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Chronic Appendicitis


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#61 MickeyK

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Posted 09 April 2014 - 02:35 PM

Hi. I was doing research and came across this forum. I have been suffering for the past 6 months with abdominal pain, pelvic pain, аnd have lost over 20 pounds. I was bounced from Dr to Dr over a four month period and all 5 had a different opinion. Had pelvic exams, endometrial biopsy, 4 vaginal ultrasounds and two abdominal ultrasounds and finally I switched my care to a different HMO. My new doctor is fabulous and listened to me. Last week I had SEVERE overall body pain, fever, chills, constipation, and SEVERE bladder pain. My doctor ordered tests for UTI and started me on an antibiotic. My bladder started feeling better the next day and my fever went away. My labs showed elevated WBC's and ESR but no bladder infection. NONE. My Dr decided to order CT scan (I still have overall joint pain, fatigue, and stomach pain). My WBC's are back to normal but ESR still high. Had my CT scan yesterday and Dr called me and sent me to surgeon in the afternoon. Surgeon told me my Appendix is inflamed and in an awkward position. He sent me today for another CT with contrast ( last was without) because he wants to make sure there is nothing else going on before he goes in. He's the one who brought up "chronic appendicitis". I'd never heard of it and never once suspected it could be my appendix. He's supposed to call me later today with a plan but he's definitely Going to remove it. He said the antibiotic I was put on probably kept the infection at bay, but once it wears off it may come back with a vengeance. I posted this to let everyone know that not all cases of appendicitis present the same and to keep pushing until you find a doctor who listens. When I went for CT scan today I heard nothing but praises for the surgeon and I'm so grateful I have him on my case. Although I'm not looking forward to any kind of surgery I will let you know how it goes. Do not let anyone convince you it's in your head!!
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#62 Allen Robins

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Posted 11 May 2014 - 09:02 AM

To say I'm in pain is an understatement. I have pain in the lower right quadrant of my abdomen I it has been there for 31 days. To describe it follow me if you will, take your tummy on the right side and place your hand on your belt line and lift, now place a red brick under your tummy then let your tummy down upon it, now lean forward. The pressure that your feeling is what I have been living with for all this time. I have spent 16 days in and out of the hospital.
They have done 3 ct scans two of which had dyes, 1 xray, the vampires have taken a ton of blood, 1 colon scope, 1 stool sample, 10 urine samples and last but not least one 4 day period of fasting.
They all keep coming back and saying nothing is wrong or it is nerve problems. They have given me for pain meds endone, oxicoton, morphine, panadol, nurafin, and one shot in the leg that was to end the pain. None worked!
It was a Tuesday night I had a bowel movement and it seemed a little strange when I viewed it is was the color of sand. I thought strange but did not worry. Next morning I needed a second one, oh lord that was hell, a plug has developed over night pushing that out was not fun, it was normal in color at the start but the end of it was the color of sand. Wednesday noon I started feeling off the pain in my list right abdomen had begun, Thursday I saw a gp and explained the issues above, he pokes around and says take 2 panadol if the pain leaves then you have a hurenia if not apedix. I went home and took two 1000mg, just as I swallowed it sank in wrong type, I waited two hours and took two panadol 1000mg. Pain got worse and I went to the A&E. I started off by telling then how I felt. They gave me codine which did nothing. They have me a ct scan and an xray. They told me nothing was wrong. Yet on Friday night things got backed up and I could not uerinate. They put in a cathiture (spelling in pain of very bad) and sent me home pain was an 8\10 this whole time. Saturday came and went no movement. Sunday came and went no movement. Monday came and by noon no movement, I called our community nurse she stopped by told me the amount of actilax I was told to use was wrong I was to use 30ml and drink 1 1\2 litters of water, thank God for he. By 9 PM movement, and no pain, I did a jig. 14 hours later pain came back slow at first 4\10 same place. By the end of Tuesday it was back to 8\10. Wednesday I removed the tube, and urinated fine. Then I started to get sharp pains so I went back to A&E. 1 more CT scan blood tests, stool sample, Urine test by Thursday I was backup again. Begged for help and got it several hours later 3am Friday. 5am hell began craps like I have never had dropped me to the floor. 5:30 am movement they took it to check for norovirus. Like I told them that is not the problem. Test came back clear. The I got admitted, poking and prodding blood tests urine tests and more poking. On Monday afternoon I was told I was getting a colon scope done on Tuesday, fasting began. Tuesday ended no scope until Thursday, kept fasting. Thursday colon scope done was still cloudy, four dang days no food just water. But no problems from what they saw. Then I had lunch and was then told no more foods lap scope to be done on Friday. A their ct scan done with dyes, nothing found. Scope done nothing found, though was told that appendix looked good from distance so they did not go in for closer view. I was sent home in more pain then I arrived. I was home for one week and saw a nerve doctor who traced the pain on the nerve which followed down in my growing with one inch apart I was given a 5%sugar solution in a shoot which was about 12 in total. I was fixed... For four days then pain came back like it never left 8\10. The next Tuesday I went back he did it again it lasted until Thursday, 2 days. I tried to drink milk on this day and thought oh dear god kill me now. Friday I stated getting sharp pains running on my belt line and in to my growing 9/10 I could take no more called the ambo and they came poked me found was in pain still. Took me to A&E again. Was poked and given 5ml morphine. Pain was still there but I did not care. They sent me home still in pain after being told by a surgeon that I did not need to be there as there was nothing wrong and it looks like it might be never pain as what was done by my gp removed the pain..mind you the last time it did not last as long as the first time. I was given a pain med that works on nerves called lyrics 75mg and I was to take it one a day. This meds have not worked at all. Though sharp pains did not come back until Sunday at 11 am OUCH! Many tears!
I have not opened my bowels without help since this began. My pain for the most part has been at 8/10 with relieve during the days I was fasting. If my bowels are full I am not a very happy fellow. There is no pain reliefe and I can not sit for more then 20 minutes without being in pain that goes to a 9\10. Does this issue match chronic appendicitis? It has been going on for 31days.

#63 shrug_dealer

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Posted 16 September 2014 - 03:03 PM

I'm really interested to learn more about this condition. All I've been able to gather so far is that it is exceedingly rare (a study that came out of the US stated that it had an incidence of just over 1%). Some clinicians/medics don't even (or won't even) entertain that it exists! 

 

I'd imagine that labs would have to be abnormal (WBC, ESR, CRP), especially in the cases where the chronically inflammed appendix was causing significant, severe pain/symptoms. Although having said that, perhaps a sub-clinical level of inflammation that is only able to illicit mild, dull and vague sensations of pain would be able to evade the people at the path lab... 



#64 LittleLakeGirl

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Posted 24 October 2014 - 05:03 AM

This is really interesting. In my early 20s I suffered almost constantly with lower right abdo pain. The Doc sent me for an ultrasound, nothing to worry about but the pain is still there on & off. In fact when I saw the GI the other day and he felt around my stomach & abdomen my pain was on that lower right side again and it comes & goes intermittently to the point where I've just learned to live with it.

#65 DagnyT

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Posted 11 March 2015 - 07:18 AM

I am living proof that chronic appendicitis exists and can go on for years, causing a myriad of symptoms that doctors should recognize but don't because diagnosing illnesses is no longer the primary (or even secondary, don't get me started) concern or aim of most doctors anymore.

I have had chronic nausea for years with no explanation. I've also had severe chronic abdominal bloating and distention to the point of looking literally 7-8 months pregnant, even when my stomach was entirely empty. No pants fit my waist - at 114 pounds I couldn't zip a size 8 waist band.

I felt sick all the time and was (am) always exhausted. Diagnosed with fibro and CBS, idiopathic hypersomnia and a dozen other labels. Not all these came from the appendicitis. I'm sure but it didn't help any. When I complained about the nausea and boating to my OBGYN she said just. "welcome to life over 50." Another male doctor's diagnosis was to accuse me of having become an alcoholic! (I don't drink).

After about two years I developed right sided pain at my waist. It hurt badly but usually only lasted a week or two then went away for a while before returning. Gradually over the next year the pain spread down to in front of my right hip one. There was a wavy line of pain, a crampy, pinching pain. Then it spread across to my navel. My abdomen became more and more grotesquely swollen. I finally learned that wheat or dairy would make it even worse. So there are other factors too.

I lived with this for well over a year, seeing several doctors about it and even went to the ER once, whenever the pain became unbearable. I was always told the problem was that I was constipated! Even in the ER, constipation was the only diagnosis - and that was after a CT scan of abdomen and pelvis.

I was told I had IBS-C. and given Linzess which only made things worse. I was given Miramar and a lecture about "eating right." I was told - Get Ready - that my "symptoms weren't really symptoms, now were they?" And "that what I was was depressed" ; that a psychiatrist was who I SHOULD be seeing. My elevated white cell count was brushed off as "just some general inflammation."

Finally two weeks ago I got so sick one afternoon that I didn't know where I was. My husband put me in the car and took me to a different ER. I lay there for three hours before being scanned. Another 4 hours later I was informed I was being admitted to the hospital. I asked why. And; 'You have appendicitis! Hasn't anyone told you? "

I spent the next 13 hours waiting in agony for surgery. The surgeon finally strolled in about 2 pm the next day.

That was two weeks ago. My surgery was very complicated because the appendix was so infected and huge. My white count was over 23,000. I am still in severe pain but the nausea is GONE. The surgeon tried telling me that my earlier symptoms weren't necessarily related to the acute appendicitis and I cut him off in the middle of his sentence. And the reason I am hurting so badly right now is because the federal government is so terrified that someone might enjoy taking an opiate drug that doctors won't prescribe pain meds for fear of losing their licenses.

So four doctors missed classic signs of chronic appendicitis because they assumed I was a horse and not a zebra. They assume we are ALL horses. And they don't even look for zebras. That takes time. And God forbid, THOUGHT.

SO demand to be heard. Don't let some condescending old man leave you in misery for months or years because he's actually thinking about whether he will make his Tee time that day.

I'm cynical I know but this story isn't
nearly the worst thing that's happened to me in a similar vein. Stand up and MAKE yourself heard. Medicine as it is practiced in this country today is way overdue for an uprising and an angry revolt from the populace.


Thanks for listening

Dagny

#66 AmyPi3

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Posted 16 July 2015 - 06:31 PM

Hi

Can anyone in this thread who has had their appendix taken out for chronic appendicitis please recommend a doctor in NC? I have had symptoms for maybe ten years now (I'm about 35) and thought it must be a hernia since I had one when I was an infant and have two more now. I couldn't think of what else it could possibly be, I just knew it hurt terribly.

I finally went to my primary care dr who poked at me and literally said "I don't know what it is" and was about to leave the room. I told him to send me to a surgeon because I was not accepting that response to my suffering. I was also pregnant and was terrified that whatever it was would rupture during labor.

The surgeon verified that I had two hernias but needed a scan for the lower pain and said I had to wait till after I had the baby. I went back to the dr again about 2 years later (I lost insurance for awhile and then said screw it, I'll pay totally out of pocket-the pain was making it hard to function and knocking me to the ground when it would hit). I told him about my symptoms and he ordered a CT scan. I received a letter a few weeks later that said little more than "You need to poop". Are you kidding me? At this point I still had never even heard of chronic appendicitis. I didn't even know where my appendix was! You could have knocked me over with a feather when I Googled a pic of the human body that pointed out the appendix. All the times I had pointed to that exact spot and told them of the excruciating pain NOT ONE dr ever even mentioned it could be my appendix. I was sitting there crying my eyes out and feeling hopeless.

Here, by the way, are the symptoms I've been dealing with for years-some I didn't even realize were related and just thought I was generally an unwell person:

Intense pain that comes and goes in my appendix. Sometimes so severe I cannot walk or will fall down.
Feeling like I am battling the flu for weeks at a time but the "flu" never fully hits.
Wondering if I had fibromyalgia because my body hurt so badly
Tenderness if the area above the appendix is touched, much worse if pushed on.
Pain in my appendix when using the bathroom and I even mean just #1 with absolutely no straining
Nausea so often I again chalked it up to what I thought was just me being unwell for some reason. Also prevents me from eating at times.
Constipation and loose stool. The former, I believe, sometimes related to my not drinking enough water.

Basically that is it. I wasted a lot of money on a scan and drs visits that told me nothing other than verifying I had hernias (with no mention at all of doing anything about it) and to go to the bathroom. Pardon me. doc, but I haven't needed to "poop" for ten years.

I have insurance again and am making the most of it. I would like to see a dr that knows where the appendix is and doesn't try their best to make sure I am forced to keep it in me and ruin my life. I want someone who knows what chronic appendicitis is and can help me. It really is ruining my life. I have small children who need me to be well for them.
 



#67 KC Chester

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Posted 27 July 2015 - 08:03 AM

We are currently battling this in our household.

Our daughter is 8 years old. She has had issues for nearly 8 months now. As time goes on, she is getting worse.

She had blood tests and an xray that  came back normal.

She was then sent off for an ultrasound. On the day, the sonographer and a doctor were both in the room. When they got to her appendix, they excused themselves to speak with a specialist. When the returned, the sonographer said "Ok, we are all done here. If she gets any more pain she needs to go straight to Emergency."

"She's in pain every single day so I won't be going to Emergency unless there is a valid reason." I replied.

"She has what is known as 'grumbly appendicitis', there is poo in her appendix and her appendix is on the larger side of normal" she stated.

So, naturally, I came home and Googled it. I found that 'grumbly appendicitis' seems to be also called 'chronic appendicitis' and 'periappendicitis'.

The next day, we got a phonecall from the school to say our daughter was in a bad way. We rushed her straight to emergency. I was basically told that chronic appendicitis didn't exist and to give her some Panadol. I told them what we were told the previous day but, alas, the ultrasound report made no mention of it. >.<

That was about two months ago. Since then, my daughter has become worse. She has pain every moment of every day but the severity differs. When the pain is extreme, she loses all the colour in her face and becomes extremely nauseated. She can't vomit no matter how much she wants to nor how hard she tries.

A week later we presented at Emergency again. Same doctor. By this point, we had tried everything we could think of. Nurofen, Nurofen Plus, Painstop Night, DeGas, Buscopan, Mintec, Metamucil, Inner Health, Dr Caruso's Tummy Health, wheat packs and more. This time I was asked if morphine would make me happy. No, it wouldn't. We left again with our child in agony.

A week later, our daughter looked like death. She was crying "Mummy, please help me!" She was cramped over and could barely move. We took her to the Children's Hospital this time.

"No such thing as Chronic Appendicitis... Give her some Panadol and go home". Great.

Our daughter's pain is often in a big circle around her belly button. It's a strong pain. She also gets stabbing pains on her right hand side. She says it feels like someone is stabbing her. Those stabbing pains will often shoot off to her other side, up her chest, and her heart (her words). She has also described sensations as "someone chewing on her appendix", "Someone put a hot mint in her belly", "someone poured a bucket of water down her throat" and has described it to her Nan as 'Hell'.

Last week her back started to ache.

I believe her belly is swollen. It's getting bigger as her appetite fades.

 

At a loss, I went back to our GP and asked for a referral for a CT Scan.

The CT Scan report came back stating that my daughter had at least three appendicoliths in her right iliac fossa within the lumen. It also stated that there was multiple prominent-appearing mesenteric lymph nodes (largest being 10mm) that were suggestive of mesenteric lymphadenitis.

 

Right-o. Google time again. From what I can figure, the lymph nodes are swollen due to her appendix. The appendicoliths in her appendix are bits of poo that have or can calcify, cause infection or rupture the appendix. Appendicoliths are also called appendix stones, fecoliths, coproliths and stercoliths.

 

Try mention appendicoliths to a nurse or doctor and watch the look on their face. It is a look of not knowing what I am talking about and ponderance if I am crazy or not.

 

I'm not usually a Google Mum. I don't like to self diagnose. In this case, I had no other options really. The following Google quotes I have found memorable...

 

"Gangrene is inevitable."

"Periappendicitis with abdo pain = 90% probability of acute appendicitis."

"Increased risk of abscess and perforation"

"Appendectomy should be viewed to limit recurrence of lymphadenitis".

 

I'm pretty sure we get sent away each time as my daughter has no fever. I would like to point out that not all infections come with a fever. Medical errors arise when physicians rule out infection due to no fever. Also, my daughter's normal temp is 36.1 degrees celcius. So, even when they do her temp at the hospital and it comes up as 37.9, in their eyes that is normal. However, for my daughter, that is high in my eyes. But that's another battle, I suppose.

 

Two days ago, we ended up in the original Emergency once again. Our daughter was so sick and was in so much pain that she couldn't lie still.

 

Guess what they said?

 

"Take some Panadol and go home".

 

I showed them the report from the CT Scan.

 

"Hmmm, there's nothing we can really do about that...."

 

"######! Enough is enough. This is not good enough!"

 

"What is it that you want?"

 

"I WANT HER APPENDIX TAKEN OUT!!"

 

"Ohhhh. You want it out? OK, I'll send off a referal for a surgeon then".

 

I swear, I could have gone clinically insane at that very moment. So now we are waiting to hear from a surgeon. Where that takes us, who knows!

 

8 months ago, I had a very happy little girl. A little girl who considered it punishement to stay indoors. A little girl who was full of life and energy. Today I have a little girl who has had enough. Who is sick and in pain every single day. A little girl who spends her time inside now, who has stopped playing, stopped smiling... A little girl whose sparkle has diminished from her eyes and whom begs me every day to help her.

 

Pain killers don't help. Her pain threshold is massive. Two examples. 1) When she was bitten by a dog the bite went right through her cheek. She cried for all of 5 seconds and then was COMFORTING AND ASSURING the dog. At the doctor surgery, when the doctor was pulling on the gaping wound to have a good look, she didn't even flinch. 2) When she fractured her arm, she said nothing. It wasn't until the next morning when I saw her supporting her arm that I questioned her. She still didn't admit that it hurt but an xray proved it was fractured.

 

It shouldn't be this hard. Chronic appendicitis should be recognised by the proffessionals. It has always existed. Appendicitis isn't black & white.

 

Anyway, I thought I'd share our story. Good luck to those of you who are suffering. Don't give up. Demand answers. Demand a remedy.

 

Hopefully, at some point in the very near future, this whole mess will be a distant memory for us and I can get my happy go lucky daughter back.

 

 



#68 KC Chester

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Posted 27 July 2015 - 08:05 AM

And sorry for  the essay ;)



#69 daak

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Posted 14 June 2017 - 07:42 AM

I don't have such a story but here is how mine underwent :

 

Few years ago i woke up one morning with a the feeling that someone just stabbed my insides and with a lot of gas, i freaked out.

My parents at the time told me to rest for a bit and if its not better see the doc, and that's what i did. By the end of the say i was with my regular doctor which quickly suspected an appendicitis he then sent me to the emergency room to have a CT scan. They told me my appendicitis was retrocecal and that it was inflamed and booked an appointment whith a surgeon.

And here comes my mistake.. So i met up with the surgeon who after reviewing the files offers me to get rid of it, which i then replied to with : Isn't there any other way ? ( i was having exams and couldn't afford not to ). he then told me that i can be cured with antibiotics and that's what we did. I was under Augmentin for quite a while and after it was done i went back to the surgeon who took some blood to see if the CRP was back to normal. Everything was fine and my life went back to its normal course...for now.

 

About 4 months later i would feel something, not nearly as bad as the first crisis but little doses of pain and it would almost never stop.

My bowels were normal and i didn't really feel bad or anything, just light pain.

As the months passed the pain grew more and more annoying ( its was a right side abdominal pain ) and i realized it was probably the appendicitis coming back. I tried to neutralize it again with natural antibiotics such as allicin but it did not work...After a while i knew i did not have much choice and went back to the doc.

 

The diagnosis this time was weird.

First thing my doc did was a blood test to see if the CRP was high...But it wasn't which made no $$$$$$ing sense. We got suspicious and decided to re-do the blood test when an episode of pain occurs. And guess what ? This time the CRP was high turns out chronic appendicitis is really sneaky and will only change your blood marker when you're in pain and that's all ( hence probably why a LOT of doctors are confused about it ).

He sent me back to the surgeon who was pretty open about it and since he saw me before was ok with the operation.

After he took it of he told me it was inflamed and told me that i was right ( which is pretty flattering coming from a surgeon ).

 

I developed IBS  3 years later so i don't believe that the two are linked, also when i remember the day of chronic appendicitis i can remember this pain being quite different than the pain i feel during an IBS flare up ( i'm not talking about how much it hurts but more like the type of pain ; those two are just different )

 

My 2 cents.

Tldr : Get your CRP done when you're in pain, not when you're sort of fine.



#70 cityboy67

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Posted 29 August 2018 - 05:27 PM

Chronic Appendicitis Does Exist.  Here is my story:  https://www.ibsgroup...l-syndrome-ibs/



#71 rutherfordmesk

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Posted 25 February 2021 - 01:31 PM

I also prevent from this. You can more learn from HealthDarling







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