Mike Brown,
I read over your post again because I knew something sounded familiar concerning your list of symptoms, that I meant to address. I would add the tight chest and constantly feeling full or what could be gastritis as well as strong indicators of a gallbladder attack.
Along with CF comes Small Duct Disease for nearly all of us. Ducts make up a lot of the body's fluid transport but I am thinking of your liver/gallbladder and pancreas. It also means extra thick and sticky mucus which is produced all throughout the GI tract. When my late diagnosis was made, it first was with the good Dr. Freedman. After years of some high powered doctors, Univiersity of Colorado, Mayo Clinic and such telling me my pancreas was fine, a simple and older than me pancreatic function test confirmed my pancreatitis. In defense of the doctors, they consistently relied on the Gold Standard, an abdominal CT.
I apparently still produce enzymes but only enough to keep me in intractable pain. I get my digestion from a combination of enzymes. If you are transitioning into pancreatic insufficiency, you may be having pancreatitis. Pancreatic pain and most of gallbladder pain is referred to some other part of the body. Upper right quadrant abdominal pain can be either gallbladder or pancreatic but gallbladder pain is like an epic case of heartburn, heart attacks and gallbladder attacks are similar enough that I went to the ER with a very real concern that I was having a heart attack. That was the first time I was aware my gallbladder was packed with stones. The surgeon told me from the layers of scars from previous attacks I had possibly dozens of attacks over several years. I had the same PCP for maybe sixteen years and was as flabbergasted as me. It amazes me that we didn't look at the pancreas before then.
The pancreas and liver/gallbladder refers pain to the back, most often between the shoulder blades. Boys and girls develop differently in the womb such that referred pain presents in slightly different places. The heart develops from a bud of cells along the future spine in girls and boy's hearts are pulled out of the left shoulder/arm bud, for practical purposes. Heart attacks are often indicated by referred pain in the left arm and shoulder, in men. Before women smoked and took the Pill, they categorically didn't have heart attacks. A lot of women were misdiagnosed at a time when seconds mattered, because all doctors were men and the back pain was not recognized as angina. In fact they made absurd errors like osteoporosis and gallbladder attacks when heart muscle was dying.
The referred pain of the liver, pancreas and gallbladder maybe upper right abdominal quadrant and right between the shoulder blades or scapulas. Lung pain is also referred to the mid thoracic spinal region but many people have pain referring to the entire region around and under the scapulas.
With a diagnosis of gastroperesis, there should be reason behind it. Usually it is a malfunction of the sympathetic nervous system or the Vagus nerve in other words. The whole issue of the gut and the Vagus nerve has had some wild medicine thrown at it. In my father's day it was tranquilizers like vallium and quasi narcotics like paragoric mixed with bismuth. The next generation got their Vagus nerve cut, something that more than one doctor wanted me to try. The denervation or severing major nerve branches is something you will always find a surgeon willing to do for chronic kidney pain or IBS, Crone's disease. I have had an equal number of doctors warn me to never allow denervation to be done, for any reason. The reality is very few denervations are ultimately for the better. You never feel the pain but that also means you may die of sepsis due to an infection you will never feel developing.
Ugh, that sour stomach from food that isn't going anywhere. It is horrible but I still wonder why you have it. If enzymes are making life far more painful and exasserbating your gastoP, you'd want to know the condition of you upper GI tract, especially your stomach and duodenum. Food stays in the stomach long enough to be reduced by stomach acid, the little bit of enzymes like amylase in your saliva and the stomach has mechanically re-chewed food mushing it to a pablum consistency. Next the food, now called chyme, is released by the pyloric valve into the duodenum or the second stomach, as it functions.
The duodenum is florid with villi or tiny finger shaped structures that massively increase the surface area of the insides of the intestines. As soon as chyme or undigested food makes contact with the villi, special cells release secretin into the bloodstream and stimulating the pancreas. Cells nearest the pyloric valve have the Lion's share of cells that inhibits the action of secretin since our vertical digestive system stops enzymes when they're detected up high in the gut.
Something is going wrong with the transit from the stomach down into the duodenum and beyond. I would suggest you have a test for bacterial overgrowth done. If the stomach acid is too weak, bacteria will overgrow the stomach and that usually means sores or even ulcers because H.pylori is the real cause of ulcers. Also if your stomach acid is weak it won't reduce food to chyme and the pyloric valve will happily stay closed until you puke. The bacterial overgrowth test is easy, you are given a small drink of water with an artificial sweetener like mannitol. We can't digest mannitol but bacteria and yeasts ferment it giving off extra hydrogen. They collect a breath sample every 30 minutes for a couple hours. A harmless easy test that will determine if your stomach acid is up to par. Maybe you are way past me on this, but it is vital you know the quality of the stomach acid in your gut, or if you have bacterial overgrowth. It is difficult to feel the difference between hypo and hyper-acidity. If your acid is too weak to reduce your food or so strong your stomach lining is raw and contracted, food won't easily move.
In order for your stomach to be in such terrible pain after eating and taking Creon, Pertze or Zenpep, I would guess you either have ulcers or a pre-ulcerative condition which is just saying you have something like a road rash on the inner walls of the stomach. Either stomach acid or enough enzymes are immediately released to attack and try digesting any and all open sores, even at the capillary scale. This is painful, if you are experiencing a bit of autodigestion of the stomach or a lot, it would be like drinking molten lead. If you mentioned the enzyme, I missed it but, over the counter enzymes, like supplements from a vitamin store or the prescription enzyme Viokase are immediately released in the stomach. I take Viokase and Zenpep or Viokase and Creon, I am still dialing in on the choices.
Gastroperesis could be caused by a very typical CF problem, DIOS or a form of soft constipation that can become a lethal blockage. Many CFer's guts get clogged and literally backed up to the stomach. Many of us have vomited something a little too far into the GI tract, the further into the digestive process, the less it resembles food. If you are chronically blocked up it could be in either the small or large bowel. Distal Intestinal Obstructive Syndrome implies an obstruction at or near the junction of the small and large bowel. This is a very bad place because it is distal or the furthest point from its beginning of both intestines. I have gone through periods when a meal or two didn't move down and ended up hurling it right back up. This was all the result of soft blockages.
So your gastric emptying must be really taken to task. Your doctor had better be able to tell you with absolute certainty what is causing your gastoP. Typically in CF we have an abundance of stomach acid, way too much in fact. I make way too much and take a maximum dose of Dexilant plus several Zantac just to keep from developing gastritis, the pre-ulcerative condition that may turn to ulcers. It is possibly more important to fully understand why you have gastroP.
It should be relatively straight forward unless you have that quirk of the Vagus nerve. The only cure for that I am aware of is to become a person with the calm of glacial lake. Actually it usually takes living by a fairly rigid routine. Become a Thai Qi Master or a Woo Li Monk, it's tough when your emotions are directly wired through the Vagus nerve but there are ways of treating it in most cases. If that's the cause.
If you haven't had a food transit study, or if your insurance will allow your doctor to have a PillCam where they take a video of your entire small bowel, have both done. Maybe, like me and many others who deal with a dysfunctional gut, you've had a few abdominal CT scans. I realized when reviewing all my abdominal or chest CT's that there isn't a single CT, save those I took a bowel prep for, I was constipated. I didn't feel constipated, it felt normal to have my bowels full. Actually it was miserable. Mutations that affect the pancreas and not the lungs are out there and seeing CF specialists/pulmonologist could result in a misdiagnosis because so much focus has been on the lungs. Besides, what can you do for a pancreas?
Silly time to ask but have you been told why you have gastroperisis? Do you know your mutation(s) and any polymorphisms?
Good Luck,
LL
