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!


My (nose) laid bare



Notice anything different?

Yes, this Wednesday, I got my NJtube removed! In my last post, I mentioned that there was something I was hoping to be able to announce. Well…voila! After six long weeks, I no longer have tubing sprouting from my face. My pre-albumin levels are back solidly into normal territory and I’ve gained four pounds. (Hopefully I can do the rest on my own.) As annoying, even painful, as the tube was at times, it definitely served its purpose. It helped to stabilize me and start getting my weight up.

Removing the tube was far easier than putting it in. It was a little uncomfortable, and there were even a couple of seconds of pain, and it felt a bit weird in my stomach, not just my nose, but all in all, it was a quick and easy process. (Basically, the intervention radiologist pulled it out at a certain angle.) The tube looked pretty gross when it came out but I could sort of see why my throat had been hurting a bit more lately. Here’s to never having one again!

So, for the first time in six weeks, I can:

  • Wash my entire face
  • Roll around in bed any which way I want, without worrying about strangling myself, pulling the tube out, or clogging the line
  • Walk outside without having people stare
  • Not have a sore throat or nose

My tube’s absence actually makes for quite an adjustment. I still reach up and expect to touch it or go to sleep and have to remind myself that I don’t need to worry about it. I go outside utterly conscious of how I don’t need to be self conscious. I look at my face and I’m not quite sure what I see. It may sound strange, as I only had the tube for six weeks, but I don’t quite recognize myself. Do I look different than I did before? I don’t think anyone else notices it, so probably not. I’m just not used to seeing my face. Because while the tube and the tape only literally covered maybe a fifth of my face, it was what I saw, to a large extent. Now I see…me? It’s an adjustment I’m glad to be making, anyway.


Does this dressing change make my nose look fat?

Much needed. After a failed attempt to change it at home with my mom’s help, I went ahead and got it changed by a nurse in the radiology department at Enloe on Tuesday. I thought I’d be able to do that at the radiologist’s office, but they sent me in to have it done by a nurse at the hospital. (A brightness in all this sickness: the medical personnel I’ve dealt with have been fantastic in so many ways. More on that another time.) The nurse managed to remove the remnants of the old dressing from the tube, though he had to use a scalpel. No wonder my mom and I struggled!

I like the new set up. It feels more secure than the old one and I notice the dressing less. The last thing I want is for the tube to come out accidentally. (Mainly because the real last thing I want is to have to go through the insertion process again. Or to get sicker.)

At this point, you might be wondering – or have resorted to Googling – what an NJ tube is. A nasojejunal snakes through one’s nose, down the esophagus, beyond the stomach and through the first part of the small intestine (duodenum) to land in the second part (the jejunum.)

I get fed for twelve hours per day, mostly overnight, via my NJ tube. I have a prescription for a special formula (Jevity) that provides me with necessary protein, carbs, vitamins, pre-biotics, and, most of all, calories. The tube goes into my jejunum, rather than stopping at the stomach like the more common nasogastric (NG) tubes because my problem isn’t with eating, but rather with keeping food down. I’m still eating as much as I can in addition to the tube feeding, but the tube provides a supplement and back up. There are great days, like Tuesday, when I get in three meals and some snacks. There are also days like Monday when I keep in some lime jello and a single cracker. Or less. The tube helps.

I’ve had the tube for a little over a week now and it’s been a trying process.

Hooking things up. My parents rock.

To begin, it hurts. A lot, at first. Maybe I’ve become a wimp, but the physical pain from the tube had me in tears on my second and third days with it. My sore throat was worse than the pain from having my wisdom teeth out, for comparison. I do think this was a slightly abnormal experience for a few reasons. First, the insertion process was pretty difficult – it took the intervention radiologist longer than he said to expect – and that involved a lot of scraping in and out. Second, there have been awful fires nearby and the air is smoky, especially in Paradise, the town where I had the tube put in and met with a dietitian. Third, I’ve been dealing with a sore throat anyway, as part of my lovely condition.

It can also hurt to feed, depending on how it’s done. The first night, before we got the pump, we attempted to push in Ensure with the help of a home health nurse. That’s fine for NG tubes, from what I understand, since it’s just like drinking eight ounces, but it’s awful for NJ. My lay understanding of the matter is that your small intestine usually only receives foods a little bit at a time and when it gets more, it starts singing about revolution. Or at least mine did – dizziness, cramps, diarrhea, vomiting, all that good stuff – and I’ve heard it was a pretty typical experience. The pump feed goes considerably more slowly, and we’re inching it up day by day “as tolerated,” but sometimes my body forgets its Montessori raising and grows intolerant. The last couple of days we haven’t been able to raise the feed, unfortunately.

My pump, my pump, my lovely little pump

But there’s a less physical kind of discomfort that’s no less real. I hadn’t expected it, much like I hadn’t expected it to hurt like it did. The reality is that I have a tube sprouting form my nose and tape holding it in place. Everyone can see that and an awful lot look.

I know it’s not the same, but this tube has given me a tiny glimpse into the lives of those with visible disabilities.

Children stare. They often look worried. Babies stare less, other than in their usual way. I don’t think this is just self-consciousness on my part, since I’ve noticed a distinct difference between adults and children.

Adults smile at you more. Strangers can be suddenly very nice. Most, I think, kind of ignore it.

Visibility takes away your choice. You can’t just opt for medical privacy. If you run into someone you haven’t seen for a while and he or she asks how you are, you can’t just say “fine, thanks.” You have to tell the whole story. Having the tube forces me to come out.

In medical settings, even casual contacts know, or assume, that you’re the sick one, despite being young and otherwise fairly healthy looking.

Of course, I also know that it’s temporary. It’s a matter of a month or two, hopefully. The relief on knowing that is immense, especially in the face of the pain. People won’t see me this way forever and I’ll get my choice back. Some people don’t have luxury.

Still, having this tube has made me think.