Tomorrow will be Take 3 on attempting to complete some GI testing...Both of the first two attempts had to be rescheduled due to an inability to keep any liquids in my body which is necessary for this test. Round 2 even came with blood sugars in the 40s...just cause, you know, puking bile and stomach acid at 8 am wasn't enough fun to begin the day with...
So, Breath Test vs. Kylene's Nasty Masties Round 3 will go down (hopefully) tomorrow afternoon. And I really, really need my body to cooperate tomorrow. This breath test cannot be done within 6 weeks of having had a colonoscopy. After tomorrow, the next availability for this breath test is not until May and, you guessed it, AFTER the colonoscopy that was also scheduled after my GI appointment last week. So I'm going in prepared with a double dose of zofran and some benadryl (cause you know, nausea probably isn't enough excitement for my mast cells to throw at me, there's always the potential for some allergic reaction to what I have to drink, too...) and ready for tomorrow afternoon to be the best. day. ever. (If you haven't caught on to the amount of sarcasm usually used in these posts, please insert sarcasm and re-read that last sentence =P)
Anyway, puking episodes delaying this breath test is not the only fun that's been happening since my GI appointment last week. I am cautiously optimistic that the appointment went well and this doctor may actually be able to help us figure some stuff out. Unfortunately I have learned that only time will tell when it comes to determining whether a doctor will truly be helpful, but I am encouraged and we are hoping that he will be able to at least get us moving in the right direction.
The best part of the appointment for me was the very end when we were getting up to leave. Leni had been tucked under his desk the entire appointment, but had been so quiet that he hadn't realized she was there. He spent 45 minutes with her head less than 6 inches from his feet...I'm just glad she didn't try to rest her head on his foot! He actually asked me, "Has she been here this whole time?" I wasn't sure how to reply to that other than to smile and nod. I wish my quick, witty comebacks that come so easily when I'm writing here would come to mind in the moment... =P No...she vaporized into the room silently right about when we started talking about my Creon dosage...
Anyway, moving past the case of the silent service dog, the appointment did go well. At least as well a first appointment can go. Like I said, we'll really know how well it went in the follow-up from the testing, but for now we're cautiously hopeful. I was referred to this doctor by my GI surgeon and motility specialist (also both at the Clinic) because both of them thought I might have some form of pancreatic insufficiency going on and this doctor's main specialty is in pancreatic issues.
He spent about 45 minutes with me going over all my recent history in depth and listening to my progression of symptoms and how my mast cell disease was impacted by these GI issues. He felt that my symptoms and lab work are not consistent with chronic pancreatitis (which I've been diagnosed with about 6 times) which my mast cell doctors agree. He said that the scarring found on my pancreas during an endoscopic ultrasound is also not consistent with chronic pancreatitis, although it could be an atypical presentation. He also felt that it was not actual scarring but clusters of tissue which he said could be indicative of mast cell infiltration of my pancreas. This was what my specialist had guessed when we mentioned these pancreas issues to him, so it was interesting to get another point of view on this. Unfortunately, there's no easy way to look into this further...the only option would be a biopsy which is not something we feel is needed right now.
We also discussed some of my other issues with absorption and blood sugar fluctuations. The reality is that these symptoms could be entirely mast cell driven with no GI mechanism behind them. If that is the case, it makes figuring out the next steps a bit more challenging as we may have to look into treatment options that bypass my intestines and hope we can get things under control then pray I can transition back onto oral/liquid meds and stay stable. But before we go that route, we still have some more GI testing to do to make sure we aren't missing anything.
Ironically, one benefit of having nonstop absorption issues is that I am able to give a stool sample at the drop of a hat! Small blessings, right?? =P He ordered a few stool tests to check for parasites, malabsorption, and a few other potential causes that we don't want to miss simply because we thought it was too simple to test for. Those results have all come back and I am parasite, h pylori, and c diff free, so that is good news. (See Liz, 8 years later and still no real Herman =P) The stool samples did confirm that my body is not absorbing electrolytes properly and is dumping them out of my body at fairly high levels. Obviously that is not good, but didn't really give us any additional information that we didn't already know, just confirmed what we already knew. We're adding in some extra blood work to see what my overall electrolyte levels are to determine if we need to adjust what I am getting in the fluids I run at home twice a week.
This breath test that I'm going to do tomorrow (hear that mast cells?!?!) was supposed to be last Thursday. It will indicate whether I have a bacterial overgrowth in my small intestines. The complication with it is that I have to drink (and keep down) a mixture of disgusting tasting stuff that will activate any possible bacteria that may have accumulated in my small intestines. I can avoid having to taste it by putting it directly into my stomach through Herman (G tube), but since it has to go in my stomach, there is still the possibility that I can throw it up. And that would be why I will be going in to Round 3 armed with a double dose of zofran and some benadryl.
We also scheduled a colonoscopy for the beginning of May. It's been almost 10 years since my last colonoscopy and he felt that it was time to re-do it based on the symptoms I'm currently having. He will be checking for specific inflammation patterns that could potentially indicate a bowel disease that could be treated independent of my mast cell disease and taking biopsies for anything that may be happening on a microscopic level. Can't say I'm looking forward to having to deal with anesthesia again...I was hoping that my J tube surgery was going to have been the last time for a while.
BUT the good news is that things will hopefully go as smoothly as they did for my J tube. When I had that surgery, the head of the anesthesiology department had overseen my case and stayed in the room with me the entire procedure. He had researched mast cell diseases was able to keep things under control and prevent any severe reactions; it was about the best I had ever tolerated having to be put under. He had given me his card and said he would either personally oversee any future procedures or make sure whoever was on my case was up to speed on how to handle things. When I emailed him he said he would be happy to make sure things go smoothly again and that if he was not able to personally be on my case (since it's not in an OR) he would talk with whoever was assigned to me. So we are hoping that things will go well on that front!
Other than that, we're back to any chronic illness patient's favorite thing to do...hurry up and wait...We already have the results of the stool samples, and I'll have the results of the breath test tomorrow when it's finished. I go back to see my allergist in 2 weeks for an actual appointment (not to be confused with my twice monthly quick appointments when I get my Xolair), so I'm hoping we'll have at least something to discuss from the testing.
In other news, I am now officially 32 DAYS epi free!!! Despite still feeling incredibly sick most days and not having much resolution of symptoms as a whole, this is HUGE! Anaphylaxis is incredibly taxing on the body. It is literally the body going into shut down mode from shock. The only way to reverse that is to give an equally shocking injection (epi) to jump start the body and follow that with IV medications to stabilize things. It feels about as jarring as it sounds...so while I do hope that my epipen usage soon matches my actual symptoms, in the meantime, I am so very thankful to be a month free from anaphylaxis.
So that's the update from my GI appointment last week and what we're hoping to sort out in the next few weeks. Lots of testing, lots of waiting, and of course, lots of nasty masties...nothing to do but keep moving forward, finding reasons to smile, and continuing to work on Leni's ninja skills to keep surprising unsuspecting doctors!