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
alex1992
Posted
Hi, as I just got the results from my elastase test, I thought I could give you a little update.
Results came back over> 500, which is not suggestive of EPI. However, stools are constantly the same, back and upper abdominal pain is still keeping me from functioning properly and all the other symptoms are not going away.
I'm currently on Budesonide, I will be patient, hopefully results will be positive for the inflammation in my terminal ileum.
I wonder if elastase levels can greatly vary depending on what you eat, the time/day of collection or any other factors. On the day I collected the sample, my stools seemed more regular (I was mostly drinking Ensure). Could it play in ?
Based on your experience, should I redo the test or ask for something else ? I'm still really not convinced with the results.
Alex
cal_79 alex1992
Posted
In relation to an autoimmune disorder, I still wonder if it's Sjogren's. Which is my own suspicion, since all your other tests haven't proven anything else.
Keep up the pressure on your doctors. In the UK, we don't have a lot of leeway to disprove our docs when they decide you don't have something. Unless we want to 'go private', which means spending a whole bunch of cash to pay for something our health service (that we already fund through our taxes) should have already provided.
Hence the reason I'm 41 and crippled and in a wheelchair for the rest of my life.
I would request immediate screening for autoimmune disorders.
Good luck, hon. Please stay in touch x
cal_79 alex1992
Posted
PS. It wasn't TMI at all, but your stools definitely meet the clinical parameters that accompany those of someone with pancreatitis.
cal_79 alex1992
Edited
Apologies, still catching up on stuff from past few days. Did you alert your pancreas specialist to the lumps under your tongue?
White lumps aren't what I'd expect to see with salivary gland stones, but they could be specific for oral candida. Which can happen if you're short of saliva...which can happen if your salivary glands are blocked. We keep coming back to the same place!
cal_79 alex1992
Edited
PPS. If your condition is autoimmune related, I would hope to see an improvement in your symptoms after a couple of weeks on the corticosteroids. Best wishes hon 😉
Psychdoc alex1992
Edited
God bless you on your journey, treatment and healing. I have chronic pancreatitis that started 16 years ago when I was pregnant. They found later I had a pancreatic divisum. Half of my pancreas was dead. I am now 50 and was forced to take a medical retirement from LA COUNTY department of mental health. I am a licensed psychologist. Get a good Gastroenterologist GI doc. I ended up having the huge Whipple surgery for pain management. Avoid alcohol, spicy, greasy and acidic food. Be your own best advocate. I wish you all the best.
Seanne
andrea64883 Psychdoc
Posted
Seanne
I am not sure if you will see this or if you are still in here. If yes i just wondered if you would be willing to share how your pancreatitis started during/post pregnancy.
I have never had any GI issues prior to my recent pregnancy. During my pregnancy i was overall well but i had really bad heartburn and strange back pain.
Baby was born 7 months ago and since that i have never been the same. Lost 2 stone, my left side back ache went from niggle to constant throbbing pain which gets worse when i eat. also get pain in left side and front. my stools are still brown but are bulky, massively greasy and almost like there is seeds in them which i guess is undigested food. weirdly i also have what feels like a swollen tongue.
i had CT scan and clear, bloods all clear but not had stools checked for elastase. having endoscopy in few weeks but not EUs. I don't think i have ever had any acute attacks. i am having ongoing thyroid checks.
alex1992
Posted
Hi I thought I could give some updates on my case. I've had two fecal elasatase tests over 500. If pancreatic enzymes are normal, what could cause the pale/yellowish bulky stools ?
I'm still having pain in my middle back and under my ribs. In the pas few days, it's been localized under my left ribs and I feel like it's shallow.
Would early CP cause loose and bulky stools even in it's beginning stage ? Could it be something else ?
Alex
james20803 alex1992
Posted
alex, If my journey with autoimmune pancreatitis has taught me anything, it is that pancreatitis can be a real chameleon of a disease, difficult to pin down and sometimes related to other problems such as inflammation and fibrosis of the salivary glands, and sometimes other body organs.
If you continue to show evidence of malabsorption with fatty stools etc., I would suggest insisting the docs try pancreatic replacement enzymes to gauge your response. They are apparently safe, albeit very expensive. If you are on the Canadian system, your cost would probably be a fraction of what we pay in the U.S.
Good luck, hang in, and keep us posted.
alex1992 james20803
Posted
Thanks James,
I'll definitely look into it. I've been taking Super Enzymes with Pancreatin from Now Supplements for the past 2 weeks. I haven't noticed any significant amelioration except that now my weight seems to have stabilized somehow a bit. Is it linked, really hard to tell.
Every capsule has a decent amount of protease (37 000 u) and amylase (37 000 u) but only 3000 u of lipase which I believe might not be enough to help break down fats properly.
I'll keep you guys posted as soon as I see my specialist.
Alex
justin98565 alex1992
Edited
Alex,
Have you found out anything. Im 6'2 was 225 and lost twenty pounds in two months. Mine started with what i thought was panic attacks. now i hurt under my ribs all the time and same stool issues. i still have a real good appetite but im miserable. i mean exactly the same symptoms from top to bottom. did it come on real quick out of know where as well?
alex1992 justin98565
Edited
No I haven't..I'm having an EUS on friday, hopefully I will get to know what's going on.
It did come out of no where and rapidly installed.
I'll post results as soon as I get the exam done.
justin98565 alex1992
Posted
Do you have a sore chest and lump feeling in your throat?
alex1992 justin98565
Posted
I have sore upper ribs and back. I had lump feeling in my throat in the first months but it cleared over time.
justin98565 alex1992
Edited
Okay,
Do you have headaches and like hangover type feeing?
Ive had several blood test and urine test done. All normal, I had a upper GI done, normal.
Had a stress test done and ekg. Normal.
Its very strange and annoying.
My doctor keeps saying stress and anxiety.
alex1992 justin98565
Posted
I do have have headaches/migraines and pain behind my ears. I don't feel any hangover type feeling but I have frequent dry mouth and tiredness.
Anxiety may amplify symptoms but I strongly doubt that it could be the cause to our problems. I also deal with anxiety and take meds for that, I just can't figure how anxiety