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General Surgery/chronic appendicitis?

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terra wrote at 2007-06-17 20:49:04
to whom it may concern You are incorrect about appendicitis. I have been walking around with undiagnosed appendicitits for over 3 years. The day I had surgery my white count was normal. That is why it was never found, I could have died. Finally I had an attack so bad I threw up for 6 hours straeight. My chiropractor found the appendicitits


Dr. Edwards wrote at 2007-07-15 14:58:54
You are unfortunately mistaken.  Your chiropractor is misinformed and practicing medicine without a license.   Appendicitis is an infection of a pocket of lymphatic tissue, a remnant, at the ileocecal valve.  The medical literature has sought out "chronic appendicitis," for years.  When patients with long term symptoms are closely scrutinized it is found they have another diagnosis.  The appendicitis course is rapidly progressive after the appendix becomes obstructed by a fecolith (either impacted stool, or some undigested object).  The closed space allows overgrowth of bacteria, causing edema and a pus pocket.  The progression of symptoms occurs over days, not years.  Resolution of symptoms occurs after appendectomy, a surgical procedure chiropractors do not perform and are unqualified to discuss.  You need a better health care provider.


roy wrote at 2007-11-12 20:22:16
I am a man with very similar symptoms to what the first woman described.  Several years of occasional pain exactly where my appendix is and similar.  Today did CT scan and Dr. says appendix is inflamed.  Same exact pain as for past several years.  Comes on  after I"ve been run-down, dull pain for a few days, but very uncomfortable and debilitating, and then fades slowly over a few wks.  Don't know if it really is "chronic appendicitis" or something else, but that's what they are calling it rt now.


enfue wrote at 2009-03-01 03:57:43
It has been my experience that chronic appendicitis does exist, having experienced it myself, in a pattern similar to what you describe.  My attacks occurred occasionally over 3 years.  Doctors repeatedly considered it an ovarian problem, even though ultrasounds never indicated that, and this was always excused with some explanation.  The least your doctor(s) can do for you is to order you a CT scan of the region sometime when you are experiencing pain.  That is what happened for me eventually, and I was rushed in for an emergency appendectomy.  Immediately after removal of the appendix, the pain disappeared, and I consider myself lucky that after a few near-misses, it never burst.  This is not trivial, and if ever there is a situation that warrants a CT scan, this is it.  Don't let the "she's a female, she probably has a female problem" medical mentality keep you in this vulnerable situation without adequate testing.


lorin wrote at 2009-03-31 19:08:06
i was sent to have an ultra sound during a pap and it i felt pain when she pressed on my right side, at ultra sound the tech pressed down hard and lifted up quickly and the pain was unbareable, this is apparently chronic appendicitis, since i had been having pain in my side for several months..now i am due for surgery in 3 weeks..have then press down and lift quickly, hopefully this will prove to be just that..chronic ..


Deana wrote at 2009-08-13 02:03:35
I had the same thing. However, I had rectal bleeding for 2yr. GI doc. said I had ulcerative colitis. I took everything they prescribed to me. But, during the entire treatment, I would have severe abdominal pains with low grade fever with no blood in the stool. They were talking immunomodulators since it seemed that I wasn't going into "remission". They did a ct scan. They found necrotic appenditicitis with adhesions of my bowels, free fluid in my abdomen and inflammation of my peritoneum. Once appendix out; all symptoms gone!!!!!!!


MelanieT3 wrote at 2009-10-12 06:41:47
I had about a year of symptoms of abdominal pain that waxed and waned in intensity.  My white count was always normal and no fever so appendicitis was always ruled-out. I was sent to a GYN Dr., who was ready to take BOTH ovaries diagnosing me as having PID.  This at the age of 24 yrs old.  THANK GOODNESS I didn't accept this and refused the surgery.  One day after having experienced severe abdominal pain ALL DAY, I walked in to our local General Surgeon's office begging for help.  He did an exploratory lap to be sure I didn't have any "female" problems, ie., cysts, etc., and if nothing found would remove my appendix.  It is a good thing he did....the pathology report came back with massive amounts of scar tissue from my appendix becoming inflamed and then going back down.  Had I not questioned my GYN Dr., I would not have the beautiful daughter I had a year later!!!  ALSO...this past three weeks, my 17 y/o son went through almost the EXACT same symptoms.  In and out of hospital ERs for over a year. He had his appendix removed....the Dr. said the appendix actually looked normal and diagnosed him with some lung disease that mimics appendicitis.  Come to find out, after receiving his path report from the appendix, his appendix had three areas where there was impacted fecal matter....appendicitis!!!  Goes to show you that it is OK to question the medical profession....trust your body and when you KNOW something is not right!!!


angell wrote at 2009-11-22 12:31:11
I have to say that this forum was a lifesafer-literally. I want to explain my situation and I hope that this helps other people who are in desperate need of help.



Two months ago I started having horrible pains in my right side. I thought that I was just having problems with an ovarian cyst because I have had problems with them in the past. After about a week of really intense pain it started to get worse and I decided to go to the ER. When I got there they immediately started telling me that it was probably appendicitis but they needed to do some testing. They did a CT, full blood work,Ultrasound, urine work-up and gave me pain meds through an IV. The doc said that the ultrasound showed that I had a uterun fibroid but that it was very small and that it would not be causing that much pain. She gave me the option of staying a day or two for pain control. I left that night still in pain and frustrated because I didn't have any answers. After another two weeks of pain I went to my OBGYN who had done a surgery on a ovarian cyst before. She said that she would do a laproscopy even though she didnt think she would find anything. I said I wanted to wait and see if the pain went away. The pain got progressively worse. I have never felt so much pain in my life and I was completly unable to walk or work. I would be fine and then I would have a pain attack and it would literally send me down to the floor crying. Five days after my visit with the OBGYN I called her and begged for surgery. I had the laproscopy two days later. She took pics of the ovaries, appendix and the area around it. She said that everything looked good and she wasn't able to fit anything. I came out of surgery very upset after learning that nothing had been done to help me.



I then spend another two weeks in horrible pain and finally decided to find the answer myself. I spent hours upon hours searching the internet comparing my symptoms to those of others with similar symptoms and stories. I found this site and a few others that seemed to talk about almost the exact same thing I had been dealing with. I thought that I had chronic appendicitis and I decided that I needed to find a doctor that would not only listen to me but would do elective surgery on me. As most of you know chronic appendicitis is very hard to diagnose and to get doctors to agree with that diagnosis. I took about 25 pages of reports and info showing that other doctors had seen this same type of thing with others.



I went to my family doctor and I described my long situation, the info I had found on line and my family history. In 1985 my mother had almost the exact same situation and she ended up going to the mayo clinic where a doctor had said that he wanted to take the appendix out just to see if that was it. She was instantly better after having the appendix removed. I explained this to my family doctor and she said she had seen a couple cases similar to this and she referred me to a surgeon.



I went to the surgeon the next day. I brought all the test results from the ER, the pics from the larposcopy, the OBGYN's surgery notes and all the stuff I found online. I explained the whole situation while he listened and his answer was that there was absolutely nothing wrong with my appendix. I asked him what he thought it was and he had absolutely no answers and no other tests for me to do in order to find an aswer. After explaining about my mothers situation (she was with me) he said that her doctor was a bad surgeon and should have had his license taken away because he had made a bad decision. I told him that if he wouldnt take my appendix out that I would find another doctor that would so it wasnt going to stop me, it would just cause me more pain and time. After arguing back and forth he finally threw his hands in the air and said that he would take my appendix out but he was completly against this and that it would not fix anything. His comment was, "if I am going to start taking out organs that are not having problems why dont I just go in and take our your gallbladder and anything else I see while I am in there." I then said, "why the hell dont you, maybe I will feel better then!"



I was scheduled for a laproscopy appendectomy three days later. He came to see me before surgery and kept repeating that this was a waste of time and money and that nothing was wrong with my appendix. After surgery he came out and spoke to my parents and said that the appendix was perfect and that this was NOT the problem at all. I would be in just as much pain as I was before and we had wasted his time.



A week later while recovering at home I noticed that I had NOT had the pain anymore and that besides healing from surgery I felt much better. I called the doctors office to get the results of the pathology report from my appendix. I was so happy to hear the results that I started to cry while on the phone. The report showed that part of the appendix was hemmoraging and was leaking pus and fluid into my abdominal cavity. The lymph nodes were very swollen and that it appeared that I had ACUTE APPENDICITIS probably a month or two ago but that it had somewhat resolved itself. The pain I was feeling was not only my appendix swelling but the fluid being leaked into my body. I almost fell out of my chair when the nurse told me that based on the report I was very lucky that I had the surgery when I did. She said that I would have ended up with it rupturing and having a serious infection which could be deadly. She said that if would have only been a few days or weeks until I would have really been in bad shape.



So, I find out that after the ER told me I was fine, the OBGYN had taken pics saying it was fine and the surgeon who took it out told me it was fine, IT WAS NOT FINE AND I HAD ACUTE APPENDICITIS FOR ALMOST TWO MONTHS!!!



I have a post-op appointment with the surgeon next week and I can not tell you how excited I am going to be to tell him to go to hell and that he needs to listen to his patients.



I wanted to share my story with you because it is so frustrating when you know that something is wrong and nobody will believe you. Through this ordeal I ended up in the ER four times and got the same answer every single time- your fine, go home. Please take your health in your own hands and fight for your rights. I am happy to say that it has all ended well, but there was no reason for me to go through two months of excruicating pain and suffering because nobody would listen to me.



If anybody needs any advice or would like any more info from me please feel free to write me. It is because of this exact site and a few others that I was able to diagnose myself and search out the right answer. I could have died because nobody listened to me, they just blew me off. I hope this helps other people. By the way I am a 26 year old female. I think that doctors also dont listen to the compaints of women as much or they automatically assume that its a "womans problem". I had two surgeries in two weeks because of all this ordeal. BUT finally I am feeling great.  


Rade wrote at 2010-04-22 10:17:06
I have been diagnosed with Chronic Appendicitis and trust me it does exist. I don't know who this person is who says that in their experience it doesn't but obviously they are not a physician and if they are, they are a very poor one.



My chronic appendicitis has been flaring up for more than two years. It was difficult to diagnose because I also had ovarian cysts and fissures so most of my pain was associated with that. However, last month I went in to hospital in severe pain on my right side; suspecting appendicitis they did a CAT scan and I wound up having an oophorectomy with exploratory surgery. They found that the appendix was inflamed but did not remove it during the surgery.



I just saw the General Surgeon yesterday who confirmed the diagnoses of Chronic Appendicitis and is recommending surgery to remove it; he feels that it should have been removed during the gynecological surgery and does not feel that I should put off the surgery for very long



Please don't listen to this person who told you that Chronic Appendicitis does not exist. It does and it is difficult to diagnose and oftentimes not found unless it is during a flare up and exploratory laproscopic surgery is performed. Johns Hopkins University has done an extensive study on the disorder and provides some good information on symptoms, diagnosis and treatment



Good luck  


Alli wrote at 2010-07-27 06:58:55
Dear Dr. Edwards,

Chronic appendicitis is not common, but it does exist.  For the past 2.5 months I have had moderate abdominal pain; all of my diagnostic tests (labs, U/S, CT) came back normal.  At a loss for an explanation, I was referred to a gastroenterologist who performed a colonoscopy. He consulted with a surgeon based on the appearance of my appendix.  They both agreed that I have chronic appendicitis.  



I had a full hysterectomy over three years ago; my symptoms aren't gynecological.  



I was stunned at the diagnosis as well.  I had a very firm concept of what appendicitis presented as and I did not know that it could be chronic.  



If you're interested, I can email you my colonoscopy exam images which clearly show the inflammation and pus on my appendix.  



That was a little over a week ago.  



I'm not sure what the treatment plan is yet; we're waiting for the pathology reports.  



By the way: as a doctor you should know that only about 60% of patients with acute appendicitis present with classical symptoms.  Just because you haven't encountered this uncommon diagnosis does not mean it doesn't exist.  



A picture is worth a thousand words.....


OSU wrote at 2010-12-12 02:28:05
Interesting indeed. My 18 year old son had surgery today to remove his appendix. He has had bouts of severe pain in his right side for 6 YEARS! There were several times when I brought him to the ER only to have appendicitis ruled out since he didn't fit the "perfect picture". He always got better. Sometimes it wouldn't be too severe so would take him to the family doctor who couldn't find anything.



Through the years they have checked him for so many things including meckel's diverticulum. Test after test after test. There were other times when he would have bouts of vomiting and diarrhea, feeling generally run down.  He has been away at college for his first semester and has been at the University Health Clinic 4 times!



All last night he was ill, the pain getting worse and finally this morning he could barely walk so brought him to the ER yet again! His white count was a little high and his CT was questionable but due to his past history they weren't entirely sure it was appendicitis.  I asked the surgeon if there was such a thing as chronic appendicitis and he said no, never proven! We opted for him to go in with scope and he would take the appendix out regardless and also look around to see if the meckles was there.  Turns out his appendix was quite inflamed and he had fluid in his pelvic area.  I am so thankful that they took it out rather than going thru more tests!



After reading these comments, I am confident that after 6 LONG YEARS we have finally found the problem and he will feel much better!


Olivia wrote at 2011-04-05 16:14:06
I do not know why some doctors are insistent that it is impossible for chronic appendicitis to exist.  There can be many causes of appendicitis, and all appendicitis actually means is "inflammation of the appendix."  It does not mean that there are pus pockets, although these are common manifestations of acute appendicitis.  There are several diseases where inflammation flares up recurrently in different parts of the body and in different organs, I don't know why it "seems impossible" to some that the appendix may also have this feature.  Lastly,  a person's immune system and the health of a person's immune system will determine if the body will fight off appendicitis before it becomes acute.  Again, in every other type of infection,  the immune system is capable of fighting it off on its own.  The reason doctors do not want to admit that this is possible, is that if our immune system has fought it off already and there are no symptoms, the patient will not go to the doctor to get it checked out, therefore there isn't any data.  To state that something doesn't exist just because it has not been proven is ignorant thinking.  That's like saying the world was actually flat before it was proven that it was round.  IF you look throughout medical history, there are plenty of stories of doctors and scientists who didn't believe something because they did not have the proof- hundreds of years later to be proven wrong by advancing technology.  Why in this century there is still this flawed thinking pattern is beyond me.  Lastly, I would like to add that there are lymph nodes in the appendix that can lead to inflammation of the appendix.  It is not uncommon for lymph nodes to swell up when the body gets invaded by viruses or microorganisms.  Some people have lymph nodes swell in their armpits and groins, and some people only get it in their throat.  Why wouldn't some people get it in their appendix?  The lymphatic system plays a huge role in the immune system.  There obviously has not been enough research done on this matter.  


PinkButterfly1 wrote at 2011-10-09 16:45:00
I'm now recuperating at home from an emergency appendectomy. For about 6-7 years I have had stomach spasms among other digestive symptoms which seven months ago culminated into my stomach "seizing" up on me. I would vomit for days on end, loss of appetite, 40 pounds loss, early sense of fullness. After colonoscopy and other diagnostic test with a scope and a stomach emptying test, Idiopathic (basically unknown cause) Gastroparesis was the diagnosis.



Only after my stomach seizing up yet again and wasting days because the GI group would not allow me to see another doctor in the group (thought I would feel more comfortable with a female GI. After finally saying enough, a NP at my regular doctors office "saw" me. After being in a world of spasmodic pain for five days, I listened as she suggested acupuncture, anti-depressants. Told her "no thanks". Not once did she ask me to hop on the table to palpitate my abdomen.



After two more days in pain, I went to the ER and a really bright resident(?) did extensive abdominal palpitations. By then the pain had shifted to the right, downward. A cat scan confirmed that (for no telling how long)I had acute appendicitis. I never had a "temperature" or other classic signs.



Yesterday for the first time in six months, I ate chicken and ate spinach which was so delicious.



Six days post-op, no stomach spasms, nausea or other signs of gastroparesis. This has re-affirmed you must know your body and if after seeing a medical professional, something still does not seem right, do not cave in. Go somewhere else!  



Self-advocate for your needs in healthcare to save your life!  


gary1223 wrote at 2012-03-02 05:31:41
I have been having the same problem as most of you severe pain in my lower right abdomen and have been diagnosed with acute appendicitis by a doctor and surgeon but have been told it isn't bad enough to have it removed ( they wouldn't be saying that if they were in my shoes) I have had this for 6 months now  


shannon wrote at 2012-03-14 16:37:32
Get a new doctor....I had two bouts with what I thought was an ovarian cyst (severe right pain, nausea, vomiting fever, my white blood count was up and down). First time in ER they sent me home and diagnosed me with an ovarian cyst after CAT scan. Second time I was admitted to the hospital because my GYN insisted that the ovarian cyst could not cause me that much trouble. I had a CAT scan with dye and a pelvic ultrasound and was sent home from the hospital because the surgeon on call told me radiology could not see my appendix so it must not be inflamed. Basically, he did not know what was wrong with me.

I was already scheduled to have a hysterectomy so the surgeon that saw me in the hospital agreed to do laproscopy during my hysterectomy. They ended up removing my appendix and the surgeon said that appendix was "weird and nasty". It was diagnosed by pathology as chronic appendicitis. The surgeon said he had never seen an appendix look like mine and he had never believed in a chronic diagnosis.

I cannot believe doctors do not believe in this when so many people seem to suffer from it.


wopsle wrote at 2012-05-28 07:07:55
Thank God I found this site! It strengthened my belief that I am having a chronic appendicitis! I've been experiencing pain in my lower right quadrant of my abdomen for more than 1 year. The pain is not severe. It occurs very often but only lasts 1-5 seconds. That is why everyone whom I told about this don't believe that I have a chronic appendicitis. It may not sound so serious but it is still WRONG! I don't have any other sickness like UTI or kidney stones because I drink plenty of fluids and the color of my urine is always light yellow and sometimes white. I would definitely get my appendix removed no matter what the doctor would say about it! Even if he/she states that there's really nothing wrong about my appendix!


Msw wrote at 2012-06-16 16:15:13
Chronic appendicitis is real and confirmed by two surgeons I visited.



Three months ago I had excrutiating abdominal pain for about 6 hours followed by a week+ of moderate pain. I thought it was food born illness. It also came along with pretty severe constipation. A couple of weeks later the moderate stomach pain and constipation came back... and then again a few weeks later. I finally got to a doctor and a CT scan located an enlarged appendix. Went to two surgeons and they both confirmed the scan as chronic appendicitis. The one point where we differ, is that they don't think the generalized abdominal pain had anything to do with the appendicitis.... I do even though the pain never localized in the lower right quadrant of my abdomen.



Anyways, I'm 4 days out of surgery now. My appendix was enflamed, hardened(necrosis?), and fused to my intestine. I'm feeling ok all thing considered but have been constipated and bloated since surgery. I'm hoping that clears up really soon.


messagegirl wrote at 2012-07-22 02:07:31
I cannot even tell you how long I suffered though multiple misdiagnosis from my award winning doctor. I had several Colonosopies, Endoscipies, and random tests to be diagnoised with food allergies. This was for years. I was a test tube and I was a really healthy 25 year old female at the time. Fit, healthy and with a low BMI. I was given oxycotin for the pain and even deadly night shade to slow down my digestive track.

They ran tests day and night for several years.



Why? Because my symptoms were not typical. The intense pain, vomiting and I would even deficate what looked like black oil did not match the acute traits so it was overlooked. Let me tell you the pain was bad enough that I didn't think I could continue to bear it. The "attacks" would be 1-2x a year then started monthly.



My doctors PA was really concerned and frankly I was tired of running to his office and looking like I was crazy. Finally during a lower GI test that I scheduled when I was feeling normal required me to have compression on various parts of my body. One part "hurt" which was around the appendix. The tech said that shouldn't happen. I believe it was several days later I had another "attack" pain that was unbearable that 1,000 mg of oxycotin couldn't mask it. This was happening monthly.

My doctors PA ordered a cat scan.

The scan was nearly impossible to do since we couldn't get a vein due to all of my vomiting so we did it without contrast.

The tech ran out saying my appendix was inflamed, but not ruptured.



I opted to have it removed.  There were zero promises that this was the cause of all my pain and suffering. They gave me fair warning but said if I was comfortable they would remove it. Guess what since then I've never had another episode. EVER.



Question your doctor if something is chronically wrong and let them know that you are a human being and you don't want to be suffering. My doctors certainty and ego didn't let him see the possibility that he could be wrong. These things happen.



In hind site they missed a lot like:

- pain in the stomach so intense like I was shot

- having to sleep sitting up

- a white blood cell count close to 20,000

- vomiting and a bloated hard gut with a feeling like you had to go to the bathroom but no matter what you can't



I could have had a massive lawsuit on my hands, but no one is perfect and I am just really happy that almost 10 years later my gut never bothers me. This condition does exist and doctors are not perfect. I have a massive file at my doctors office that proves it. I hope all of you that visit this page find this helpful or find out what the real issue is.  


M Keller wrote at 2012-09-11 20:23:36
I did not have the typical Appendicitis.  I had something called a CHRONIC Appendicitis.  I’ve had this condition for 25 YEARS !!!! (but didn’t know until now).



The first time I went to the hospital (25 years ago) they sent me home because I was not in enough pain.  I generally get a flare up about 1x a year for the last 25 years (more or less).  This most recent time, after visiting my primary care Dr, he sent me to the ER (my pain started the night before around 10 pm and got worse by the hour for about 8 hours then started to subside around 5 am) – it should be noted that the only reason I went to the Dr. is because my wife told me I was an idiot if I didn’t go.  .  



When I finally got to the ER, they said I was not in enough pain.  I told them I wasn’t leaving until they definitively told me whether it WAS or WAS NOT.   They tried to dissuade me from getting any x-rays or cat scans.  I informed them at 45 I was in the best shape I would ever be in (now that I am on the other side of the hill) and I would not leave until they gave me a final diagnosis.  I already had at least 10-12 hours invested in this pain, so I sat in the ER from about 12 noon, till about 3 PM before they started to give me Barium so they could give me a Cat scan.  I got the scan around 6 and was on the Operating table by 8 PM.



My pain was not as acute as most appendicitis’s  because, it turns out my appendix was tucked in under my large intestine thus masking the pain from direct pressure.



The Surgeon told me a few things:



1) as recently as 10 years ago, no one believed that an appendicitis could be a chronic condition

2) Because my symptoms are never bad once I get to the hospital (because the first time I was told I wasn’t in enough pain – so I felt like I had to “man up” – I would suffer through the pain).  

3) The surgeon, in a very veiled way, told me that I was very lucky that I persisted in the Emergency Room for 7 hours before they took me for the Cat (?) scan.  He was basically saying that my appendix was in the process of bursting.  He apologized (again in a very veiled way) for the ER staff making me wait when my appendix needed to come out.

4) I was in the operating room at 8 pm – 11 pm back to my room, and by 7 am the next day, walking around.  Back to work the day after.

5) Best $35K dollars I ever spent…(out of pocket was $700).



Lastly – they did NOT do the appendix laproscopically.  When I questioned the surgeon about this at the check up, again, in a veiled way, he said – if I would have gone in laproscopically, I would have ended up cutting you up the other way as well because we had to clean out the area from the scar tissue and other poisons (i.e. the appendix was in the process of breaking).



I think I was very, very, lucky.    I remember one time I was on a business trip in Venezuela when I had one of these flare-ups….  I was so scared that night.  I did not want to go to a surgeon in Venezuela.  


motivatedcat wrote at 2013-02-11 02:35:40
Chronic appendicitis does  exist there are documented cases.  I went to the ER the and  was fortunate to get  a young bright intern, very through .  Later on  the head older  doctor  came and spoke with my husband and I. He said, statistically (I wish I would of wrote down the exact numbers) The ER see so many people that walk in with low right quadrant pain, nausea etc... the CAT scan will  show an inflamed appendix and surgery is order, While the  other group of people are turned away because the CAT scan shows no appendix inflammation YET so that group ... a large percentage will return a few months later and they have an inflamed appendix and the appendix will be removed. Of course  a group will not return because it was another issue , they have gone to another hospital or they moved.  So the  doctor in big city ER know it and thay  have seen it. In fact we were told to return if I have symptoms again because  I might be one of the those people that returns and it is time for the appendix to come out. The part here that makes me super frustrasted is the  amount of suffering . What happen to early detection ...wouldn't that  eliminate undue suffering. pain, time energy and cost to the patient. Plus wouldn't it save the hospitals  billions of dollars. So why not ask the 15 year old kid that created  the early detection pancreas cancer machine to make one for early detection for appendicitis. This issue with my appendix has caused  suffering, pain and the total obliteration of my life, I stopped working, driving and became a housewife. What  I have gone through in the last 15 months is beyond ones wildest imaginations.  


C.C. wrote at 2013-06-05 04:03:51
Although the term "chronic" may be in question, I assure you, long term appendicitis exists.  



On December 13th, 2012, my daughter, a state level 9 yr old swimmer, started of suffer from RLQ pain.  By Monday the 17th, she went from just pain to the only time during this entire situation where she ran a fever of 102, CRP was 33, white cell was normal at 9,000 (only dropped from here) & SED was 26.  We were sent for an ultra sound which revealed mesenteric addentis, but a normal appendix.  From there, we went to CT which revealed an enflamed cecum and terminal iliem.  By Tuesday, her fever dropped to 99.5-99.8 where it hovered off and on until late April, 2013.  Her CRP rate slowly dropped over the next few wks back to normal of 3 by 2nd wk of January, and SED rate shot up to 56 but then also returned to normal by the end of January.



We were sent to a GI doc at the local children's hospital due to the concern that this was Crohn's.  (apparently, Crohn's likes the terminal ileum.)  A colonoscopy on Jan 21 revealed ulcers and hemmhoraging in her terminal ileum.  Endoscopy was normal.  They started her on a low dose steroid, again thinking Crohn's.  it didn't help.



At the Feb 7th appt, she was taken off the low dose of steroid and moved to amitriptyline to help her sleep.  An ultra sound was ordered which showed she still had messentaric addenitis,  She sobbed off and on through the entire procedure due to the pressure hurting so much from a simple ultrasound.



Her pain suddenly increased at her March appt.  At that appt a second CT was ordered and capsule endoscopy.  The results were surprising.  The CT showed that the lymph nodes (mesenteric addenitis) involved from December had doubled in size and now more were involved, but the cecum and terminal ileum, although still enflamed looked improved.  The capsule endoscopy revealed ulcers still present but the hemmhoraging had healed.  At this point surgical and oncology were brought in.



At the end March, we did visit the ER once, but not before checking with both surgical and GI and getting their ok to go.  We were told constipation and sent home.  As it turned out, constipation was one of her symptoms.  Her pain did drop back slightly over the day or two, only to increase again in early April.



At the surgical consult in early April, it was determined it would be an exploratory surgery, but they would at a minimum remove the appendix since it was in the middle of this, and possibly do lymph biopsies depending on what they found.



On April 25, 2013, exactly 19 wks after onset, my daughter had her appendix removed, which appeared normal.  Everything else appeared normal and no biopsies were done.  Once coherent. she said the pain was gone.  She mentioned she could tell where her appendix had been, which interestingly enough wasn't exactly where her pain resided.  



Before her surgery, my daughter trained 6 hrs plus a wk in the pool.  (She pushes me by the way, I'm not one of those moms.)  By late February, she wouldn't even play Wii games that required movement.  It simply hurt too much.  Before we left the hospital, less than 24 hrs after her surgery, she challenged a nurses aid to a foot race.  I knew it was a good sign.



It was with great relief that we received the pathology at our follow up appointment and learned that she had 'acute' appendicitis.  I called our pediatrician immediately to fill her in.  (She had been checking in along the way and was wonderful.)  Even my father, a family practice physician who will be 60 this year and saw the pictures of her surgery was stunned at the path results.



So, my dear Dr. Edwards, I assure you, it is not always an acute onset.  Should you ever want to read my daughter's medical file to confirm every SINGLE word I have written down to the date is true, please feel free to contact me.  I will happily send her medical records your way for review.


Ellen Copeman wrote at 2013-06-18 15:02:33
I want to shout from the rooftops for all longterm suffers to hear. CHRONIC APPENDICITIS DOES EXIST! I had bouts of intense, totally debilitating abdomal, pain 3 to 4 times a year from the age of 15 until 35 when I had my appendix removed.  My gastoenterolist has just told me now that my condition is known as smoldering appendicitis.  All those out there who deny the existence of longterm appendicitis are doing an immense dis-service to those who suffer undiagnosed.  This condition goes undiagnosed because it does not present as text book appendicitis.  



My symptons were non localized abdominal pain, a distended belly, vomiting, inability to keep either food or fluid down. I called the episodes "my cramps".  I was completely unable to function when I was having an episode, rocking back and forth for 12 to 36 hours unable to find any position that was comfortable.  I was told at first that it might be menstrual, that I needed to relax, that I should avoid salad, that I had IBS.  I managed to stay sane with the help of coedine and a heating pad that I kept under my bed at all times.



Finally in the last year that I suffered I had three attacks that were severe enough and that presented closely enough to the traditional appendicitis symptons that I was delivered from years of pain.  The first of these three events was an "episode" that left me with a residual pain in my lower right quandrant that made lifting my leg painful.  I went to my doctor who suspected appendicitis and ordered a sonogram.  Unfortunately the sonogram came back negative.  The technician told me that sometimes a sonogram does not show as well on someone with little abdominal fat, which was the case with me.  three to four months later I had an episode that presented as classic appendicits; localized pain, fever, elevated white blood cell count.  Unfortunately while I was in the hospital waiting for the surgeon, my symptoms subsided and my white blood cell count went back to normal.  The surgeon then declined to operate saying that "this could not be appendicitis because appendix' don't heal."  I begged the surgeon to operate, telling him that I was sure that my appendix needed to come out and that I would only be back to the emergency room.  



This proved true just 3 months later, when I finally had an open and infected appendix removed.  That was the last episode that I ever suffered; now 13 years ago.



Chronic appendicits, recurring appendicitis, slumbering appendicitis does exist!!  I write this with the hope that someone else who is suffering might do a google search and find this answer!


essb wrote at 2013-09-07 09:39:42
For two years, my daughter has had right sided lower quadrant abdominal pain. I have taken her back to the hospital time and time again. Once they gave my 17 yr old a mass of narcotics at once and a prescription for more for at home. I was horrified. At my next visit, the doctor told me not to bring her back to the hospital for this complaint. I went to two different hospitals - no answers. It affected her schooling, she just couldn't concentrate because of the pain.

The hospitals had also sent us to gyn/ob - one told my daughter to eat a healthier diet, another told her it was back pain. One doctor even decided it was a psychological problems.



A week ago, she again complained of pain. I left it go three days, thinking a doctor's report would be just the same as before.Finally seeing her in so much pain, took her to gp. He ordered yet another ultrasound. Nothing to report. The pain increased. That night I took her to er. they didn't believe her again. I insisted on further examination. They did bloods - no infection - no urine problems. Because of her obvious pain, they decided to operate. The pathology? Surprise surprise - appendicitis. grrr My daughter had to go through two years of misery because of obstinate small minded ill trained doctors. Not good enough guys


Sara wrote at 2015-06-03 04:01:32
I'm having the same problems I'm getting very annoyed that no one is helping me.its been over a year since my gallbladder was taken out I had bad gallbladder for over two years unitll my surgeon took it out once I changed doctors. I'm wondering if my apendex is doing the same thing not showing abnormal in all the test I've had. No Ct Scan or boold work coming back with any problems. Ugh I'm in so much pain ! I'm in Minnesota if anyone can help me.  


Betsy wrote at 2015-06-10 22:30:21
So sad that all of our journeys have included lack of medical understanding of a chronic appendix.



I suffered for too many years to count, including a constant dull pain and flair ups that were in my abdomen and back. A few times some doctors looked at me as if I was a hypochondriac or crazy.



Three months ago it was the worst ever. I couldn't sit at first due to back pain, then it moved to the abdomen. I saw my OB to check my overies, got diagnosed with kidney stones when CT scan showed a calsification in my abdomen above the kidney. Had lithotripsy to break up stone...then second CT scan showed same calsification and had a surgery to remove stone and place stint in from bladder to kidney.....finding NO stone.



Turns out the calsification was a appendicolith....a stone in the appendix.



The pain continued and got worse. Saw the urologist as the pain would not stop and left me with bouts that left me in a ball and crying. He sent me to the ER where the doctor said "it is impossible that it could be your appendix as you would have a fever and would be throwing up. What you have is chronic pain and here are some pain meds. The ER is not the place to deal with Chronic Pain" he was so condescending that the women in the next bed came over and said she could not believe he spoke to me that way...



Two days later still suffering with the meds I went to a surgeon with the 3 CT scan, MRI, ultra sound and multiple blood and urine test that should everything was normal except the stone in the appendix. I was crying and could only be slightly comfortable speak while laying down. He said I am going to do a laparoscopic procedure to view your abdomen, but have seen a few people with this same issue and finding that they get relief only when their appendix is removed. 48 hours later, he removed the appendix and FINALLY the pain is gone.



Being your own health care advocate is the only way to get better with this type of issue. Having someone with you at the Drs also helps so they can validatebis very helpful.



Am thankful this is finally over...with a simple solution of removing an organ we don't need!!!  


mjtraum wrote at 2015-07-18 19:05:49
I have suffered from chronic appendicitis for over a year with symptoms similar to many of the stories here. I have been told by multiple doctors that I have Chronic Functional Abdominal Pain Syndrome (CFAPS), which cannot be explained or cured. My white blood cell count is normal, and my appendix appears normal on CT scans. However, my appendix is in a retrocecal orientation, and multiple scholarly papers I've read indicate that this orientation makes the appendix nearly impossible to visualize via CT scan.



I am searching for a surgeon who believes in chronic appendicitis and is willing to perform an appendectomy on patients who don't present classic symptoms of acute appendicitis.



It would help if people who have had successful surgeries could post the names of their doctors so others suffering from chronic abdominal pain can contact these physicians to seek help.


Bridge wrote at 2016-02-09 19:15:23
Dr. Edwards,

I too had no idea chronic appendicitis existed until yesterday. I have had lower right quadrant pain, nausea and a rutured outside abscess on my abdomen for over a month. I had three ct scans. Two showing normal appearing appendix, one nut identified and one saying I had mesenteric adenitis and the other fun stuff that comes with..after over a month the symptoms got worse not better, my GP referred me to a surgeon. He told me that I had chronic appendicitis. In the U.S. it isn't talked about not diagnosed often, but since the gallbladder can be chronic, then why not the appendix? inflammation occurs in both organs. I have Rsd/CRPS so I'm no stranger to chronic nor pain. I did not have a fever, elevated WBC our any clinical tests other than the classical med school symptoms. Because the CT scans were normal I was sent home from the ER, one ER doc said my liver looked a little funky, and made no mention of the mesenteric..I had to go into my patient portal tests on the internet provided my the hospital and take the results myself to my GP. He was shocked neither ER doc consulted with him first. After living on saltines, ginger ale and water for a month I am going to have my appendix removed and hopefully there is no damage from the infection in my intestines that was treated late. It's important to be your own advocate, find someone who listens and helps. Studies in the U.S. back up chronic appendicitis and in England they not only acknowledge it, they threat it as an existing disease. The U.S. still calls it everything to IBS to a cyst. I don't have a gallbladder nor my uterus, ovaries as stage IV endometriosis destroyed them.I was told by ER doc endometriosis is cured after hysterectomy. The surgeon said tell that to the woman I had to do surgery on for endometriosis adhesions last week, she too has hysterectomy ten years ago. Every patient is different, not every doctor is always right. People need to listen to their own bodies.  


Bridge wrote at 2016-02-09 19:15:30
Dr. Edwards,

I too had no idea chronic appendicitis existed until yesterday. I have had lower right quadrant pain, nausea and a rutured outside abscess on my abdomen for over a month. I had three ct scans. Two showing normal appearing appendix, one nut identified and one saying I had mesenteric adenitis and the other fun stuff that comes with..after over a month the symptoms got worse not better, my GP referred me to a surgeon. He told me that I had chronic appendicitis. In the U.S. it isn't talked about not diagnosed often, but since the gallbladder can be chronic, then why not the appendix? inflammation occurs in both organs. I have Rsd/CRPS so I'm no stranger to chronic nor pain. I did not have a fever, elevated WBC our any clinical tests other than the classical med school symptoms. Because the CT scans were normal I was sent home from the ER, one ER doc said my liver looked a little funky, and made no mention of the mesenteric..I had to go into my patient portal tests on the internet provided my the hospital and take the results myself to my GP. He was shocked neither ER doc consulted with him first. After living on saltines, ginger ale and water for a month I am going to have my appendix removed and hopefully there is no damage from the infection in my intestines that was treated late. It's important to be your own advocate, find someone who listens and helps. Studies in the U.S. back up chronic appendicitis and in England they not only acknowledge it, they threat it as an existing disease. The U.S. still calls it everything to IBS to a cyst. I don't have a gallbladder nor my uterus, ovaries as stage IV endometriosis destroyed them.I was told by ER doc endometriosis is cured after hysterectomy. The surgeon said tell that to the woman I had to do surgery on for endometriosis adhesions last week, she too has hysterectomy ten years ago. Every patient is different, not every doctor is always right. People need to listen to their own bodies.  


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Curtis J. Edwards, MD, FACS

Expertise

Can answer general and vascular surgery questions, trauma, burns, some plastic surgery questions, general gastrointestinal surgery and gastrointestinal medical questions and questions regarding aviation medicine.

Experience

Board certified general surgeon. Seventeen years practice experience in general, vascular, and no-cardiac thoracic surgery and endoscopy.

Organizations
College of Surgeons, AMA, Aerospace Medical Assoc., Civil Aviation Medical Assoc.

Education/Credentials
BA, MD, American Board of Surgery, Fellow American College of Surgeons, seventeen years practice all phases, including teaching.

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