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
vedawms alex1992
Posted
I don't have much to add, but I'm really looking forward to what cal_79 has to add.
I have salivary gland issues, too, which may indicate Szogren's. It's possible you have that, too. but it sounds like you may instead have an infection causing white spots.
I just wanted to check in to let you know that I was thinking about you this morning.
alex1992 vedawms
Posted
On the CT scan, they found inflammation and thickened wall in my ileum. With the colonoscopy, they found nodes that were sent for lab tests. The GI told me it was unusual and didn't look like cancer at all.
I've looked closer and it's not an infection, it looks like swollen little glands. I have 6-7 small lumps right under the base of my tongue.
Do you think this could have anything to do with Sjogren or any other immune disease?
If it's not too much to ask, what kind on salivary glands issues do you have ? What are your symptoms?
vedawms alex1992
Edited
The floor of my mouth on the right had an itchy bump. Eventually, it became quite painful, almost like swallowing a lemon, but worse. The side of my face swelled up to the size of an orange. Basically, I had stones stuck in my salivary glands.
Occasionally, I could massage the stones out, but they... (see next response)...
vedawms alex1992
Posted
Sorry, that message saved unexpectedly...
The stones always came back, even with the massaging. I visited an ENT (Ear, Nose, Throat) and had surgery to remove the salivary glands on the right side of my face. I don't remember white bumps (it was 25 years ago).
I also have stones in my Bartholin's glands (lady parts), and needed surgery for that, too.
From what I have read, duct issues can also extend to the pancreas. I haven't had issues with mine, as all of my problems have been tail-related.
gordie16 alex1992
Posted
stress can cause problems as well, my symptoms are the same I would ask if you have pancreaites if I was you don't worry there are ways round these problems. I have not touched alcohol for 2 years under control at the moment with tablets
alex1992 gordie16
Posted
Hi Gordie,
Did you get a diagnosis ?
Also how do you manage the pain and symptoms?
What kind of tablets?
Alex
cal_79 alex1992
Edited
Hi, sorry for absence yesterday, had a flare up of my Rheumatoid Arthritis AND the CP at the same time. Not fun.
I wonder if you have autoimmune pancreatitis. Your collective symptoms sound very much like something called Sjogren's, an autoimmune disorder. I know you have some of these symptoms, but I'll list what they would look for:
You may not have all those symptoms, but since you seem to fit a fair few of those criteria, I would absolutely press your primary care provider to carry out an autoimmune screening. This can be done by a simple blood test.
I really hope you're keeping well - I know what a struggle it is when they just won't listen to you. In addition to being jogged on for a few years while I suffered with undiagnosed CP, prior to that I fought a 5 yr battle with my general practitioner for a referral to a rheumatologist. He kept telling me my joint pain and swelling was 'all in my head' and actually diagnosed conversion disorder...without ever laying a hand on me to examine me physically. All because I have bipolar disorder. After 5 years of having stronger and stronger opiates thrown at me (I ended up on Fentanyl) I finally developed septic arthritis and was hospitalised. After they had treated the sepsis, which almost killed me, I was diagnosed with Rheumatoid Arthritis. However, because I'd had it for so long without treatment (plus the added septic arthritis damage to my right knee), I now can only stand for a limited amount of time and am confined to a motorised wheelchair. We have a great public health system in this country, but once your GP labels you a nutter, that goes onto your central notes and can be viewed by anyone who treats you. Once that happens, fighting to get a diagnosis becomes almost impossible.
I hope things are better in Canada and you do get a diagnosis soon. I feel for you, hon. Stay in touch & take care x
alex1992 cal_79
Posted
Hi, I wish you feel better today. I'm having thoughts for you.
I'm at the hospital at the moment, I had a second CT scan, waiting for the results.
The doctors are putting a lot of emphasis on my small intestine which is not leading anywhere right now. I'm being thrown from one GI to another while I struggle with the back pain and stools. I feel like being pinched in the middle of the back and shoulder blades.
I know it's a bit too much information but I've joined pictures of recent stools. Have you experienced anything similar ?
alex1992
Posted
alex1992
Posted
vedawms alex1992
Posted
Hi Alex, just a quick note that my stools resemble yours. I have EPI (exocrine pancreatic insufficiency). My doctor put me on CREON to help with maldigestion. Ask for a fecal elastase test and for a prescription for CREON or ZenPep. They probably will not change your pain.
Have they done an EUS yet?
Thinking good thoughts...
alex1992 vedawms
Edited
Hi, I just got out of my appointment with the regional pancreas specialist, from what I've read he's had many specific trainings and international experience in pancreas and advanced pancreatic interventions. He is still not convinced it's pancreas related.. He put me on corticosteroids for 3 weeks after what I have to see him again.
I did the elastase test, we're now waiting for the results. He told me that if it comes back low, he will perform a EUS in the upcoming weeks.
He seems convinced that all my issues are potentially caused by an autoimmune condition which has not been identified yet.
Alex
vedawms alex1992
Posted
It's a good start! I just did genetic testing after being sick for 14 years. It was eye-opening.
Don't give up looking for answers, and best of luck!! Sounds like you have a good specialist on your side!
pankywoz vedawms
Posted
what were your results from genetic testing?
vedawms pankywoz
Edited
I have a heterozygous CFTR mutation. I don't have the exact mutation handy, but it doesn't matter much.
CFTR mutations are best known for causing pancreatitis. I also discovered these two articles, one of which suggests a 44% risk of several different gastric cancers, YIKES!! Before you panic like I did, I don't think the second study has been peer reviewed yet, and so the results might be sketchy (I hope so). These are both 2020 studies.
https://www.pnas.org/content/117/3/1621 (Figure 3)
https://www.mdpi.com/1422-0067/21/8/2891/htm (Sections 1.4, 1.5, and 1.6).
I am still waiting to hear from my geneticist's superior to see if I should be alarmed. Thanks for reminding me to reach out.
It's worth mentioning that my insurance refused to cover the testing (a saliva test), but supposedly the company I used is good about covering the majority of the cost if insurance does not. I'm waiting for a bill.
My mom was diagnosed with bowel and liver cancer two months ago, and possibly pancreatic cancer. And yesterday I found a painful lump in my groin lymph node, which is a possible sign of cancer. (The pain appears to have been suppressed by Amitriptyline, and I've just reduced my dosage, which is why I noticed it.) I've had enlarged gastrohepatic lymphs (not nodes) on my scans for a while, too. (Gastrohepatic is the "jumping-off place" for cancer from one organ to another.) I was told it was nothing to worry about by a Physician's Assistant I do not trust.
I'm just waiting for now, because my doctors think I'm being paranoid. That's only partially true.
Hope this helps.