does chronic appendicitis exist?

[Ms_Makita]

Here I go again looking for answers! at 16 was told I had IBS,wasnt too bad nothing I couldnt handle or tolerate..have some bad days constipated or the big D with cramps but didnt hit me like what im having now for last 7 months,usually had relief after bm, now its severe abdominal pain,belly button area, low left and right side pain,,sometimes radiates upper area and pelvic/rectal pain,stabbing pain,not crampy.Lost almost 60lbs,metal taste in mouth,heartburn,bloating,bad nausea,hair loss,appetite loss due to the pain (was on ensure but just now starting solid food..nothing agree's with me)bm's alternate,fever and night sweats,trapped gas (i havent been able to pass gas in months)alot of bowel noises and rumbling.After bm still continue to have urge to pass gas or stool but cant,Many trips to er,nothing can be found wrong,but this mimics appendicitis or  sometimes partial bowel obstruction,few times a month wake from sound sleep with "gassy diarrhea attacks" feel clammy/sweating/ feel like im gonna die.In April was in hospital for 3 days for this pain.Have had many procedures,tested for porphyria,celiac lactose intolerent,sprue,negative,mercury/toxin poison now.waiting on results.Many catscans,pap/pelvic exams,and ultrasounds,
Colonscopy-normal?,gi noted on biopsy some inflammation,said its ibs.
endoscopy-normal
hida scan-gallbadder is ok
laparscopy-no endometriosis
kidney ivp-no stones
I'm 28 and use to be active,I had to quit my job (cosmetologist) because most of time I cant even stand up,any ideas or similar experiences appreciated,ty (:

[bethmclynne23]

I've been having nearly the same problem as you have been having. I'm 19, female, been experiencing LRQ discomfort for a consistent 6 months. I had my gallbladder removed in 2014. I've had a colonoscopy- normal, laparoscopy-no endometriosis or ovarian cysts but pool of blood in the belly *not alarming, CT scans *from March- appendix appears unremarkable, fluid in cul de sac *unknown reason. I'm a dancer and I've had to sit out of a lot of classes do to the pain eventually making me feel nauseous. I wake up with cold sweats and sharp and stinging pain that makes me run to the bathroom, constant discomfort ranging around a 5 out of 10, hair loss, no noticeable weight changes, always leaving doctors offices with no answers. I've fainted a few times within the year and my boyfriend aunt (who is a former EMT) thinks my blood pressure "bottoms out". I've been wanting to ask my gastroenterologist about chronic appendicitis but it appeared she was only focused on seeing if it was colitis and when it was negative she was done seeing me. I think I need to find a new doctor.

[dawnee51]

Keep looking until you find a doctor who will listen to you.

[SmokyMtnLady]

It exists. After having Lower Right Abdominal pain for 8 months, I finally met a dr. who said it would be "worth it" to take my appendix out. (It appears normal on 3 ultrasounds and a CT scan). He referenced this study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3015983/ showing women of child-bearing age have high incidence of appendix problems. "Only 3% of the women had an initial diagnosis of appendicitis. Only 22.7% of the appendixes in 772 cases were normal; the rest had varying degrees of pathology. The most common pathology result was adhesions, followed by fibrosis." So technically chronic "appendicitis" (infection) may not be common but there are often other problems with the female appendix!!

[aiyanna23]

I feel exactly as you do. I have been having intermittent abdominal pain from belly button to RLQ for about 2- 2.5 years. Every doc or NP I have seen so far as looked at me like I am making these symptoms up. I suffer from horrible night sweats mainly located to my abdominal region and wake up with my tshirt drenched some mornings. I get clammy, hot then cold, sweaty and also deal with loose stools every other BM. I hate feeling like this. The providers say well your labs are normal and you don't have rebound tenderness. I bring up chronic appendicitis and no one takes me seriously. I am at the point of just stabbing myself to that region just so they have to go in their surgically. Ha! I won't because I don't want to deal with sepsis or leakage in my abdominal cavity. I am at the point of giving up.  I lose weight and then slowly gain some back but I can't keep living like this. What options do I have at this point? I admire the hell out of your resilience and I feel like I have been suffering with an ongoing infection for years too. My body is strong but my quality of life is beyond poor especially if I have to keep living like this. Thanks for your story it gives me hope:)

[Medicallyweird]

Yes it exists.  I had atypical chronic appendicitis for 3 years and had multiple diagnosis from several doctors, one of then even diagnosed me with drug over dose but couldn't figure out how I was covering it up (no I wasn't on drugs) usually I heard it was something to do with my bowels so they would give me pain meds a shot of muscle relaxer and send me on my way. Finally I got a Dr that refused to discharge me from the E.R. til he figured it out (after telling him about the multiple attacks and diagnosis) they ran several test including sonogram and ct scan. After finding nothing he consulted with the general surgeon and they took me to surgery,(this was after being in er for over 16 hours) where they put a visual scope inside me.I woke up and the Dr told me I was very lucky because he had never in his career seen an appendix as infected as mine was and they couldn't find it because it never swelled up.  So keep looking for that dr that will finally listen to you!

[caroline1228]

Hi. What ER did you go to and/or what was the doctors name? I am always discharged from the ER with 10/10 pain still, because they say it is not chronic appendicitis. Please, if anyone has any names of a doctor who listened to them I am desperate. I keep paying 50$ copays to go to new drs every week, but none listen. I can't afford my medical bills anymore. I will travel anywhere I just need this to be removed.

[aiyanna23]

I feel exactly as you do. I have been having intermittent abdominal pain from belly button to RLQ for about 2- 2.5 years. Every doc or NP I have seen so far as looked at me like I am making these symptoms up. I suffer from horrible night sweats mainly located to my abdominal region and wake up with my tshirt drenched some mornings. I get clammy, hot then cold, sweaty and also deal with loose stools every other BM. I hate feeling like this. The providers say well your labs are normal and you don't have rebound tenderness. I bring up chronic appendicitis and no one takes me seriously. I am at the point of just stabbing myself to that region just so they have to go in their surgically. Ha! I won't because I don't want to deal with sepsis or leakage in my abdominal cavity. I am at the point of giving up.  I lose weight and then slowly gain some back but I can't keep living like this. What options do I have at this point? I admire the hell out of your resilience and I feel like I have been suffering with an ongoing infection for years too. My body is strong but my quality of life is beyond poor especially if I have to keep living like this. Thanks for your story it gives me hope:)

[yr_kiara]

hi i think i have the same symptoms as yours, is it possible to tell me where i can find that doctor? thank you

[AmyPi3]

I have had pain for several years. I remember it getting really bad about 3 and a half years ago when I was pregnant. I had the pain before that but when I became pregnant I was so scared something was going to rupture during labor I went in to get it checked out.

My pain is exactly on McBurney's Point. The pain started getting so severe I would collapse when it hit me. I asked my primary care physician about it and he poked around and said he didn't know what it was and went to leave the room. I basically demanded he send me to a surgeon. The surgeon verified an umbilical hernia but said there was nothing to do while I was pregnant and get a CT scan after I had the baby.

I also had the OB-GYN do an ultrasound and he found nothing wrong.

After I had the baby, life got in the way and almost 2 years later I went back to another surgeon. He was useless. I sat there and pointed right to my appendix (having no idea it was even located there) and said "it feels like it's going to burst" and he just said there was nothing wrong and to get a CT scan if I wanted to (which I paid for out of pocket since I had no insurance at the time). He sent me a letter saying he saw the hernia but nothing that would cause the RLQ pain and told me to poop. Seriously. That was it. I wasted over $1000 out of pocket for nothing. He was terribly rude and one of those dr's that seems to hate his job. He also failed to tell me I had an ovarian cyst on my ovary in the exact spot I was having the pain (it was seen on the CT scan by my newest surgeon).

I now have insurance again and have been scrambling to get everything fixed that I can since I've already met my out of pocket max for the year (I had the accessory navicular bone in both feet and had surgery on one in Sept. and get the other done in Dec.).

The pain has gotten far worse and much more frequent. I have had sharp stabbing pain along with flu like symptoms, including waking up shaking uncontrollably, then sweating, etc. 4-5 times in the past 5 months. The pain has been at a dull ache with flare ups sometimes daily for an entire month now. It's never lasted this long.

Anyway, I have again had a (clear) pelvic ultrasound and scheduled an appt with a GI specialist for next week. I saw a surgeon a few weeks ago who wanted me to have the ultrasound (to check that cyst which is gone) before he moved on with a plan to laproscopically fix my hernias, check around, and TAKE OUT MY APPENDIX!!! I mean, he just calmly said "if the hernias bother you we'll fix them, look around, and take the appendix out". I was in shock that I might have a chance at a normal life again lol.

I go back to see him on the 30th and would like to have a colonoscopy beforehand since it might show something and I am still nervous he will change his mind about taking it out because it just seemed to easy. I almost feel lucky to have hernias since he has a valid reason to go in and insurance will cover it all.

Btw, my primary care dr told me there's no such thing as chronic appendicitis even though I never even mentioned it to him. I don't mention it to dr's because I know they think it's BS. BUT what is strange is that in his notes on my chart he put this "I feel the likelihood of chronic appendicitis is remote". You can't say something doesn't exist and then say the chance is "remote". If I don't believe in Santa Claus and I heard a noise at the door I couldn't say there was a remote chance it was Santa! lol

At any rate, I am somewhat hopeful I will have my hernias and appendix fixed before the end of the year. I am almost excited for them to look at it and test it and say yes, it was sick. I want proof to show those doctors who wouldn't help me so that maybe someone else will be helped and they won't be so quick to say it's a myth.

If he takes it out and all goes well I will be sure to share his name on here so that maybe someone else could benefit from his experience with me. I tried desperately to find a list of doctors who know that chronic appendicitis is real.

[dk5123]

I had a sharp pain after I sneezed that felt like something exploded right where my appendix is over two months ago. Have had IBS type symptoms for years but never a diagnosis on that. But I never had a pain like that. that night my belly felt full and warmand was achy all over. Next day it seemed somewhat better and then that night its was achy. On monday it seemed to be improving so I didnt go to a doctor. Dumb. By Thursday I was still having pains but it was mostly at night. I went to an urgent care and the lady refused toorder me and ultrasound and said she thought it was a pulled hip flexor muscle and constipation. and that if it did not go away in 2 weeks to see and internal medicine doc. Well it felt better about 2 days after I saw her. I did however seem more constipated at times than usual after that. Well now recently 2 1/2 mo later after that I started getting pain just to the right of my belly button and sometimes it would be on the left or cause a shooting pain up higher to the right. but mostly a dull ache on the right. I have been eating less and lmiting certain foods. but this is going on over a week now. Thinking it could be an inflammed appendix?? better that than crohns or something worse. but who wants to be cut open. I will be getting an image of my gut on tuesday and today is Friday. Hope it all goes well.

[Robert_Pimienta]

I'm 11 years old and every month I had abdominal pain since I was 9, the Doctors thought I had bad eating habits but my dad when he was little had a really bad abdominal pain just like me and one day he got a really bad pain so bad that he couldn't even stand up or raise his leg that day they took him to the hospital and he got surgery and it was from his appendix, like most people know there is two types of appendicitis one being acute that comes and stays and you have to get surgery and another one the rarest chronic appendicitis it comes and goes away,so my dad had the chronic appendicitis but like it is so rare the Doctors didn't even believe it existed but appendicitis surely can be very deadly if your doctor doesn't spot it right away it can lead to death because in chronic appendicitis there is a last pain that if not treated quickly you appendix can rupture and infect all your organs. So in my case I got the last pain 2 days a go it was so bad my parents had to carry me to the car my parents took me to the ER ( Emergency Room) When I got there my dad told the Doctors about  his chronic appendicitis when he was a teenager at last I got surgery and got my appendix removed yesterday and I really thank God for being at my side and not letting my appendix rupture. After my surgery the Doctors didn't believe it was chronic appendicitis but it really was.
If you don't believe chronic appendicitis exists and you have this symptoms,Abdominal pain every certain time period,vomiting,and can't move a lot please go to the doctor and tell them to check your appendix before it's to late.Good luck hopefully this helped

[lara_angel]

Angellmarie, I have just read your post on your experience with your appendix.
So good to read you stuck to knowing your body and got the surgeon to remove the appendix.

I had an infected appendix about 5 years ago, excruciating pain and was told I had  a stomach bug by 2 drs. By the 3rd wk I couldn't put up with the pain and sickness any longer finally a Dr who said it was appendix and went to a specialist who said i could either have it out or keep it either way I'll always have problems with my stomach so I chose to not have the surgery as I thought he knew what he was talking about.
I was told by drs I had IBS for all these yrs.
My stomach has now been playing up really badly for 3 wks, ultrasound and blood test showed clear for appendicitis so I was told it was constipation :-/

The pain has now changed to shooting pain in that one area where the appendix is so had a cat scan today and find out results tomorrow.

I did find one specialist recently who told me about chronic appendix which i hadnt heard of before only heard of the acute appendicitis and suggested cholonoscapy, I put it off as the other Dr said try laxatives which havnt helped so looks like I'll b getting the cholonoscapy.

Thanks for sharing your story I can relate to all the pains.

[shoot35]

Urge to have bowel movement but can't go. Nausea, sweating, pain, unable to pass gas. Have you had a CT of abdomen? Could be Meckel's diverticulum. Supposedly rare and even rarer that it causes problems, but this sounds just like what my husband went through.  Meckel's was found after several years of ER visits. Doctor said he had never seen one so inflamed/large (though maybe he had not seen many). It had bled, causing severe anemia (hemoglobin 5). He had issues for 15 years before it was discovered. I think CT is the only way to diagnose, but I may be wrong. Good luck.

[silhouett]

My son last July started getting a pain on his right side across from his belly button. he also had acid reflux sometimes to the point he would vomit.
This pain eventually became constant,
He had an endoscopy which said he had some irritation related to acid reflux. Hhe visited the ER  at least eight times.in a few months
they performed two cat scans with in three months and ultrasound of his liver area. The first cat scan said he might have Vasculitis but blood work looked normal. The second cat scan said he might have Crohn's. They then did a MRI next which said he did not have anything wrong except a slight fluid abnormality near his kidney.  He then had a colonoscopy which said every thing looked fine.  He still was in constant pain. They referred him to a surgeon and he elected to have his appendix removed. They did this and did find a band attaching his appendix to his intestines and figured this is what the problem must be.  They claim the looked around and everything else was normal and they removed his appendix.  Days after his pain came back, same pain same place... they referred him to pain management which he had two injections and they did nothing. He has been for acupuncture and nothing... he still is in constant pain and we have no answers. He still gets acid reflux, he also noticeably burps a lot.  

[Klook]

I am having severe pain my right side.  It's to the point that I cannot function.  I am taking pain meds.  The more I move around the more it hurts.  The factor that keeps showing up is a kidney stone which my urologist says can not be the cause of my pain because there is no blockage.  I have had a million tests including 2 ct scans, ivp , gallbladder scan, ultra sound, endoscopy.  All normal.  My urologist said he thinks chronic appendicitis, but the ct scan was normal.  I feel like a hypochondriac.  The urologist doesn't want to do anything.  I had lithotripsy in Jan 2013 which did not dissolve the stone.  Everyone thinks it's the stone except the urologist who thinks appendix.  But no test confirms.  What do I do next?

[Shaksa]

Hi my name is Sana(23)! Waw i am sorry that you had such pain. I have pain 1 year exactly where appendix is..and doctors one year say i am healthy and they did send me to cat scan but it did not show anything. they dont believe me that i have chronic appendix so i fly to Europe to make a surgery.

[Capetownguycool]

Good day, I really wondered if the weapon that you obtained from your pathologist in where it was confirmed that you had acute appendicitis - had silenced your surgeon?  That means 1% of his failure to accommodate you into being sympathetic became his worse nightmare.  99% of time he claimed to have studied and relied on evidences from your blood tests and other reports struck him too hard.  Doctors have ears, but only a small number of doctors will be more willing to accommodate without hesitations...

So how far have you been doing just after the laparoscopy and did you ever have any no pains in the long period time?  I really wonder....because I have similar experiences like yours but from different angles but with classic symptoms but rarely with no sign of fever....

[BBbetty]

Sometimes it is a female problem.  I had the opposite. I was in severe pain, 10 on a 10 scale, and they kept telling me it was my bowel and sending me for tests, including a scope. It wasn't my bowel. It was my uterus.  I suffered severe pain for 4 months before they finally figured out that it was Adenomyosis and damage from a uterine ablation I'd had a year earlier. I had to have a hysterectomy.

[Helpful_hope]

I am hoping that this helps you.  My daughter (11 yr) had chronic severe pain in the lower right side for three months.  The pain was intermittent, and not constant.  All of her tests were normal.  The pain appeared like appendicitus, but all tests came up normal.  She was missing school 2-3 days a week from the pain.  We finally were fortunate enough to get doctors who really researched to find answers.  She was diagnosed with appendicular colic.  The appendix is basically having spasms and there is no test that shows it.  It is not that common, but it does exist.  The appendix appears perfectly normal, but the pain can be severe.  Think back spasms only inside your body.  My daughter had an appendectomy and has been pain free for 2 months.  Do not give up.  Keep going to emergency room when pain is severe.  The doctors need to see the pain to help you.

[daveInL_pool]

i do have a question: did your symptoms start out mild and then eventually develop to more severe.....like the vomiting etc.

[daveInL_pool]

Ok.  I also am now more motivated to look into Chronic Appendicitis.  I don't have the severe symptoms most of you describe.  I have a dull ache in my right abdomen...feels like cramping.  It's not a female thing since I am a guy.  I get immediately worried about something worst like pancreatic cancer.  I've only had one test so far, an abdominal ultrasound and everything seemed ok.  I'm 50 so I', scheduling a routine colonoscopy.

[Linda319]

I'm going thru something simular with my 11 year old daughter.  How bad was your sons pain when this first started.  Right now it's next to my daughters belly button.  It hurts worse when she jumps or runs or when the area is pressed.  She's occasionally nauseous but no vomiting. The pain has slowly gotten a little worse as the week goes on.  All her blood work and ultrasound came back normal.  My gut is telling me this is related to her appendics but the childrens hospital said it wasn't and they have no idea what is wrong.  Thanks in advance.  

[Shanm]

My story is a little different as I have (luckily) not suffered from terrible pain until the last stage. I post here in case it helps others, and also it would be nice to hear of any similar cases.

I have lived as an invalid for over 20 years. Used to be very fit, danced all night.
After I had a child at 42 I got PID badly infected abdomen. Never really recovered.

I lived without pain but in extreme weakness, at worst able to walk only a few steps. I overcame this by sheer willpower, a strict diet, and careful exercise moving in bed if necessary. Until I could swim and walk and live a 75% normal life.
But never got better. Still weak, low stamina, poor immune system. In my 40s and 50s lived like 90. Motherhood blighted, but lucky to have devoted husband.
Tests showed nothing except 'a virus' in my blood.

I tried all kinds of things. Echinacea helped in large doses so I thought I just had damaged immune system. I did not know till much later immune system is about the gut.

I did have episodes of violent diarrhoaea. But not that often - once, maybe twice a year. Not enough to connect them. I thought it was just the weak immune system unable to fight off a bug.

Then - progress. I tried colonic irrigation (washing out my gut) with a nurse practitioner. Magic! As soon as it was done I felt 30 years younger, colours bright, food tasted wonderful, I felt sexual!!! I would crawl up the stairs to see her and bound down them like a happy kid!
But it wore off over several weeks and I'd go back again 8 -12 weeks later. Please note I was on very very healthy diet; the practitioner actually laughed at what came out of me it was so unusually good stuff!

All the time I was struggling with my weight. In spite of strict diet and exercise I was borderline obese. My abdomen and waist was very swollen as if pregnant, and very solid, firm to touch. Even when I did with great difficulty lose some weight my abdomen and waist was still swollen and hard.
Plus oedema - puffy hands, knuckles. ankles. I thought this and the belly was due to overweight. (But friend tells me now belly was wrong shape for obesity but she felt her opinion counted nothing against doctors)

I had several episodes of diarrhaeia in the last year.
Then 2 weeks ago blinding pain in abdomen. Into hospital, and appendix out.

Here's the thing - as soon as I woke up properly the next day, I felt the identical explosion of wellness, clear head, full on energy as I had had after every  colonic irrigation. Identical.
This has stayed and not reduced. I wake up fast and fully awake like I haven't felt for 20 years. Food tastes fantastic, I can even see and hear better.
My abdominal swelling is going down rapidly. Weight is reducing daily without effort and not yet able to exercise! Knuckles less puffy.

This HAS to be the appendix. I believe it has been slowly giving a small leak of yuk into my body for 20 years or more. But I even stories here and elsewhere do not mention any story this long.
Yet the evidence is clear. I was behaving as if slightly poisoned for 20 years. Colonic irrigation relieved it temporarily for a few weeks; then appendectomy stopped it completely.

[Caryopteris]

Take magnesium citrate in the morning and vitamin D 2000 IU in the morning.  

Every evening take calcium.  

Continue these as long as you live in Alaska, at least.  

You can also take Miralax, which is a powder you mix in water.  

If you drink milk, consider stopping it.  Can you get almond milk up there?  If not that, flax milk or rice milk?  Hemp milk?  No ice cream .. avoid all real dairy.

If this does not resolve your symptoms, get tested for Celiac disease.  

[KalebAK]

I am in desperate need of help with my pains. I'm on my 5th year of chronic pains, digestive issues, lack of energy, and nothing showing up on tests.
I live in Alaska where I get free medical but the doctors here have completely outcast me for any sort of help. I have no money for other types of medical insurance and I have no idea what to tell these people to get any real aid. They laugh at the paperwork I bring in explaining chronic appendicitis and want to send me to pain management therapy for IBS. I've been given anti-depressants to see if its stress related. They do nothing and I'm running out of hope.
My lifestyle has a lot to do with labor jobs to make ends meet, but I feel bed ridden six days out of the week. I have a daughter to be born just next month and I can't even function in society anymore.

Any advice or connections to help me get rid of my appendix would be greatly appreciated.

[DeterminedToSolve]

So glad to have found this forum. After 2 ER visits, I am so ready to be pain free. How do I find a surgeon in my area that believes in Chronic Appendicitis?