I currently have upper adominal pain, all tests were negative, had an ercp & spintomony, still have pain, I went to one doc who told me pain could be because I am fat! I have 33 % body fat, overweight but morbidity obease. He thinks I have delayed gastric empting. which I do not think so, I have pain 20 minutes after eating and can last 1hour to 5 hours. My hurts mostly after eating fatty foods like nuts. and drinking alcohol seams to help with the pain.

My father cannot tolerate a feeding tube either. What is an indweilling port? TPN? How are you getting nutrients?

Have you looked up SMA syndrome it was featured on mystery diagnosis and it
Deals with a artery that affects lower bowel.
Look up, my thoughts and prayers are with you!

Have you looked up SMA syndrome it was featured on mystery diagnosis and it
Deals with a artery that affects lower bowel.
Look it up, my thoughts and prayers are with you!
Sorry posted originally above but meant for bumblebee. It's
Super rare and overlooked a lot.

HI jan11442 nice to meet a fellow RN. Struggling for years with IBS?? In constant pain now...CT clear...so frustrating to still be on constant pain...my life is being sucked away..

Did the ERCP's give you a pancreas attack? Were you diagnosed after EUS? What does it show if you have chronic pancreatitis?

Apparently the ERCP showed a slightly inflamed pancreas but the blood results indicated that it couldn’t be pancreatitis

Hi @carolel
I am a volunteer mentor, but have been on a sort of sabbatical for the summer months. This thread appears to have started about 6 years ago, so I am gonna respond to your recent post and if anyone else would like to ask questions, I will respond. I have carried a diagnosis of chronic pancreatitis since 2006. I was hospitalized with acute pancreatitis three times for a total of 30 days that year and had many tests, a gall bladder removal and scans later in the year showed calcification and scarring of my pancreas and a continuous level of pancreatic inflammation. The main reason I am replying to your post is that elevated pancreatic enzymes in the blood are not always present in pancreatitis. My pancreas had been damaged to the point that it was unable to produce enzymes in large enough quantities, after the third attack, to be revealed on a blood test. My youngest son either inherited the problem from me or we are just an unlucky family as he has had two acute attacks. With his most recent, his lipase was very elevated, but his amylase was only slightly above normal. My point is, there are other ways to evaluate your pancreas and that should be done. If it is not related to your pancreas, I would consider that a blessing, but I would not know which direction to point you in if it is not.
Blessings and better health,
Gary

Hey Gary,
Thank you for your reply. When I was first hospitalised one consultant diagnosed pancreatitis and I started treatment with IV antibiotics but after 1 day’s treatment I was seen by a surgical, either ho or registrar, who stopped all treatment. As a result of your reply, I am now wondering if the course of antibiotics had been completed, it might have at least treated the problem initially or completely. Believe it or not, I was a nurse for many years, initially in paediatrics and later in adult colo-rectal, but I have been medically retired since 2006 because of mental illness. Sometimes,recently, I have wondered if possibly, the medics won’t take me seriously because of this and maybe think I’m hysterical. I don’t recall any similar case in all my years of nursing.
My next port of call is a follow up with the gastroenterologist in September. I’ve only met her once but she did give me the impression, mistakenly or not I don’t know, that she would maybe be prepared to listen, but as she only has a clinic twice a year I have to wait six months to speak to her. The bloods she ordered were ‘normal ‘ but I haven’t had the results of the stool test.
At least, since speaking to some fellow sufferers on this site, I will be able to face her armed with plenty of pertinent questions so thank you again for sharing your experiences with me,

God bless,
Carole

Hi Carol @carolel and you are very welcome. I have some psych issues as well, but mine have become acute during my years of opioid treatment for the pain caused by pancreatitis. I have had GAD (general anxiety disorder) for most of my adult life, but the pain and treatment for it have led to major depressive disorder. I am getting some very good treatment with a new psychiatrist and some genetic testing she requested, so I am coping much better. The physical side of things is not good and it is just a result of the progression of the diseased pancreas. I battle pain, nausea, diabetes, and a weakened immune system daily and it is unlikely to improve. I am not whining as I am aware on a daily basis of the fact that my list of blessings is much longer than my problems, but I am realistic about those. I do much better by accepting what the disease does over time as opposed to always wanting a "cure".

Of course, you can not even get a diagnosis and that has to be incredibly frustrating. If your GI does not believe you have pancreatic issues, I would look for a high volume center for a pancreatic specialist. It would be very difficult for me to get to Mayo, but the Medical University Hospital in my state is a high volume center for things like ERCP's and pancreatic surgery. You really want someone who does the procedure many times in a given day or week as opposed to 6 per year. Your GI can probably point you in that direction. Please don't hesitate to ask any question and I will attempt to answer if I have experienced the situation.
You have my prayers for an answer, Gary