For many CFers, GI problems define the major issues. Certainly this is my case, my lungs are fine but I've had GI issues my entire life. When this thread got started, Rebjane was in search of a new pediatric CFGI specialist. Good luck on that one, I've been looking ever since I was diagnosed by a good one. I almost wonder if seeking a pancreatologist would yield a doctor that is more in tune with CFer's brand of GI problems?
Malabsorption and maldigestion are hallmarks of CF. Pancreatic juices and bile are problematic. Small duct disease is ubiquitous in CF and this means that even perfectly thin bile and digestive juices are impeded from arriving in sync with the food, if at all. The pancreatologist that first diagnosed my pancreatitis drew up some fresh pancreatic juices in the testing process. I kept a sample of the sampled fluid mainly because I was astonished at how viscous this body temperature liquid was. Like cold honey! Our bile is extra salty, extra thick and we make triglycerides faster than the liver can process and push it into the bile ducts. Children don't have gallstones! But CF children do plus the sodium bicarbonate produced by pancreas is in such high concentration, it's virtually impossible to express it through the pancreas and pancreatic ducts to the duodenum and food. This condition precipitates pancreatic autodigestion where enzymes and powerful concentration of bicarbonate breakdown the protective mucus membranes and attacks the living pancreas. Ouch times ten to the fifth.
When we fail to properly digest and absorb food, predictable problems develop. Fecal volume literally exceeds the intake volume and its thick, sticky consistency fights the parastaltic action of the intestines. First, all the thick, sticky mucus that isn't coughed blown or spit out is swallowed or drains into the stomach. There it's met with much stronger than normal stomach acid, courtesy of CF, and here food is treated with amylase and HCL turning all food into a goo called chyme. Normally chyme is like bread pudding puréed in a blender and it squeezes through the lower stomach valve into the duodenum to be met by bile and enzymes. If the stomach acid is strong, depending on the meal it is turned into an adhesive like goo which doesn't get better.
I remember the TV show "Mc Gyver" an adventure yarn with solutions only found in weird science. In one episode Mac is caught in the break room of some underworld laboratory, and a broken pipe is leaking chlorine gas or such, eminently asphyxiating him and some darling foil. Mac buys a chocolate bar and finds some acid. He's of course pinned under the vending machine and his disbelieving gal patches the leak with an acid coated candy bar. Mac explains his methods of madness each episode after saving the world. In chemistry two reactions are very prevalent, reduction done by acids and oxidation done by caustics like ammonium hydroxide (ammonia). Mac's little trick demonstrated that sugars, proteins and lipids are reduced to plastics in the stomach. Caustics like sodium bicarbonate do the same thing and between the HCL in the stomach and whatever bicarbonate is expressed by the pancreas perform a chemical digestion called reduction-oxidation or REDOX reactions. Mess with food and redox reactions and you too can make plastics from soy, something Henry Ford came up with when iron was rationed for war materialle.
If food isn't adequately digested it becomes cohesive and adhesive so it sticks together and sticks to the intestinal walls. This can result in a soft blockage or blockages called Distal Intestinal Obstruction Syndrome or DIOS. DIOS can be chronic or acute and both. From what I've read and discussed with GI doctors, DIOS feces routinely adheres to the intestinal mucosa and tears it off when it moves and sticks again. This has two effects. Food/fecal transit is slowed down and the continued bowel spasms squeeze more and more water out which is reabsorbed, leaving dry, hard stool stuck to the bowel walls. The constant ripping of the delicate mucus membranes in the large and small bowel leaves them swollen, tender and vulnerable to infection. In other words IBS, Crones, chronic pancreatitis and generally a seriously miserable feeling gut.
About four years ago I embarked on knowing everything about bowel health. By following all the guidelines for good bowel habits, most constipation can be avoided. Dig out a Mayo Family Guide to Medicine or such and there's a s***load of what's involved in total bowel health. Eating and hydration is a given. Fiber is both soluble and insoluble roughage. Which type and the amount of fiber requires some consideration. I avoid natural fiber because it shreds my old, delicate GI tract. Roughage is good for us as long as it doesn't make matters worse. Natural fiber produces natural gas and despite the aroma, gas interspersed throughout the food expands and concentrated amounts can be under so much pressure as to blow a hole in the bowel. Diverticulosis is caused in part by gas pockets inflating a weakness in the bowel wall. Take natural fiber only if you can do so without creating problems without substantial benefit. Mirilax is not supposed to cause gas, but it seems to do so. Mirilax is man made Polyethylene glycol or PEG, a synthetic soluble fiber. Lactulose is a natural soluble bulking agent (fiber) and they work the same way. Lactulose is an indigestible sugar that sucks up water creating a gel like semisolid. Bulking agents are intended to concentrate a lot of weight in a relatively small volume. Involuntary bowel spasms travel from the stomach down the GI tract in waves called parastalsis or parastaltic waves. Food mass is usually sensed by special nerves surrounding the intestines. Properly digested food starts with high density and volume that reduces as we absorb nutrients.
The sensation of full bowels requires an alternate sensation of being empty. Maldigested food increases in volume and loses density, filling the bowels and locking parastaltic action off. The result is either soft or hard constipation, or flat out backfilling the GI tract. Although maldigestion is often at the center of our particular brand of GI misery, other problems result in the same issues.
Everything that was volunteered by preceding contributors is valid. The less appealing mineral oil, swallowed by the teaspoon/tablespoon should be legitimately trialed if it hasn't been tested. Mineral oil, NOT caster oil, is inert and effective in keeping our delicate mucus membranes slippery. Sodium citrate is very effective and when action is critical, it doesn't fail. Feeling the heft of a bottle gives part of its magic away. The sodium in it or other electrolytes like magnesium and potassium in salt forms causes water to gush through every molecular pore, adding bulk and mass that stretch and weigh against the intestinal walls, stimulating the nerves into parastalsis. Stimulant laxatives like bisacodyl sodium are actually irritants and the bane of laxative abuse. Milk of Magnesia is a safe alternative in kids because it draws in water and coats the intestinal walls, keeping them slippery and is sensed by the nerves that put parastalsis in action.
Chronic conditions like those caused by CF are very hard on the gut. Everyone experiences indigestion or constipation/diarrhea and the occasional stomach bug. After the cornea, gastric epithelia are the fastest growing cells in the body. How can living flesh digest flesh without digesting itself? Sometimes we don't and occasionally insulting the gut leaves healthy periods to regenerate. The chronic part of our GI issues makes otherwise effective bowel health extremely challenging.
I could write a chapter on the intricacies of keeping the GI tract clean and moving. In fact I have written a paper on it. For all I know about the scoop on poop, I'm constantly screwed up. I've solved the problem of hard constipation but soft adhesions of DIOS can put me down for days. The bowels move almost daily but pain and nausea is constant and sometimes debilitating.
This ends full circle. GI doctors manage our problems but rarely fix or cure them. Like the days when doctors smoked, even though they knew what to tell their patients, they rarely get proactive and offer effective advice. I'm developed a little jaded when it comes to GI doctors and I admit it. A CFGI specialist may come in the form of two or more specialists and I feel a pancreatologist, rare as they are, can do the science of digestion. Fecal elastase tests or steatorrhea and fecal volume tests are useless unless they're interpreted to expertly manage digestion. What's somewhat frustrating is the knowledge required to maximize bowel health is worthless unless it's in the head of the patient/parent and though simple for the most part, there's a lot of it. Details like reserving a time or times each day to try and have a BM aren't imparted by most GI doctors along with a consistent meal schedule but both tricks are hugely helpful in keeping cleaned out. A few months ago my GI doctor suggested I try probiotics! Duh, I've been taking them, eating/drinking various cultures and dosing with extra magnesium and a heck of a lot more for decades. Becoming an expert on managing bowel motility is a big subject. I have found that GI doctors are great for GERD, gastritis and other conventional disorders. The matrix of everything involved in digestion is such that the best medicine falls short.
Keep fighting and be healthy,
LL
That was 11 years ago....How would I figure if this is adhesions vs constipation.....These are things are need to write down and discuss with doc.