Pancreatitis Support Group

Chronic pancreatitis can present as episodes of acute inflammation in a previously injured pancreas, or as chronic damage with persistent pain or malabsorption. Patients with chronic pancreatitis can present with persistent abdominal pain or steatorrhea, as well as severe nausea. Some patients with chronic pancreatitis often look very sick, while others don't appear to be...

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Pancreas Issues...So Confused

ArielLondon
ArielLondon

Hi everyone, I hope you don't mind me joining the group, but after weeks of testing and testing I'm about to burst in to tears.


A little background...


6 weeks ago, after having lunch, I noticed I was unusually full. 8 hours later I was still full. I noticed under my lower left rib there was a pressure, like there was a ping pong ball inside me (I'd noticed it before over the past year, but the doc dismissed it). I then threw up.


Since then I haven't been able to eat more than what a toddler can eat. Fatty foods do not agree with me, and on the odd occasion I attempted something I threw up. I have no energy, my sleep is screwed. I'm mean to be learning to drive and planning my wedding, but I just have no focus at all.


My bloods showed I was low in vit D (now on a high does), my calcium and B12 are bordering low and serum folate is sky high. I'm not diabetic, nor pre diabetic.


I am overweight, but not massively (I have a stone to lose at least), I'm vegetarian, smoke very rarely (only if I have a drink) and drink once a month if that.


My endoscopy was clear, so ruled out ulcers and gastritis, but I had an ultrasound yesterday which identified that I had a fatty pancreas. I realise that this is a pancreatitis support group, but it seems that I can't find anything in terms of online support regarding this issue. Has anyone else gone through this/suffering with this? Could all the symptoms I've been suffering be because of this?


I cried yesterday as I am so frustrated. It is such a slow process and I just feel myself getting worse every day. I know there are more tests to come, but any guidance or advice on what I should be asking the doc or doing would be really appreciated.


Thanks so much, Claire

MacV
MacV
I wish you luck, I had all your symptoms but the tests I did showed that I have gastritis, colitis and infection on my gallbladder which was treated with antibiotics before I was discharged it was cleared. I was left with gastritis and colitis but the other doctor said it's pancreatitis I am confused because since January I am taking esomaprezole in the morning 30 minutes before i eat. The other doc prescribed for me spasmo-canulase which I was taking before meal (3× a day) I could feel the difference I don't whether its because they were suppressing my appetite. Right now I have the pain that goes through shoulder blade and palpitations. I've been going in and of different doctors since last year January so I am starting to lose hope if they will ever find out the problem with my body. As I said I wish you luck.
ArielLondon
ArielLondon
I'm sorry to hear that MacV - it's horrible isn't it! It's great that you had a diagnosis with some of your symptoms - it feels like these things take a long time to heal. I hope they get to the bottom of it for you x
nibbor
nibbor
Hey Miss Ariel,
So sorry to hear not only of your pain but also the long, difficult road to diagnosis. It sucks.

I have many of the same symptoms AND a fatty liver. As you probably know, fatty liver disease can cause fatigue, nausea, sweating, itchy eyes, etc. In fact, I just googled it to refresh my memory and I noticed that I have most of the symptoms, go figure.

I also have to lose weight altho not sure what a stone it. Unless it's a gall or kidney stone? Haha. I also noticed you said you're a vegetarian. Wikipedia mentions needed to have enough of the right proteins and good fats. Maybe you need to record your diet for a week or two and see how much of them you're really getting. Also, have you tried googling fatty liver?

The good news is that you can treat and even reverse this disease! Yay! Finally something that you can actually do on your own, eh? In fact, I'm going to renew my efforts today thanks to you.

Hope this day brings you some joy and relief. Take care, Robbin aka Nibbor (get it?)
ArielLondon
ArielLondon
Hey Robbin!! (Nibbor :)

I saw the doc yesterday and following my ultrasound seeing a fatty pancreas and my other symptoms (pain in back, sick/nausea when I eat fatty foods and oily stools) he's referring me to a specialist as he thinks I have a 'pancreatic condition'.

He said he was surprised to see that I have a fatty pancreas as all my other organs looked good, and no signs of a fatty liver.

Either way - I've got to wait up to 6 weeks to see the specialist, so all I can do is carry on as I am. Low fat meals and smoothies. I'm just ready to get a proper diagnosis and move on, whatever it is!

Thank you for your support and I hope your renewed efforts help!
x
kimghds
kimghds
Ariel I just saw your post and I thought.... OMG this is my perfect description of what's happened to me ! It was a late night getting home so I ate some cheese and crackers, had 2 glasses of wine with it... then a little bit later I had a brownie with a scoop of ice cream...felt really full...had that same exact ping pong ball feeling under my left rib cage so I went to bed, then woke up at 1am and started vomiting. It happened several times that night and the next day I laid low, mostly sleeping, and didn't eat again until the next day... Then the ping pong ball returned, off and on discomfort... comes and goes but usually after I eat and my portions have definitely cut back. I went to the ER for the discomfort after about a week of it and they did blood work... all normal... did an abdominal ultrasound, which showed all normal organs (spleen, gall bladder with no stones, kidneys, pancreas...all normal... liver showed "mild fatty" ) I went back to my primary care and he sent me to a Gastro Dr. he did an upper endoscopy and I was told mild gastritis otherwise all ok.... did a colonoscopy also, it was totally clean. My blood tests screened my pancreatic enzymes and they were normal, as were my liver enzymes... I've lost about 12 lbs in the past month, maybe due to stress of worrying about what this is ? I am so frustrated... going to go back to the Gastro Dr. now that the colonoscopy results are back and clean and ask him ....what do I do next ????

Please keep us posted on your progress as will I, we all need to share <3
ArielLondon
ArielLondon
Oh wow! yes! Very similar symptoms indeed!!! It was my other symptoms that made the doc refer me to a gastro specialist (which I'm seeing in June). My other symptoms are back pain, sickness and nausea after eating certain foods (mainly fatty foods), fullness and fatty stools.

Have you looked in to a gastritis diet? By eliminating certain things (booze, dairy, nightshades - potatoes, tomatoes, aubergines and chilli, caffeine) you can help relieve your tummy.

It's so frustrating isn't it? Seems never ending.

I hope you get answers soon x
Lolo123
Lolo123
Hi I have been going through similar issues. Ongoing terrible epigastric pain with very little relief. Crying so much and losing sleep. Going from doctor to doctor with no diagnosis. I have been on ppi's for over three years. The worst part of this is never knowing what a day will bring. I pray to God that we find help and proper treatment. Chronic pancreatitis is not an easy thing to live with. I have had an extensive work up 2 endoscopies, esophageal manometry, 24 he ph test numerous ct scans and ultrasound. Doctors are telling me that is all stress related but I know it is not. I feel your pain.
kimghds
kimghds
Did you have an endoscopic ultrasound ?
Lolo123
Lolo123
Hi Claire I to am planning my wedding and I am wondering if I will be there. I get worse every day. I am missing work now. In pain all the time. I unusual weird pain. No relief I can't sleep I am always so sick. Doctors are no help at all. Emergency room is a joke. They talk to me like I am crazy. Don't know what to do. The GI I HAD DUMPED ME. I am so scared. I had to run him down to do an endoscopy. I am very sad and scared
Lolo123
Lolo123
Hi Claire I to am planning my wedding and I am wondering if I will be there. I get worse every day. I am missing work now. In pain all the time. I unusual weird pain. No relief I can't sleep I am always so sick. Doctors are no help at all. Emergency room is a joke. They talk to me like I am crazy. Don't know what to do. The GI I HAD DUMPED ME. I am so scared. I had to run him down to do an endoscopy. I am very sad and scared
Lolo123
Lolo123
Hi kim,
They scheduled me for extended endoscopy
Lolo123
Lolo123
Hi kim,
They scheduled me for extended endoscopy. I asked about EUS SHE BELIEVES IS NOT CHRONIC PANCREATITIS.
kimghds
kimghds
Hi Lolo,
Please let me know how you make out, I am going back to see my GI Dr tomorrow, my endoscopy showed mild chronic gastritis but this pain/discomfort is driving me crazy and I want a definitive answer as to when it will improve and to be certain that it is not something with my pancreas also.
DoctorPerry
DoctorPerry
You need to go ahead and get the Endoscopic Ultrasound. You need to know if you have chronic pancreatitis. No other reliable diagnostic tool is available for early stage chronic pancreatitis.
kimghds
kimghds
Hi Lolo,
I had a CT scan with contrast this morning, waiting for the results... please let me know how you are doing as well.