Monday, June 5, 2017

GI Testing Update

Now that May is over, we have finished all of the GI testing that had been scheduled and are sorting through the results. And in true mast cell fashion, things are much less straight forward than they could be.

Cute photo of Leni just because she's way more fun to talk
about than GI testing fails =)
The first test results we got back were blood work and stool samples. I think I shared the results of these a few posts ago, but basically there was nothing earth shattering that appeared with these tests. My blood work showed slightly low potassium levels which has been the case for a few months now, but nothing else too serious. The stool samples were able to rule out any bacterial infection or parasite and to confirm that I was loosing large amounts of electrolytes in my stool as well as not absorbing food properly. So no new information from these...apparently there are typically 2 main causes of chronic intestinal hyperactivity. One is due to structural issues or primary diseases such as Crohn's and the other is due to secretory issues where the intestinal activity is due to the overproduction of signals to the intestines causing them to continually be active. Like I said earlier, in true mast cell fashion, my testing falls squarely in the middle of these two mechanisms not really providing any indication of which is more likely. Some of my test results point to one mechanism and other results point toward the other...thanks, mast cells...thanks...

The next test results to come back were from a breath test that was looking for small intestine bacterial overgrowth. This tests for the activation of H2 and CH4 in the intestines after stimulating them with a high sugar drink to see if there is an accumulation of bad bacteria that may be causing chronic intestinal issues. Other than having a minor reaction to the coloring dye in the drink and getting extremely nausea before the end of the test, this was relatively okay as testing goes. During the test, the nurse told me what values we were looking for to qualify for a positive test. Despite having fairly high baseline values, it was clear that I was not going to hit the mark to have a positive SIBO test. At least we figured one test was definitive...until a couple weeks later when the test was "interpreted" and became just as ambiguous as the others...Turns out there are values that are considered positive even at baseline without requiring an increase after drinking. Both of my baseline values were just over that line...but after drinking dropped to non-diagnostic now what do we make of that??

The oh-so-wonderfully artificially flavored drink to test for SIBO
Last round of testing was the colonoscopy that I had done a couple weeks ago. We ended up adding on an endoscopy at the last minute thanks to some intestinal bleeding I had the week before the scope. At least this time it happened BEFORE the testing instead of immediately after. Both scopes were relatively unremarkable. I had some chronic irritation in my stomach that was an atypical (of course) pattern for gastritis and some acute and chronic irritation in my colon which was again, atypical for normal colitis. Thankfully, my small intestines looked relatively okay. My GI felt that the acute inflammation in my colon may have been responsible for the bleeding I had the week before the scopes, since he did not see any other areas that could have explained the bleeding. Thankfully, after stopping all oral intake and relying solely on my elemental tube feeds for a week, I have had no more episodes of bleeding so we're hoping it was just acute irritation.

I spoke to my GI on the phone about a week and a half after the scopes once the biopsy results had come back. The biopsies didn't show anything that he hadn't seen during the scopes, but we were able to rule out Crohn's (for about the 3rd time) and Celiac (#7 or 8) again and confirm there were no other infections or disease processes. Basically we have not much more info than we did before the testing, but we have more definitive answers on what is NOT going on, so I guess that is good at least. My symptoms are pointing more toward a secretory mechanism for my gut hyperactivity despite not having tests results showing that definitively. We have pretty much exhausted all the possible structural issues or primary GI diseases, so we're down to secretory problems and just mast cell driven GI issues.

Older photo, but still so familiar...
To be honest, this is not the news we were hoping for. Despite negative test results usually being a good thing, when something is very obviously wrong and the tests don't give any answers, it is very frustrating. We can't do anything to treat or manage these symptoms when we don't even know what is causing them or the underlying mechanisms. Since this flare started in November, we have been unable to try any new mast cell medications because my gut is not absorbing anything properly. The oral meds that I do take are not being absorbed and pass through undigested. Any solid food that I eat also comes out undigested even with high doses of pancreatic enzymes that I take to help my body break things down. Even my tube feeds are not being absorbed properly and we have increased them by 150% to hopefully prevent more weight loss and get as much in me as possible. Until we are able to get my GI symptoms under control, we are unable to trial any new mast cell medications orally. And that is where we are stuck...

The past 6 months have been a holding pattern of hoping we'll get a breakthrough with my gut issues so we can start trying new mast cell medications. At this point, I have tried many of the oral mast cell medications already. There are a few left to try, but doing so with my intestines not absorbing would be pointless. We won't know if it's the medication actually not working or my body not even absorbing it if we add anything new in right now. We don't want to start any IV treatment options because they are VERY difficult to get off of once they are started. So we've been waiting for all this GI testing and hoping we would get some answers. But now that we're on the other side of all this testing with not much to go on, we're looking at the reality that my symptoms could be entirely mast cell driven and only presenting in the gut but not actually an intestinal problem.

With that being the case, we are running out of options. We may be forced to try some IV therapies to get my body more stable. Once my GI tract has calmed down, we can add in some oral mast cell medications, and then hope I am able to transition back off of the IV treatment. Not our first choice by any stretch, but at what point do we no longer have a choice? Obviously we want to get me more medically stable, but at what cost? When do we decide to risk potentially being stuck on IV medications long term in an attempt to prevent long term damage from relentless symptoms? I think these questions are some of the most difficult to answer when living with a chronic, rare disease.

I'm heading out to MN again next week to follow-up with my mast cell specialist and this will be one of the big things we will be discussing. I see my GI again a few weeks later and my allergist also before the end of June, so hopefully we'll have a plan of action in the coming weeks. Maybe it's not what we want or hope, but even still, I am so incredibly thankful to have a team of doctors willing to help figure things out. It still wasn't that long ago when I was still fighting to be heard in the medical community that something was actually wrong. Two and a half years after being diagnosed with mast cell disease and I am so thankful to have a local allergist, mast cell specialist, neurologist, endocrinologist, GI surgeon, and 2 other GI doctors all working to help me figure things out. Too bad that sometimes there just isn't anything anyone can do...

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