Jordan Eats Enteral Formula

It’s all about the Peptamens, baby!

Get jealous, people! I have a great supply of Peptamen 1.5! I’m actually not being facetious at all. I started bouncing around when I got a call this morning saying that insurance had stopped dragging its feet through bureaucracy and had approved my new formula. (It helped that I was on my morning “break,” where I flush my tube, wash out the night’s bag, and shower.) Peptamen is the formula that my doctors think I’ll tolerate better than my old Jevity, because Peptamen is “semi-elemental.” That means that the ingredients in it are already broken down. It’s therefore less likely to cause pain, nausea, vomiting, gas, diarrhea, cramping, etc. Sounds like a good improvement, right?

Hooked up.

The other handy thing about the formula change is that I’ll be getting 1.5 kcal per milliliter rather than 1.2 kcal/ml. That makes for a nice difference when it’s spread over 50 ml/hour for 24 hours! Hopefully this will help me gain weight more easily, as well as more comfortably. (Being able to sleep without waking up in pain should be quite the luxury.)

I’m thrilled and incredibly grateful for this change.

The last couple of days weren’t great, stomach-wise. I didn’t keep much down by mouth (after doing a bit better over the weekend) and had a fair amount of pain. It didn’t help that we went back down to SF for a cardiologist appointment on Monday (more on that later! I’m trying to space out the big, crazy, “this should be an episode of House” medical stuff with more daily life kinds of things) and those trips are always exhausting. Also the whole waking up in the middle of the night thing. Also the fact that my dear Joey pump, which has been doing a great job of not beeping at me in the middle of the night, has started doing so about an hour before I was intending to wake up.

In bookish news, I’ve been rereading His Dark Materials, and I finished The Subtle Knife this morning. It’s particularly fun to return these books now that I’m intimately familiar with so many of the sights in Oxford that they reference. On Friday, when I was in the ER (yeah, that stories coming as well — it ended with a new tube), I read Dodie Smith’s I Capture the Castle. It was fantastic and I highly recommend it! Part of me wishes I read it while high school-aged, just because I think it would have been one of those wonderful books that becomes a best friend, but a selfish part of me (if one can be selfish to one’s own past self) is thrilled to have it now. (See: reading the entire thing in the ER while waiting for the intervention radiologist to have time…on a slow day…when there wasn’t a crazy weight.) It’s one of those books that makes me question the assertions that chick lit and YA lit are new and depraved (I’m exaggerating, but not much) forms of dumbed-down literature. I think that I Capture the Castle has much in common with the best of both those genres, and it’s an intelligent, pretty wholesome in a non-preachy way sort of book. The narrator, Cassandra, is a 17 year old girl who lives in “not-so genteel poverty” in a decrepit castle in the English countryside, where she seeks to practice her craft as a writer by recording the events that transpire within and around her charmingly idiosyncratic family. Much changes for her, her older sister, and her artist’s model young stepmother when a pair of wealthy young American brothers move into the neighborhood. It’s a bookish sort of book and a writerly sort of book; there are literary references and jokes about writing and writers that anyone with aspirations to being one — or who has spent considerable time around one — can relate to. I’d particularly recommend it to bookish, writerish sort of teenaged (or even preteen, maybe) girls, who I think will find Cassandra a great “friend.”

 

 

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.)

***

Home

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!

19 Reasons Why I’m Happy

  1. Tomorrow is my birthday. I’m almost ridiculously excited about it, though I can’t put a finger on exactly why. I’ll admit that ever since I realized I wasn’t going back to Bryn Mawr this fall, I’ve been concerned that tomorrow would be difficult. It was supposed to be the first day of my senior year as well as the birthday where I reunited with all of my friends after over a year of being away for summer and study abroad. Now neither applies for me. But instead of feeling bittersweet about tomorrow, or even dreading it, I’m out right excited.
  2. This was my Saturday.

This may – and probably should – seem like a bizarre, counterintuitive, even disturbed reason for happiness. A day spent in the emergency room spent figuring out what to do with a stubbornly clogged feeding tube is never fun. However, it was a remarkably less painful experience than it could have been. We went up to the Feather River Hospital in Paradise again, as that’s where my gastroenterologist admits and we deal with most tube issues. The recently re-done emergency room provides an excellent set up, with a comfortable waiting area (genuinely!) and well-equipped private rooms in the ER. (I’ll appreciate whatever I can get, of course, but I am very much grateful for not having to reside in the hallway watching gruesome gurneys roll past while I’m nauseated.) I received excellent medical attention and the ER doctor quickly communicated with my GI to develop a plan of action. Moreover, every time I leave that hospital, I remark about how incredibly nice and happy everyone who works at Feather River is.

The best part: despite some fears to the contrary, I didn’t have to have my tube replaced! The radiologist managed to unclog it under x-ray. (Fun fact: They can now sometimes do bedside x-rays. While the openness of my tube had to be determined in an x-ray room, a tech was able to check for placement in my ER room with a rolling machine. I was impressed. Granted, she said she was only able to do it because of my size, or lack thereof.)

  1. Food, glorious food!

Very cautiously, I’m beginning to eat again. After a week of non-success followed by non-consumption, I started nibbling yesterday. (I actually started nibbling Saturday night, unsuccessfully, but I don’t want to talk about that.) It’s working, for the most part.

2. Reason 3 means that I should be able to spend some extra time untethered today.

3.My neighbor and friend Kerstin visited yesterday with her two adorable little girls.

Amaya wants the world to know that we’re twins because we shared a chair for this photo. And the 75 other attempts at a photo.

4. It looks like I’m going to be able to eat on my birthday. I set that as my goal when I first stopped taking in food by mouth, though I’ll admit that it was often expressed more as a desperate plea than a plan. It looks like it will actually work out.

5. My mom and I think we’ve figured out a way to make a cake I’ll enjoy without aggravating any of my myriad of allergies, intolerances, or sensitivities. I’ll update you on how that works out.

6.Amaya made me this fish decoration, which now brightens up my pump. Isn’t it pretty?

7. Ella joined in on the fun with a card. (And she’s writing! In German!)

8. My cat Duchess (and yes, she thinks/knows she is exactly that) has mostly gotten over her initial fears of the pump and the tube sticking out of my face and now likes to keep me company. As she’s doing right now.

9. I’ve taken to heart Ani’s suggestion about revisiting favorites among the childhood classics for reading material and I’m loving every minute of it.

A well-loved copy.

10. My new medicine is helping, thankfully.

11. Today feels like it’s going to be a good day. Fingers crossed it works out!

12. I’m talking to Dorothy! Love this girl.

13. I’ve said it before and I’ll say it again: my parents are simply amazing.

14. I’m managing to write fiction again. Just a tiny bit, and without really going anywhere, but feeling up for it at all is incredibly important to me. I have a friend who talks about how there are things we hold as fundamentally true about ourselves and how difficult it can be when one of those things is shaken. This is one of those things for me, and having it come back fills my heart with delight.

15. I’m happy I have this blog. I’m happy I have this outlet to express what I’m going through and this way to record it. I’m happy I’ve received so much support.

16. I’m grateful for my ability to navigate the medical system. I’m incredibly fortunate to have a family with the resources (which include intellectual, emotional, and temporal) to see that I receive the best possible care. As hard as everything is at times, it could be so much harder. I truly think of this every day — what if we couldn’t afford to pay for medications not covered by insurance? Or even frequent co-pays? Or insurance itself? What if I didn’t have family members with schedules flexible enough to enable them to spend days in the hospital with me? What if I didn’t have the ability to research my condition myself and seek comfort in my findings?

17. I feel like I sometimes complain a lot on this blog, which really doesn’t capture how I feel 95% of the time. This is a place to vent, a therapeutic outlet, and somewhere I’m confronting what’s going on in my life. But the thing is, I’m happy. Some of it stems from the fact that I am generally more of a happy person than not. But some of it’s because I feel comfortable in the knowledge that things are going to be okay.

18. One of the oddest things I’ve garnered from this week is a deep sense of security. The events of this week (and, yes, getting Reglan out of my system) have taught me that much. I’ve always known I have people who love and care about me, but I’m seeing now exactly what that means. I don’t have a cure or a magic bullet to heal my stomach, but I have medications that make me feel better and ways to feed me and, most of all, I have people who will make sure I get those when I need them. My parents, my doctors, my friends….I feel grateful beyond words.

19. This is my last day as a teenager. This is difficult to write about without resorting to cliché, and in particular cliché that can give the wrong impression of me. I was never a mall goth or a rampant Holden Caulfield quoter (though Salinger has been a favorite!) Aside from some more irrational moments of teen angst, I generally survived my teenaged years with the solid understanding that this, too, would pass. I didn’t feel so much that nobody understood me as that I just really wasn’t cut out for being a teenager. I didn’t have it bad; there’s no underlying trauma, no deep secret misfortune, or even receipt of high school bullying. (It’s pretty easy to avoid high school bullying when you, you know, don’t set foot in a real high school at any point during the four years….) For the last three years, my technical teenagerhood has been rather technical, anyway, as once you get to college things are different. (People dismiss the comparisons to Hogwarts as frivolous, but there really can be an arriving at Hogwarts feel to starting college.) I’ve grown into my own style. For the last year or two, many of my friends have been out of their teens, anyway, and we’ve begun to progress into the dinner party stage of life, in our own casual way. But there’s still something of a relief at having survived this decade intact and a sense of having arrived as I greet my twenties.

What I didn’t eat Wednesday….

Also the blog of the books I haven’t been reading and the places I haven’t gone and the things I didn’t do.

A lot of bloggers participate in this roundup called What I Ate Wednesday, showcasing their meals for that day or (more typically) one of the previous two, as well as typically talking about their daily activities.

Well, I didn’t eat this:

c. last Thursday. Also pretty much half of my good nights.

Or this:

c. Thursday as well.

Or even this:

c. Saturday morning

I mentioned in Monday’s post that, despite initially thinking Saturday was a good day, I got sick Saturday evening and had been feeling poorly since then. Well…that hasn’t really stopped. This “episode” has just dragged on (and on and on and on.) Barring a four hour window on Tuesday when I managed to get some medicine to work, I haven’t been able to eat anything. For the last couple of days, despite not being hungry, I’ve been trying at my parents’ behest, but it just hasn’t worked.

I’ve had episodes this bad before, but leaving aside the ones in Oxford (when I was still in the initial stages of this illness and had a body more able to withstand this kind of thing), I’ve always ended up in the hospital from dehydration by this point. The good thing about my NJ tube is that it has prevented that from becoming a necessity again. (Avoiding the hospital = very good thing.) But it’s also kept me kind of floating along just before that stage. I’d put on a few much needed pounds in my first week and a half with the tube, but in the last few days, they all came off. I’ve been popping Zofran like candy and while it has provided some relief, it hasn’t substantially changed things. (Zofran is the anti-nausea medicine usually given to chemo patients, for what it’s worth.) I tried another medicine that I’d had a less than fabulous reaction to previously (out of desperation, really) to no avail.

Knowing that things couldn’t continue like this, we contacted my doctors yesterday. The resolution that came last night.

1. I have a new medication, which I think will work.

2. I’m supposed to wait on trying food until I feel really ready for it, instead of trying every couple of hours. My doctor agrees that it’s just counter productive at this point.

3. I’m going to have feedings during the day, as well as at night, until I can eat some. I’m not getting enough in by only having it at night (as proven by the weight loss), particularly since my overly sensitive gut will only accept a slow drip.

I’m not crazy about the idea of being hooked up to the pump 22 hours a day. It restricts my mobility considerably and I’m usually happy to be rid of it. I won’t be leaving the house for the time being. But it’s much better than tearing up my esophagus and stomach or wasting away or being confined to a hospital bed. Hopefully, it will only be for a day or two.

Hooked up, yo. (Sorry about the wet hair.)

Reading has been difficult in this condition. I’ve found it difficult to concentrate. I reread a couple of light novels, The Second Assistant and The First Assistant. I read a bit more of Exile’s Return, but I’m really saving that until I’m feeling a bit better. I read Flight of Betrayal (written by a family friend; copy received for free), which was a quick read. It’s not very much considering the number of hours I’ve spent in bed not really doing anything. I don’t want to read anything too heavy and I don’t want to read anything too “precious,” if that makes sense. I’m saving the other Isherwood novella, for example, because I want to be able to savor it, to revel in it, and to really appreciate it. I’m not up for that right now.

Any suggestions for easy reads?

What do you like to do when you’re sick?

Love,

Jordan