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.



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:



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. 😦


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.