So much for regular updates….

I don’t have a “too busy” excuse (obviously), just a not quite feeling up to it one.

Unfortunately, the switch to Peptamen wasn’t quite the miracle cure I hoped for. There are definitely some improvements — less gas, a less obnoxious smell of the formula itself, I’m able to get more calories in. (And they should be more easily absorbed.) All good stuff, don’t get me wrong. But the big ones — abdominal pain and discomfort, diarrhea, and nausea — are still around and at this point, they seem to be more symptoms of whatever I have going on rather than side effects of the treatment.

(Feel free to skip this next part if you’re squeamish.)

On Friday and Saturday, while things weren’t perfect, I actually thought that the Peptamen was beginning to make a difference. On Sunday, I quickly realized that wasn’t the case. Without going into too too much information, let’s just say that my body pretty much decided to put itself through a couple of colonoscopy preps. It’s a lot of fun Googling your symptoms and having the only thing that comes up be Cholera. (Note: I don’t have Cholera. I live in California, thank you very much. And the volume was only bad by normal standards; it didn’t reach Choleric heights, only appearance.) For a while I couldn’t even rehydrate through my tube without it being counter productive. I also had a lot of pain and when I touched my abdomen in certain places, I could feel things moving beneath my skin.

I made it through an echocardiogram on Monday! My cardiologist in San Francisco wanted one done but said that I could have it done locally so that I didn’t have to make a long drive for a relatively simple test.

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Talk about an amazing test! The images of my heart absolutely mesmerized me. I watched the entire time. Amazing to see all of my chambers and valves like that! I don’t know nearly enough about the anatomy and physiology of my heart (until recently it hadn’t been an issue), but the tech was great at explaining everything to me. He was also really cool to talk to because he went through heart surgery when he was my age and could relate to being “too young” for dealing with health issues. He said that going through what he did convinced him to switch to the medical field. 🙂

The pain made it almost impossible to sleep on Monday night (I was up every hour) and feeding left me in enough agony that I turned the pump off for several hours on Tuesday, although the diarrhea had abated. After much dithering (not helped by being strung out from pain and exhaustion), I went ahead and called my doctors. I left a message for my gastroenterologist on her nurse’s voicemail asking what I should do if this recurred. I felt badly about calling, because I worried that it was too insignificant of an issue to be hassling the doctor about, but I went ahead and left the message anyway.

Wednesday was worse again, though not as bad as Monday and Sunday, and I felt a bit better overall because I’d taken Phenargan the previous night and managed to sleep for 11.5 hours. I figure that I must have really needed that rest. I kept the feeding on most of the day, except when my dear friend Joey decided to do this:

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Every five seconds. For forty-five minutes. At which point I turned it off, because I’d only gotten 2 milliliters of formula. (I was running it at 40 mls/hour.) My mom called Walgreens Infusion the company sent out a replacement. Paul delivered the pump that afternoon (he and I are becoming great friends.) It looks exactly the same and is also called Joey.

I was still in some pain, though not as bad, and having diarrhea when I got a call late Wednesday afternoon. Dr. Shetler had gotten the message from her nurse and was calling me back. She asked how I was doing and was particularly alarmed by the way that water seemed to make my diarrhea worse rather than better (which I guess makes it less likely that it’s a complication of the tube feeding.) She was pretty concerned about the developments and said that she had been reviewing my file. She said that I never seemed to have had a work up for Crohn’s disease and asked if that were right and if I’d ever had a colonoscopy or swallowed a giant pill camera. I told her I hadn’t. It seems we skipped straight to the motility testing and while I do have a motility problem (tachygastria), Dr. Shetler said she didn’t think that it explained the severity of my symptoms. It’s kind of ironic, because I’m on a couple of support groups for motility issues (I just joined The Gutsy Teen Lounge and it’s fabulous) and everyone seems to go through months or even years of testing for things like Crohn’s before their doctors even think of things like Gastroparesis or Cyclic Vomiting or Chronic Pseudo-Obstruction. There’s a really high level of awareness of these kinds of issues in this area, which is great, but it means that it may turn out that we jumped into that area too soon. I’m not sure that I think Crohn’s is all that likely — I don’t have a fever or anything and while some of my ethnic background predisposes me I don’t have any direct family history of it — but I think it’s a really good thing to check out. And just intuitively, it makes some sense that the issues with my stomach could be a self defense mechanism on the part of my body (trying to shield my intestines from things they don’t like.) I do know a number of people with Crohn’s, and even more who have a relative with it, so if by some chance I have it, I’d have lots of people to ask questions!

Then we talked about how to do the work up for Crohn’s and everything else I need. Dr. Shetler said that I need a surgically placed J-tube (that’s a tube that goes straight through the skin of my abdomen into my small bowel, rather than going through my nose like my current one.) I’ve already had nasal tubes for some time now and they’re really not good for you or sustainable long term. I’ve also been told that once you get beyond the recovery period from the surgery, the J-tube actually ends up being more comfortable. I’d like that!

Cassandra (my current and third NJ tube) may be gone soon!

Cassandra (my current and third NJ tube) may be gone soon!

I also need to have an antroduodenal manometry to see if and how my small intestine is working. (It could be that I have two motility disorders after all.) And to check for Crohn’s, I’ll need a colonoscopy and a capsule endoscopy (I’ll swallow a big pill camera.) If you’d told me a year ago that I’d need a colonoscopy at age twenty, I’d be seriously traumatized. Right now, while I don’t relish the thought, I’m kind of okay with it. A bit nervous, sure, because it involves going under anesthesia  (at least if I don’t want to become known as The Versed Girl at another hospital) and it’s a semi-invasive test and all that, but I have those concerns about upper endoscopies too. (And the one during the antroduodenal manometry will be my third since June!!! That’s crazy to me.)

The long and short of it is that Dr. Shetler doesn’t think I can safely do all of this as an outpatient. Prepping for a colonoscopy isn’t easy on the body at the best of times, but with mine it could be particularly damaging. Trying to do all these tests and procedures over the next month as an outpatient could well result in my losing another ten pounds, which I can’t even remotely afford to lose off of my already too low weight. Add in how complicated it is to arrange all of these when I don’t live in the area and my needs for follow ups with my neurologist and cardiologist and it all means that I’m going to need to be admitted to deal with all of this. I’m just not stable enough to continue otherwise.

I’m waiting for a call right now to work out the last of the details, but I’m probably going in Sunday morning. It was originally supposed to be last night, but we convinced Dr. Shetler and her scheduler to wait a few days so that I can go to an important family event on Saturday. I’m not sure how long I’m going to be in — nobody’s given me any details about that yet — but given how much I have to have done, I presume it’s going to be at least four nights and it could well be more, depending on how things are scheduled and how much time is needed between procedures. It could be through the end of the week.

I’ve never had a hospital stay like this before.  The longest I’ve ever stayed has been two nights and I’ve usually only stayed one night or even just 12 hours or so. Those have also always been admissions to get me stable (which I guess this kind of is, but in a longer range sort of way) where the point was to get me out as soon as possible. They’ve also been at a hospital walking distance from home, rather than 3-4 hours away. Anyone have any suggestions on what to bring or have on hand? Would it be weird if I brought my own blanket? Ideas for what to do while in there? Words of reassurance on surviving colonoscopy prep? (At least I’ll presumably get the stuff through my tube and not have to taste it…though I’m a bit concerned that I’ll overreact to it, given what happened on Sunday and Monday. I guess that’s why I’ll do it in the place where they can do IV fluids if necessary.) General hospital stay survival tips? Estimates of a reasonable number of books to take? (Hahaha, like that’s going to happen…if it appears to, it’s only because I’m cheating and loading up my Kindle like crazy.)

A huge HAPPY BIRTHDAY to my amazing friend Dorothy!!!! Wish I could celebrate it with you girl!!

Jordothy, right around the last time we were within 3000 miles of each other. :(

Jordothy, right around the last time we were within 3000 miles of each other. 😦

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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.