Earlier in this discussion I mentioned that several of my specialists have recently retired including my GI doctor. My new doctors were doing their own evaluations, which was fine with me. The changes have yielded some positive results regarding that 11/10 stomach pain. In short, I have had a sustained pattern of formed, natural bowel movements for almost a month. Hosannas all around!
For most of the last fifteen years I have lived with the pattern of needing to go to bed right after a BM, the pain and nausea was so intense.To add insult to injury, my nose would become congested and very runny, I’d become seriously nauseas as a prelude to the upcoming bowel movement. For that same period, DIOS or a soft blockage in the large or small bowel was always eminent and not surprisingly my doctor probably ordered fifty abdominal and chest CT scans over those years.
I noticed something common to every abdominal and chest CT I've had for the last decade-plus. Every one noted my bowels were full. Somewhere in fifty or so CTs one would hope to find one or two tests that my bowels weren't full. Not the case. I'd be willing to bet that most CFers who don't have normal, formed stools regularly, have large and small bowels constantly full of something resembling peanut butter but more vile and toxic. Amazingly, doubling and nearly tripling my enzymes has netted something I honestly thought was just a terrible misery I was fated to for my remaining days.
Long before my late CF diagnosis I have had all the usual stomach ailments, ulcers, IBS, gastritis and GERD. Without realizing I needed enzymes, I had chronic hard constipation. As the need increased, and after my CF diagnosis, my stools went from hard constipation to CF poop which defies medical description. Maldigested food in combination with defective mucus that should be slippery instead of sticky makes something described as peanut butter, liquid nails, and molasses. It literally tears the delicate mucosa or lining of the gut as it moves through the intestines. The incomplete digestion results in some toxic, irritating chemicals, neither nutrient nor inert poop, this causes a constant state of inflammation and bloating. Enzymes aren’t the answer to every GI problem but if they aren’t in sufficient quantities to make formed stools that are normal for all practical purposes, a huge, life threatening problem is not being properly addressed.
Through more years and more doctors than I can count, I have complained time after time about my GI issues in exquisite detail and it was as if I was talking to a wall. I read so many CFer's complaining of the same problem. There really isn't any real hope of a completely normal and pain free gut but I am reasonably certain the misery can be significantly reduced. My newest GI doctor and the adult CF clinic at NJH have cracked the case! Sort of.
Actually, a lot of digging around through medical journals and related publications my wife and I finally assembled a picture of how various digestive dysfunctions look and what is the most probable and successful treatments. My new GI doctor had just taken a weekend course on CF and expressed an open attitude inviting me to forward any articles or papers that I find interesting and germane to treating my gut.
Depending on whether a CFer has GI dominant issues or pulmonary dominant, the current information is showing GI dominant CFers should be taking enzymes quite differently from those who have pulmonary dominant CF. This implies that the CFer either has some pancreatic function and/or pancreatic pain. But that isn’t written in stone, other CFers may find help in an old friend.
The enzyme formulations generally approved by insurance are all time released enzymes. Viokase, an immediate release enzyme has been on and off the market and insurance prescription lists since the 1970's. Another group of articles advocates using both Viokase and a time release enzyme like Pertzye, Zenpep or Creon. With a good hydrogen breath test confirming I have strong stomach acid, I plan to try Pertze, time release enzymes with sodium bicarbonate that buffers the stomach acid keeping digestion maximized for adequate time.
I have been having disabling GI problems for so long, the short few weeks I have had normal stools, I still have a bout of misery before and after, but it is usually a fraction of the go straight to bed plan. The 11/10 pain is probably a modest understatement. Although I still have epic pain from chronic pancreatitis, a portion of my pain management goes to the daily dump, its prelude and aftermath. But I believe that my gut has been so imbalanced for so long it may take months to reduce the inflammation.
Anybody who is reasonably intact, not missing any of the intestines but maybe the pancreas and gallbladder are dysfunctional, shot or removed, should be able to have a decent bowel movement almost every time and not have massive piles of extruded putrid eels. It would be best with a doctor who really knows his business, but they are rare. The voluminous foul smelling peanut butter bowel movements aren't just what we have to put up with. It is a primary symptom of inadequate enzymes or enzymes delivered at the wrong time. It is not rocket science but I am at a loss why doctors almost have to be stuck in the bathroom with you to get the point.
Another couple of improvements came from suggestions made by my new GI doctor. After running a hydrogen breath test a timed test to determine if I had bacterial overgrowth, (I don’t) he gave me a simple two page list of foods divided into low and high FODMAP foods. "Fermentable Oligo-, Di-, Mono-saccarides a mainly foods that we don’t have the exact enzyme to properly digest. An example is fructose, a sugar found in apples and less noble sources requires an enzyme that our body doesn’t make in order for us to properly digest it. So it ferments and we get gas and potentially bacterial overgrowth. In the "sugar is sugar" debate, fructose is partially digested using two different enzymes produced by the liver. An apple should be healthy but not two at once sort of limits are established for low FODMAP foods. Wheat is a big FODMAP villain as are most fruits with stones like peaches and dates. The list is not inviolate, I'm not giving up avocado and as long as it isn't terribly upsetting, it is fine.
For what it is worth, I have been fooled right along with a lot of CFers who don't realize that they have suffered too long for bad reasons,
LL
