I'm hoping someone will be able to help/explain and any advice will be gratefully received.
I have A.I.H. P.B.C and antiphospholipid syndrome and for two years I have been experiencing severe pain either soon after eating or three hours later.
My gastro consultant put it down to reflux. I have been taking Lansoprazole for over 5 years and have bought all, over the counter medications, Gaviscon/Guardium/Nexium etc but nothing touches it.
As soon as I start eating, I feel an irritating fullness/bulge on my left side, which is more annoying than painful, but then it moves to the upper part of my stomach and wraps around into my spine. My stomach is bloated. The fullness feeling on the left can also come on without eating. I have never experienced such severe pain; I am still up at 3am scalding myself with hot water bottles front and back.
No painkillers help, not even morphine. I stopped all the possible foods; spicy/fatty but it doesn't matter what I eat, a banana or a bowl of porridge made with water can now bring it on so I am hardly eating which I know is not good, but I can't stick this pain much longer. Due to Covid my gastro consultant hasn't seen me since March 2020, and just advices me to go to A&E, but if it's not safe to see your consultant, how is it safe to go to A&E? besides, I was admitted to hospital with a suspected blood clot back in June and the patient in the bed next to me had covid and I was discharged home to self-isolate, so I'm scared. I asked my GP to refer me for a scan, but she said as I'm already under gastro all she could do was to write to him. I'm worried it could become serious and fed up with this constant pain.
Has anyone got any thoughts of what it could be?
Thanking you in advance
Written by
Wonderfullife68
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You don't mention having had an endoscopy. Pain such as you are experiencing may be linked with other issues in your digestive tract like ulcers, hernia's etc or infections such has Helicobacter pylori (H-pylori). This needs investigating further as it may not be linked with any of your other diagonisis's or may be a side effect from meds causing damage within.
Thank you for your reply. I had an endoscopy 3 years ago, I have diverticulitis, and an abdominal scan 10 years ago revealed gallstones. The consultant I was seeing at the time put me on a waiting list to have my gallbladder removed, but my new consultant advised me not to have the operation.
The level of pain you describe is obviously unacceptable. Also as you imply, it could be a sign of something that needs addressing.
Hospitals are really safe places now compared to a year ago. Clinical practices are stringent and the mitigation of cross infection is generally excellent.
I really would go in and try to get an abdominal CT (ideally your GP would arrange this but you say they won't - which is rotten) a gastroscopy also seems justified. It may be a stomach ulcer, a problem with the bile duct - the truth is it could be a few things. Pain is so hard to describe and although many members may relate to what you explain here, I'm not sure it would provide real evidence of what's troubling you (although it's always nice to have someone relate to your experience)
Not eating is clearly going to become a serious problem on its own, so I guess I'm just saying trust the safety of hospitals and at the very least call 111 to get things moving.
Thank you for your reply. My GP informed me that in Wales GP's can no longer send you for scans if you are currently seeing a consultant which covers your condition. Wales has quite an elevated level of covid cases and having three autoimmune diseases does concern me, but I do think I am at the stage that I have no other choice. I appreciate your feedback. Thank you.
Well you're clearly more vulnerable than most and having an appointment for a scan is so much better than sitting around waiting for one.
Again though, even with these extra challenges the protocols we are using to keep patients safe are extremely robust compared to the start of the pandemic. That said whatever way you look at it, I'm sorry you're between a rock and a hard place with this.
Out of interest was there ever a time that the PPIs like Nexium were relieving the pain?
In terms of the scan you'd ideally get a 360 scan like CT or MRI. Ultrasounds are useful but they struggle to see things like the pancreas clearly. Also as you've a history of diverticular disease scanning your whole abdomen seems prudent.
Hi sorry your not feeling well. I’d push for a ct scan or MRI have your gallbladder checked again it could be the stones. Also make sure it’s not pancreatitis as that can be pain full but usually comes with more symptoms. Your pancreas may be struggling though as it effects digestive enzymes. I’m not a dr so it’s just a thought.
Thank you for your reply. I have been thinking along the same lines as you.
Hi wonderfullife
I think you should go to A&E. When pain gets to the stage where oramorph does not subdue it you need to be examined. At the very least, you will get an examination and bloods done, plus a scan or, possibly admitted for scans.
Being in hospital at present can be concerning but I think the intensity of this pain and the fact that it is affecting your eating makes it more of a priority than the risk of covid.
I hope you are sorted quickly and pain free once more
HelloWhen the pain I had became unbearable it was usually trapped wind or gall stones. There are so many different things. The doctors suspected ulcers. The proof came from a CT scan.
Now I didn't mind so much going into A n E (except waiting times) because I didn't mind having the COVID tests done for myself, piece of mind for me. Also in hospital use your common sense and do what the doctors and nurses do (who work there everyday) keeping the mask on, watching your distance and antibacterial lotion on your hands.
Now that far outweighs finding out what the cause of the pain is. Maybe if you stress enough with the consultants you maybe referred for a scan, one visit in and out.
I agree with everyone else, if your GP can’t refer you and your consultant has said go to A&E then that’s the best way to get the tests you need to find out what’s wrong. I know Covid is scary but ask yourself what you would do if you weren’t afraid and do that. As Danny said, you can take precautions, masks, sanitiser and keep your distance. Hopefully you’ll be in and out and pain free. Good luck.
Bloating & relationship to eating suggests possibility of irritable bowel syndrome - a good dietitian can help.However wise to see GP as bloating can be symptomatic of pelvic/ovarian issues
Hi, I've had the same symptoms for the past 6 weeks. Dr arranged bloods, stool, gastroscopy (mild gastritis) and I paid for a private ultrasound which proved to be of limited use as it couldn't see the pancreas clearly enough.
I ended up in a&e twice and emergency day care 3 times last week in severe pain which the gabapentin and Ora Morph didn't touch.
I had been refused a CT scan by the hospital radiographers based on my bloods and an erroneously called (imo) kidney scan
Finally today my GP got me admitted to the Acute Medical Unit and I finally got to see a Gastro consultant. I have been kept in and have ct scan and endoscopic ultrasound tomorrow. Of course I am very worried now given my pain, weight loss and other symptoms but at least I am closer to a diagnosis. It's been a nightmare few weeks for me, and I daresay you are feeling the same
Have to say A&E were very poor in dealing with me and made some poor decisions about addressing my symptoms. Spent hours and hours there in pain. They are only interested in shifting the numbers out of the waiting room as quickly as possible.
The only thing I can say is you must keep on nagging your GP and calling 111.
Given your symptoms you need to get yourself admitted as an inpatient. That's the only way you will get the concentrated attention you need.
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