Should everyone routinely be offered an end... - PBC Foundation
Should everyone routinely be offered an endoscopy. Was not mentioned to me by my consultant when i was diagnosed in March this year.
Hi I was diagnosed in March this year also wit PBC and AIH. I was given an ERCP (endoscopy) because I was very jaundiced and had to have a plastic stent put into my bile duct to try and drain the bile. I also had some narrowing of the bile duct, and a blockage from gall stones I never knew I had.
I am not sure if you should be offered an endoscopy as routine, but I think it depends on how your hospital do things,
Onthe NHS each hospital seems to have their own routines.
xxconniefused
conniefused. I've found that each NHS Trust has its own policies. I attend four different hospitals - 2 in one Trust and 2 in another. One Trust does things quick and easy and the other makes a big deal of everything. Think if I sneezed while I was there I'd be given a bed! I've had a blocked bile duct since last year and one hospital was saying it was a stone and it might dissolve by itself. The other one said it was a growth. I was at hospital on Wednesday for yet another liver scan. The Radiographer asked if my last scan was 2009 and seemed surprised that Wednesday's was the third scan I'd had in a year and that the other hospital hadn't informed them. There are advantages to attending all these hospitals - differing opinions, different options, fresh minds but there is also the downside. They don't communicate with each other. Happily my GPs are great and keep them all in the loop. (
Hi,
I think I was given one more for the acid reflux I was suffering with. They found I had a hiatus hernia.
Hi Mojo62
my understanding is that they would only do this kind of investigation if you had a problem with something, or some kind of clinical indication that something was wrong, the two replies from Conniefused and zipitydoo seem to echo that, and I only had mine after a bleed.
I am sure you can ask your consultant what the policy is in your Hospital?
x
I think no, as this is an invasive and costly procedure. The risks are to high unless someone has symptoms.
just my 2 cents
Why are you asking the question? Is there something is shows with PBC in an Endoscopy?
I had an ERCP with Sphincterotomy a year ago for Sphincter of Oddi Dysfunction and recently the pain started real strong again and the GI Dr. wants to do an EGD - Upper Endoscopy because along with the strong pain I also am having severe constipation issues.
No. I do not think any Invasive Proceedure should be suggested without the fact that it is really needed.
I had an endoscopy before my transplant. The equipment itself costs several hundreds of thousands of pounds, so it is only used when necessary.
Your Hospital and Consultant would have a Policy on this.
Hi
Only having one now, as my platelet count is a bit low and they want to check for varices. Also my pancreas was a bit enlarged on the scan - probably because I did not fast (oops) and they want to make sure that is ok. As the others have said,only if required. I have to say I am not looking forward to it.
L
Ive had one because I had reflux to look for underlying cause. I think you only have one if someting is not right rather than routinely.
Don't think so.....
.....unless I start having other symptons.
Apparently having something called ERCP (camera that checks out the biliary system and can be scanned) can actually cause pancreasitis which as I understand can then cause other problems.
Yes procedures can be a good thing but they can also be a bad thing too in my opinion.
I would never have thought it before but the one thing I would absolutely dread now would be having to stay in an hospital bed and having to put up with the itch and knowing I couldn't exactly move anywhere.
Could be right Peridot. As I said, I've now had three endoscopies and last one July then just after Christmas had some problems with my pancreas - amalyze level was high for about 4wks then it returned to normal. Could have just been delayed - 5mths, mind you, but delayed reaction from the endoscopy. (
I was sent for one ( camera both ends ) I could not take the one they tried to get down my throat so they gave up, they have asked since if I would like to try it again and I refused as I don't think I need on, I know what is bloating me up and making me feel sick, it's the urso as when I stop taking it i start to feel like a normal person again ( sort of )
XXX Linda
Linda, ask for light sedation, I wouldn't be able to tolerate it without being out of it. Also, I think you may be right that it is the Urso causing the problem, but the problem could be something you need to address if you must take Urso. There are medications to help with acid problems, although you probably don't want to take more medication.
I did and they gave me 3.5 MG of valium and that was no utter use to me whatsoever as I have beed prescribed valium since I was 17 for another problem with my neck, I don't take it all the time but I can take 5 or 10 meg and go out. they told me that was all the sedation they could give at the unit.
XXX Linda
My doctor said no, that he would only do that if he were looking for an ulcer or something else unrelated to PBC.
At my last (second) 6-monthly visit to my consultant on the 26 March he said "have we looked into whether you have any varices?" My answer being "no" he said he would arrange an endoscopy to check this. From the way he spoked, I assumed this was a routine PBC procedure.
I'm quite interested to know whether I have any varices, but haven't received an appointment yet, and am not reminding him - from what's been written in some of the answers, it sounds as if it hurts!
Pat_H
Hi Pat,
I wouldn't be put off by the comments on here. Everyone is different. I am the biggest coward going when it comes to tests, but the endoscopy whilst unpleasant did not hurt, the skill of the staff made it bearable and I just had the numbing throat spray so I could leave straight away. My endoscopy was to check for portal vein hypertension, a complication of PBC. Be brave x
In my case I didn't feel a thing. They gave me a light sedation....best refreshing sleep I have ever had....was out for maybe 15 minutes.
Endoscopy is a great tool. As with ANY treatment the benifit should be weighted against the risks.
my understanding is that if pbc has progressed to cirrhosis then yes, routine endoscopies are necessary for varices monitoring. I have had numerous ones done prior to diagnosis for unrelated problems with my oesophagus (although reading the posts on this thread there does seem quite a few of us with oesophagal issues??) Since progressing to cirrhosis have had my first for varices monitoring. whilst they are unpleasent, I think I have had far worse proceedures and the risk to health from undetected varices are, i believe, much higher. chat with your consultant or doctor for their thoughts on proceedures.
I had an endoscopy several years ago for acid reflux (made worse by hiatal hernia). Honestly compared to other procedures it was no big deal, provided they give you twilight anasthesia. They started to do stuff to me and then I asked them when will you start. They said, youv'e been done for an hour and just waking up!
BTW what is varices?
maddieroo, varices are quite a nasty complication that usually occurs with cirrhosis, they can be in the rectum or the oesophagus and are like varicus veins which untreated burst/ bleed, I believe they have a fairly high mortality rate if they do burst. having said that they are easily detected with an endoscopy and are "banded" which basically means they are tied up with a band and that stops them.
Hi there, I was offered an endoscopy a few years back at my routine yearly appointment with a nearly qualified doctor (she was doing her finals at several different hospitals) and seemed right on the ball with everything to do with PBC. Fresh young minds and all that. Anyway I did not follow the appt up for the endoscopy because at the moment I am not too bad. She did mention about bleeds etc from veins. But I feel if all ok at present why go for these things. Go well.
I had an endoscopy the day after I had my liver biopsy. The endoscopy was painless as I had a sedative. The consultant said it was to check to see if I had any varices, and as itchyandscratcy said, they can be quite nasty if left undetected. As this was done routinely during diagnosis, i thought it was routine for everyone. Fortunately, he said I only has small ones and not to worry about them.
I would ask the consultant again at your next appointment. Again every consultant and hospital is different. There does not seem to be any protocol to follow with regards to diagnostic tests and this varies from hospital to hospital. Take care. x
Jtxx you're right every hospital and Consultant is different. I have had three endocscopies over the last 2-3 yrs. Like you, I opted for the sedative so didn't know anything about them. After all of them I was told I had a severe stomach infection, sorry, can't remember the name now - memory's shot. Had to take really heavy anti-biotics for three weeks. Don't know how it keeps coming back though. At last one in July 2011 I was told I also have a hiatus hernia. Just to add to my ever growing list. Still just have to keep going, nothing else for it. < (
