Posted , 7 users are following.
Was just wondering, if anyone has pain in only 1 site on their body, e.g. I have RUQ pain that comes in waves and can be debilitatingly painful, is it a typical characteristic in IBS sufferers, or is the pain more sporadic in its location ?
0 likes, 28 replies
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Alexmuk
Posted
You know, if someone says "oh I've got IBS", the last thing that comes to mind is crippling life changing amounts of pain that disable you.. People don't take it seriously, because it's such a common dX.
joanne74503
Posted
jane40765
Posted
you could possibly also have a condition called sphinter oddi dysfunction.I have IBS and diverticular disease and oesphagitis and I get terrible RUQ pain, and they said it is probably sphincter oddi dysfunction. Does not show on scans.It is literally what is says , the oddi muscle/valve does not function properly, causing back up of bile juices which causes RUQ pain. Most people who get it have had gall bladder removed but IBS etc can cause it too.
Alexmuk
Posted
I had touched on it before, it is a pretty rare condition but possible, just not looking forward to the more invasive tools used to diagnose this.
The pain hasn't seemed as bad as it was recently, but my liver ALT has gone up again (doesn't seem related to the pain)
jane40765
Posted
They won't do the invasive test for it if you only have the pain ( type 3 sod ) as it is too risky and can cause pancreatitis.They diagnose it by process of elimination. I had never heard of it before, but its more common than we think. I was on a different forum (till it got spammed) and there were loads of people with it. The drs just dont like to diagnose it because it is basically an untreatable condition.
Alexmuk
Posted
It doesn't sit right with me that all my symptoms lie with IBS, most things doctors can blame it on, but definitely not the disturbed liver enzymes (which could be possible with SOD), still not sure why the pain is responding tho pregabalin though and neither are any of the doctors !
Another possibility is that the gallbladder, although structurally looking okay on ultrasound, may not be emoting properly, which by my research means ill need a HIDA scan, and I notice they seem to be a bit scalpel-happy taking gallbladders out, which I definitely don't want !
melinda53093 Alexmuk
Posted
jane40765
Posted
Doug1253
Posted
Alexmuk
Posted
I need to rule out:
The persistently elevated, fluctuating enzymes being
Coincidental, and not related to the pain, and this is being caused by something I've not yet thought of.
SOD
Referred pain from elsewhere in the body
Poor Ejection fraction gallbladder
IBS
That's my short list
Imsy Alexmuk
Posted
I know your post was quite some time ago now but I was just wondering if you had any progress with your problem?
Yours sound identical to mine and my pain is getting worse and worse and I’ve had it for about 3 years now. I’ve had a Hyda scan, ultrasounds on my liver and abdomen with no conclusive results.
My LFT levels are high but I have overindulged so this is not overly surprising but likely not the cause of the pain.
I’m due to have a colonoscopy and gastroscopy next week but they said it’s likely that they won’t find anything and will put it down to IBS which I’m convinced is not the case!
Stress is seemingly another easy diagnosis that the doctors are suggesting but I know there is something else going on and it’s really affecting my life.
Any insight would be much appreciated!
Thanks!
Alexmuk Imsy
Posted
I am no Doctor, but I have developed quite an intimate understanding of the gastrointestinal tract over the past couple of years since this post was made.
It is quite difficult to advise over the internet with minimal history and no lab results and forums are, quite understandably, susceptible to bias anchoring; people will try and apply a one-size fits all approach according to their own past experiences which isn't always helpful. But Ill do my best.
The endoscopes, if they appear unremarkable, will greatly increase the chance of your pain being a functional issue and not organic disease, however will not eliminate the possibility altogether. There are sections that cannot be visualised by the scopes, and there are other modalities used for this.
There is the option of capsule endoscopy to image the small intestine, if indicated, but it really depends on the results of your scopes and if the gastro decides its warranted.
Another thing you didnt mention, which may give a clue to the origin of your pain, have you had an MRCP? (MRI-based alternative to ERCP) which will allow usually quite detailed images of your biliary tree that ultrasound may not have focalised.
Also, there is a relatively new test available called Faecal Calprotectin, this is a measure of a specific marker of inflammation in the stool and a good way to distinguish between active intestinal inflammation and functional problems. See NICE guideline DG11 if your doctor asks what on earth it is.
In my own case, it was the referred pain part of my shortlist that was suspected to be causing the RUQ pain. It turned out that coincidentally I found a tender thoracic vertebra, which after onward referral (at my request) to physio, MSK & rheumatology, I had a previous wedge fracture at T11. It is at around this level that the nerves run round to where your liver is, so the pain could of course be coming from a totally different area of your body.
What has been trialed so far for the pain?
Antidepressants? (SSRI, SNRI)
Antispasmodics? Mebeverine or Peppermint oil
Regular OTC pain medicine, do these help?
Alexmuk
Posted
Again, since I don't know a more detailed description of your symptoms, your diet etc. it is a little difficult to advise you specifically, but certainly don't take my advice over a decent doctor's.. then again, there are some doctors out there that anchor to a diagnosis of IBS, but unfortunately, if all the other potential things (depending on your symptoms) has been ruled out, it could very well be IBS or functional pain of unknown origin that could be worsened by stress, alcohol, poor diet, anxiety; please dont think that means its in your head though, because I have even met consultants suffering from conditions termed totally neurogenic, which IBS is not. IBS in general is a hotly debated topic, and id be cautious in any attempts to "detox" , do you take supplements? There is some really bad information out there from misinformed people that go against the concept of evidence-based medicine, so be really careful in your search online for answers. Of course people deviate from evidence based medicine and sometimes with success, but you run the risk of worsening things and confusing your doctors if you introduce regimes without letting them know.
If theres anything you would like to know, or explaining in a simpler fashion, don't hesitate to let me know. If im not sure of an answer, I won't pretend I am and I still have a lot more to learn.