Need your thoughts please. Scared of possible CP
Posted , 35 users are following.
Hi, I'm a 27 yo male with a history of moderate to heavy drinking in my twenties.
My symptoms started 5 months ago. I noticed a progressive discomfort in my epigastrum. A couple of weeks later, my stools had changed to a light brown/yellowish with poorly digested particles. To this day, my stools are still the same, ranging from diarrhea to soft and sticky. There's also a strong and acidic smell.
About two months ago, I've started feeling the pain under my right ribs and eventually to my midback and between shoulder blades. Sometimes, It also appears to be a moving pain under my chest/ribcage/back. I can feel tenderness when I press on my thoracic discs. I also feel something inflamed or out of place around the liver. I can't bend over or tie my shoes without pain.
I have frequent indigestion, gas ,bloating and early satiety. My appetite has notably decreased. I am down 15 lbs over the past 3 months. The abdominal discomfort is present from the time I wake up until I go to bed at night with spikes of pain after meals.
My mouth is frequently dry and I have thick and beige/brown mucus like expectorations which taste and smell weird. A smell similar to bile or other digestive fluid.
I try to drink lots of water and herbal teas to stay well hydrated. My urines are sometimes darker and smellier than what I'm used to.
Over the past months, I had two episodes of acute and severe mid back pain (stabbing pain) that could be felt through my upper abdomen/ lower chest. Both attacks lasted around 45-60 minutes before gradually easing. The pain was accompanied with general unwellness, rapid heartbeats and confusion. I first thought they were back spasms/ contractions since I had been dealing with frequent back aches. I work in an office and tend to have generally poor posture. I now fear that they were mild acute pancreatitis.
I've consulted my family doctor and been to the ER multiple times which led to a quick consultation with a team of gastroenterologists. They've yet to find anything other than a light inflammation in my small bowel. I've had blood works, abdominal ultrasound, abdominal x-rays, CT scan, colonoscopy and gastroscopy. They all came back without abnormalities.
I'm having my elastase level checked tomorrow.
What are your thoughts on that? Any advice or recommendation? I'm scared and stressed out.
Thanks for your help, it will be much appreciated.
Alex
1 like, 72 replies
steven_86915 alex1992
Edited
Hi ive had chronic pancreatitis for 6 years and the way you explain your symtoms it sounds like CP . im on 2 facebook CP groups ones called chronic pancreatitis UK and Acute and chronic pancreatitis support these groups are really good for informatiom regarding CP
alex1992 steven_86915
Posted
Hi Steven,
How did you manage to get a diagnosis? Is there a gold standard test ?
Alex
steven_86915 alex1992
Posted
My CP was caused by alcohol . i got diagnosed with CT scan i dont understand why CT scan never showed anything . But all the symtoms you have was the same i had .
vedawms alex1992
Posted
EUS is the official gold standard test, followed closely by MRCP.
vedawms alex1992
Edited
Hello,
I would agree that it sounds like a classic case of chronic pancreatitis. Getting a pancreatic specialist is the best thing you can do. Ask if you can get an EUS or MRCP. Those should be able to get a closer look. Also, get your liver panels run, and check the urine for excess uric acid. Look also at vitamin deficiencies.
Work on your diet (see below). Cut out all alcohol and fatty foods. Cut out red meat or anything chunky (including raw vegetables). Stop smoking. Don't overexert yourself.
For pain, Tylenol and a heating pad really help.
If at any time you have uncontrolled pain or vomiting, get to the hospital quickly. Complications can occur and can quickly turn necrotic, septic, or even fatal. Do not underestimate it.
I'm in Living With Pancreatitis on Facebook if the other groups suggested aren't enough. It's a friendly group of people. You will get a LOT more information than a handful of us here can give. Good luck, and hang in there. I know it's frightening, but this disease can often be managed.
In the meantime, here are a few resources that you might find helpful:
https://www.healthcentral.com/article/question-about-soft-bland-diet
https://www.physio-pedia.com/Pancreatitis
https://emedicine.medscape.com/article/181364-overview
https://emedicine.medscape.com/article/181554-treatment#d12
alex1992 vedawms
Posted
Thanks for your answer.
They looked for malnutrition or deficiencies which were not found.
The back and shoulder blade pain is disabling. Today, I could feel it in my neck and collar bone.
I'm sticking to small and low fat meals with Boosts in between.
I was given dilaudid, PPI and bentyl to manage my symptoms. None of them seems to do any good right now.
I'm overwhelmed by all this.
Alex
ashtnren alex1992
Posted
Good luck! getting a diagnosis isnt always very easy. Ive been dealing with the same type pain for 3yrs (even had an EUS). I still havent officially been diagnosed with anything other than IBS and a borderline low functioning gallbladder (which they say wouldnt cause my issues).Im still pretty convinced its CP since the pain has been with me for so long. Id def ask for an EUS and maybe a HIDA since your pain is on the right side- could be gallblader?
alex1992 ashtnren
Posted
Thanks for your reply.
I was also told that at that point, they would have to consider IBS/ dyspepsia which I find ridiculous.
I had my elastase tested today, should get the results within 2-3 weeks.
I asked about my gallbladder but they quickly denied that possibility considering my ultrasound, CT and blood tests..
I will insist on having deeper investigation. I can't normally function with the frequent pain and discomfort. It's like I'm being pinched in the back and shoulder blade. I'm anxious and scared of having further attacks.
vedawms alex1992
Edited
If Dilaudid is not controlling your pain, you may want to go to the ER. You really need to insist on an EUS.
Also, ask for a referral to a pancreatic specialist and have your records (especially scans) sent off for review. The average gastroenterologist (even a team of them) often don't know what to look for.
This is the nationwide list of pancreatic centers in the US:
https://pancreasfoundation.org/npf-centers-info/pancreatitis-centers/
I'm afraid I don't know the doctors in the UK or AU. Where are you?
You may also want to cease eating for a week, but keep sipping on water and boost. See if that helps the pain go down. I have a feeling it won't do much, but try.
I'm sorry you are struggling right now. Getting an expert on board is critical, not just because you need relief, but because you don't want any more accidental damage. All damage is permanent and can seriously compromise your quality of life.
Hang in there, but please do go to the ER if you need to.
alex1992 vedawms
Edited
Thank you so much for your help.
I've been on many occasions, they always let me go after a few blood works and painkillers. Whenever I insist, I'm categorized as an anxious/hypochondriac and told it could be IBS since my age and current imaging and specimen results.
I used to weight a good 225 (6"0) and I'm now down to 205 and counting. I'm constipated one day and the very next, I have 2-3 concerning consecutive bowel movements. I can tell, most of the food is going right through me without being properly absorbed/digested.
When I try to stick to liquid and low residue diet, I get what I believe is hypoglycemia (confusion, cold hands/feet, fatigue, weakness and hands start to shake).
I have an appointment on friday, I will insist on having that EUS as quick as possible.
For your information, I live in Canada.
Alex
cal_79 alex1992
Posted
Hi. I am a 41 y/o female and have just had a bout of acute pancreatitis which required hospitalisation.
However, I had been suffering with exactly the same symptoms as you for over 3 years. I had a host of tests, like you, and was finally jogged on with an IBS diagnosis. As a registered nurse, I was never happy with this diagnosis - we all know our own bodies, and as a medical professional, I really expected to be taken seriously. Silly me.
It was only when the pancreatitis became acute and I was admitted to hospital that I saw a specialist. He informed me that my 3yr history of symptoms was due to chronic pancreatitis, but also said that the chronic form of the disease is incredibly hard to diagnose. Apparently there can be changes in the pancreas for a few years, but since they are so small to start with, they aren't picked up on a CT scan.
You could request amylase and lipase levels to be tested - since you mention foul smelling urine (the first symptom I noticed along with the pain), ask if you can do a 24 hour urine collection to be tested for amylase.
You mentioned foul tasting saliva - do you suffer with dry mouth? If so, are your salivary glands swollen? This can be another indicator.
Best of luck.
cal_79 alex1992
Posted
Also, have they taken a stool sample?
I notice you mention diarrhoea and loose, rancid stools, containing undigested food. You may have steatorrhea, which is caused by gastrointestinal malabsorption of fat due to a decrease in pancreatic enzymes. A stool sample is a quick and easy way for them to determine whether you are passing these fats in your bowel movements. It is certainly a earlier indicator than blood tests - just like CT can often fail to detect early changes to the pancreas, blood tests are often normal in the early stages of the disease.
It would definitely be worth appealing for a 24 hour urine collection for amylase levels and a stool analysis.
All the best 😃
alex1992 cal_79
Posted
Hi Cal_79,
I did have my elastaste tested yesterday. Results are expected to come in within 2-3 weeks.
I do have dry mouth with thick and foul tasting and smelling saliva. How d I know if my salivary glands are swollen ?
I've also had my urine tested a couple times and nothing has been picked up so far. However, I feel like my urines were clear when tested but I know for sure that something is abnormal color, smell, density wise.
At this point, what are the next tests I should ask for? I have an appointment on friday. I really wanted to ask for another imaging of the pancreas/ducts.
I was also told IBS by the lady GI in charge at the ER. I find it completely ridiculous. How can IBS make you lose now close to 20 lbs, make you feel unwell from morning to night and cause stabbing pains in the back. I'm no medical professional, but in medical litterature, such symptoms are generally not associated with IBS/Dyspepsia.
cal_79 alex1992
Edited
As I mentioned, I had the foul urine symptom for almost 3 yrs. Repeated urine screenings came back normal, however my consultant assured me that this would have happened, as urine samples are only sent to microbiology to text for the presence of UTI-causing bacteria. Not amylase, not the collection of urate crystals in my urine. My GP basically discounted all my symptoms to hypochondria.
That's why a 24-hr urine collection is performed, to test for the total amount of amylase that your kidneys are passing into your urine. It's only since I was treated for the acute pancreatitis that the urine symptoms have lessened, although not completely as I'm now aware that I'm living with chronic pancreatitis.
Your salivary glands are located near the angle of your jaw, in front of your ear, and below your jaw, kind of underneath your tongue. If you Google 'salivary gland location' and click on images, it will show you. It definitely sounds like you have something going on due to the foul taste you have. Once you have located them, have a feel around. Do they feel painful or swollen? If not sure, ask your GP or primary care provider to examine them at your next appointment.
I can't stress enough the importance of a stool screening. Ask them to check for steatorrhea as well as a routine bowel cancer screen. Please note, I used the word 'routine'. Don't panic, it just makes sense for them to do it at the same time.
The 24 hr urine collection and stool screening are definitely the two tests I would would push for, under the circumstances.
Just a thought - do you have any underlying health issues? Such as an autoimmune disorder? Or any other symptoms that you might feel are unrelated?
Also, if you don't mind, can you tell me your height and weight? Totally understand if you don't want to, though.
Take care hon 😁
alex1992 cal_79
Posted
I will definitely look it up and get back to you.
My stools are being tested for elastase levels. This should gives us as an idea of how functional my pancreas is. I heard fat testing is now uncommon due to complex testing and unspecific results.
They did test for bowel cancer and inflammatory diseases. Biopsies were negative but they did find light inflammation in my terminal ileum with small "nodules". According to the GI, I probably had a small viral infection. I know for sure that none of that is causing my actual symptoms.
I'm 6"0 and 205, down 20lbs over 2 months. I don't have any diagnosed health issues. However, overt the past 2 years, I've been dealing with excessive sweats (literally head to toe) and skin issues, mostly plaque psoriasis on my cheeks, scalp but also light spots on my elbows and chest. I have frequent jitters and confusion that I attribute to low blood sugars. I started having troubles with my vison but accordind to Drs, it's unrelated.. My health completely went downhill after going through psychological traumas in 2017. But sadly, as soon as I mention psychological issues, I'm being put aside with IBS, functional dyspepsia and somatization.
There are cases of immune diseases and diabetes on my father's side.
Unfortunately, I haven't treated my body well in my twenties, I had bad drinking and eating habits. I also was drinking tons of coffee at work but almost no water.
Alex
alex1992 cal_79
Posted
I just checked for my salivary glands and you were right. I have painful and white lumps under my tongue. One is specially bigger and whiter than the others.
I went to the optometrist weeks ago and she told me I had severe eye dryness which caused pain and burning sensation. I was prescribed synthetic drops.
My father has IBD, psoriasis covering his whole body. He suffers from severe joint pain and eyes inflammation.
His mother also has psoriasis, rhumatism, fibromyalgia and recurring gastritis that was categorized as potentially immune
I'm starting to wonder if my immune system could cause all this. They can't seem to find anything structural that could cause the pain and symptoms.
Alex