# Chronic appendicitis? Has anyone had it?



## PD85 (Aug 19, 2010)

Has anyone had chronic appendicitis? Or had an appendectomy where the surgeon said they had some kind of chronic problem with the appendix?

I recently took some antibiotics (my first time in 10 years taking any that would reach the large intestine) and the tender, constant pain in my lower right groin completely subsided. I was in shock. I had been brainwashed to believe this pain was unrelated to my IBS, but my IBS symptoms also greatly improved. Now I am off the antibiotics and everything is coming back.

I have had this pain in my lower right abdomen for 9.5 years. The pain is constant and never goes away, it is also tender to the touch. I had previously been convinced by the doctors, and eventually by my own mind, that this pain was either imagined or due to a hernia and hernia repair causing long term damage.

BUT, I also occasionally get flares of this pain where my bowels lock up (can't defecate), severe lower right pain, fever (102.5), fast heart rate (126 while at the hospital 10 days ago), nausea, blacking out of vision, etc. This lasts for 24-48 hours. I used to go to the ER all the time for it, but my doctor's somehow didn't think this was worth noting and nothing appeared on CT scan. However it usually took so long for them to get to a CT scan that the episode was "mostly" over.

Anyways, I'm hoping to connect with someone who's had a similar experience and has perhaps undergone an appendectomy that did fully diagnose their condition. It's my theory that all of my pain and IBS issues have been an active infection this whole time, either chronic diverticulitis or appendicitis.


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## Hatemybowels! (Apr 3, 2016)

I replied to your post on my thread but I've always heard diverticulitis causes pain on the left side. I'm hoping to see my PCP tomorrow and I was going to ask about possible chronic appendicitis. Guess I'll ask about the other too. Now I'm really scared!


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## andreea (Dec 20, 2013)

i''ve always had lasting episodes of pain in my right lower abdomen,one of them currently. i've had a surgeon feel it 12 yrs ago,said it was a early onset of apendicitis. took antibiotics and the pain subsided.i have reocurring bouts of pain though lasting more than a few weeks.


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## PD85 (Aug 19, 2010)

andreea said:


> i''ve always had lasting episodes of pain in my right lower abdomen,one of them currently. i've had a surgeon feel it 12 yrs ago,said it was a early onset of apendicitis. took antibiotics and the pain subsided.i have reocurring bouts of pain though lasting more than a few weeks.


Very interesting. In 2011 after a CT scan I was diagnosed with early onset appendicitis and was given the option to operate but I declined because I was starting a brand-new job the next day. It was my first job after being jobless for 4 years due to my IBS. Funny how the world works.


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## PD85 (Aug 19, 2010)

Hatemybowels! said:


> I replied to your post on my thread but I've always heard diverticulitis causes pain on the left side. I'm hoping to see my PCP tomorrow and I was going to ask about possible chronic appendicitis. Guess I'll ask about the other too. Now I'm really scared!


95% of the time diverticulitis is located on the left side. It is possible however to have right caecal diverticulitis, so it can't be ruled out.


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## Hatemybowels! (Apr 3, 2016)

My doctor said she thinks my issue is something going on with my ovary. She did some blood work and ordered an ultrasound but they haven't called to schedule it yet. She did say it's highly unlikely to be diverticulitis. I've had a colonoscopy a couple of years ago and a CT for left sided pain and they were clear then. I know things can change fast though. She didn't think it was my appendix because the pain was lower than typical appendicitis. She did a thorough physical and said my urine came back fine. Guess I'll find out more once the blood work comes back and I get the ultrasound.


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## Lorelei56 (Apr 7, 2014)

I had it as a child. My appendix was infected and healed against the wall of another part of my intestine so every time something moved in there the appendix would stretch and I would get excruciating pains. Nothing was done until I was an adult and they had to do exploratory surgery to find out where the pain was coming from.


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## PD85 (Aug 19, 2010)

Lorelei56 said:


> I had it as a child. My appendix was infected and healed against the wall of another part of my intestine so every time something moved in there the appendix would stretch and I would get excruciating pains. Nothing was done until I was an adult and they had to do exploratory surgery to find out where the pain was coming from.


Wow. So after the surgery did the pain resolve?


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## cityboy67 (Aug 29, 2018)

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) and if your symptoms don't change based upon what you eat. 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.


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## PD85 (Aug 19, 2010)

cityboy67 said:


> 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.
> 
> ...


What an amazing story you have. And it's so similar to mine! I started tearing up reading this because it reminded me of the torture and horror I went through with my chronic appendicitis. The part where your son would show up on your bedroom floor really hit home. That was me too. It was too painful to do anything but lay on the floor. Standing, walking, etc, all completely out of the question. Thank you for your story. Your post could truly save someone's life. There are people out there who will do a Google search for chronic appendicitis and find this thread. I hope what you have shared can save someone because chronic appendicitis is a real thing.

I have an update to my situation as well:

After the antibiotics cured my pain and fever, I basically knew I had been having appendicitis attacks for the past 10 years. So I requested all of the medical tests and records from every ER hospital visit I had been to with an appendicitis attack. In total, I had 4 different CT scans and a lot of different blood work over the years. I booked a consultation with a surgeon at Kaiser and what an amazing man he was. We reviewed all the CT scans and diagnosis from my ER visits. The common finding of every clinician during the ER visits was this: Enlarged mesenteric lymph nodes and enlarged periappendiceal lymph nodes. The diagnosis of several of them was Mesenteric Adenitis. Prior to meeting with the surgeon I had googled this diagnosis, only to find that it's not a common condition and that it is usually secondary to a more serious infection, such as appendicitis. My surgeon was totally on the same page. He said in the CT scans that my appendix was borderline inflamed and that with the mesenteric adenitis, fever, high heart rate, intense pain, that it was almost certain I had been having appendicitis. So with his support, I elected to have the surgery.

It's now been 1 year and 2 months since the surgery and I haven't had a single attack or pain again. I am 99.9% sure that I had chronic appendicitis. The only reason I don't say 100% is because I am so afraid of the pain, that I do not want to act boastful and like I conquered it. I am truly scarred emotionally from it. Like your son must know, it is one of the most painful and traumatic things someone can experience. You actually think you are dying, and both he and I had to go through it dozens of times. I am still afraid to do many things because of it, but I am trying to get better. Also, my IBS stayed exactly the same and did not improve even 1%, which really sucks









A few facts about appendicitis that I've learned:

-Chronic appendicitis can exist

-The appendix does not always burst during appendicitis. The body can heal the infection before it bursts. Appendicitis is only an emergency when the appendix ruptures.

-If you catch it quickly enough, you can just take antibiotics and it will cure the infection. Then you can elect to have an "interval appendectomy" at a later time. This is becoming much more common in the medical field as it's way less risky to do a surgery when you can prep for it.

-One common mis-diagnosis is mesenteric adenitis. This is so extremely rare in adults that it almost assuredly means appendicitis.

-The pain can be in the bottom right abdomen, the right side near the right hip bone, or even felt in the right side back, all depending on which way your appendix comes off of the large intestine. Most commonly it is felt in the front of your lower right quadrant. In extremely rare cases the appendix can be on the left side. A CT scan would reveal if you have a left-side appendix or not.

-If you press on the pain, it will hurt and then you might feel some relief. But when you let go of the pressure, it will hurt again. This is called "rebound pain" and is a tell-tale sign of appendicitis. (I had it in spades).

-You are likely to have a fever and tachycardia (fast heart rate) but your white blood cell count (WBC) will not necessarily be high! (mine wasn't)

-Reasons that doctors might miss the diagnosis are:

-Paucity of fat (you are too skinny for them to see the inflammation on CT scan)

-Too much fat (you have too much fat and it's hiding the appendix on the CT scan)

-Too much stool in the colon (stool is messy on CT scan and can cause it to be hard to see things clearly)

-Normal WBC

-Appendix is "large-normal" or "borderline inflamed"

Hopefully all these posts helps someone!


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## Desert Fox (Jul 24, 2017)

I



cityboy67 said:


> 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.
> 
> ...


I feel very sorry for your son's ordeal.


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