The Good, the Bad, and the Bloated: Final Update of My Gastro Testing
“Happiness is having good digestion and a bad memory.” --Ingrid Bergman
Investigating the cause of a digestive problem is just about as complex and frustrating as pinning down a multiple sclerosis diagnosis. The tests are numerous and the results can beg a new set of questions.
I started chronicling this odyssey with my essays titled "Famished but Full: Digestive Problems and Their Relation to MS," "Surviving a Head-Butt: An MS Patient's Adventures in Digestive Care," and "What I Learned at the Gastro Appointment." Now I’m three months in to the testing and the ruling out of a number of differentials. The good news is that there is nothing serious causing my symptoms. The bad news is that because I don’t suffer from Crohn’s or celiac or cancers or ulcerative colitis, my condition gets swept into the catch-all bin called Irritable Bowel Syndrome, or IBS. Why is that bad? Perhaps it’s more accurate to say that it’s troublesome. There is no definite fix, no cure, only symptom management that works as unpredictably as MS symptom management. Treating acute events can be as effective as trying to put out a house fire with a squirt gun. Preventative and anti-spasmodic treatments are dicey, too. The MS body likes to play tricks on us. Its manifestations of neuro illness are notorious for not quite matching the descriptions found in medical texts. Likewise, the IBS gut is quite the prankster, too. Those little dickenses. I’m laughing just thinking about their shenanigans. Not.
Why complain, you might ask, why not be grateful it isn’t something that’ll rot away an organ or cause an early death? After all, I’m an old hand at managing the weirdness of MS; how could IBS throw me for a loop to the extent that I want to spend a good thousand or so words on it for audience consumption? I mean, what in the world does IBS have to do with MS anyway?
First off, Irritable Bowel Syndrome (IBS) is basically a motility problem. That long sausage of a digestive muscle can become paralytic and spasmodic in any segment from the stomach down to the anus. Depending on the location of the dysfunction, our symptoms can be anything from painful gas, pelvic pain, abdominal distention and bloating, to constipation, diarrhea, nausea and vomiting. Granted, the highest number of IBS cases occur in the non-MS adult US population to the tune of 10-20 percent—that’s 10-20 percent of 242 million people, or 2.4-4.8 million. But people with multiple sclerosis suffer from IBS symptoms at fully twice that percentage. With an MS population of 400,000 in the US, that translates to 80,000-160,000 people with MS who hurt in some way as a consequence of eating. Interestingly, female IBS sufferers far outnumber men in both MS and non-MS cohorts. This fact mirrors the demographic of MS cases, where more women than men develop MS by as many as 4:1. So, with a significantly higher number of non-MS sufferers, what exactly is the connection to MS?
For one, we are learning more each year from studies that explore the connection between gut bacteria and autoimmune disorders in general. In a recent Harvard study co-funded by the National Multiple Sclerosis Society, gut bacteria found in MS patients differed from those found in the non-MS population. Bacteria that proliferated more in the gut of the MS subjects were the kind that causes inflammation. These inflammatory cells may drive disease progression and might therefore be regulated with probiotics. But more studies are needed to further explore the hypothesis that gut micro-biomes impact immune activity and/or are affected by abnormal immune activity.
As my own case stands at this writing, my MS is as stable as ever, while the ever-present IBS symptoms continue to stage a mutiny. My gut refuses to properly digest without creating a lot of drama. Taking peppermint oil capsules and digestive enzymes have not worked consistently. For two weeks, my gastroenterologist was in protracted negotiations with my small intestine. It agreed to take a 10-day course of Xifaxan, a delayed-release antibiotic that becomes active when it hits the small intestine, destroying bacteria in only that segment, where normally there shouldn't be much bacteria. This therapy rules out Small Intestine Bacterial Overgrowth, or SIBO. It is another in the long list of differentials. My gastro said that she finds this condition in a lot of MS patients, so it’s worth a try at this stage. If I have SIBO then my bloat and distention should have been relieved with Xifaxan. Alas, having finished the course yesterday, no such improvement happened. All Xifaxan has done is cause a yeast infection and ease my urinary retention. My bladder is happier and I’ve medicated with anti-yeast Diflucan, but my tummy still blows up like a beach ball after eating two small pieces of toast. Darn.
The next treatment will be to follow a low FODMAP diet. FODMAP foods are short-chain carbohydrates that produce excessive liquid and gas in the small and large intestines. I will attempt to eliminate FODMAPS from my diet to see if my symptoms subside. To learn more about the FODMAP diet, click on VIEW REFERENCES below.
The last uncomfortable test will come tomorrow when I undergo a transvaginal ultrasound to rule out ovarian cancer. This kind of cancer can cause abdominal distention, too, so my very thorough gastro wants to make sure I’m out of the woods on this. When I squinted at the prospect of having that procedure done knowing that I’d have to hold 32 oz of water in my bladder for an hour before the test, my gastro looked me straight in the eye and said ovarian cancer isn’t something you want to miss. Recalling the story of Gilda Radner’s journey of misdiagnoses that likely destroyed her chances to survive ovarian cancer, I totally understood what my doc was telling me. I’ll put up with some bladder discomfort if it means having more peace of mind.
If you find that my symptoms match what you are dealing with and you haven’t seen a professional about it, I recommend seeing a gastroenterologist. The diagnostic testing might be cumbersome and drawn out, but it isn’t much worse than what you are experiencing getting your MS diagnosed and treated. Your condition might turn out to be something that is easily treatable with diet or a supplement. Good luck to you all.
How many specialists did you see before finding "The One"?