Undiagnosed for years
Posted , 6 users are following.
I have suffered with severe stomach pain for years but doctors never confirmed pancreatitis. I was told IBS, diverticulitis then gallstones. I just persevered and made changes to diet. Anyway I feel I have now lost all functionality of pancreas. 3 years ago I noticed weight loss and was tested for bowel disease. I had 3 bad attacks and now nothing for 6 months. I am having to go private for MRCP as doctors don't believe I have chronic pancreatitis az CT scan was normal. Help!
0 likes, 6 replies
Bravekhan gavin77939
Posted
I dont think a Ct Scan would miss anything wrong with the pancreas. its one of the best scans they have in today's world. Stomach pains can have several causes. How can you say you have lost all function of the pancreas? have you tested for Blood Lipase and Elestate? What are your blood sugars like? There is a stool test to check for fat which is called fat malabsorption too, one of the very clear symptoms of pancreatic problems.
Let the doctors work on it and stay away from self diagnosis.
All the best
gavin77939 Bravekhan
Posted
Hi, thanks for your thoughts. I have read a lot last 6 months! What I found out regards blood work. The levels only elevate during an attack. I was always getting blood tests a week after. I know the CT scan is excellent but it doesn't highlight functionality problems. I asked my gp about faecal elastase test and he said there was no such test! I went to private consultant a few weeks back and he has ordered gp to do the stool test. I'm awaiting results. I'll get MRCP scan with Secretin 2 weeks time.
yvonne86771 gavin77939
Posted
I was diagnosed after years with CP ! for ten years I was told IBS ,food poisoning lots of s**t,excuse the pun !
I was diagnosed and told I had a blockage! refered to Specialist who wouldn't have it thar I have a blockage because I'm not Yellow! ended up in hospital via A&E discharged more tests finally found 5 large stones and a mass of small ones that was August I was referred to Manchester Royal as Urgent ! this is December still nothing! I am on morphine slow release tablets and orimorphe PRN , I'm disgusted in my treatment and have complained, however, I now think thats why I'm being left @ because of my complaint!
I've give up I've returned to work Can't afford to be off but I'm working with no energy and in pain ! if anything happens to me I will hold these hospitals responsible!
gavin77939 yvonne86771
Posted
I think GPs go to diagnosis is IBS! I foolishly never questioned GPs. I ended up thinking I just had a dodgy stomach Id need to live with.
so you are waiting on gallbladder removal?
If blockage you should have been dealt with straightaway!
A work colleague went in with gallbladder pain and refused to move until they sorted it there and then They gave in and he was operated on next day!
Hopefully you get appointment shortly.
yvonne86771 gavin77939
Posted
I was diagnosed after years with CP ! for ten years I was told IBS ,food poisoning lots of s**t,excuse the pun !
I was diagnosed and told I had a blockage! refered to Specialist who wouldn't have it thar I have a blockage because I'm not Yellow! ended up in hospital via A&E discharged more tests finally found 5 large stones and a mass of small ones that was August I was referred to Manchester Royal as Urgent ! this is December still nothing! I am on morphine slow release tablets and orimorphe PRN , I'm disgusted in my treatment and have complained, however, I now think thats why I'm being left @ because of my complaint!
I've give up I've returned to work Can't afford to be off but I'm working with no energy and in pain ! if anything happens to me I will hold these hospitals responsible!
Reefsider gavin77939
Posted
I was diagnosed with Chronic Pancreatitis 4 years ago after a CT which showed calcifications. That was followed up with an EUS which confirmed the diagnosis. I too was previously diagnosed with IBS, many years before pancreatitis. Once I received CP diagnosis no-one ever mentioned IBS again, until last week when I had my regular visit with my pancreas specialist. I have malabsorption issues ongoing despite my best efforts regarding my diet which was always low fat prior anyway.
I was surprised during my malabsorption discussion that he said it's always difficult to juggle diet when one has IBS and pancreatitis. I was actually stunned to silence and didn't mention my surprise that the IBS diagnosis still existed, I thought it was a misdiagnosis when pancreatitis was still invisible to doc's.
So for all those saying they were diagnosed with IBS and think it was a mistake, perhaps it wasn't, perhaps you have IBS as well as pancreatitis.
Anyway thought I'd mention that. I've been going through IBS and Pancreatitis diets and some IBS foods don't work for pancreatitis so I'm modifying my diet again to see how I go.
I have a problem tolerating bread but love toast so put up with the ramifications after breakfast. I've been tested for gluten intolerance previously and was told I don't have that but upon reading about it I'm going to try gluten free and see if there's an improvement. I make my own bread so I don't eat any of the supermarket rubbish full of preservatives which would definitely trigger me.
Gavin, you may not have pancreatitis, IBS is ghastly too, diet modification is absolutely key. I agree with Bravekhan, don't get hung up on Dr Google. Besides even if diagnosed with pancreatitis you'll be in charge of your day to day management, it's not a matter of popping a pill for treatment really. Diet, not smoking, no alcohol, low fat, plenty of fluids. That's the way forward for most of us. Good luck and don't let your anxiety get the better of you.