Discussions By Condition: Digestive conditions

To All With Urgent Abdominal Pain Esp. w/Negative Tests

Posted In: Digestive conditions 3 Replies
  • Posted By: pinkgirl
  • April 14, 2008
  • 06:10 PM

If you are able and have already had a complete workup especially if it is recent, (i.e., blood work, urinalysis, MRI, CT scan, colonoscopy, HIDA scan and other testing) and everything was negative then please find the nearest pancreatologist M.D NOT "just" a gastroenterologist or your primary care physician for further VERY specialized tests - diagnostic tests. I didn't find my Dr. or get a definitive diagnosis for almost 5 years.

But first as stated below:

*Disclaimer: I am not a doctor so anything I suggest is not a substitute for a doctor's advice, suggestions or recommendations. ALWAYS seek advice from a qualified medical professional or an MD.*

I have had at least 6 doctors and many were highly educated and most of them were specialists in gastroenterology. One was a Harvard educated gastroenterologist who never so much as palpated my abdomen never mind not ordering up blood work or examining me in any way but told me (with my husband present) after briefly looking at my records and he said I did not have pancreatitis (I was later diagnosed by a pancreatologist with chronic pancreatitis.) This was after having my gall bladder removed laparascopically where there were no stones or sludge or any physical abnormality w/the exception of what they called a "low ejection fraction rate" after doing a test called a HIDA scan. In other words it supposedly wasn't functioning although other doctors who later reviewed my records and saw the numbers used to justify the surgery said they would have looked into other biliary causes before removing the gall bladder.

In any case, I'm writing this very long post because for the most part the medical community while making great strides in heart disease and cancer are still in the Flinstone/Jurassic age when it comes to pancreatic illness. Not enough research and research means money so because of that and it's rarity people are suffering. And, though I am not a doctor I have seen many doctors and unless they are pancreatologists or gastroenterologists who stay up on biliary disease you will NOT get a diagnosis on any type of pancreatic illness w/the exception of one and a recurring version of that one.

The only ones that doctors will be at all aware of are acute pancreatitis and what they call recurrent acute pancreatitis. Both types are extremely painful flareups of the pancreas which left untreated or under medicated can cause organ failure and even death in it's severest form. Those types are where you are well between attacks and both show very high levels of pancreatic enzymes called amylase and lipase. However, many people especially women, can develop the chronic form of pancreatitis and especially women who have had their gallbladder removed laparascopically. But what do they do in this instance? They change the name! It is commonly referred to as Post Cholecystectomy (meaning gall bladder removal) Syndrome. Yes, sadly it is true.

So chronic pancreatitis is labeled w/the above name. Why? Because unless you are a pancreatologist or a very highly trained gastroenterologist they will not diagnose you with the chronic version of pancreatitis (meaning daily pain at a level somewhat lesser than the acute form) because they are only trained to look for the following: high levels of pancreatic enzymes (see above), and visible damage to the pancreas (visible on imaging studies) like dilated ducts, cysts, narrowed ducts, gall stones or other blockage problems. And many don't even look past high levels of pancreatic enzymes especially ER doctors.

The problem many of us face or faced prior to getting a pancreatologist is that the chronic form often doesn't cause the enzymes to get high even when you're having very severe pain so they'll treat the pain (after waiting those awful long hours at most city/small city hospital ERs) and send on your way until next time. And if you go too often before getting a good doctor they'll start thinking you are just a drug seeker.

Ok, this is getting too long so if, as I said above you've had a complete workup, blood and urine testing and all are negative even the imaging studies to facilitate a closer look at your abdominal system then please do not waste time as I did. And, remember what a doctor once told me EVERY disease starts at the cellular, microscopic level so you may have the disease and attacks long before any visible changes can be seen. And please keep in mind the the following:

1. get a pancreatologist not just a gastroenterologist. You may have to go to the nearest big city but don't let that stop you. It's sooo worth it!
2. go to the Johns Hopkins web site and print out what it says regarding how in chronic pancreatitis you will unlikely have high levels of pancreatic enzymes (amylase and lipase)
3. Keep it with you to show at the ER if need be although some will read it and dismiss it unless your doctor explains it to them
4. Make an appointment with a Pain Management Doctor if you have one in your area or at a Pain Management Clinic
5. Get a 2nd or 3rd opinion if anyone other than a pancreatologist thinks you need laparascopic gall bladder removal and bear in mind that before they did this surgery laparascopically they did it w/'open" surgery and I've never heard of a person that developed "Post Cholecystectomy Syndrome" after having "open" surgery. Yes, a longer recovery but unlikely will cause chronic pancreatitis meaning every day pain on narcotics and like me now bedridden after 5 years of this and possibly the rest of my life.
6. Join a support group online. If you want further info or need a support group if you highly suspect you do have some type of pancreatic illness. I belong to one on yahoo support groups and they've helped tremendously. I've learned more from them than any Dr. has told me.
7. Do research and read all you can. Knowledge is power and an informed patient is a good patient. If you're not happy w/a doctor get another one and don't wait years before getting a pancreatologist. I did not get a diagnosis until I went to see him after suffering for 5 years!
8. Look into celiac nerve blocks (they anesthetise the nerves where you feel pain unfortunately they don't last very long and the more you get them the less they help but worth trying esp. when done endoscopically under sedation)
9. This may be relevant later in the disease process but if everything isn't working like the nerve blocks, pain meds are barely working, etc. there ARE doctors who do Pancreatectomy (removal of the pancreas.) Don't let anyone other than a pancreatologist tell you you can't live w/o a pancreas as our family doctor recently said to my husband! Yes, you can end up a diabetic type I needing insulin but I'd do it despite that, in fact, I'm researching that now. I'd take insulin any day to get rid of this pain.

I hope this helps. Best wishes!

*Disclaimer: I am not a doctor so anything I suggest is not a substitute for a doctor's advice, suggestions or recommendations. ALWAYS seek advice from a qualified medical professional or an MD.*

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3 Replies:

  • I understand your pain and distress, but please reconsider becoming a type 1 diabetic carefully. It's far more than just taking shots. In the long term, you might not be rid of the pain at all. Read about neuropathy, kidney damage, blindness, leg ulcers, gastroparesis, thyroid problems, and potential loss of limb which can all be complications They will tell you the risk can be reduced with careful control of your diabetes. Type 1 diabetes can be very hard to control. I have had it since age 2. If you control it too tightly you can go into insulin shock(overdose) and even get brain damage or DIE. I went into insulin shock over 10 times in a single year. You would have to watch every mouthful of food for the rest of your life and possibly live on a low carb diet which might result in needing statins to control cholesterol. Travel is very difficult. Even bringing your syringes on an airplane can cause huge hassles. You would be at high risk for cardiac diseases and Raynaud's syndrome. It can be really painful if you get neuropathy, so painful in some cases you might have to be on morphine forever. You can also lose sensation in hands or feet. Read about the dental and gum disease problems due to sugar in your saliva. You would heal slowly and be considered immune compromised. Many medications would affect your condition and may not be advisable for diabetics. Some birth control pills can cause blood clot risk in diabetics. If you might want to have a baby, you would be high risk, your baby would be at high risk, and you would be much more likely to miscarry or need a c-section. If you need surgery, you would have more chance of infection and slower or even incomplete healing. You can develop hypoglycemia unawareness and be unable to drive because you might pass out on the road with NO warning and even kill others (I do not drive anymore because of this complication). If you lose consciousness due to diabetes at any point, you might not be able to renew a driver's license depending on where you live. There are literally hundreds of medical problems which have increased risk if you are a type 1 diabetic. The average lifespan of type 1 diabetics is significantly shorter than non diabetics. One type of bio-engineered insulin has recently been linked to cancer. Please please, read up on type 1 diabetes and complications before you decide. I would not wish it on anyone. We are not all as lucky as Halle Berry. You will see many uplifting stories about diabetes type 1. They are intended to inspire teens and give them courage not to SUICIDE. Which happens, by the way, fairly often. :(Don't get me wrong, my life to me is worth living, but I think if I had chosen this illness voluntarily, I would be regretting it now. I have been diagnosed with: hypoglycemia unawareness, severe gum disease, Raynaud's phenomenon, rosacea, diabetic necrobiosis/leg ulcers, and all but four of my teeth have fillings or crowns. I had several root canals last year alone. I was in the hospital with diabetic ketosis/ketoacidosis for 3 weeks once just because I caught a mild flu. About 2 weeks of that was IV feeding, which damaged my stomach and left me with GERD. I have vision problems, immune system weakness and am about to be tested for venous and arterial insufficiency and neuropathy. One of my doctors is thinks I have all three of those. When I get leg ulcers, they can literally take years to heal. I have several right now I have to test my blood glucose with a finger stick about 12 times a day including several times during the night. Insurance doesn't pay for that many tests, either. I have to do it to prevent insulin shock.Really seriously, talk to some longterm type 1 diabetics first. Visit a diabetic support group. I am really and deeply sorry you are in so much pain, but I don't think there is any guarantee diabetes won't just make that worse for you. I had a good period of time when my complications were mild, but the longer you live, the more it damages every system in your body unless you are both incredibly disciplined and incredibly lucky. Luck can run out and discipline is not always enough. Many employers these days will not hire a diabetic. That issue made a national news magazine and has been featured on television several times in the last 2 years.
    BesideMyself 41 Replies Flag this Response
  • I know you posted this forever ago, but I am in desperate need of some help. I have been in constant pain since March 2010. I had an ERCP with stent placement on March 24th with no relief. I have been in the hospital so much but I always get the run around. My levels are always normal so Im never taken seriously. In August I had 2 endoscopic ultrasounds with pain block. These both showed I have chronic Pancreatitis. I have had several ER visits because My pain is not under control however Im labeled as a drug seeker now so no ER in my city will treat me. Im currently not taking any pain meds. I was on the Fent. patch from March- Aug. I have been on oral dilaudid, morphine, lortabs, percocets, etc... I cannot keep pills down because Im constantly vomiting. I have lost 60 pounds. Recently I have suffered severe depression and due to this, My current Dr. will not treat me until I get help. I have to see 2 Psychiatrist, 2 Psychologist, go to group therapy, and see a counselor and therapist. ( This seems impossible considering most day, I hurt so bad I cant even get myself out of bed) Im also Bi-polar so he is holding this against me. I really need to find a new Dr. Please if you are still on here get a hold of me:(
    amberrenee 1 Replies
    • November 27, 2010
    • 02:00 PM
    • 0
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  • if u are vomiting costant u must go and demaned they take a scan of ya pancrus soz for spelling as u may have allredy read if serve vomiting is constant u must act straight the way as this could be life thrtning as the stories ive read never go urself tho call 999 they will then be the judge not the outhers exsplain that the pancrus could ierruted if u are at the stAGE of vottiming with blood there could be a chance of massive organ falliuer on more then one organ mostly kidnni and rember if the pain stops it could be a sign its has stopped working.i am sorry for spelling iam dyslxtic cant even spell that loll i hope u get better soon all my lovethis is my opion not a dignoseis i am not a doctor
    Anonymous 42789 Replies
    • December 21, 2010
    • 02:11 AM
    • 0
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