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Appointment at JHU

Posted Jan 05 2011 11:11pm

The appointment with Dr. S at JHU was definitely worth the wait.  She had a lot of good thoughts for moving forward:

- First, she said not to lose hope that the gastroparesis may just resolve on its own over time with no rhyme or reason to it.

- She thinks some of the nausea is related to the gastroparesis and some may be related to hormone wackiness.  I have polycystic ovary syndrome (PCOS), which can wreak havoc on hormonal balance.  She’d like me to talk to my OB/GYN about getting back on metformin, which I’d taken before I was pregnant (PCOS is linked with insulin resistance, so metformin tends to help reduce the symptoms and restore hormone balance).  She’s hoping if I get that under control that it will help relieve the nausea.  She also noted that the PCOS is probably the reason I’m not losing weight despite barely eating.

- She said that with most motility disorders your gut is essentially “confused”.  Throwing up for 8 months while I was pregnant with Tobie probably started a vicious cycle.  She said your gut kind of gets stuck in a pattern.  The more you throw up, she said, the  more you throw up.  To that end, she wants to see if she can get me out of this pattern for now.  She’s suggested that I revert back to a completely liquid diet.  She said to try to drink 3-4 ounces of ensure/boost/carnation instant breakfast every 3-4 hours.  Even if I don’t like it, I should just think of it as taking medicine and force it down.    Fair enough.  While I wasn’t able to keep Boost down when I tried it before, I got some Carnation Instant Breakfast and Ensure and both are easier to stomach.

- Even though the botox wasn’t a miracle cure, the fact that it did any good was a great sign.  She said with the botox injections, if you hit the exact right spot, it can cure a person forever.  If you hit *near* the right spot, a patient can have relief for up to 3-4 months.  Unfortunately, there’s no map, of course, so there’s no way to know if you’ve hit the right spot until you do.  She recommends continuing the botox injections every 3 months.  I had my last botox injections in October, so it’s about time to try again.  She said not to add back in solid food until after trying the botox again.

- She gave me a referral to Dr. E who does their gastric pacer surgeries.  She said that by meeting with him now, we open that door so that if the other things don’t work, we don’t have to waste time waiting around for a consult with Dr. E.

- She’s ordered a 4 hour gastric emptying study with solid & liquid combined.  That’s scheduled for 2/25/2011.  She also ordered UGI/SB xray series.  That is scheduled for 1/19/2011.  She said both will give a better idea of where things stand now, but are also both typically prerequisites for a consult with Dr. Eckhauser, so it’s worth getting them out of the way now.

- She suggested changing my exercise routine to add in 3 10 minute periods of continuous walking.  She said the idea is to encourage gastric emptying any way we can, and gravity may help us out here.  This should be relatively easy to incorporate into my routine.

- She said to empty the Nexium capsules into applesauce and eat them that way.  She’s concerned that the Nexium could just be sitting in my stomach and not doing me as much good as it could be.

- Interestingly, she didn’t suggest that the narcotics are the culprit.  She asked if I really needed them: “would you be down for the count without them?”  Yes.  Then I should keep taking them, she said.    She just said to stop taking the narcotics and the domperidone (if possible) for 3-7 days before the gastric emptying study.  If I have to take the domperidone in order to guarantee that I can keep down the food for the study, then so be it, but it would be preferable to get it out of my system first.

Overall, it was a very positive appointment.  I admit having been skeptical that there was really any point to the consult – and I really expected her to say that I had exhausted my non-surgical options, but it was nice to hear that she had some simple strategies  to try and improve my quality of life in the meantime, even if the surgical options turned out to be the right answer in the long run.

I’ll be following up with her on March 3rd once all the other testing is complete.


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