Um. Suffice it to say that my testing and follow-up appointment on Thursday did not go miraculously well.
Last time I posted, I talked a bit about how I hadn’t been keeping much down following my (pretty uneventful) endoscopy/Barostat/manometry last week. Well, instead of getting better, it got worse. Wednesday I started throwing up in the morning after waking up feeling welling and trying a bit of juice and a (white, low fiber) mini bagel. I kept throwing up through most of the morning. We were set to drive down to San Francisco that afternoon at about one, after my dad finished teaching, which we did. Luckily, I’d stopped throwing up by that point. A while into the drive (it was more than half way — probably about two hours out of what turned out to be a three-ish hour drive), I was feeling better and even a bit hungry. I tried some water and crackers…and spent the rest of the drive throwing up. It got worse that night. For the past week, I had been getting a significant portion of my hydration in at night. I would wake up in the middle of the night several times with my stomach hurting and drink a bit of water before falling back asleep. I probably got about 12 ounces in each night — probably a third or more of my total on the good days. Wednesday night, it didn’t work that way. Instead, I woke up to throw up each time, therefore losing water/hydration through the night.
Thursday morning I had the last of my series of tests: the hydrogen breath test to check for Small Bowel Bacteria Overgrowth.
I had to drink 8 oz. of a lactulose and water solution. I threw up about two ounces of it, but the nurse said that the test would still work as long as she re-calculated things to account for the smaller amount of the solution. Basically, this test consisted of my blowing into a bag once before I drank the solution and then every fifteen minutes after drinking for three hours. In between, I played around on my phone, crocheted some, and — to be honest — kind of faded. My mouth kept getting drier and my tongue rufflier as it swelled (a sign of dehydration) and I felt weaker. The test started at 8:00 a. m. and my follow-up appointment was at 11:30 at a different CPMC “campus” 1.4 miles away, so the timing was tight, particularly as I was pretty unsteady walking to and from the car.
I got checked in and was called pretty quickly into the exam room. A nurse took my vitals and my weight — the latter of which was down several pounds from the weight they had from only one week before when I had my endoscopy. Dr. Shetler came in and pretty immediately said that she was probably going to send me to the ER after the appointment. (And when she got my orthostatic blood pressure, that changed to definitely.) She was very concerned about my weight and said that I was extremely underweight and my weight was going in the wrong direction. (Well, I certainly knew that last one!) She decided to have the ER place an NJ tube for now (more on that later) and that we needed to talk seriously about having a surgically placed J-tube. Probably for the next three months.
If you had told me in July that I would be facing a likely J-tube — and surgery to put it in place — I would have been horrified. (If you had told me in May, I think I would have scoffed.) But now? Honestly, I’m pretty resigned to it. I’m not maintaining nutrition consistently on my own. I could say that I was maintaining my weight after getting the last NJ tube out, and if you looked at my weights at doctors’ office visits, you would think that was the case. (Hey, there was even one visit, at 7:30 p. m. after dinner and wearing a heavy sweater and shoes where I looked like I was up.) And I was and I wasn’t. Because there were at least three times where my weight dipped down three or so pounds (which is huge for me) and those set backs meant that I could never make any progress forward. And now this last week (and a half, now)? It’s been one giant slide downhill…one that I simply can’t afford. This isn’t a nice problem to have, like some might view unintended weight loss. This is staring down surgery, this is eating via some kind of a tube, this is part of my digestive tract failing me. And so if a J-tube can help? And is better for longer-term use than the NJ? Bring it on.
We also talked about the test results. Here’s a quick summary:
I don’t have…
- Any kind of esophogeal problem (presumably including GERD, Eosinophilic Eosophagitis, Rumination Syndrome, etc.)
- Gastroparesis or delayed stomach emptying
- H. Pylori or other stomach “bugs”
- Celiac Disease
- Ulcers (including Crohn’s, I think)
- Small Bowel Bacteria Overgrowth
- Visceral Hypersensitivity
- Much of a problem with my stomach muscles relaxing to accept food (I threw up during this part of the test before all data was collected, so it’s possible that there’s a slight malfunction and my doctor plans to treat accordingly, but before I threw up everything was going well and after when they gave me Imitrex my muscles relaxed beautifully, so it doesn’t seem like it can explain things.)
There’s a certain point at which negative test results stop being good news.
What about Cyclic Vomiting, as I’ve been talking about, you might ask? Dr. Shetler mentioned that while, in some ways, I look like a cylic vomiter, my “episodes” are happening way, way, way too frequently/close together for that to really fit.
She said that she wanted to see me again on Monday to start running more tests and doing some drug trials. She talked about starting me on one medication, which helps the stomach relax, and another, which is used for a whole bunch of different neurogastroenterological issues, including cyclic vomiting/migraine prophylaxis and visceral hypersensitivity and some motility issues. We talked about side effects a bit — the first one is pretty safe and the second can have some cardiac(!) side effects, so she said she’d have the ER do an EKG. It can also make people in my age group suicidal(!), so she asked me some screening questions, but she thought I’d be okay since I don’t have a history of depression or suicidal tendencies and I have super involved parents who can monitor. I’m not sure exactly which tests I’ll have — something about an electrogastrogram (“It won’t give a diagnosis, but it will give more data”) and some kind of small intestine studies. (I’m not sure if those are imaging or motility or….?)
She did a quick exam of my abdomen and didn’t really find anything, except that I was too thin. I told her that I thought I might be constipated because (sorry if this is TMI!) I’d been having a little bit of watery stool I thought might be leaking around an impaction, but she said she thought it was just that I hadn’t, you know, eaten. (She was right, as it turned out. Reasons not to Google your symptoms?) She then called a wheelchair to take me from the outpatient clinic over to the ER, which was on the same campus. It turned out to be my transport guy from last week! He took me down underground and in through the back of the ER.
In the ER, they drew a bunch of blood, got me started on IV fluids, and gave me Zofran. My ER doctor was a really cool guy, who was great at dealing with the crazy situation I was in — they couldn’t decide whether or not to admit me for the night and were having a ton of problems getting the stuff done that they needed to. I got hooked up to an EKG (my first ever, we realized) and then a couple of nurses came to put an NG (yes, nasogastric) tube in me. I couldn’t figure out why they were doing it until after it was done and they hooked me up to a suction thing — they were decompressing my stomach (taking out air and stomach juices and such) so that it felt better. They tried going in through my right nostril first and stopped when it started bleeding. They got it in my left nostril much more easily — and told me that those tube placements were there least favorite thing to do, though I handled it relatively well. The ER doctor came back and explained that they were trying to get me into interventional radiology for an NJ tube placement, since they couldn’t send me home with the relatively unsecured NG tube that I couldn’t be fed through and they’d know within the hour.
I got in and went to get the lovely tube you see in the top picture. The interventional radiologist and the tech were arguing about how to take the tape securing my NG tube off. I, ah, solved the dilemma by reaching up and ripping off the tape. Hey, it’s not like I haven’t done this before! The NJ tube placement went super smoothly this time and only took a couple of minutes (I think my pyloric valve was more cooperative on Thursday than it was back in August. Plus, they used an even thinner tube.) I actually kept smiling through the procedure. The intervention radiologist said that it was clear that this wasn’t my first time and that he was sorry about that but that I handled it incredibly well.
Back in the ER, I got my EKG results. So, after aaaaaaall the negative GI tests, do you know what I got a “positive” result for? Yep, the EKG. Apparently I have some kind of slight arrhythmia that’s just barely significant enough that I might not be able to take the medication that I was going to be prescribed and that might help. 😦 (It’s also possible that I might be able to take it and just have frequent EKG monitoring…I don’t know yet, I’m sure it’s going to be part of my discussion tomorrow.) Kind of frustrating.
Long story short, I ended up getting admitted for the night because they couldn’t get me a pump to use with my NJ tube and I was still throwing up and they couldn’t send me home unable to eat or drink. I moved upstairs and got some more IV fluids and Zofran and a visit from the hospitalist who specializes in GI patients. (But is not a GI doctor…clear as mud?) We went through my whole history, starting from when I was eleven (we’re getting pretty good at that) and listing the things I’ve been tested for and all of that. Oh, and all the drugs I’ve tried and had bad reactions to. (Seriously, we’re basically anti-emetic experts at this point. To date: Domperidone, Scopalmine, Reglan, Dramamine, Phenargan, Zofran, Ativan…With bad reactions to Domperidone, Scopalmine, Benadryl, and semi-bad to Reglan….) My dad asked if she had any suggestions on what it could be. Her answer: “By the time you’ve reached the neurogastroenterologists, internal medicine usually can’t do much.” 😦 She did order a heavy metal panel of bloodwork for the next morning and suggest possibly a brain MRI to Dr. Shetler.
The next morning, I met with the morning hospitalist who told us that the case managers were still working on getting me a pump. Disadvantages of living in a non-urban area: there’s only one infusion company and it’s the “slow” one and it has shortish hours in our area. But thankfully it came through in the end and got me a new Kangaroo Joey at 6:30 on Friday evening. A registered dietitian also came by. She was pretty awesome. 🙂 We explained that I’d had a hard time tolerating feeds greater than 50-55 milliliters per hour and found it impossible to handle feeds at 70 milliliters an hour. Since I had done well with Jevity 1.2 in the past, and they prefer to keep you on a formula if you tolerate it, she figured out a calculation that would work with those limits. It does mean 24 (or pretty close to that) feeding if I’m not getting much in by mouth. (Plus an additional shot of Beneprotein, either by mouth or in the pump.) She also calculated fluid needs, which was really helpful — when we did 24 hour feeding before, we had no idea what to do as far as fluid. This time, I have a snazzy backpack from the infusion company so I’m not confined to where I can push my IV pole around during the day. 🙂
I was discharged in the early afternoon and we hurried home (through increased traffic, sigh) to meet the pump. I started tube feeding Friday night and I’ve been continuing it since (with breaks for showers and to change bags, etc.) I even went out briefly with the bag yesterday afternoon, but mostly I’m taking it easy. I’m doing some clear liquids — Jello, white grape juice, and chicken broth with Beneprotein. (Each can has 32 scoops and my primary care doctor — whom I guess the CPMC docs contacted to write the prescription — wrote it for 99 refills. Love her, though I certainly hope I don’t need supplemental feeding that long!) I’m not really sure if I’m supposed to advance my diet further and I had a bit of upset last night, so I’m sticking to that for now. I might try some pureed soup later today….Probably a good idea since my weight is down further….:(
When it comes down to it, I’m still waiting for answers. If anyone has them, I’ll certainly take them!