So Much to Be Thankful For

After six months and too many doctors to list (believe me, I tried)…

I have a (at least partial) diagnosis:


After many, many inconclusive tests, I found out the results of my electrogastrogram on Tuesday. Apparently, my stomach muscles contract too strongly and violently 25% of the time before I eat and 50% of the time after. This results in the nerves and muscles only being able to work together 9-12% of the time, which is “extremely low” in the words of my doctor. I’m still beginning to understand exactly what this all means, and I have a lot of questions to ask my doctor the next time I see her, but it basically amounts to my having a gastric dysrhythmia. You know how you can have a cardiac dysrhythmia, where your heart beats in an irregular pattern? It seems as though my stomach “beats” in an irregular pattern.

(I should probably clarify something at this point: my friend Janna sent me this link about a woman’s experience with tachygastria. It seems as though some doctors use tachygastria to refer not to an electrical rhythm viewed on an EGG, but rapid gastric emptying. Rapid gastric emptying is also called dumping syndrome. This isn’t what I have, except when my small bowel decides it wants to play at this because of feeding tube intolerance. My stomach empties in a normal amount of time — 7% of solids remain at 4 hours, and 48% of liquids at 1 hour. However, the kind of tachygastria I have is seen in the majority of patients with gastroparesis, the condition where your stomach empties slowly and that the doctors initially thought I had back in June/July. So, while my stomach empties normally, there are a lot of similarities in what I’m dealing with and what someone with gastroparesis deals with and the treatments overlap.)

Heading down and excited to get answers!

The big question, of course, is how to treat this. There are some medications to try that calm and reorganize the nerves. They also help with the pain and discomfort — despite the results of my Barostat, the EGG did show some visceral hypersensitivity. (I’m not sure if this is because I have it intermittently or if it’s because the overactive nerves are in my small intestine instead of stomach or…?) The only problem is that most of these drugs have cardiac side effects…including QT prolongation. My EKG showed a prolonged QT interval, which may have just been the result of some of the meds I was on. But it may also have been why I often got a funny feeling in my chest after getting IV Zofran (previously chalked up to the medicine taking its effect or the impact of rehydration, etc. since I don’t exactly look like a cardiac patient), why my heart monitor went crazy moments before I started vomiting after my last endoscopy/Barostat, why I had palpitations from a non-QT prolonging med with cardiac side effects….When I told Dr. Shetler about my reaction to the medicine B. at the beginning of my appointment, she immediately excused herself to call a cardiologist friend for a consult. The cardiologist said she would need to see me before determining whether I can take any of those medications. If not, there’s another medication we can try — it’s one originally developed for seizures — but we may need to get neuro clearance for that one.

There’s also a chance that my stomach will reset and go back to normal on its own at some point. It might just need more time. We don’t know what caused the tachygastria, but a viral cause seems pretty reasonable. (It’s not exactly rare for viral gastroenteritis to cause things like gastroparesis, for example.) Dr. Shetler said it might be six months or a year if this happens, though. We’ll definitely be trying things in the meanwhile!

If nothing else works, this condition does qualify me for placement of the Gastric Electrical Stimulator. It’s basically a pacemaker for the stomach, to replace/aid the stomach’s own natural one. Placing it is a major, and not uncomplicated, surgery, though, and it leaves a device in you permanently. Dr. Shetler said that while Cal Pacific is one of the places that has pioneered the use of this device and has done a relatively large number of these procedures (170 in the last 10 years), they don’t like to place them in younger patients. It’s a worst case scenario, but it’s nice to know that the possibility exists if it becomes absolutely necessary. (There’s also the possibility of a temporary stimulator, which my doctor thinks I would be a good candidate for if it came to that. In that case, they place the stimulator endoscopically and keep you in the hospital for a week or two to see how it’s working. BUT in addition to telling you how a permanent one would work, just that short placement can reset your stomach’s electrical currents for months, years, or even forever! That would require getting insurance and NIH approval, though, so not sure how likely….

I’m incredibly grateful to finally have some answers, to finally have a test that reflected how sick I am. I really don’t want to be ungrateful, but there’s a certain point at which negative test results aren’t quite good news. It would have been easier to treat H Pylori ulcers or celiac or SIBO than to remain in mystery diagnosis land. Granted, there are things I think about how lucky I am not to have literally every day — cancer is the big one. But the uncertainty has been baffling. My doctors have been cognizant of how ill I’ve been and haven’t questioned it — malingerers don’t throw up through cocktails of IV anti-emetics or lose weight despite tube feedings — but it’s still nice to see data. And it’s an incredible relief to have some direction to go in, to have a PLAN. It may take a while yet, but  I’m going to get better and have a long and healthy and productive life. The worst case scenarios with all of this may include some not-so-brilliant effects, but they don’t preclude that, which is the most important thing.

Also, my increased stomach pain/cramping/diarrhea are probably from not tolerating the tube feeding very well. Jevity is one of  the more difficult to handle formulas, apparently. I’m supposed to be switching to Peptamen. Of course, despite getting all the calls in last Wednesday and getting orders from my pcp and all that, I still haven’t switched. Insurance has to approve it, which can take up to five working days, and there was the holiday….I understand that everyone needs holidays and vacations and weekends and whatnot, but I find it kind of frustrating that this delays getting my formula when it’s my only consistent source of nutrition. Anyway, I’ve still been getting Jevity, but hopefully we’ll get a call from the infusion company later today and I’ll be able to switch to Peptamen tonight!

I also saw the neuromuscuar specialist for several hours before that appointment (probably some kind of periodic paralysis, but nothing too troubling), ended up in the ER with a clogged tube that had to be replaced, and had a cardiology appointment (this EKG was good but I’m going to have another test and monitoring if I start the meds.) For the sake of getting this post up some time this century, I’ll try to write about those later.


What Doesn’t Kill You (Makes You Stronger)

It’s a cheesy pop song, but the sentiment is always a helpful one to keep in mind, and I’ve been listening to this over and over. (I’ve been listening to quite a bit of music lately, as it’s nice to have some other sounds to cover up the whirring of my Kangaroo Joey pump.)

I’ve been writing about my experiences with this illness quite a bit lately, something that a number of family members and friends have encouraged. It provides a record and a way to organize my thoughts and express my feelings. And between my blog and my journal entries, it might become something. It’s perhaps hubristic to  think it at this point, but maybe I’ll write a book about my experience someday. (Writing books seems to be one disease that I have a clear family history of, anyway.)

Here are some (lightly edited) selections from my journal:

11/12/12 (at Cal Pacific, before and after my appointment)

It’s funny, going into this appointment knowing it won’t provide complete answers. At least this way I won’t be disappointed. More progress on the search is always good.


I counted and this is my fifth time here, and the fourth in two weeks. Pretty “good” considering we don’t live here.


In the waiting room at Dr. Shetler’s office now. It’s funny how they always have you fill out the symptoms sheet — I’m not sure if you’re supposed to put them for currently or in general or ever…? Presumably it would be currently (thought that begs the question of how currently), but it includes symptoms like “ever refused for a blood donation.” I did a sort of mix, I guess. (It’s not like I’ve had a latex reaction since Thursday, but I circled latex sensitivity anyway.)

I feel like I spend about half my life in waiting rooms and I’m still not quite sure what to do in them. Writing a private journal is a kind of odd answer, I suppose, but it’s working. I thought about crochet but I want to be able to get up quickly when they call me. I always feel awkward if the nurse has to wait.

The waiting room has quite a few people, but is quiet. I can hear my pump whir clearly. I think that’s a reason I’ve been playing so much music, and loudly for me. It still bothers me to hear the whirring during the day for some reason, even if I sleep through it easily. I hope the noise doesn’t bother anyone else too much. It’s not very loud, especially for those not right beside me. There’s nothing I can do about it, after all.

Wearing and carrying such a visible sign puts you on edge. You wait for someone to ask what it is. You wait for the stares, especially from children and elderly ladies. And you wait for someone to challenge your carrying a backpack into a store or to question “but you don’t look sick!” — those haven’t come yet, at least, and the latter actually arises far less with the tube than without. There are lots of different kinds of waiting when you’re sick, I’ve discovered, and they extend well beyond the eponymous room.


11/13/12 CPMC Pacific Campus GI Lab Waiting Room

So, to sum up yesterday’s appointment:

  • My weight is down a little more = bad (Knew that….)
  • I definitely have a long QT interval
  • Which means I can’t take even more meds…
  • Including ZOFRAN!
  • Also all TCAs and Erithromyacin (Explanatory note: non-GI meds that are used for quirky neurogastroenterological and motility issues, somewhat experimentally)
  • (But if we get desperate, I can go to a cardiologist to see if I can get clearance)
  • I am going to start B. (a med we’re using sort of experimentally) slowly tomorrow
  • I’m supposed to call Thursday’s morning to let her know how it’s going. (Did that)
  • (“You know you’re very sensitive to drugs when….”)
  • Stillsobaffling
  • I need an EGG to see how the electrical currents of my stomach are off…
  • (because they must be)
  • ….so we can see if they match any known patterns…
  • …and how those were treated.
  • She wants to see me more frequently, ie next week. (Tuesday)
  • And for me to have gained TWO pounds by then. (That’s going to be tough unless I start keeping, you know, actual food down.)
  • I’m supposed to try small volumes of food 3x day.
  • Then the idea is to try to work to where I only need the tube for night feeds…
  • …and then not at all!
  • Next week we’ll decide about an antroduodenal manometry test (which is not the same as the Barostat I had, though similar) to check my small bowel function
  • But my response to feedings doesn’t necessarily seem to fit with CIP (Chronic Intestinal Pseudo-Obstruction)
  • (The loose stools are normal)
  • And she’s concerned about radiation exposure
  • (Since I’ve already had quite a bit of it)
  • She’s reluctant to expose me to more if it’s not necessary
  • So, basically, I’m pretty baffling
  • But there are still things we can try
  • We didn’t talk about the paralysis
  • But I think we will next week
  • If only because I plan to bring it up
  • Since that is till in play and needs to be addressed


We saw Dr. Shetler as we checked in. She asked how last night went and we told her not fabulously — hard/projectile vomiting followed by an hour of paralysis. Oh, because, yeah, another one of those last night. We think they’re more likely to happen after exhausting days, which yesterday was.


It’s funny, but it’s increasingly seeming like it’s not so much that they’re going to find out that I have Disease X or Syndrome Y as that they’re going to discover some new disease in me. And then invent a treatment for me. (I have confidence that they will.)



I have no idea how the test went. I watched the little squiggly lines move around – and they certainly moved a lot when I got nauseated — but I have no idea what they mean. Hopefully they do mean something and I’ll find out next week.

(Oh, and I threw up the Glucerna they gave me. Typical.)


11/14/12 Home

If it’s not one thing, it’s another.

Ostensibly, most of today was good. After all, I didn’t start vomiting until after dinner, keeping in breakfast, lunch, and afternoon snack p. o. (by mouth), all while tolerating (again, ostensibly) 50(!) ml/hour.

My intake:

1 bowl hot rice cereal (1/4 cup dry cereal cooked in 3/4 cup almond milk; maybe about a tablespoon of maple syrup)

3 TJ’s rice pancakes with raspberry jam.

1 small (6 oz?) bowl pureed soup + 1 rice cake

Jevity 1.2 at 50 ml per hour.

(Hey, look, I’m being all food blogger-y and listing what I ate all day! Sorry no photos, I’m sure you all are just dying to see an SLR shot of Jevity.)

Today was officially the day I started trying some “treatment.” I took 5 mg. B. 30 minutes before breakfast. I kept breakfast down, but I had a stomach ache after — not sure if it were the B. or volume or bolused water or…?

Rest of the morning was uneventful in GI terms.

While I ate breakfast, Mom got a phone call from Dr. Shetler. She talked to a neurologist friend of hers, because she is v. concerned about the paralysis, and he thinks they sound like seizure activity. She asked what kind of neuro care I was getting here (Mom said basically none) so Dr. S. said she was happy to refer me to a doc at CPMC. I got a call later from Pat the nurse at the motility office and she told me they were trying to get me in next week and would let me know on Friday.

I take this all as good news/bad news. Or rather, reassuring news/scary news. I have wondered all along about the projectile vomiting and pointed out that I feel weird before the paralysis sets in — before the vomiting, even, I sometimes have visual changes.


So. Dinner. It was a different pureed soup, this time a bit thicker, with more meat and veggies. The texture felt very heavy and filling — my stomach must have shrunken by now — and it was really too much for me to handle. It managed to be unappetizing despite a nice flavor. I didn’t even make it through half a bowl, though I really tried. I felt the need to “wash” the feel a bit and wanted more kcal and taste. I tried about 2 oz. of my dad’s root beer, well stirred to get any bubbles out. It was quite nice as something different.

Went to watch TV in the living room. I started throwing up. Okay, no one’s shocked, especially as I hadn’t been hungry for dinner. Then I started getting bad lower abdominal cramping and had to hurry into the bathroom. Considerably amounts of diarrhea (sorry if this is TMI! but I guess if it is, probably so is the rest of my health-related writing) — not just unformed stool, but progressively more and more watery, like with a virus, food poisoning, etc. Okay. Detached from the pump (couldn’t take it with the cramping.) It continued. Vomited more, got just to stomach juices at some point. According to plan, we got some rehydration in via the tube, but I could only tolerate so much.


11/15/12, home

427 ml overnight. Also, I threw up overnight. (Looks — and tasted — like bile.) It took forever to get back to sleep and I had some bizarre dreams.

More diarrhea this morning. And I feel like even more is coming. I’m currently disconnected, but I’ll have to reconnect in a short while. It’s not as bad as throwing up all the time, but the volume is a bit…troubling.

Weight is down. OMG, I have to gain 2.6 pounds by TUESDAY! Hopefully some of yesterday’s loss is just water/hydration loss from last night. This is a new all-time low (for being a grown up and this height and all.) Not good at all…I’m not sure how to reverse things and go in the other direction unless I’m able to eat more (and absorb it.) I don’t know what I’d do without the tube right now.


The big question is whether the B. is causing, or aggravating, any of the diarrhea. I’ts certainly not a common side effect from what I’ve seen, but I’m also using it in a weird way for a weird thing…and I just have weird reactions to drugs in general. I guess we’ll talk about this on Tuesday + I have to call the office to check in in a little bit.


So, yeah, it adds up to quite a bit!

In case anyone’s curious, this is my tube and backpack set up. The tube goes from my jejunum (small intestine) up and out my nose and then connects to a line leading to a pump and feed bag in a backpack.


In bookish news, I’ve been reading the Montmaray Journals. I think I first saw them mentioned by Claire. A delightfully literate (without being mousy) heroine, princesses who actually do things, fictional royalty and fictional European countries,  late 1930s/1940s in Britain, London, aristocratic Bolsheviks, and siding with the Republic in the Spanish Civil War = right up my alley! I finished the third and final book, The FitzOsbornes At War, last night and am a bit sad to be through the series. I’ll just have to reread!

Grey’s Anatomy has an episode about a patient with Cyclic Vomiting tonight. I don’t usually watch the show, but I’m excited to see it. It should be great for awareness! You should all watch!

NJ Tube 2: Electric Bluegaloo

From my hospital room at CPMC. See the shiny blue tip?

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.

Waiting for it to begin. I wasn’t feeling fabulously well by this point….

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.

View from my room — my roommate very kindly let me come over to look and take a picture.

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. 🙂

ALL THE hospital bracelets. and yes, they gave me two allergy ones….

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!

Scope Me Baby, One More Time

(Hey, it’s better than Schlag mich Baby, noch einmal, right? Right? A little bit at least?)

I made it through the first round of testing in San Francisco! I survived my second endoscopy, without any crazy improbable drug reactions!

Like I posted before, I had my gastric emptying study on Wednesday. I ate the radioactive eggs and drank the nuclear water and it all left me stomach in a timely fashion according to the estimates. We don’t have official numbers from the radiologist yet, but my gastroenterologist said they looked good, though were subject to change. And I didn’t throw up during the test, which is the key thing.

In a way, we didn’t really learn much from that test. I’d had one before in Chico, though it hadn’t measured liquids, and it looks like the numbers are going to end up right around the same as they did in that test. But we will have ruled something really important out: gastroparesis. A girl in my town had gastroparesis and she ended up having to get botox shots in her stomach (in Ohio, because she was under 18 and not many places treat it) and at CPMC they insert pacemakers into people’s stomachs for gastroparesis. At least cyclic vomiting is usually treated without surgery. (I’ve already unsuccessfully tried the main drugs they use to treat gastroparesis, with bad side effects and not much difference in my stomach.) What I did learn is that I really need to be realistic about what I plan to do in the hospital during long tests or when I’m sick. I.E. don’t bring 800-page books about crazy English toffs. During the half hour, hour, and two hour long breaks, I wandered around a bit, went to the cafeteria with my parents to get food (though that got old because I couldn’t eat and the smells were making me hungry), and sat around in the lobby flipping through magazines and looking at websites on my phone. It’s not easy to concentrate when there are lots of people talking and you’re nervous and everything. This time, when I’m going down, I’m going to bring some audiobooks on my iPod and a crocheting project and some other low-energy-requirement entertainment.

At least CPMC has some amazing views.


The shot I wish I had gotten was when a transport guy wheeled me around a corner on Thursday and I saw the Bay, the Golden Gate Bridge, and a huge swath of the city from the sixth floor of the hospital (which is on top of a steep, very San Francisco hill. Um, how do people run in that city?!)

The test was done by noonish, so we headed back to our hotel room. We were staying in an apartment-style suite so we had a kitchen and everything, which was incredibly convenient for me considering that I can eat about three things. I was able to bring my own eggs and bread and crackers and turkey and juice and such and eat some of my meals there. That helped. I then rested for most of the afternoon — the test and the drive down the day before had taken a lot out of me.

Unfortunately, Wednesday evening I got sick after dinner. It definitely wasn’t the food, because I just had grilled chicken and cous cous and I’d had the exact same thing (same sauce, from the same place) the night before and been fine. Unfortunately, my stomach does not seem to allow me to go more than a couple days without staging an uprising…It was not fun, especially being in an unfamiliar place and knowing I had a procedure the next morning. I took solace in the fact that I would undoubtedly be getting an IV the next morning and I could get them to put a liter in while they were at it. And IV Zofran. I do not turn down IV Zofran.

The next morning I arrived at CPMC bright and early at six o’clock in the morning. I got checked in in the Stanford Building, which is a sort of annex off the main hospital. The weird thing was that when I checked in, the receptionist told me I owed almost 2000 dollars!!! They had not informed me of that when I pre-registered over the phone. (It turned out that it was just because insurance doesn’t automatically cover anesthesia for this kind of procedure — it normally only pays for Versed — unless it’s medically necessary and it had to review the medical necessity of my having monitored anesthesia care. Luckily, we got a letter a couple days ago saying that it had been approved. Documented adverse reaction to Versed = pretty obvious medical necessity for something else.) I seriously have no idea how people manage if they don’t have insurance — or even how many people manage with it.

I got taken back to a bed to change into the typical massive gown. They’re actually really awkward to tie when they get to a certain size. Once I was changed, my parents came in and a nurse came to start my IV. She had a lot of fun typing in my drug allergies, particularly when we told her Tega-Derm, which is the stuff they use to cover IVs normally. She said it was the only thing the hospital had. We even told her all the alternatives we have on a list my mom now carries to all these kinds of things, but the nurse said they didn’t have any. She ended up basically just putting on about ten layers of tape.

A transport guy rolled my bed up the sixth floor GI lab in the hospital, thus rendering my previous mine freak out about not having the procedure in the hospital utterly pointless. I met my new nurse, Aletha, who was with me the whole day and absolutely amazing. She went over exactly what would happen to me during the procedure (endoscopy, inserting a catheter with a balloon into my stomach, and then several hours of testing after I woke up.) Part of the testing would involve my having to drink a can of Ensure, so we warned her that I have a slight (i.e. consistent) tendency to throw up every time I drink Ensure…or even just smell it because it’s going into my NJtube. She said she’d give me some Zofran before I had to do that part of the test to see if we could stop it. She also asked when I last threw up and when I told her it was the night before, she said she’d give me a liter after the procedure. 🙂 (My rule: if you’re going to put an IV in me, you’d better at least give me a liter. I’m looking at you, Enloe ER.)

I talked with both Dr. Shetler (who I swear has the best bedside manner ever — she was incredibly reassuring) and the anesthesiologist before the endoscopy. The anesthesiologist was a little concerned by my previous drug reactions and my weird paralytic episodes since. (My first exposure to him was hearing him exclaim, as reading my chart, “An adverse reaction to BENADRYL?!” That was reassuring. Also, I heard Dr. Shetler explaining periodic paralysis to him.) But once we’d explained what had happened in the past, he decided to give me Propafol and monitor me closely. In fact, even after I came out of the endoscopy, he kept checking in on me to make sure I hadn’t gone paralytic or anything.

I went into the room where they’d do the endoscopy and I think Dr. Shetler could tell that I was nervous (my systolic blood pressure was in the 120s, which, yeah, doesn’t happen so much.) Like I said before, she was incredibly reassuring and a great calming presence. She also told me I could have my mom in for the post-endoscopy testing. I heard her explaining to someone that they don’t usually let adult patients have someone in with them, but that it’s good to do it for the young ones like they do for the pediatric patients. I thought that was really nice of her.  The anesthesiologist came and gave me Propafol, I felt really weird for a minute, and then I was out.

When I woke up, I had a big tube in my throat and taped to the inside of my cheek. Aletha said most patients gag a lot at this point and they have to give them a med to stop them from doing so (so that they don’t disrupt the balloon.) I didn’t, for which I credit my NJ tube experience. After six weeks of that, you get pretty used to having a tube in your throat. I guess the experience is good for something after all. (Well, that and the whole, you know, medical stabilization thing.)

You can’t actually see the tube here. Or the EKG wires. And my oxygen nose thing is out. I felt like I had so much plastic coming out of me….Sorry about the sad face, I think I was in pain at this point.

We started with a part of the test where the balloon inflated with air and I was supposed to say whether my stomach hurt, felt nauseated, or felt full at various points. It was the part of the test designed to test for visceral hypersensitivity, I believe. It only hurt at the very end, when the balloon was the most fully expanded. I’m not sure if that means the test was positive or negative? I guess I’ll find out Thursday.

For the next hour or two, I just had to lie on my back while the test registered things. (Really specific, yeah. Sorry. I’m doing the best I can considering that I’m not even 100% sure which test I had or what it’s called.) I got some Zofran at a certain point both because I felt sick and to prepare for the Ensure.

My throat also hurt quite a bit — much like having the NJ tube newly in — and when I first tried sip the Ensure, I had a really hard time swallowing. However, unlike when I got the NJ in and just ended up sitting there crying and not really eating, I got pain medication. Aletha had to talk me into it a bit — I’m not a huge fan of meds, in case you couldn’t tell — but I have to say it was really, really worth it. Fentanyl didn’t even make me feel all that funny and it took away the pain. After it kicked in, I went back to the Ensure and got the whole can down. I had a good feeling, because with the oxygen blowing into my nostrils, I didn’t smell it as much. I didn’t even feel nauseated.

I stayed lying there for a few minutes until I suddenly felt funny. My heart monitor started beeping like crazy and the top EKG line went all wonky and my heart rate pretty much doubled. Then, all of a sudden and without any real nausea, I threw up all over my chest and hospital gown. I couldn’t sit up and my mom had gone to look at the EKG, so there wasn’t anything else I could do. She came back over and gave me a bag and I kept throwing up. (Side note: while I generally find CPMC a pretty fantastic place, their GI lab seriously needs to get better, um, receptacles. Big basins > little blue bags that don’t hold very much and have narrow entry points. You’d think a GI lab would understand these thing!) Aletha came back and gave me a shot of intramuscular Phenargan. I just kept apologizing because I felt really badly and worried that I’d messed up the study results by throwing up, but everyone kept reassuring me that there was nothing  I could have done. I mean, I’d even taken Zofran an hour before! IV Zofran. I got another half a liter at this point, just to ward off dehydration.

For the final part of the study, I got a shot of Imitrex, which is actually an anti-migraine medication, but apparently it does something interesting to your stomach muscles. Shortly after that I fell asleep. I got a nice nap in before Aletha woke me up and told me that the test was done. She said that Dr. Shetler said it looked like they got enough data in from before I threw up, so hopefully that worked out. She gave me a last hit of IV Zofran for the road and wished me well. She was very sweet and a great nurse throughout the whole thing. 🙂

The discharge instructions were pretty easy, and undoubtedly recognizable to anyone who’s had an endoscopy: no driving or signing contracts for a day, go to the ER if you throw up blood, advance diet as tolerated. Pretty straightforward, huh?

Yeah. About that last one.

Unfortunately, since Friday, when I came back to Chico, I haven’t really been tolerating very much. I’m in that awkward stage where I’m keeping down just enough food and drink to stay minimally hydrated but I can’t handle much. I’ve also been pretty exhausted — I slept a ton on Friday, and in the days that followed I’ve just lacked energy. I cannot wait for some answers and treatment to stop this horrible…cycle? Disease? Whatever you want to call it. But I’m hopeful that I’ll be getting the answers I seek very, very soon. 🙂 One more test and my followup on Thursday! I’ll keep you all updated!

Oh, and if you’re an American and live where the polls are still open and haven’t yet, GO VOTE!

Just a Quick Update….

So, how ’bout them Giants?

Fun fact: the Giants have won the Pennant once more than they’ve played in the Word Series. Anyone know why?

I’m in San Francisco right now, and from the images on TV, the parade was pretty crazy. Something like 1 million people showed up? Luckily it wasn’t near CPMC and we were able to get to the hospital alright.

I had my Gastric Emptying Study done this morning. It was actually my second one, since I had one done at Enloe in Chico, but this one included liquids as well as solids. Basically it involved my eating radioactive Egg Beaters and toast and the getting scanned after 30 minutes, 1 hour, 2 hours, and 4 hours. In between, we explored the hospital a bit and hung out in different waiting rooms. I read a few magazines and played around with my phone, but found I couldn’t really read books. It was too noisy, for one thing, and I was too tired and distracted.

The preliminary results from the GES (just unofficial numbers) look good, ie no gastroparesis. That’s what we expected, but it’s nice to have it confirmed.

Now I’m back in the hotel room resting up before tomorrow. Tomorrow’s the big day: the endoscopy and antroduodenal manometry/motility study (I’ve seen it called both things but they’re the same.) This is the one that took so long to schedule — because I need an anesthesiologist!!! I have to admit that I’m quite nervous about tomorrow. It’s not so much the procedure itself as the anesthesia that scares me. It’s my bad drug reactions that have forced me to have it in the first place (my doctor normally would have used Versed or Benadryl but…there are quite a few people who can attest to problems with that for me.) I worry  about having an episode, either of paralysis or vomiting. I…well, I won’t go into it all, for my sanity as well as yours. I’ve  already talked to an anesthesiology nurse on the phone and I plan to talk to a doctor as well before I get anything. It’s a really good hospital and, logically, I know that I should be fine. Just that I really shouldn’t read arguments over whether or not HKPP increases the risk of malignant hyperthermia…or Google malignant hyperthermia. 

I plan to do a catch up post about the last couple weeks at some point — there are lots of things I want to write about. Sure, there are some medical things (another infusion, a good GI appointment, another paralysis episode), but there are also fun things (some new food favorites, BOOKS) I’ll get there but it will probably be after another update about this stuff.

So, the game plan:
6 am tomorrow, endoscopy (w/anesthesia) and antroduodenal manometry

Next Thursday morning: Hydrogen breath test (for SIBO)

Next Thursday midday: follow up with Dr. Shetler

I have an Instagram now (whimsicaldesperation) so if anyone wants to follow me, if Im up for it I’ll probably update there and Facebook before anywhere else.

Back from the city

I seem to be on a slow posting/updating schedule here. Sorry about that. I’ve actually been back from my appointment at CPMC  since Tuesday evening, but I didn’t get around to working on this post until last night. (No particular reason why – the last few days have been pretty good, just a bit of tiredness.)

We drove down to SF Monday afternoon and checked into our hotel in Cow Hollow. We had dinner on Steiner Street – it’s a really cute area, btw. Of course, as my grandmother put it, we weren’t in San Francisco for the reasons you want to be in San Francisco….

Tuesday morning rolled around and it was time for my appointment at the Center for Neurogastroenterology and Motility. We planned to grab a cab and skip dealing with parking, hills, and traffic, but that didn’t work out, so we ended up driving to get to the appointment on time. It worked out fine – Cal Pacific’s Pacific Campus parking garage was convenient for the Center and it turned out to be an easy ten minute drive. We made it to the waiting area, a few minutes later than we had planned, but still in good time. Though, I do think rushing up the hill from the garage helped to elevate my heart rate a little bit, as my blood pressure was a tiny bit higher – and probably therefore better – than it has been of late. It’s also possible that a tiny bit of my old “white coat syndrome” reared its ugly (irritating) head again. (It turns out, you stop getting nervous about doctors’ appointments when you have them all the time and getting your blood pressure taken no longer feels quite as intimidating when it ends up happening every few days, or hours. True story.)

Upside of driving: the view from the garage.

The Center I went to is really well regarded in the medical community. As I’ve mentioned before, my local gastroenterologist, who practiced in the Bay Area until recently, recommended it as the best place to deal with these kinds of issues. Dr. Snape, one of the physicians at the Center (I think he may have been the founder? He trained the other two doctors, including the one I saw), apparently wrote the motility questions for the gastroenterology boards. The clinic is also one of the places that has pioneered the use of the Gastric Electric Stimulator, which is used to treat severe gastroparesis. I believe I also previously wrote that the hospitalist at Enloe told me that the hospital has sent people with Cyclic Vomiting Syndrome (CVS) to this clinic before and they’ve been successfully diagnosed and treated. Naturally, with all this information, I had high hopes going in.

The good news is that I had a really good appointment, very much like Dr. Shetler (the gastroenterologist I saw), and still have high hopes for future treatment. The slightly-less-good news is that it’s still going to be a while before I actually get any of that treatment.

Before I went down, I had to fill out something like 50 pages of paperwork. I’m not exaggerating when I say that it took an hour and a half, with my parents’ help and frequent cross referencing of my calendar log, my journal, and bills. Aside from the typical questions about insurance and the by now very familiar things to sign, there were far-ranging questions about everything from family history to waist size to total body symptoms to detailed questions about my GI tendencies. Sometimes things were difficult to know whether to answer. Should I say yes or no to a question asking whether I’ve had difficulty swallowing, when my only difficulty swallowing has surrounded my tube? Should I circle “ever previously refused for a blood donation” in the long list of possible symptoms, when I was only turned down for not weighing enough, and three years ago at that? How distant of relatives count for family history? (And let’s not even go into the judgment calls required in filling out the Rome III part where the questions asked about frequency….) One thing that was helpful for me in filling out the forms was that it prepared me to be able to answer Dr. Shetler’s questions during my appointment.

And she certainly had lots of them. J I really liked her – she had a very reassuring bedside manner and seemed genuinely interested in and concerned about my case and me. She asked very precise questions, which is always helpful. We talked a lot about exactly how often I throw up, how I feel in between, what I’m vomiting, what does or doesn’t seem to precipitate things, and my other symptoms. We talked quite a bit about my “normal” stomach pain and that’s changed recently. I truly appreciated that she was interested in this, as well as in my obviously more pressing nausea/vomiting/weight loss situation. It does seem like it’s mostly a dietary issue (lactose and so on). We spent a considerable amount of time on my history – both of the time when I was acutely sick when I was eleven and twelve and my sort of mini “episodes” in between. (I told her about how I always seem to end up with an upset stomach and vomiting when I get colds, for example, and my getting sick two days after my double whammy of an allergic reaction to mushrooms and an allergic/adverse reaction to Benadryl in February.) We also discussed the medications I’ve been on and my reactions to them and she assured me that anything she tries me on will start with a very small dose. She confirmed that there’s no reason for me to take Reglan or Domperidone at this point, particularly given my side effects.

I didn’t walk out of the appointment with an official diagnosis. Dr. Shetler did say that it sounded like I had a lot of features of CVS, but that particularly as it’s a clinical diagnosis, she needs to rule out some other things first. I have to have another gastric emptying study done at CPMC and a breath test for small bowel bacteria overgrowth (SIBO). She didn’t think it was really gastroparesis, given the way I have good days, the way that I will sometimes wake up vomiting bile, and the way that my emergency room visits have gone, but she does want to be sure before treating me for anything else. She also wants to do another test (I think from looking at the center’s website that it’s called an antroduodenal manometry) that will look at the way my stomach relaxes and contracts. That test also involves another endoscopy. I told her about my past endoscopy experience and she very quickly turned to look at how much Versed I’d been given and said that it was a good amount and that it was a good thing I had Versed listed as one of my allergies. When I told her that I’d had a similar reaction to Benadryl recently, she said we’d have to have an anesthesiologist to do the endoscopy. I won’t be under general anesthesia, but I’ll have some other form of sedation that requires an anesthesiologist’s administration and monitoring. I guess this means I won’t become  “The Versed Girl” at another hospital!

It might have been about that time that I told her that, in addition to the reactions to Versed and Benadryl, I’ve had two other episodes of the paralysis part of my reaction, at least. I told her that I’d been told that they might be a form of atypical migraine or a reaction to one of my medications, but we hadn’t really figured that out. She said that that was alarming. I’m not sure how to write this next bit without coming across as complaining, which really isn’t how I intend it, but it’s really hard when doctors say things like that. I don’t fault them at all for doing so, but it’s just a difficult thing to hear. Of course I felt that way, going through it, but hearing it from a medical professional makes it all the more troublesome. This issue needs to be looked at along with my other symptoms, but I’m not entirely sure who’s going to be looking into it. (I’m basically collecting doctors here at this point.)

So, remember the downside? Dr. Shetler has ideas for CVS treatment, but they depend on ruling other things out. (She also advised me to follow a gastroparesis-type diet – low fiber, low fat – until we can rule that out. Seriously, I can eat about twelve things at this point.) Ruling those things out looks like it’s going to take until November 9th. Yes, over a month more. It was difficult to schedule the test involving the endoscopy, as the anesthesiologists were all booked out. My hope is that someone will cancel and I’ll get in sooner. (The other tests are easy to schedule.) I reassure myself with the knowledge that all of these tests and treatments will eventually leave me not only as well as I was before May 18th but actually better.

There was another big thing we talked about at my appointment, and that Dr. Shetler was concerned about, but I’m not quite ready to discuss it here. I have appointments with my gastroenterologist and primary care physician next week and I need to talk to them first. But, if all goes well, I may have something exciting – something I’ve been waiting for – to announce at that point. J

Another dressing change today. It’s bulkier, but more secure, so I actually feel it less. Then again, I always feel the dressing changes less than the old pieces of tape, since by the time my the tape’s changed, the old piece is pretty greasy and frayed. I appreciate what the tube has done for me, but I’ll be very happy when it’s out. (Full body pic shows my nose before. If you, you know, squint.)