Gastro discharged me and cancelled endoscopy - in pain and worried!

[strawberrymoon]

Hello,

I hope I've posted this in the right place. I'm looking for suggestions/advice on what to do next. I've been gluten free for 2 years (not diagnosed celiac}, soon followed many other problems with food, dairy, nightshades, eggs...the list is never ending. I've currently got a very limited list of foods that I can tolerate. I have pain on my right side just below my ribs, terrible bloating no matter what/how much I eat, at times I feel feel really ill and have a yellow complexion and also have undigested food in stool.

I had my first appointment with a gastroenterologist 2 months ago, he seemed to have made up his mind before I'd even walked in the room that my food problems were psychological.  He referred me for a ct colonoscopy and endoscopy just to rule a few things out, the ct scan results came back 'normal' apart from a hiatus hernia. Because of these results he's now discharged me and cancelled the endoscopy saying 'there's nothing wrong'. During the ct scan, just after they pumped the gas in, the area just below my ribs where I get pain anyway, was extremely painful -I felt sure something would show on the scan, just by going how much pain I was in.

I believe the pain and other symptoms are pancreas/gallbladder related and that I should have had the endoscopy. So now I'm left not knowing what to do or who to turn to, I've got an appointment with my GP to discuss things, but I'm unsure exactly what to say or whether I might get more help if I went private (I'm in the UK and the gastro I saw was on the NHS).

Any experience/advice suggestions greatly appreciated.

[trents]

I think your hunch about this being either problems with the gallbladder or pancreas is probably correct. If you are jaundiced that seems like a tip off to me of problems with inflammation in this area of the body. Please don't dilly dally in getting this looked into. These conditions can become life threatening. Do what you need to do, through NHS or apart from it. The gastro doc has dropped the ball here. Did he test your lipase levels? That is the primary test for pancreatitis.

[squirmingitch]

I agree that the gastro dropped the ball on you. If you have to go private, then go private. You need to get this figured out & soon or I am afraid you will end up in the ER very, very ill. 

[Jmg]

3 hours ago, strawberrymoon said:

Hello,

I hope I've posted this in the right place. I'm looking for suggestions/advice on what to do next. I've been gluten free for 2 years (not diagnosed celiac}, soon followed many other problems with food, dairy, nightshades, eggs...the list is never ending. I've currently got a very limited list of foods that I can tolerate. I have pain on my right side just below my ribs, terrible bloating no matter what/how much I eat, at times I feel feel really ill and have a yellow complexion and also have undigested food in stool.

I had my first appointment with a gastroenterologist 2 months ago, he seemed to have made up his mind before I'd even walked in the room that my food problems were psychological.  He referred me for a ct colonoscopy and endoscopy just to rule a few things out, the ct scan results came back 'normal' apart from a hiatus hernia. Because of these results he's now discharged me and cancelled the endoscopy saying 'there's nothing wrong'. During the ct scan, just after they pumped the gas in, the area just below my ribs where I get pain anyway, was extremely painful -I felt sure something would show on the scan, just by going how much pain I was in.

I believe the pain and other symptoms are pancreas/gallbladder related and that I should have had the endoscopy. So now I'm left not knowing what to do or who to turn to, I've got an appointment with my GP to discuss things, but I'm unsure exactly what to say or whether I might get more help if I went private (I'm in the UK and the gastro I saw was on the NHS).

Any experience/advice suggestions greatly appreciated.

NHS professionals are generally ok but their are also some dreadful ones. You sound like you've been unlucky. I'd be inclined to put something in writing regarding both your treatment and where you go from here. This could either be in a letter to the consultant with your GP copied in or, via your local hospital's complaints procedure: 

Open Original Shared Link

If needed get help drafting the letter. Keep it factual, concise and detail both your symptoms, the attitude of consultant and your concern that the failure to go through on the endoscopy may leave you withot a diagnosis or at risk. Don't make any medical claims yourself, just detail your concerns that you've been prematurely discharged, that you're still in pain, that you have no diagnosis and you have not been told that any conditions have been excluded. 

Be polite, but emphasise that you are unhappy with your treatment, would like a second opinion, would like this expedited as quickly as possible and you reserve any and all rights whilst making this polite request without prejudice.

When you see your GP give him or her a copy of the letter and explain your concern.  It will be up to them then to either seek another referral or alternative. But they will know from your letter that you mean business and won't be fobbed off.

Best of luck!  

 

[squirmingitch]

1 hour ago, Jmg said:

NHS professionals are generally ok but their are also some dreadful ones. You sound like you've been unlucky. I'd be inclined to put something in writing regarding both your treatment and where you go from here. This could either be in a letter to the consultant with your GP copied in or, via your local hospital's complaints procedure: 

Open Original Shared Link

If needed get help drafting the letter. Keep it factual, concise and detail both your symptoms, the attitude of consultant and your concern that the failure to go through on the endoscopy may leave you withot a diagnosis or at risk. Don't make any medical claims yourself, just detail your concerns that you've been prematurely discharged, that you're still in pain, that you have no diagnosis and you have not been told that any conditions have been excluded. 

Be polite, but emphasise that you are unhappy with your treatment, would like a second opinion, would like this expedited as quickly as possible and you reserve any and all rights whilst making this polite request without prejudice.

When you see your GP give him or her a copy of the letter and explain your concern.  It will be up to them then to either seek another referral or alternative. But they will know from your letter that you mean business and won't be fobbed off.

Best of luck!  

 

Super advice JMG!

[strawberrymoon]

Thanks for the replies you've been very helpful.

trents - the gastro didn't do any blood tests but my lipase levels were checked last year, I believe, and came back normal apparently, the only test he did was the CT scan. He said at the appointment back in January that the endoscopy was the most important one, so it's even more confusing as to why he's cancelled it.

squirmingitch - that's what I'm afraid of!

Jmg - absolutely brilliant advice thank you.  I had thought of writing a complaint letter but my version wouldn't have been as good as your advice and probably would have come across as quite angry.  I'm definitely going to ask for a second opinion even if I have to go private.

[trents]

I would push for a hidascan for gallbladder issues.

How long have the pain under the ribs, jaundice symptoms been going on? The whole two years?

[strawberrymoon]

I've had the pain for a number of years although it was mild to begin with and has got worse over the last year, the jaundice started last summer, it's on and off and I feel really ill when it happens.

I've not heard of that scan, I'll look into it.

[squirmingitch]

@strawberrymoon

Here's a link about a HIDA scan

Open Original Shared Link

[strawberrymoon]

On 17/03/2018 at 12:20 AM, squirmingitch said:

@strawberrymoon

Here's a link about a HIDA scan

Open Original Shared Link

Thanks for the link, I'll certainly ask about it.

[plumbago]

On 3/16/2018 at 10:06 AM, strawberrymoon said:

Hello,

I hope I've posted this in the right place. I'm looking for suggestions/advice on what to do next. I've been gluten free for 2 years (not diagnosed celiac}, soon followed many other problems with food, dairy, nightshades, eggs...the list is never ending. I've currently got a very limited list of foods that I can tolerate. I have pain on my right side just below my ribs, terrible bloating no matter what/how much I eat, at times I feel feel really ill and have a yellow complexion and also have undigested food in stool.

I had my first appointment with a gastroenterologist 2 months ago, he seemed to have made up his mind before I'd even walked in the room that my food problems were psychological.  He referred me for a ct colonoscopy and endoscopy just to rule a few things out, the ct scan results came back 'normal' apart from a hiatus hernia. Because of these results he's now discharged me and cancelled the endoscopy saying 'there's nothing wrong'. During the ct scan, just after they pumped the gas in, the area just below my ribs where I get pain anyway, was extremely painful -I felt sure something would show on the scan, just by going how much pain I was in.

I believe the pain and other symptoms are pancreas/gallbladder related and that I should have had the endoscopy. So now I'm left not knowing what to do or who to turn to, I've got an appointment with my GP to discuss things, but I'm unsure exactly what to say or whether I might get more help if I went private (I'm in the UK and the gastro I saw was on the NHS).

Any experience/advice suggestions greatly appreciated.

If you do end up getting an endoscopy, since you are now gluten free, there is a good chance that a diagnosis of celiac disease will not be made based on the procedure.

If they won't do an endoscopy, there's probably less of a chance they'd do a hepatobiliary (HIDA) scan, which I have just heard about. It is an imaging procedure used to diagnose problems of the liver, gallbladder and bile ducts. Here's a link to learn more about it here:

Open Original Shared Link

A HIDA scan is most often done to evaluate your gallbladder. It's also used to look at the bile-excreting function of your liver and to track the flow of bile from your liver into your small intestine. A HIDA scan is often used with X-ray and ultrasound. Tell your doctor if there's a chance you could be pregnant or if you're breast-feeding.

When you were describing your symptoms, I first thought of NAFLD (non-alcoholic fatty liver disease), mostly because of the swelling and what sounds like jaundice. But obviously I don't know for sure.

Cholecystitis often manifests as an intolerance to fatty foods, nausea, vomiting, pain in upper right quadrant, radiates to back, usually right scapula. Pain! Frequent belching and indigestion. There are different levels of pain depending what’s going on. Increased discomfort after eating fats. Flatus. Chronic cholecystits may have jaundice, dark urine and clay-colored stools. Diagnostic tests include: gallbladder ultrasound for stones or calculi. CT will also show stones. Lab work – bilirubin will be increased many times. ERCP – endoscopic exam (Endoscopic Retrograde Cholangio-Pancreatography).

Lab tests for gallstones – increased alk phos, ALT, AST both increased; conjugated bilirubin increased; unconjugated increased; prothrombin increased.

To nutshell it: find another doctor!

Plumbago

 

 

[strawberrymoon]

On 3/20/2018 at 12:02 PM, plumbago said:

If you do end up getting an endoscopy, since you are now gluten free, there is a good chance that a diagnosis of celiac disease will not be made based on the procedure.

If they won't do an endoscopy, there's probably less of a chance they'd do a hepatobiliary (HIDA) scan, which I have just heard about. It is an imaging procedure used to diagnose problems of the liver, gallbladder and bile ducts. Here's a link to learn more about it here:

Open Original Shared Link

A HIDA scan is most often done to evaluate your gallbladder. It's also used to look at the bile-excreting function of your liver and to track the flow of bile from your liver into your small intestine. A HIDA scan is often used with X-ray and ultrasound. Tell your doctor if there's a chance you could be pregnant or if you're breast-feeding.

When you were describing your symptoms, I first thought of NAFLD (non-alcoholic fatty liver disease), mostly because of the swelling and what sounds like jaundice. But obviously I don't know for sure.

Cholecystitis often manifests as an intolerance to fatty foods, nausea, vomiting, pain in upper right quadrant, radiates to back, usually right scapula. Pain! Frequent belching and indigestion. There are different levels of pain depending what’s going on. Increased discomfort after eating fats. Flatus. Chronic cholecystits may have jaundice, dark urine and clay-colored stools. Diagnostic tests include: gallbladder ultrasound for stones or calculi. CT will also show stones. Lab work – bilirubin will be increased many times. ERCP – endoscopic exam (Endoscopic Retrograde Cholangio-Pancreatography).

Lab tests for gallstones – increased alk phos, ALT, AST both increased; conjugated bilirubin increased; unconjugated increased; prothrombin increased.

To nutshell it: find another doctor!

Plumbago

Thanks for this, it's very interesting.

 

Thanks to the advice on here, I wrote to the consultant and had an endoscopy within 2 days - although they couldn't complete it because I panicked and pulled the tube out, I'll be having another under general anesthetic at some point.  They noted undefined abnormalities in my esophagus, opening to my stomach and stomach itself, duodenum 1 and 2 looked normal and 2 biopsy's were taken - that's as far as they got.

Today I had an abdominal ultrasound and everything appeared normal aside from some gallbladder polyps, I was told these wouldn't be causing my symptoms and they'll recheck them in a year to make sure they haven't grown. But according to this link the polyps could be causing all my symptoms including the food intolerances;

Open Original Shared Link

If there's anyone with any knowledge/experience of gallbladder polyps and symptoms I'd really like some more info in case I need to convince the consultant that it may all be down to my gallbladder?  It all seems to fit now I've read about it.

On 3/20/2018 at 12:02 PM, plumbago said:

 

 

 

[icelandgirl]

Hi Strawberry,

I had gallbladder polyps.  I was diagnosed with them in the same month as celiac, as my Dr had ordered an abdominal ultrasound.  My gallbladder was filled with polyps and the recommendation was to remove it, which happened about 2 weeks after my celiac diagnosis.  Mine were all cholesterol polyps.  Thats about all I know.  My life was a blur at the time.  I did not have right sided pain at the time, it was left sided, along with terrible D, bloating, etc.  Since I went gluten free just before, I have no idea how having the gallbladder out affected anything.

I have since been diagnosed with high cholesterol though, despite a healthy diet and am wondering if this somehow is related to the cholesterol polyps.

I do hope you get all this figured out and feel better soon!

Hugs!

[lisas11lisa]

Sounds like your Gall bladder to me..ask for a hydascan to see how it's functioning..I had no gallstones on sonogram..but only functioning at 18%..Dont wait...