already ruptured some time ago, and was gangrenous. They got rid of the mess and sewed me back up. I was in hospital for a few days on IV antibiotics. When my doctor came in to see me, he said ,"Chronic appendicitis! This is something we rlhear about but never see,". I just said," Yeah, well SEE ME."

CHRONIC APPENDICITIS IS REAL.

[cosmomurillo]

This is my daughter to a T! She has been dealing with this since May and we are finally get a scope done. She has had multiple blood test all normal x days and ultra sounds also all normal. I’ve taken her in to the ER multiple times this last time thinking we were finally going to get the answer we’re looking for! Everything came back normal again. Both of us in tears with frustration and her saying mama something is wrong with me and I just want to feel normal again which breaks my heart! She is 10. She is a competition gymnast in the gym 4 days a week to know having to skip practice and come home early from school just to lay on the couch. I to asked our gastroenterologist about chronic appendicitis and she said it’s not a thing just something google came up with but I Continuously find more and more cases of it. My gut tells me this is what she is dealing with as it’s a chronic everyday pain then she will have episodes every few weeks of extreme I can’t move pain. So frustrating!!! I’m glad your son is feeling better!