How to deal with family during tests
Posted , 7 users are following.
Hi everyone, I am a 41 man.
2018 is being a year full of happenings.
At the beginning of the year, abdominal discomfort led me to find out I had gallstones and - almost by accident and thanks to a very scrupulous doctor - a 4cm mass in my colon - which fortunately was benign. Very rare for a 41!
But apparently I am going thorough more challenges.
Early in the summer, I started having occasional back pain. Nothing serious, just annoying, and it would come and go. During August, I had a mild pain on my upper-left abdomen, that lasted a couple of days. I dismissed that as not significant.
But then I noticed something strange in my stool.
After the colonoscopy, I took the habit to check my stool, and saw that at times they were very greasy, and that there was like an oily film on the toilet water.
4 weeks ago the pain in my back started to become more frequent, and intense, eventually waking me up at night. A nasty burning feeling between my shoulder blades.
My doctors said it could be something related to my pancreas and ordered blood tests; according to the results, he will evaluate if an endo-scan is going to be necessary.
I am now waiting for the blood test result.
I do not know how to deal with this, and I feel alone. My wife is very worried - as I am - that I might have PC.
I struggle to keep focus at work, mainly because in the recent days my back pain affects me during the day too and reminds me that there is something wrong.
My sleep is becoming poor as I wake up regularly at 3am with that burning pain between my shoulder blades, that seems to move around my spine according to the position I take in bed.
I have not said anything to my parents because I don’t want them to worry for (maybe) nothing, but I am not sure that this is fair.
What do you suggest? Should I talk to them now?
I'm also asking myself if I should speed up the process and ask my doctor to sign me for an endo-scan or CT straight away.
Thank you
0 likes, 25 replies
kiwiipics ugo16585
Posted
I have had digestive issues since 2004, and I've have multiple surgeries over the years. The common theme over the last 5 years has been back pain, shoulder pain , pale greasy stools, abdominal pain, alternating constipation and loose stools with occasional blood.
I've reported this on a regular basis due to the NHS (UK) telling us to tell the Dr if anything lastslasts for more than a few weeks.... this has been getting worse over the last 2 years.
This year I have been on the NHS 2 week wait referral system for suspected Oesophageal and Tongue cancer. I've had 4 OGDs (2 with Ultrasound) and 14 biopsies taken. The ultrasound also checked out the Pancreas. I have enlarged Lymphatic tissue at the base of my tongue, and enlarged Paraoesophageal and Para Aortic lymph nodes..... all show benign, but my Pancreatic symptoms continue.
Push your Drs for an OGD with Ultrasound, as pacreatic issuesissues are slow to show their true nature .... they take years.
ugo16585
Posted
Thank you kiwiipics.
I am sorry to hear that you have been going through tests and surgeries for many years.
I had a OGD in June which showed everything clean.
The OGD with ultrasound is exactly what I meant by endo-scan.
May I ask you if you ever have tested for fecal fats and elastase?
May I also ask you how old are you and how do you deal with these issues with your family?
Thank you.
heather38380 ugo16585
Posted
when I had biopsies taken for my suspected melanoma i told all my family members and it helped because they were there for me throughout the whole thing. luckily it came back as just a mole but it was a very scary place to be in and i was glad i was not alone.
Shortie79 ugo16585
Posted
The best noninvasive test to look at the pancreas without causing a potential attack is a MRCP. It took the doctors over a year to diagnose me and I was born with a pancreas condition called Pancreas Divisium. The pancreas is the hardest organ to diagnose due to its location. I had an ultrasound, regular endoscopy and blood work all come back normal. It wasn't until a CT Enterography showed atrophy of my pancreas. After the CT the MRCP was ordered and caught the two pancreatic ducts (rare condition where you're born with two ducts that never fuse together and can cause chronic pancreatitis). Due to my age (at that time I was 37) the doctors were dismissing the chance I could have CP because I'm so young, and my GI specialist thought my symptoms were IBS related. I was waking up in the middle of the night vomiting, always nauseous, loss 50 pounds in a matter of months, pain after eating, bloating, pale/clay stools, debilitating pain (I was already on pain meds for another medical condition which didn't touch the pancreas pain), itching, hair loss, acid reflux and more symptoms. I requested to see a pancreas specialist. Once I saw the pancreas specialist he performed an ERCP and diagnosed my CP. He also advised me it's not likely for someone my age to get CP or PC unless you have a family history or pancreas cancer, cystic fibrosis or Pancreas Divisium. It's very rare to get PC if you're under 50. Even CP is not common in younger people, it's common amongst the elderly because it takes years upon years to develop into chronic. In my case, I have undergone all treatments possible but due to my two ducts, they get clogged and cause constant attacks. Next month I have my consultation to have my pancreas removed. You can live without a pancreas nowadays. I will be dependent upon digestive enzymes and insulin but I will live a semi normal life. I wouldn't start thinking the worse because you're young. Start a low fat/sugar lifestyle and speak with your doctor about your concerns. I will tell you, not every GI is educated in the pancreas, so make sure your doctor knows their stuff.
ugo16585 Shortie79
Posted
Thank you Shortie, I have a question for you.
Was your pain so intense from the beginning, or did it started as mild pain?
Shortie79 ugo16585
Posted
To be honest it was very intense. I was given a different pain medication for my nerve disease called Complex Regional Pain Syndrome (makes your nerves misfire and contracts your muscles). When I was on the newer medication, that's when my symptoms really started. I started vomiting (I assumed it was the new medication and therefore I stopped it) however, I got worse not better. I started noticing the pain after eating and it was extremely intense, and the abdominal pain was so bad, it made me scared to eat. I slowly developed the other symptoms as time progressed. However, I have a history of my intestines adhering together and due to my nerve disease everything gets blamed on that. Luckily for me, I know my body and have a very good relationship with my primary doctor. When I initially described my pain she tested me for pancreatitis but my blood never showed anything. The only thing that would elevate would be my AST/ALT enzymes. Since I was already on pain meds and my doctor knows my pain level, she knew I wouldn't be complaining of pain if it weren't so severe. I have to see my primary every month due to my nerve disease and she also noticed the drastic weight loss (I'm short, so 50 pounds in a matter of months is a lot when you're mostly bedridden). Throughout my life I have been in/out of the hospital and have had probably over 30 surgeries but none of my blood ever showed pancreas issues and now looking back 70% of my hospital stays my AST/ALT enzymes were elevated, so I was probably having an attack and didn't know it. Normally people with Pancreas Divisum don't even know they have it, it doesn't usually cause symptoms except the lucky few of us that it chooses. PD is rare, only 5-10% of the population are born with it and is usually discovered at autopsy. CP takes years upon years to develop, the doctors were dismissing me due to my age because I'm quite young to have it. My chances for PC are greater but I don't allow anything medical to defy my life. Life is short, enjoy and live it while you can. Don't stress or worry about the things out of your control … what good does that do you? You stated you had gallstones, did they remove your gallbladder? Sometimes when the gallbladder is removed they accidently nic the Sphincter of Oddi SOD. It can mimic symptoms of pancreatitis. I would keep track of all your symptoms, pain, foods, stool, sleep pattern, etc., it might help the doctors figure stuff out, it helped with me. I hope you feel better soon.
Psychdoc ugo16585
Posted
Please don't get ahead of yourself. Get a gastroenterologist and have your pancreas checked. I have birth defect in my pancreas called a divisum. Chronic pancreatitis sucks, but i would believe that your doctors would have already checked for pancreatic cancer. You are in my prayers.
ugo16585 Psychdoc
Posted
Thank you Psychdoc. Bloodwork came back almost normal. Amylase and Lipase are OK. My blood phosphorus levels are slightly lower than normal (2.50 mg/dl where 2.60 is the lower limit) and D Vitamin is below normal level (23.70 ng/ml being the lower limit 30).
Still waiting for the fecal elastase that will be ready next week.
Ultrasound booked for wed. Then we'll go with the endoscopic ultrasound.
In the meanwhile, I have noticed that taking alcohol triggers my back pain. I am pretty sure of it because normally I only drink (moderatly) during week-ends. I had both beer and wine on saturday and sunday, and last night I started having back pain. And my stool started being oily and soft after a few days of normal bowel movements, too.
ugo16585
Posted
Hi, following my message of yesterday: today I have received my fecal test of elastase.
Elastase is very low and the document states "severe pancreatic insufficiency".
Today I have also performed an ultrasound scan. The pancreas looked ok. They have found a small polyp in my gallbladder.
As the elastase is low, next step will likely be the endoscopic ultrasound.
I will keep you posted.
Shortie79 ugo16585
Posted
If your GI doctor doesn't specialize in the pancreas, I would recommend looking for one. In my experience my pancreas specialist put me on enzymes following the fecal test. If I recall correctly, it's called EPI. The way it was explained to me was my pancreas isn't producing the correct amount of enzymes that aid in digestion. If food isn't digested in a normal amount of time, it can cause symptoms. It's better to eat six small meals rather than three big ones, it aids in digestion. The gallbladder can cause horrible pain as well. I hope you find answers soon.
ugo16585 Shortie79
Posted
Hi Shortie, thank you.
That is exactly what I did.
I have identified a pancreas specialist. The initial appointment was for november the 15th, but then someone cancelled his appointment so I am going today in the afternoon.
ugo16585 Shortie79
Posted
I have forgotten to ask: what fecal test did you have?
Now that I think about it, last year, around this part of the year, I started having a lot of gas. Believe me A LOT of gas. I mean farting every second minute. That lasted for a couple of months, that gradually eased. Then eventually I have days of intense gas.
Maybe that is caused by the food not digested properly.
Shortie79 ugo16585
Posted
To be honest, my fecal test was over a year ago, I don't remember the name of it, I thought it was called an EPI test or maybe that's what the condition is called. However, there's also a condition called gastroparesis where you don't digest food in a normal amount of time either which isn't associated with your pancreas but can mimic pancreatic symptoms. I have both but the gastroparesis was caused from being on another medication. You can ask your GI for a fecal test, to test for malabsorbtion but if you're not experiencing a lot of weight loss, the GI may be hesitant. I had to fight for further testing because my GI thought my symptoms were IBS related.
Shortie79 ugo16585
Posted
You're very lucky, it takes forever to get into my pancreas specialist. I normally have to wait two months just for a follow up. I wish you the best of luck and hope you find the answers you need. Good luck.
ugo16585 Shortie79
Posted
Hi Shortie, met the specialist on friday.
I told him my story. He has ordered a few tests, including blood tests, a CT scan of the abdomen and an endoscopic scan that is done through a pill you eat and takes photos of all your digestive system (guess how you take it back...).
He suspects that there might be a polyp in the ducts of my pancreas that can't be seen by the regular ultrasound I had.
He suspects it becuase of the polyp of 4cm found in my colon a few months ago - a very unusual finding in someone my age. He thinks that I might develop polyps easily.
The CT scan is booked for the 7th.
I will let you know what happens.
Shortie79 ugo16585
Posted
The pill will tell the doctors how long it takes you to digest food. It's pretty amazing what technology can do nowadays. I am glad you're getting tests. I wouldn't count too much on blood work, sometimes it doesn't show pancreas issues, if you're already chronic.