I know it's a really horrible subject, and will appologise for the detail before i start, but I'm feeling so unwell today and was wondering if anyone else had experienced this. My current diagnosis is undifferentiated connective tissue disease which is thought to be likley lupus, although this hasn't been fully diagnosed yet.
So my problem is I have the most horrendous diarrhoea and vomiting every 2-3 weeks that wakes me in the middle of the night with excruciating stomach pains. And then I'm up all night with it, so last night I had another one of those nights. My concern is though that for the second time now I've brought up my tablet, this time it was taken 8 hours before vomitting and last time it was nine hours. The tablet on both occasions has been whole and easy to identify. Also on top of this I am vomitting undigested food, so last night I brought up whole rice from 10 hours earlier, which is worrying as there was a lot and it looked just like it did when I ate it!!! I'm so sorry to be so grafic, I know it's a horrible subject but I'm really worried. I don't think my gastroenterologist really believes me, so last night I took a photo, lets just hope no one looks at my phone or they may think I'm a bit weird lol!!! The lengths we go to, to get these doctors to listen!
My gp thinks I'm not absorbing things and medications properly and I do have a long list of deficiencies like folic acid, b12 and vitamin d. I am under a gastroenterologist, who doesn't seem to know what's wrong at the moment. My endoscopy recently was fairly normal, well normal for me anyway!! But I'm waiting for a Celiacs biopsy result, so I'm seeing him in the next two weeks. But I really am at the end of my tether, I feel so very ill this morning following such a rough night and I want to go back to work soon, but i have no control over when this happens and it is fairly regular and very debilitating at present along with everything else. I wouldn't have been able to work this morning for example if I was back in work, as I'm too scared to be away from the toilet at the moment and my stomachs very very sore, And no one seems to know what's going on!!!!
So i was just wondering does anyone else have this, have any advice, or know what it might be?
Thank you in advance xx
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Kelfreem
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Hi Kelfreem, I am so sorry to hear that you are so unwell. My heart goes out to you. It is so unsettling to have odd symptoms isn't it?
I have no experience of those exact and trying symptoms. I just wanted to reach out my hand in support and to tell you that you are not alone. I am sure someone amongst us will have similar experiences and some advice and more support for you.
I hope your health improves soon.
Please take great care. You are not alone. We all share this complicated condition.
Thank you footygirl, it's just so frustrating! Maybe the doctors will work out what is going on soon, I hope anyway. Thank you for your lovely support, i know that a lot of people on here are going through worse than me, it's such an awful condition that we are all dealing with. I hope your well, thank you again xx
So sorry you are feeling so ill. Hope you can get the diagnoses/treatment soon. When you say your endoscopy was "fairly normal", what does that mean? Did you have any lesions? Also have you had a colonoscopy? Two possibilities come to mind with your symptoms. One being inflammatory bowel disease. The second being gastroperisis. It is when your intestines are very slow to digest food. Sometimes it stops completely and everything just kind of sits there. That would explain the undigested food after so many hours. Both of these conditions are common with other auto immune diseases. Do you see a rheumatologist?
Yes I immediately thought of gastroperisis as AuntTea has already suggested. So sorry you are having to endure all this. As someone who has done rather a lot of vomiting one way or another this year I have huge sympathy for what you describe - although mine was the result of drug reactions and reflux.
I think gastroperisis is usually confirmed with a stomach emptying test so I'm surprised your gastroenterogist hasn't yet conducted one in you? Maybe time to become pushy and ask for further investigations whatever the coeliac test reveals?
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I have Gastroparesis and vomit undigested food at random and violent intervals. Gastric emptying tests are not the most reliable. You can be diagnosed based on symptoms alone.
I really feel for you. Not all gastroenterologists are that clued up on GP, especially not in this country.
Are you on any narcotic medication by any chance; tramadol, codeine or similar? This was considerable slow down gastric emptying. For me, I couldn't function without some codeine, so it's a choice I make.
I'm on domperidone and cyclizine for my GP. Also, having adjusted my diet, I am much better managed that I was, so there is hope.
Kelfreem, seems to me you're being v brave and going through a really horrible passage. This severity of symptoms is something your Drs really do need to know about and respond to promptly.
Am vvvv much feeling for you. And I feel I possibly can truly empathise because since childhood I've been managing somewhat similar problems with my GI system. These particular sort of GI symptoms got worse over the decades (am now 61) and have been fairly convincingly diagnosed. but getting them figured out has taken some time....probably, I feel, because I'm typically "complex", having infant onset lupus + early onset immunodeficiency + ehlers danlos type hypermobility.
On reading the replies you have above, my heart is with footy, and I'm tending to agree with aunt tea & twitchy's analysis & suggestions
I'm no expert, but I have years of experience, and my feeling is that, if you haven't already, and you have the energy & time, you'd do well to monitor & log your GI symptoms in detail so that you can continue to lobby your doctors for convincing diagnosis and more thorough investigation. If you're like me, your GP will be key in figuring this out...he/she needs to be v clear on the pattern of your symptoms & that these symptoms are interfering with your meds taking in such a way that you cannot benefit from your meds. E.g. Continue to take photos of the pills that come back up etc.and try not to hesitate to share them with drs
Anyway, because my lupus diagnosis was kept secret to me, when I moved to the UK the NHS inherited me unaware lupus was my primary. This resulted in my chronic GI symptoms puzzling Drs for nearly 40 years...during which I was misdiagnosed & treated for hiatus hernia and reflux. by the time I finally was more thoroughly investigated by gastroenterology I had just turned 50...and my lupus was still unrecognised, but my hypermobility was diagnosed. In certain types of hypermobility these types of GI problems can be characteristic.
Anyway, colonoscopy was clear, but gastroscopy & other tests revealed chronic gastritis & oesophagitis & metaplasia with enough gastroporesis to require treatment (but no hiatus hernia) with both domperidone & oesomeprazole for 6 years. The consultants missed the autoimmune issues, and blamed the daily NSAIDs & analgesics I'd been prescribed & taking for over 6 years mainly for chronic spine & muscle pain. 24 hr Oesophageal manometry & ph monitoring revealed that reflux was not my problem. So, I took the GI meds which did help & I focused on lifestyle management even more closely than ever before in my life....vvvv careful antiinflammation diet etc etc. finally my lupus was re-diagnosed 4 years ago, and treatment has helped a lot generally with my multisystem symptoms & conditions....and now my chronic GI symptoms are truly quite a lot easier to manage
I hope something in there helps a bit...take heart❤️...you really can improve this situation & your Drs really can help you...it's largely a question of perseverance and effective communication
Hope you'll let us know how you get on
XO🍀
PS if you haven't already, do talk to your Drs about only prescribing gastr-resistant, e.g. Film coated, tablets when the make out your prescriptions...and double check whether your meds are best taken with food (also, when I'm in a flare of GI stuff I try to stick even more closely to the anti inflammation diet and I sip freshly made ginger tea all day long...it's lovely chilled!)
My GP suspected colon cancer because I had a lump in my abdomen - left side, but I weighed only 5 stone 10 lbs then because my GP didn't listen to me when I said I was physically very ill before that; she said I was depressed and put me on antidepressants, which made me more ill.
The gastroenterologist wouldn't risk the picolax for a colonoscopy.
I went the alternative route for a long time and was prescribed a green natural nutrient drink which I lived on for about a year.
Like you my food was coming out as it went in - undigested because I couldn't digest/absorb/assimilate anything yet alone drugs - in fact it was inflammation throughout the gut and IBD caused by trauma, stress and toxicity and the wrong diet for me. I eat no grains, dairy or additives/preservatives now and I am a lot better.
I was shown neurolymphatic reflex massages by a kinesiologist to get my peristalsis going and keep it going because it is when the peristalsis stops digestion stops and it feels like you're dying.
I can take no drugs because I cannot digest them; a therapist said my body doesn't know what to do with drugs and supplements only good food.
I was on so many drugs for a long time and then I ended up so ill; steroids, iron tablets, aspirin, antibiotics - it is a wonder I am still alive, but with determination we can all help ourselves.
Doctors know more than they did then, but for people like us we have to get everything right including drugs and that is not easy - trial and error is no good for me now it just intoxicates me.
Go by your gut feeling about what you take; we do know what is right for us, but we have just got used to thinking only others know what is right for us and I found out to my detriment by nearly dying that this isn't always the case.
Try to keep calm because stress is a disaster for us; some people live on stress, but it messes my body up and I have to do meditations and relaxation exercises to deal with it or I just get ill again.
snap kelfreen.....i throw up nearly every night,,,whille sleeping,,,so lie on my back,sitting up...dont help my back at all,,,,ive same has you...but they said prop lupus..the sle one..ive gone from size 10,,too 14 and dont eat much at all........i am not copeing...they said i should of been looked in too 20 odd year ago.........crap eh,,,,,,,,,,,,xxxxi had bad phymioa cant spell...few year ago....thought i was a gonna..yeap 4 gps said nothing wrong...i had it in both lungs..in hosptail for 8 nights..2 diffrent antibiotics at same time.....they said should been in week ago....yeah...the blood was horrible...they were baffled why i had it and so bad,,,,,even checked me for hiv/////////xxxxxxwith ya
I have the same problem as you vomiting almost every night undigested food. I saw a Gastroenterologist and as soon as I said I always start to belch and hiccup after my lunch or dinner he said it's to do with your oesophagus. I had several test done including Oesophageal monometry (which includes putting a nasal gastric tube into my stomach and leaving it for 24 hours and I had to record everything I ate and drink).
The conclusion was oesophageal spasm. My oesophagus isn't working properly to let the food into my stomach at the normal rate so the food and liquid just build up into my oesophagus and the only way is up.
I do find if I eat small amount instead of normal portion size I might not vomit.
Hope this is helpful. You could ask you consultant about this.
Thank you so much for all your comments and support, it's nice to know that I'm not alone in this. Hopefully my gastroenterologist will listen to me when I see him again. I can't keep on like this. Its funny about the hiccups as I get them a lot after food, never thought much of it really, so might be worth me mentioning. I think sometimes I'm so unwell that I've become good at dismissing things myself until they become really bad, this symptom has been going on for about 18 months now, but has become more frequent now :-(. I'll let you all know how I get on, but I think I need to be more firm, and say I'm not happy. Thanks again everyone and i hope your all well xxxx
Hi Kelfreem, did the Gastro get to the root cause yet? Im going through the same at the moment ... Colonoscopy seemed normal however they did find blood but didnt know where it was coming from (losing blood from my bowel was the start) I started to get a horrendous pain under my right rib and the Rhuma thought it was my Liver .. but a scan just showed a Fatty Liver ... Ive just got worse and worse and finally had a Endoscopy .. they found Esophagitis, Hiatus Hernia, GERD and food still in my stomach after nearly 20 hours after eating .. Im now constantly in pain in the upper stomach and anything I eat Im sick about 4 + hours later ... I have eaten small bland meals some not even meals ... Im still waiting for biopsies .. Gastro thought I was neurotic as with GPs until diagnosis .. I just hope next time I see him he will listen ... Id love to know whether you had a diagnosis -x-x-x
Hi Elle, I've been lucky as my symptoms have settled a lot since being on the methotrexate injections, so I think it may have been related to the connective tissue/lupus. I did have a stomach emptying scan, which did not show any problems. So the gastroenterologist said he thought I had an intermittent stomach emptying problem as I had shown him pictures taken at 5am on my phone of the vomit with tablets, rice etc. I'm now on domperidone to help the stomach to open on the days it plays up. So we never really got to the bottom of things, but they seem to be settling on their own and I'm feeling a lot better with my stomach symptoms, not sure how long that will last though. Having said that my kidneys are now misbehaving instead now, always something with this condition lol. I hope you get sorted soon, it sounds like they've already found a few of the problems. You take care and keep pushing for answers if your not happy, you know your body best xx
I used to get bother with terrible diarrhoea and nausea, although I was never actually sick. After this happened for a few months my GP put me on an elimination diet and I was diagnosed with coeliac. If there is a chance this is what is wrong with you I advise that you be tested properly and don't cut out gluten until after you have been. My GP didn't order the biopsy prior to me stopping gluten so I can't get gluten free food on prescription. 😡 I would have to go back to eating gluten for six weeks before getting the biopsy. I couldn't do it. I feel awful if I eat even a little gluten by accident, worse than before I stopped eating it, so couldn't put myself through a full diet containing gluten.
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