Is chronic appendicitis real? Please help me to be assertive.

[DecidedlyUndecided]

I have posted about this before but I'm currently preparing for a conversation with a doctor from the Colorectal team and I really want them to take me seriously. I am hoping to get some advice and (hopefully) reassurance that I'm not crazy.

I have been dealing with pain in my lower right abdomen for over 7 months now. Along with bloating, hard stomach and a host of other issues that match the symptoms of chronic appendicitis. The pain is a mixture of dull ache, sharp, stabbing and it is constant but gets much worse at times, I haven't discovered any patterns or triggers.

I've had a CT scan which did not find the cause of my pain and my bloods haven't indicated inflammation when they've been tested. However, I experience rebound tenderness, pain in the right when pushed down in the left abdomen and pain with specific leg movements - which are the classic tests for appendicitis. The pain, symptoms and response to these tests have always been discounted because of the CT scan and bloods being okay.

Every Doctor I have spoken to has suggested chronic appendicitis is not real, but there are many accounts of it online. I also know someone who had the same symptoms for two months, with nothing found on his CT, and it turned out to be his appendix. He was offered a diagnostic laparoscopy reasonably quickly.

Recently, I had a colonoscopy and a small patch of inflammation was found on the opening of the appendix, which makes me wonder if it really could be my appendix after all. Colorectal will call me again at some point to discuss the findings of the colonoscopy and biopsies and I really want them to agree to do a diagnostic laparoscopy at this point. However, any discussion about this before has been quickly shut down. I've only ever spoken to them on the phone and I really get the feeling that they think it is IBS or in my head.

I absolutely know there is something seriously wrong going on in my body - the pain is impacting every aspect of my life and I can no longer cope. I have tried elimination diets and FODMAP and the pain does not respond to dietary changes, it also does not respond to physio. Ovarian cyst/reproductive issues have been ruled out with an ultrasound scan.

I was hoping to know if anyone has any experience with chronic appendicitis and also to understand how to get them to take me seriously? I can sometimes get emotional because I am struggling with this so much - I want to go into the next conversation strong and assertive. I would really like them to agree to a diagnostic laparoscopy and I don't know what to do if they say no. I am also concerned that even if they say yes, it could be a long waiting list. I am really hoping the colonoscopy finding will help me but I'm preparing for the worst. Any tips would be much appreciated.

I am open to the idea that it could be something else but feel a diagnostic laparoscopy is a sensible next step at this point.

Not chronic appendicitis but I recently had surgery for a burst appendix. I had been having symptoms since last year and was told it was gallstones, I wasn’t convinced as the pain didn’t match (much further down) and talking to people I know who have suffered from gallstones I knew it wasn’t the same.
i had a few attacks affecting me for around a week each time however the last one I just continued to decline and pain increased ending up with surgery for a burst appendix, I was very lucky as it was ulcerated and had caused a hole in my large bowel.

i know it probably doesn’t help but please push for answers, don’t let them find you off!
Good luck 🍀

I'm so sorry you went through this @HattieMacTattie, are you feeling better now? Thank you - I appreciate your message.

Yes...
Over 30 years I had:
Three hospital admissions totalling 6 nights in hospital (the third they got rid of the damn thing as it had finally burst).
Several visits to my GP.
A few flare ups where I didn't bother to go to the GP.

I haven't had any symptoms since it was removed (8 years?).

DS1 had pain in his appendix area for about 9 months. It came and went but was always in the same area, also had leg pain and occasional vomiting. We were told time after time that it wasn’t appendicitis.

In the last episode he had a minor fever and some fairly minor abdominal pain. Saw a GP who (bless him forever) took one look and sent us straight to A&E. On admission we were still told time and again that it was not appendicitis. Finally he was taken into surgery after his fever spiked and inflammation markers went off the scale- he had a “very nasty” ruptured appendix and was in surgery for 3 hours getting it all cleaned up. Made a full recovery thankfully.

Anyway that GP saved his life for sure. Nobody else took it very seriously. Appendicitis can be very hard to spot. I don’t know if that’s any use OP but hope you can get some answers soon.

That very familiar, right down to the 3hrs of surgery.

The ‘if not that then what else’ and ‘what can we do to improve quality of life and be sure that have eliminated other potential causes’.

Lines can both be helpful.

Appendicitis is an infection. It infection and inflammation markers are clear then it’s unlikely to be what a clinician would seem to be appendicitis. Doesn’t necessarily mean that it’s not a problem related to or in the vicinity of your appendix - but it could be that without being appendicitis.

I would be mindful of approaching it with the position of ‘I think it’s chronic appendicitis and because of that I think I need a laparoscopy’. The risk there is that your lay persons terminology sounds clearly wrong to the specialist and your underlying points and concerns get missed because you use a term with a specific definition wrongly.

I would focus on:

1. clearly and succinctly describing your symptoms, using your words and descriptions not medical ones unless you’re very familiar with their use,
2. describing the history, and what’s been tried. What did, how long for. (Particularly the diet related aspects).
3. Impact on quality of life. Ability to work, sleep etc.
4. Desire for a forward plan that gives a path to finding definitive cause, and / or resolving or significantly reducing the symptoms.

They sound like scary experiences for you all, so glad all turned out okay in the end.

Thank you @ScaryM0nster - this is really helpful advice. I think I can get stuck on thinking it is my appendix and the GP I spoke to recently shut down as soon as I mentioned this - so I will definitely work on my wording.

If it helps, there’s potential causes that would be in the area of your appendix, or even at your appendix but aren’t what most would define as appendicitis.

(eg. Not all sore throats are a bacterial throat infection. Doesn’t mean they’re not sore, doesn’t mean that things can’t be done to improve the situation, but they don’t all fall under that definition).

Good luck!

That definitely does help @ScaryM0nster - thank you. Perhaps with the inflammation seen on the opening of the appendix they will be more willing to have a look in there 🤞.

I once had to visit the out of hours doctor as the pain in my appendix area was so bad. They were non-committal and said it might be appendicitis or it might not, that I ‘could’ go to hospital or I could wait it out at home.

A couple of months later the same thing happened - I went to the GP who said he didn’t think grumbling appendix was a thing and it was either fine or it burst. He gave me some very strong antibiotics as that is apparently a treatment option in Scandinavia. They seemed to work and that was that.

A few weeks later I was in the same GP’s room vomiting into the sink as he wrote me an admission letter to hospital. I don’t know if that changed his opinion on grumbling appendix but it did mine.

In hospital they didn’t think it was appendix despite all the typical signs, because my infection markers were too low. After 3 days of just blood tests (I though an ultrasound might help) they said they’d operate and if it was obviously the appendix they’d remove it, if it was obviously something else like an ovary they’d deal with that, if there was nothing obvious they’d take the appendix out just in case.

My keyhole surgery quickly became an open one as my appendix was on the verge of bursting. I’m fine now apart from the odd tiny twinge that I think is from scar tissue. I don’t know what my message is from all the above, but I hope you get a quick resolution.

Thanks for your reply @Letsnotargue - I'm glad they sorted you out and that you are okay.

I am in so much pain today and feeling really nauseous and dizzy, the pain seems to have spread under my ribs too. The issue I have is I know the doctors won't take me seriously and I will likely be sent home from A&E if my bloods are okay - I actually don't know what to do anymore. This is no life.

May I ask how old you are? I have direct experience of a relative 70+ who had appendicitis as you describe. Was repeatedly treated with antibiotics while on waiting list for eventual removal. The reason I ask your age is because part of their reluctance to operate was due to the fact they wanted to rule out any cancers causing the appendiceal mass, as appendix quite rare in this age group. Yet they also did not hurry to investigate said possible cancer. To cut a long story short, we had private colonoscopy, endoscopy and eventual appendix removal. Is any private diagnostics and optician for you? If you can PM me, I'm happy to recommend an excellent surgeon in London who was very pragmatic and helpful.

Hi @MalteserGeezee thank you for taking the time to reply. I'm glad all was sorted in the end - the waiting is so difficult.

I am in my 30s and unfortunately going private isn't an option. I really wish it was.

My 9yo had a recurring stomach ache for about 6 months (with hideous skunk farts) before it all came to a head in September, when we ended up in A&E at 5am and it was removed that evening. His blood markers indicated appendicitis at that point.

So yes, IMO appendixes absolutely can grumble on.

Thank the lord the skunk farts have gone.

My 19 year old DD had horrendous localised pain that saw us in A&E a couple of weeks ago.
Her bloods showed infection and she was nauseous and sick. Still in horrendous pain her ultrasound something dodgy with her biliary system (?) but not her gallbladder (I had mine removed at her age so history).

She had a CT but her appendix looked fine so her doctor said there was, basically, nothing that could be done surgically. Due to other symptoms and investigations they said it's probably pain from endometriosis but that can't be seen properly on imaging.

A few years ago she had similar pain which was diagnosed as mesenteric adenitis (mimics appendicitis) and treated with antibiotics.

She's now at a loss what to do as she's waiting for an urgent gynae referral and was sent home with lots of strong painkillers.

Hope you get some answers @DecidedlyUndecided

Thank you @CrackingOn50 - I hope your DD gets answers too. Does she suffer with other symptoms of Endometriosis too? Hope her appointment comes through asap - it is miserable living with undiagnosed pain.

Hi, this sounds like me! Last year I got admitted to hospital because the pain was so bad. My blood tests were normal and the CT showed only minor inflammation around the appendix so they tried to fob me off. Luckily the surgeon on duty diagnosed me with appendix spasm. It's not the same as classical appendicitis which is from infection of the appendix. He said a lot of doctors don't understand this. Anyway, my appendix was removed and I've been fine since then! Try asking about this OP x

I'm so glad you were taken seriously @NKffffffffb5e64c4dX11c950aaec3 and it was sorted in the end.

That's really interesting - it is reassuring to know that appendix issues aren't as black and white as I've been told they are by doctors. Do you think there is anything in particular that you said to get them to take you seriously and offer surgery? Or do you think it was just the luck of having a surgeon who understood the situation? I am just wondering what I can do.

I think I was very lucky that particular surgeon knew about this, and I think a lot of doctors don't know about it. He straight away said I needed it removed, so I didn't need to convince them, fortunately. I think the medical term is appendiceal colic - perhaps do some research on this and show to your doctor?

Thank you for this - that is really helpful. So glad it was sorted quickly! Perhaps if I end up in A&E again the inflammation on the colonoscopy might be enough for them to want to investigate - paired with the worsening symptoms. This evening it feels almost like labour contractions (except more sharp) they are becoming more frequent.

My DH was in a hospital for 3 months whilst doctor ordered more and more tests. A Jnr doctor was sure it was appendix but was overruled as it wasn’t ’classic” symptoms. Eventually they opened him up as it was Xmas and they wanted him out to see his appendix glowing and adhered to his bowel (hence symptoms not being classic) when it was removed he was perfectly fine.

I was furious, what a waste of 3 months bed, tests, stress all for a bloody appendicitis.

Your poor DH! What justification did they have for keeping him there for that long? Glad he is all sorted now but that must have been a very difficult time for you both.

I haven't read everyone's responses, but I have had chronic appendicitis. I had 4 or 5 bouts over 3 years and no one could tell me what was wrong. My GP was very supportive and made it her mission to find out why I was having these episodes of severe abdo pain. I finally saw a consultant who referred me for a MRI scan. But then came covid so I couldn't go, and finally I did have the scan, luckily just after I'd had a flare up. It showed inflammation. I then had to have a full colonoscopy to confirm it was my appendix causing the pains. And yes, it was. The registrar suggested I wait until it burst to remove it, while I quite strongly argued against an emergency situation and preferred to have it nicely planned. The consultant agreed thankfully. Had it removed and never had any more trouble (apart from the post-op infection).

I'm not sure what advice I'd give. My GP was so good and genuinely wanted to solve the problem. Without her I'd probably still be having it, and it was genuinely debilitating.

Thanks for your reply @Comedyusername - so glad all was okay in the end. Can I ask did you have pain outside of the flare ups? My pain tends to be constant with a few occasions where it gets worse. This is the bit that makes me doubt myself as a lot of accounts I have read about chronic appendicitis describe flare ups and then times where the pain goes away. My pain never goes away. I am at a loss about what to do next, I worry so much about wasting people's time but there is definitely something wrong and I have no life currently as it impacts everything. I think the negative CT scan makes me doubt myself a lot too.

I had it for years. I even had ovarian cysts removed because they thought the pain must be that. I woke up from that surgery with the pain still there. When they took my cysts out the surgeon said he had his hand up to his elbow in my abdominal cavity and there was no sign of my appendix so it couldn't possibly be my appendix.

A year later a surgeon decided to take it out because nothing else had worked.

It turns out I had an enormous appendix (the longest ever seen at that point, it was a medical record!) And it was retrocaecal, wrapped around loads of other organs and stuck to them.

I woke up from that surgery and no longer had the pain and havent since! That was 30 years ago.

Its totally a thing. But very few of rhe doctors or surgeons I saw believed it was a thing.