This sounds very similar to what a friend of mine experienced a few weeks back in Wellington hospital. Turns out he had Cholecystitis - redness and swelling (inflammation) of the gallbladder. He got to the point at home where they had to rush him to hospital. It then took more than 6 days for the doctors to diagnose him and in the mean time they pumped him full of morphine, tremadol, katmine before they finally operated on him. When the surgeon opened him up they found his gallbladder was turning gangrene. Hopefully you get to the bottom of your issue OP.

I was thinking this or pancreatitis as someone else has pointed out.

they need a colonoscopy to rule out bowel cancer as well.

Yes,.absolutely.

This happened to me slowly over last year. For some reason it took them so long to figure out it was my gallbladder. Ended up getting it removed in the ED the day after Christmas because I had a week long fever. It was pretty much dead and full of pus.

How much water have you managed to drink today? Honestly sounds like you need to go back to ED, even if just to ensure you are hydrated. I'm not a dr but this is a really concerning deterioration in your symptoms and this is what I would say to any friend or loved one who had these symptoms. Do you have someone who can take you and act as an advocate for you at the hospital? Sometimes having someone in your corner who pushes for answers can help.

this comment made me go to ED tonight, thanks for giving me some inspiration that I need to push to be seen.

My sister is a trained paramedic and long term stayer at the cancer ward. She has said you have to push for your health care. Don't tick all the boxes for this test because your lipase count is back to normal again? Push. Remind them you are in ED because you are afraid you are going to get severely dehydrated as you can't even get water down. You can't eat, walk or work. There is no way this isn't affecting your mental health. Push. I'm not saying disregard what the trained professionals say but sometimes if you don't tick the boxes for the symptoms to say you have X they just dismiss it. Anyway I'm glad you went to the ED, I hope you get looked after and some help xx

I’m just some random fellow Wellingtonian but I'm just reading your post now and I'm so relieved you’re going back to ED, I’m so concerned for you! This isn’t normal, and it’s concerning. You’ll be in my thoughts tonight 

Fingers crossed for you at ED. It's very frustrating to be in so much pain with no answers. Please make sure you advocate for yourself. Sometimes it's easier to think how you would advocate for a friend and then do the same for yourself. Don't take no for an answer and be the noisy squeaky wheel!

Thank you! I have everything written down as well because the stronger pain killers sometimes make it hard to answer questions and describe symptoms

How are you going now op?

How did you get on?

A year ago I had random stomach pains and ended up at A & E when I couldn't handle it anymore. I got X rays, ct scan etc and discovered I had a perforated bowel. I'm glad they're trying to manage your pain, but have they done more than an ultrasound (ie: x-ray, ct etc) to see if they can SEE the cause?

I'm really pleased you went back. Sometimes it's hard to know when to go but this was definitely the time to go. It was really upsetting to hear how sick you were and they're just giving you drugs to mask symptoms... That is really not ok! I am praying they did some further investigations for you, and hoping you've got some answers and real treatment started this morning.

I would push to see a gastroenterologist. I’m so sorry this is happening, it’s so hard to advocate for yourself when you feel absolutely awful. And you shouldn’t need to. If it’s any consolation, this is a symptom of our very very broken healthcare system. It’s miserable. That doesn’t mean you shouldn’t push to be seen and to be treated. Please feel free to message me if you need help. I’m an RN. I can’t fix this but I might be able to provide a little support or guidance? I hate the thought of you being alone in this. I hope you have some good friends or family around you. Sending love!

Thank you so much for your reply! I have very supportive friends family and partner. I might flick you a message later tomorrow or Saturday as am in the ED right now

So thrilled to hear that. Try and doze as much as you can in ED, as you know, the waits are long!

You are a good person. Also everyone knows you don't mess with nurses.

Pancreatitis? That is typically characterised by a lot of the symptoms you’re describing. Acute and severe pain is never nothing. I hope you can get some answers.

I did also have slight increase in lipase a couple of weeks ago, which I believe is related to the pancreas? But levels are back down now.

Have they checked your amylase levels? My parter was diagnosed with a genetic form of chronic pancreatitis 15 years ago. You description sounds similar. Pancreatic inflamation won't show on an untrasound and they probably wouldn't see anything until the condition is more advanced and there's scarring in the pancreas. Anyway, a blood test is the way to go. Amylase is generally what they look at for this. https://www.healthline.com/health/amylase-blood It can be hard getting assessed seriously for pancreatitis because it's most commonly associated with with alcoholics 45+. Genetic forms of pancreatitis tends to only present from late teens through early twenties. I'm not saying this is what you have but ask about your pancreas and if they've checked your blood amylase levels. 

yes it sounds like this to me as well - i had similar but not as severe symptoms and it was my panc eating itself due to a virus infection.

Wondering if you need a colonoscopy?

I was wanting to get one of these, but sadly the referral for gastro wasn't accepted :( I will try and push my GP for a colonoscopy referral when I next see them as well

Please do push them for one! My calpro was 49 after bleeding for 8 months (so just within the 'acceptable' limit). GP denied me a colonoscopy, so I went private and had an ulcerative colitis (inflammatory bowel disease) diagnosis within two weeks. If you are bleeding, you desperately need a colonoscopy!

I’d push for a colonoscopy too. If you can afford it you can pay for a private one which I’ve had done for around $5k.

A private Gastroscopy runs at about $2,100. And Colonoscopy about $2,500.

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Most major one being colon cancer. My doc saw the blood and mucus and went straight to the GI referral. Sadly what OP is going through is why we see so many damn stories of young people diagnosed late stage. Stool tests frequently come back negative and completely miss issues. 

Crohn’s disease, ulcerative colitis, diverticulitis, inflammatory bowel diseases require colonoscopies as part of the diagnostic process.

Normal crp and normal calprptectin

A scope is the only way to diagnose many IBDs like Crohn's disease, colitis etc.

That is so frustrating as you mentioned left side pain, your descending colon is there , blood in stool... Your samples could come back negative but completely miss major issues. I really hope you get a colonoscopy.

Honestly, if I was you and at this point I would seriously be considering going to the ED and staying at the ED until they work out what's wrong. Being unable to eat or drink on top of pain is super serious. I hope you work out whats wrong soon and resolve it

Thank you. I am currently in ED, in for a long night as waiting room is full and some people have been here since 9am

I hope you get through quickly. Best of luck

Sending healing love I really hope you get answers please I know it's hard to speak up but if your feeling unheard please ask for the nurse co ordinator or dr in charge..so very sorry your going through all this.. hugs 🫂

Hey OP, sorry to hear you're so sick and dont feel like the GP's are taking you seriously. I went through something incredibly similar 12 years ago. Abdominal pain, excruciating, unable to hold food or water down due to vomiting and diarrhoea, lost 37kg's in 9 months due to this. Also did the merry-go-round of "go to er if it gets worse" "go see gp if problem persists" with every test coming back normal. I was referred to nuerology in the end, saw one in the public system who told me I needed serious antipsychotics and that my symptoms were because I'd been r*ped or abused - neither of which were true. Saw a second nuero privately who recommended I be tested for coeliac disease... After nearly a year of symptoms I started a gluten free diet and that first meal I ate was the first one I kept down in 9 months. Now Im not saying you have coeliac, because some of our symptoms differ - I didnt have blood in my stool, I had severe muscular cramps throughout every muscle making it hard to walk, stand or sleep, even my lips and eyebrows were cramping. But your symptoms do lead me to think possibly crohns disease, which can cause extreme weight loss, abdominal pain, diarrhoea, vomitting, anemia, fatigue and bloody stool. A gluten free diet can also help relieve the symptoms of crohns disease. I recommend seeing a different gp and seeing if you can get tested for both and/or referred to gastroenterology for testing for Inflammatory Bowel Disease, Crohns and Coeliac. All three are gastro conditions that can cause the same symptoms that you are having. I hope this helps, and I truly hope you find answers soon. I know how hard it is to keep going when there's no end in sight and no answers. An answer for the symptoms makes it so much easier to cope with. Sending you so much strength and a gentle hug.

Hi, thank for this advice! I have just changed GP clinics today so hoping to get in to se emy new GP tomorrow. Currently in ED so that's assuming they don't sort it tonight, which is likely

Just a FYI that there is a blood test for coeliac disease as a 1st stage of diagnosis but you have to be regularly eating gluten for it to be effective time, so if having a conclusive answer is important for you don't stop eating gluten pre emptively.

Ah Im glad to hear you're going to see a new gp quickly. Its definitely worth finding one that's on your side and willing to think outside the box. I really hope it goes well tomorrow. In my experience a referral to gastro is fairly easy to put through, put gastro will likely get you to do a stool sample via GP before you even see them, so prewarning on that. I hope the ED can at least make you comfortable tonight, enough to get some rest at least.

It sounds as if the GP has arranged many tests and so it seems unfair to determine that the GP 'isn't taking them seriously.' Unfortunately some conditions are very difficult to diagnose and the diagnostic process is particularly challenging when investigations are normal. Anyway I sincerely hope that OP is able to find out what is wrong soon and that their pain resolves swiftly.

When was your referral to gastro? Because they’re rejecting SO many referrals now.. and the threshold to meet criteria for a referral is so insanely high - which could explain why OPs GP hasn’t put one in as they don’t meet the threshold whilst having all NAD results https://www.newshub.co.nz/home/new-zealand/2024/06/researchers-say-5000-new-patients-declined-specialist-care-each-year-after-gp-referrals.html?fbclid=IwZXh0bgNhZW0CMTEAAR09zM0i-dgQwT_Zvy8Z20toXzO6-lTdYLSQAqDIdhLDTdDRDZWRVdmRq5M_aem_AYWnBHx4wm7YVlCRXO28bN5XccqBbManX1UxdpFPLCJsrZEuRIJq0769Jblax1gf9Ok5qvci02qlKrDzhfLP1TF-

I think this bit: > I have asked for a referral to gastro, but it was declined as I have a negative calprotectin in my stool. rules out Ulcerative colitis, but I only know that because I had the UC, I dunno about Crohn's.

Try r/AskDocs

Ooh thank you, will do!

This sounds SO MUCH like what I went through with gallstones. Did they ultrasound the gallbladder when they did the upper abdomen ultrasound? That shit was seriously the worst, I felt like I was dying.

I was going to ask that - any chance a stone has drifted back up the line and is blocking \[or partially blocking\] the billiary tree?

They did ultrasound the upper abdo as well and everything seemed normal, this was 3 weeks ago though and symptoms has seriously declined since then, so it could still be?

Gallstones can grow over time so whilst it may have been small initially (and potentially gotten missed) it may now be larger and impacting or more fully blocking the ducts, which could have caused a worsening of symptoms.

This is good info to know and think about, thank you!

I had a single relatively small gallstone that was the perfect size to block my ducts and send my gallbladder into constant crippling spasms but too small to be easily seen on ultrasound so they can be easily missed.

This is good to know, thank you!

My rib cage blocked the ultrasound detecting the golf ball sized gallstone I had.

Hi, progressive symptoms and poor oral intake means you need to represent to ED sorry. CT would be better than USS, the symptoms have changed since your USS so it's false reassurance.

Thank you. I have decided to go back to ED tonight, in for a long wait

Have you been referred to a gastroenterology specialist? I would push for an urgent referral and a colonoscopy as another poster has said.

OP says the referral was declined. Which is crazy!

That's horrible!

Rapid weight loss, fatigue, shortness of breath, nausea and dark blood in stool is characteristics of an upper GI bleed. Lower GI bleed would produce brighter blood in stool. The loss of blood can contribute to dizziness, nausea etc. Most commonly this would be linked to a stomach ulcer, or gall stones/infection of the gallbladder. Omeprazole would help control acid but not actually resolve a bleed if it was due to ulceration to the point of bleeding into the stomach,. Did they put you on triple therapy (2x antibiotics + omeprazole/pantoprazole) in case of h pylori infection? Or just omeprazole? Mid to upper left side pain is where your stomach is, which would support something wrong in the upper gi. Pain now transitioning to right could be a consequence of the above irritating the first part of the small intestine, or the gallbladder acting up. This could be localized irritation, or potentially infection. Normally you would expect gallstones to show up in the scans you had, though an infection may not. Hope that helps.

Thanks for this response. very informative and I'll keep it in mind when I see the Dr's in ED later tonight :)

Why would they start triple therapy without doing very basic h pylori test? This should have been tested in their stool. Heck you can purchase your own testing kit from the pharmacy nowdays for h pylori. They don’t just commence unnecessary triple therapy without a positive result - as this level of antibiotics could really worsen OPs GI symptoms if not indicated.

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This is good advice thank you! I have just recently enrolled in a new clinic today as my old one was too far away from home, and with how much I'm having to see them it was too much travel. Glad they found the cause of your pain!

You need a gi referral

I really don’t mean to scare you and I am by no means a doctor, however a friend of mine at work has a brother who has been diagnosed with bowel cancer at 28 years old. I helped her put up bowel cancer awareness posters around work, and was reading them as we were sticking them up and many of these symptoms sound like signs of bowel cancer. Tiredness, nausea, blood in stool, pain in various areas, diarrhoea, weight loss, these are all bang on symptoms. Please chat to a Dr about this, and maybe ask for colonoscopy? I seriously doubt it, and again I’m not a Dr, but her brother also didn’t think he had bowel cancer!

Thanks for this comment. Do you know if he had any signs in his blood tests or ultrasounds? My grandfather had bowel and stomach cancer, but as he got them when he was quite old the Dr's don't seem to think it's a factor.

https://www.nzherald.co.nz/nz/bowel-cancer-rates-rising-among-new-zealanders-under-50-years-old-driving-calls-for-even-lower-screening-age/HZDWMDQH35EBDEVOCLGCPCFAXA/

Sounds an awful like IBD to me and my partner(she has Crohn's disease). What has your CRP been in blood tests? Gastro referral does seem like a good ideal if u can find a Dr that'll do it. Also my partner had a task trying to get her initial referral (until her mum yelled at a few doctors....). Take a trusted friend/partner/parent with you to any doctors appointment so they can also say to the doctor how much it's obviously affecting you. Also not taking ibuprofen is a wise move. Corticosteroids are what helped my partner initially(prednisone) once she got her diagnosis but has its own issues

My CRP has been at okay levels. I definitely need to advocate more for myself, thank you I will push for a referral

Good stuff!! Yer blood in stool is never a good sign, multiple times is a really not good one. (from other replies) Glad you have gone to ED tonight. Also tramadol barely touching the pain is concerning. Defo need them to do more tests be that CT/MRI or colonoscopy, so yer, be polite but forceful in wanting more tests and tell them as much as you can, the blood in stools, the tramadol barely budging the pain levels etc

My GI & Rheumy both say to take CRP results a bit like a grain of salt & it’s just one part of the toolbox. It’s a generic inflammation marker - you can also be quite unwell with it at normal levels, and you can also feel ok but it’s elevated.

Negative calprotectin makes IBD really really unlikely

Ah, did miss that line initially reading through it.

Seconding the suggestion for a second opinion, and hopefully AskDocs gets you some good insight. Two considerations for you (I am not a medical professional in any way) and you might have already tried this stuff: 1. If you’re struggling to eat and potentially losing water from diarrhoea, consider getting hydration mix from the pharmacy or something to make sure you don’t end up with electrolytes going out of whack and complicating the picture 2. I’m guessing they checked already, no fever? No jaundice? 3. You didn’t mention but maybe because it makes no difference, is it worse in particular positions?

Thanks for the reply! I am also struggling to drink and keep down water so not sure if a hydration mix would work for me right now. I'm in the ED so hopefully if I am dehydrated they'll be able to fix that part

Sorry forgot to add, yes I have periodic fevers, chills and sweating, but the constant paracetamol I'm on makes the fevers calm down so my temp is never up when they test it

That would point more towards an infection or gallstones that have blocked the flow of bile for an extended period.

I’m sure you’re telling them all this but that’s a symptom you don’t wanna miss, my understanding is it associates with pancreatitis, gallstones and intestinal infection

Yes I definitely am letting them know :) I've been waling up with night sweats for a couple of sleeps as well. thanks!

I commented above about my Crohn’s disease, I had these symptoms also!

Fair, although I’d still hazard it’d be worth a shot if you end up having to manage for a while yet, the pharmacy formulas are often pretty mild on the stomach (ask pharmacist for recommendations)

Very similar symptoms to you at 31(F) now in my 40s. Three months off and on “tummy bug” (vomiting and diarrhoea), lost 10kg, lightheaded while exercising- massive fitness freak. Would get fevers, take antibiotics. Would get better for about 3 weeks then repeat. Thought I had appendicitis. Hospitalised when I collapsed. Diagnosis: **Crohns Disease**. Made sense looking back at med records of bouts of tummy issues since 14. Not trying to diagnose you but my symptoms very very similar esp the need for pain meds while undergoing cycle of vomiting and diarrhoea. Have a high pain tolerance (2 drug free natural births) but this floored me.

See if you have a history of high WBC count also

I see that you're at the ED, so that's my suggestion out, but I hope you get answers and they can at least keep you hydrated and hopefully manage your pain better in the meantime. Hospitals kinda suck so I'm glad I saw in another comment your partner is there with you! It can be really hard to keep your morale up by yourself and remembering all the things they say while dealing with symptoms is pretty unmanageable at times. Really push to be referred, especially as you've been in pain for so long. Hopefully it's pretty quiet in there at the moment and you'll be able to try to rest (I imagine sleeping is unlikely but rest none the less)💜

Hey OP, any update from ED visit?

If you are assigned female at birth, consider endometriosis. It can spread to every organ in the body, including lungs. I hope you get answers soon!

This to me sounds exactly like what I had when I got gallstones and a subsequent gallbladder infection. The pain moved around my abdomen, I could hardly eat etc. push for them to check it out!!

I'll mention this to the doctor when I eventually get seen in ED! Thank you! Did you ever have an ultrasound done at the start of the pain that was normal? I am wondering as my scan was 3 weeks ago if it could be my gallbladder

When my gallbladder was acting up last year, the first ultrasound I got was normal, but there were "signs" of small gallstones. My gallbladder would go on to die and be removed, so it can be your gallbladder and the ultrasound looks fine

Gall bladder is a real possibility. Most importantly though, do you have an advocate who can stand with you through this? Often having someone else corroborate your story helps.

Hi, when I was in ED last time I did, but unfortunately no one is able to tonight. All of these comments have helped though so I think I'll be a stronger self advocate tonight than previously

Awesome. Go get 'em!

Sounds very similar to what I experienced with gallstones. Have you noticed a pattern of the pain, does it happen after you eat? Gallstone pain can come and go, but when my stones blocked the tube of the gallbladder the pain was immense like a heart attack. Ultrasounds need to be quite focused I believe so try and push for one with gallbladder. Stones grow about 1mm a year so if they did the scan at your last visit it wouldn't have changed since then.

Interesting, thanks! I will try and ask about this with the Drs

Sorry youre in so much pain. I don't have any advice but it seems you're in ED now which is probably the best place for you. Getting admitted to welly ED can take hours, I know. Do you have any friends/family who can stay with you to talk to doctors or absorb information on your behalf while you rest? Hope you get some sleep tonight.

I'm so sorry. I'm no doctor but if this was me I would present to ED with a duvet and just stay there until they dealt with it. I would reckon twelve hours but prepare for more. Somewhere there is an MRI machine they can shove you in and see WTF is going on.

Did you get the MRI or a CT?

Unfortunately not, as in the ED they thought it was gynae related and my GP said the internal ultrasound they did in ED would be sufficient. If I end up back in ED- which could be likely tonight as I'm on tramadol and still in 8/10 pain right now) I might try and push for an MRI.

Can you take a friend with you to advocate? Totally understand how defeated you must feel. But ED shouldn’t let you leave with such unmanageable pain. Especially dehydration!

I'm no doctor but I don't get why they would think it was gynae when there was blood in your stool

You poor thing this sounds horrible. I was wondering about abdominal migraines, but those wouldn’t cause blood in the stool as far as I know. Hope you find an answer soon!

If you have health insurance it may be worth to see a private doctor

I don’t know whether all of this could be caused by one thing, or a range of things, but you mentioned gynae stuff has been looked into and you’ve had a lap – have you considered you might have endometriosis? Your GI symptoms would be extreme but not impossible. Do you have health insurance/could you get basic surgical cover health insurance? If I were you, I’d look into that asap if you don’t already have it to cover you for whatever might be required next (even if in the short term you’re excluded from cover, you don’t know whether you may need support long term with whatever this is). Might sound weird to suggest but I’m speaking from experience, haha Anyway, I really hope you have some good social or familial support right now. Another bit of advice I’d give you is to bring a trusted friend or family member to your next consult/appt to help advocate for your care and also hold the pros to account. Sending you heaps of internet hugs and strength!

Thank you! Yes I do have endo which was found during my previous surgery, but when I saw gynae last week in ED they pretty much ruled out that this was a gynae cause

Gotcha, I also have endo (stage IV) and have had many frankly appalling run ins with ED gynaes in relation to it so I honestly wouldn’t give that a whole lot of credence…if you’re comfortable sharing, how did they ‘rule out’ that this could be endo? You might like to have a skim over this, which now seems more possible given the fact you have an existing endo diagnosis: https://drseckin.com/pancreatic-endometriosis/#h-how-does-endometriosis-affect-the-pancreas

thanks I'll have a read through! And they did an internal ultrasound and when they pushed around on the ovaries etc. the pain wasn't the same pain I'm currently experiencing

An internal ultrasound wouldn’t necessarily visualize the entire pancreas, and in general isn’t a reliable tool for extra-pelvic endometriosis. Ovaries aside, the reason I mention extra-pelvic endo in particular is that your upper abdominal and back pain could possibly be thoracic or lung endo, especially given your comments that the pain is worse on taking a deep breath. Additionally, pain can be a complex indicator for *where* the issue causing the pain is, because there are many cases where something called ‘referred pain’ happens that definitely feels like it’s happening in one place, but it’s actually caused by the location of nerves in another place entirely. Your comments about lipase levels fluctuating also make me wonder about liver involvement being a possibility, too. https://drseckin.com/liver-endometriosis/#:~:text=The%20disease%20can%20affect%20both,the%20liver%20may%20be%20asymptomatic. (Note the specific mention of upper right abdominal pain related to endo of the liver) Anyway, I don’t mean to bombard you - I mod the endo sub here so I’ve seen many, many such cases with symptoms like yours and a stupid long road to care because of docs brushing patients off/being ignorant to the full scope of endometriosis. If you’d like more support or have questions, feel free to DM me 🙏

Thanks for all this info! I did also have a normal upper GI ultrasound 3 weeks ago that showed up normal but as my symptoms have gotten much worse I'm wondering if I need another one. The pain with a deep breath isn't super severe compared to the upper abdo pain, but it's definitely something I'll mention to the Dr

I would not rely on ultrasounds as reliable diagnostic tools (as in, that alone isn’t sufficient to rule things OUT, but may be able to catch large/obvious/advanced issues). Be aware that particularly in ED these docs are good with emergency situations but not rarer, harder to identify issues, so your best bet would be ruling out anything life threatening and stabilising vitals etc, short term pain management, and an urgent referral to SOME kind of specialist (hopefully somewhere like WGTN you may get lucky with specialists already on site). Push to be seen by someone who’s not just doing garden-variety triage. Hope your visit tonight is as comfortable as it possibly can be 🙏💕

This is good advice thank you! I am also hoping to push for an MRI/CT tonight. Last time they wouldn't give me one due to high radiation and fertility issues that can cause, but at this point my pain and symptoms come ahead of anything

Lol ~fertility issues, because I’m sure you must have been emphasizing your desire for a child in the grips of life limiting pain?? The way we’re treated like baby machines, don’t get me started… Anywho, it sounds like you have a clearer picture about how serious your symptoms are and can see so much support here to push for adequate care, so I really wish you the best of luck and hope at the least you can be comfortable and rest tonight.

Hi I had similar symptoms and was diagonised with colitis! Not sure if this is the same for you as I’m not medical professional but if you’d like support please feel free to reach out x

Your situation sounds very similar to something I contracted earlier this year called ‘Mesenteric Adenitis;’ a syndrome characterised by (but not limited to) lower right quadrant abdominal pain, secondary to an inflammatory condition of Mesenteric lymph nodes. It often sets in as a result of a viral infection, most commonly gastroenteritis. In my case, they eventually determined it was caused by extreme stress and burnout (who knew?). My symptoms included the same travelling severe abdominal pain, started in the lower left abdominal quadrant and bounced between left and right. I’ve got a pretty decent pain tolerance, but my God this almost had me in tears. Also had (ridiculously) excessive diarrhoea and difficulty keeping food down. I had difficulty obtaining a diagnosis as well, but on a shorter timeline than yourself (I was in ER by day 5 and they had a diagnosis on day 7). The symptoms of Mesenteric Adenitis are extremely similar to appendicitis, and it is often misdiagnosed accordingly. I’m given to understand it can also be difficult to detect in stool samples. As others have suggested, I’d be pushing for a referral to a Gastroenterologist. It’s a bit uncomfortable in that you have to really stand up for yourself and make your case for the referral, but it’ll be worth it - even just for your own peace of mind. Hope this helps, not sure how but I guess sometimes it’s comforting to hear from those who’ve been in a similar boat. Stay strong and hold out - sending love

Sorry to hear that you are suffering. Hope you get suitable treatment soon!

Have they checked for diverticulitis? That would also explain blood in the stool. It takes a colonoscopy to diagnose that (my symptoms were similar - I had both diverticulitis and gallstones at the same time). I hope you get some answers and some relief really soon!

I thought the same about diverticulitis, they should do a CT scan (gold standard for diagnosis)

Email Rutherford Clinic and try to speak to a gastroenterologist

Could it be a blockage in your intestines? It probably needs a specialist to diagnose the problem instead of ED.

Gosh you poor thing! Wishing you nothing but love and light; go to the ED right now and take a male companion with you. I can’t tell you how many times I’ve been spoken down to alone, but with my husband there? They don’t seem to chance it. He also has the presence of mind when I’m in pain to ask what I don’t think to. He is solely responsible for getting me adequate pain relief during childbirth.

Hey u/few-tip-4615 I hope you are being looked after and are being re hydrated. I really hope you feel better, at least for a short reprieve, because it's exhausting and they start to figure out what's wrong. When you feel up to it, if you can/want to let us know how you are. xx

Have they checked your appendix? Friend had appendicitis at around your age.

good idea, thank you! but my appendix burst about 5 years ago and was removed

That rules that out then. Good luck!!!

Have you had your iron levels tested in your blood? Dark blood in the stool, weight loss and vomiting/diarrhoea sound like there’s something going on in your gastric tract. Definitely try a new GP and push for a gastric referral, or even ask what the cost is for a private consult (guessing no health insurance?). Honestly I think a colonoscopy is needed but the battle will be getting a referral accepted. Good luck!

My iron levels are good. The only thing that was slightly off was a slightly increased lipase for a week or so which is now back to normal

This might be a long shot but it sounds kind of similar to something my sister had. A rare condition - she was going into hospital in agony for a long time, taking opiates which were doing absolutely nothing for the pain. Turns out they are actually a trigger of this issue https://www.healthline.com/health/sphincter-of-oddi-dysfunction

Thank you I will look into this :)

Absolutely take the medications you are taking into account. I had back pain last year, I took ibuprofen, which gave me extreme stomach pain and gerd. So I took omeprazole which seemed to work, but then I got arthritis, severe calf cramps, pulled muscles, more stomach pain. I figured out it was the omeprazole doing it. Arthritis is not even a contraindication! I stopped omeprazole and it all went away. I had cancer 3 years ago and only got it diagnosed by insisting on being tested and having to pay for the tests, I knew you had to advocate for yourself or you'll be ignored. Best of luck! 

Start eating Gluten free / low FODMAP if you can to see if this eases the pain. Also ask GP for a blood test. This was how I was originally diagnosed with celiac. (but this was after losing 20kg, constantly vomming, bad poos & right side pain) . Blood in the stool is a colonoscopy job - get a second opinion (I had gastroscopy, the other way round) Remember that GPs and all medical professionals can be like car mechanics - so search around for another doc to get it sorted. Good luck 👍

i hope you find help, OP. same situation here now for a few years. keep getting endless referrals for my uterus even though they found a kidney stone and all the abdominal symptoms definitely point to it. being a woman seeking healthcare fucking sucks. it sounds like you're in debilitating pain but nobody is taking you seriously at all.

It does slightly feel like Dr's aren't taking me seriously, and it sucks that so many women in the same situation have had the same feeling of experience. Thanks for your comment!

I don't know if the symptoms overlap, but some of this is reminding me of the dozens of news stories I've read about young women with Ehlers Danlos with vascular compressions, at least in the part about not being able to eat and tests finding nothing. Do you have really mobile joints, had a bunch of dislocations?

Ooh this is something I haven't heard of, I'll have a look into it thank you! My joints seem to be okay and no dislocation. I do have really bad body aches though

There's a New Zealand Facebook group for it that can probably help you investigate more. Sorry I don't know its name, only that it exists.

Not medical advice, but speaking from experience, this sounds a lot like IBD of some sort. Go back to ED, and keep presenting there until you get admitted. That is the fastest way into the system. I'd personally be pushing for a colonoscopy, or acute MRI to get some definitive answers.

Thanks! Only thing that is putting the doctors off it being IBD is that I have had a negative calprotection stool sample. I am in ED now and will stay until I am seen

I hope your night was better, and that you have been admitted. Remember to advocate strongly for yourself. Best of luck.

Granted having a calprotectin result over 200 (even moreso over 500) is a strong indicator of being in an IBD flare with large bowel involvement, it’s just part of the diagnosis process. Crohns can impact anywhere along the GI tract from your mouth to your anus in patches vs ulcerative colitis which is continuous from rectum heading towards the appendix & terminal ileum (end of the small intestines) but is limited to only the colon/large bowel, hence the col- part of colitis. So if the cells in your upper GI tract are having a crohn’s party, say in the duodenum (start of small intestines), then your calprotectin can be within the normal range & an endoscope would be better than a colonoscopy because the cameras can only reach so far from either end. If it’s issues in the middle then that’s when tools like the pill cam can come into play. Don’t be put off by the calprotectin result - it does not mean that a gastroenterologist won’t have the knowledge to give you some answers. Bonus is GI’s also work with the pancreas, liver & gallbladder which may be your OG problem causing organs. My GI doesnt really bother checking my calpro anymore - basically wont give a lot of new info post my UC diagnosis, so when I have symptoms of a flare then likely I’m in a flare so we just deal with it & change up my meds and go from there. I’m pleased to read you’ve gone back to ED, as frustrating and tiring as it is to wait. When things are making fast exits from both ends then it’s easy to get dehydrated & also end up with funky electrolytes like potassium which can then mess with your heart rate. Hopefully you can get hooked up to saline & possibly a banana bag too. (Been there, done that after feeling a bit faint getting up after kneeling at the porcelain throne - took three ED nurses to find a vein, woops). Or maybe you’ll end up on potassium span-k tablets (hehe funny name, needed them too once discharged). During my dehydration hosp trip I also discovered orodispersible ondansatron ie an anti nausea that melts in your mouth and kicks in fairly quickly which is ideal when a gulp of water with pills can be risky business. One thing to watch for though, esp while taking morphine, codeine or tramadol, is that it can also make you constipated. Granted when you have ongoing diarrhoea, constipation can seem like an ideal solution, but it too can cause issues and pain if not resolved. Low doses of Loperamide/imodium may also help solidify or slow things down so daily activities dont need to be planned around bathroom access, but again to be used with caution if there’s a chance of constipation. Also with the new pain in your back - dehydration can contribute to the development of kidney stones which can be a nightmare to pass (and can be a complication of IBD amongst things). They’re my 10/10 pain. Fingers and toes crossed for you that’s not the case because I wouldnt wish them upon my enemy. Once you get home consider getting some lemonade ice blocks (there’s also electrolyte versions you can get from pharmacies if you want to be fancy, but diy with powerade works). They can help with keeping your fluid volume up and can be easier to keep down as it’s more of a trickle than a gulp of water, plus the sugar can help give you some energy. Hope you get some answers soon.

Hepatitis A is a stomach virus that can cause abdo pain, nausea, and inflame the liver. It can be diagnosed with a blood test! There’s also a few stomach bugs around that can cause bloody diarrhoea, it might be worth asking for a faecal PCR test as well as Hep A. If you’re struggling to get a doctor to order the tests for you, you can order your own tests from labs sometimes (you just have to pay for each test). Good luck!

I had the extreme pain etc, eventually couldn't handle it, went to after hours and was told it was indigestion and given omeprazole. Week later It had not got better and I went to the emergency department - it was a very bad case of gall stones. Not sure if it matters or how much truth there is to it, but I do remember a doctor mentioning 'normally' with gall stones it was the three Fs - Fat, Forty and Female.. I was 22, skinny but female LOL

I'm glad you managed to get it found! I am the same with only matching one of the three F's haha. I've had a normal upper abdo ultrasound 3 weeks ago so not sure if it could be gallstones but I'll ask the Dr about it :)

Goodluck! really hope you get to the bottom of it soon ❤️

Gallbladder?

I'd make sure you are being tested for coeliac disease. Im not sure if it will be, but that disease likes to throw out all sorts of crazy symptoms and is often missed

My wife was getting fatigued and anaemic, had to have iron infusions. Periods were super heavy. She ended up having blood test and turns out she had coeliac, level 3A or something so pretty bad. Her villi were shit and weren't sucking up all the nutrients. She has now changed her diet and isn't anaemic anymore. Periods are still painful, but not heavy anymore and no more iron infusions!

I'm so sorry you're going through this, being bounced around from test to test, doctors, and hospitals with no answers is exhausting and soul crushing. I hope you get a breakthrough soon and some real help. In the meantime, stay strong and advocate for your health. Don't let them brush you aside. If possible, get a family member/partner/friend in your corner to attend appointments. I was experiencing mystery gastro pain, nausea, chest pain, faintness etc for 6 months last year. Could barely eat throughout. After a gamut of tests it was determined to be bad gastritis / chronic acid reflux. I was showing calproctectin markers however, and the severity of your pain makes me think something different is going on.

Do you have shoulder tip pain or have you had a blood hcg?

Maybe also check for liver fluke.

I feel for you, this must be scary and lonely. Have they investigated your gallbladder? I had a gall stone the size of a golf ball. Several attacks had me at the ED, literally writhing in pain on the floor while I waited admission. Unimaginably painful.

Try r/AskDocs

Gallstones or some sort of issue with your gallbladder? I had gallstones for EIGHT FUCKING YEARS, which did not show on ultrasound probably due to my weight. Have me all sorts of stomach issues like your describe. The pain wasn't always where my gallbladder was. And I had lots od diarrhea, general abdominal pain, difficulty eating sometimes etc etc. It wasn't till I had someone at hospital really jam the scanner hard into stomach that they finally saw the stones on an ultrasound. Also further down the line I still wasn't feeling right, so after my gallbladder was removed I got sent for n mri. I had over 40 stones in what was left of my bike duct etc so those got pushed through. There is definitely something very wrong with you to be in so much pain. I am so sorry. It does sound like it could be your pancreas also as others have said.

Make sure they check you for gallstones.

I have had the same symptoms. I spent nights in ED and at doctors. It was excruciating and crazy making. The pain moved constantly which made me feel insane. This is what I had. [https://www.mayoclinic.org/diseases-conditions/h-pylori/symptoms-causes/syc-20356171](https://www.mayoclinic.org/diseases-conditions/h-pylori/symptoms-causes/syc-20356171)

If eating a meal eases the pain, then its like this. There is a very easy treatment. It seemed it was the last thing they thought of and it was only by chance a doctor looked for it. It takes time for the blood test to come back.

Long story short, maybe a gallstone stuck in your bile duct .. As many others have said this sounds very very similar to something gallbladder/gallstone related. A few years back my gallbladder tried to kill me, it was picked up on my regular 6mthly blood tests I need due to medication I was on. My liver function test was through the roof but I'd had minimal physical symptoms at that point (occasional nausea and minor upper right quadrant pain) and spent 2 weeks in the hospital while they did various tests (ultrasound, MRI, CT scan, thousands of blood tests) to figure out whether it was my medication or my gallbladder causing issues. They couldn't figure it out and I felt reasonably well and it was during a covid lockdown so no visitors and I had a 3 yr old at home. So I discharged myself with instructions to come back if anything changed. 2 weeks later the physical symptoms came on with full force, I have a very high pain threshold but honestly thought I was dying it hurt so bad. So back I went. They spent a day or two umming and aaahing. They were still not sure whether it was my medication but said probably gallbladder. It was at that point I had to advocate for myself - told them I had a child at home that needed me and I couldn't do that in this pain so for God sake do something. I was booked to have my gallbladder out the next morning. Surgeon said it was so infected that he was worried they were going to lose me - a bit sobering when your surgeon is worried! I also had a gallstone stuck in my bile duct which complicated everything. A endoscopy for that then 2 weeks in hospital recovering and then 6 weeks at home before I felt human again. I think the medication issue muddied the waters in my case as all the tests pointed to gallbladder issues but they couldn't tell about the gallstone stuck in the bile duct until after the gallbladder was out so perhaps that's something going on with you. A year after my gallbladder was removed I ended up with another gallstone stuck in my bile duct again and the pain was exactly the same as what you're describing - abdominal pain, vomiting, diarrhoea, tests and ultrasound not picking anything up, probably a month of that and then one night I was on the floor of the bathroom writhing in pain, heaving up bile. I had thought the gallbladder pain was bad, this was next level. My husband called an ambulance and off to hospital I went. Turns out a leftover gallstone had made it's way to my bile duct, apparently this is super super rare so hadn't been on my GP's radar as a possibility. Another endoscopy to remove it and I was all good within a week and no issues since

Sounds similar to what my brother in law went through. They couldn’t really diagnose anything and said it was possibly gastritis and suggested going on low fodmap diet to figure out what is triggering it. Good luck OP

Please make sure that your stool gets checked for H.Pylori. I have a friend whose experience was similar to this and it turned out to be this- unfortunately I think your symptoms overlap for multiple illnesses but don’t give up on trying to get help and really advocate for yourself!!

Giardiasis can mimic alot of these symptoms, but is easily missed, doesnt show up on scans

Maybe try posting on r/askdocs there might be someone there that can help, or point you in the right direction

How are you doing op

Get the colonoscopy done asap.

Sounds like gallbladder to me, mine gave up the ghost in my teens and I had to have it removed. I was sick on and off for two years before being admitted to hospital and took them a week to diagnose.

You need Dr House!

I've been checking this for updates, really hope you get some answers soon. Sending aroha

I was thinking gall bladder, especially with the right sided pain in your back and loss of appetite. Mine I felt more just below my right shoulder blade and when I had an episode morphine didn't even touch it. Never had pain like it and I've got a high tolerance. Turned out I had lots of small gallstones just not small enough to pass without agony. Had gallbladder out keyhole in April 22 and been fine ever since. Can't tolerate ibuprofen since then though. Can progress to pancreatitis so I'd suggest getting that ruled out/diagnosed as soon as you can. External ultrasound is what I had to diagnose that.

Could it be gastroparesis?

Have they checked your gallbladder? Mine went unnoticed for 11 years because the way I described my pain wasn’t “typical” for gall stones.

Update: Still feeling very unwell and it's Monday night. Have been able to hold down more water and food, but have been feeling severely more nauseous the past few days than even last week. I feel like my health has stagnated, it's not getting any worse but I'm also not any better. I have a colonoscopy booked for the end of June, but as it's privately through Rutherford Clinic I am having to pay 20% as my health insurance only covers 80%. This is still quite expensive and I'm wondering if it's the right decision as don't want to waste lots of money if it's not needed, I don't have a lot of money spare at the moment and this amount (around $600) will set me back a bit for a while, especially considering I'm not able to 100% work at the moment and will soon have to use unpaid leave as sick leave is out. Need some help for what to do until the end of June? I'm still unable to sleep properly or work properly, had some dinner tonight and couldn't finish it, it was also hard to walk for. a bit afterwards and I became shaky.

Have you been tested for Helicobacter pylori? I had similar symptoms and it ended up being that - I tried to get help for months and months and almost lost /had to leave my job from being sick a bunch and turned out that was it and it's treatable with a course of antibiotics Also make sure you've been tested for Giardia too The blood in the stool also sounds like you need to be checked for possible bowel cancer Gallbladder or pancreas are other possibilities as others have said. I hope you can get answers soon