First, several people have emailed me privately to make sure that I’m okay after my last post. Yes, I’m fine, and I did go to my doctor the next day and got a prescription for Pristiq. Is it helping? Who knows. But I think it is. Unfortunately, it also seems to make me clench my teeth, so it’s causing me some pain as well, but I’ll live.
I went for a second opinion regarding the gastroparesis on Friday. I didn’t have any desire for a second opinion – I have full faith in my gastroenterologist and I think he’s amazing. He’s quite possibly the best doctor I’ve ever had and I’ve had a lot of really amazing doctors. But he wanted the second opinion for his own peace of mind, so I went down to Georgetown.
The doctor at Georgetown was okay, but not anything mind-blowing. She basically said that my doctor is doing everything right. The things that were stumping him were that I’m always nauseated, not just when I eat, and that I have significant and persistent abdominal pain. She recommended a brain MRI (he’d already done a CT, but she said an MRI might pick up a subtlety that the CT didn’t) to rule out other causes of the nausea. And she said that although there’s no physiological reason WHY gastroparesis should cause pain, it seems to do so in a lot of patients. Indeed, according to one study (published this year), 90% of study participants with gastroparesis reported abdominal pain. So, whether it makes medical sense or not, it is consistent with other patients’ experiences.
She did affirm that a gastric pacemaker is an option I can explore. Georgetown doesn’t do them anymore. The hospital made a decision to stop doing them some time ago, but she didn’t elaborate as to why. They recommended a doctor at Temple University who does them – and he sure does look like the man to go to. His CV is impressive and he has significant experience with gastric pacemakers. Still… I’m hoping my gastroenterologist knows of something more local. I’ll go to Temple if I have to, but sheesh. I’m still not sure it’s the right option. The doc at Georgetown warned that she’s seen her share of patients who have gotten the gastric pacemaker and have seen no improvement. She further noted that it seems (anecdotally) the patients who most benefit from the surgery are those with diabetic gastroparesis. I have idiopathic gastroparesis, which doesn’t mean it won’t work – it just means there’s no way to tell.
She completely agreed with my regular doctor’s approach to treating me so far, though obviously we’d all like it better if it were, you know, working. She said he’s got me on all the right medications at all the right doses, and there isn’t anything she’d change. I emailed my doc and told him that basically he’s a supergenius who’s doing everything right. We’ll meet this week to discuss next steps.
And, just for fun, I’ve got thrush again. Damn antibiotics.
ChezPerky 
Been thinking of you!!!
Would love to see you and the kids and meet Tobie. Are Sundays still best for you?
Pristiq is my BFF and I pink-puffy-heart it.
As to the gastric pacemaker and the likelihood of it working for idiopathic gastroparesis, I think there is every reason to be optimistic. Sure, they mostly see it successfully employed with diabetic gastroparesis, but guess what the leading cause of acquired gastroparesis is? It stands to reason that the majority of people seeking treatment, successful or otherwise, for gastroparesis, and ending up with the gastric pacemakers, are diabetics. The end.
Have you tried any of the motility drugs? I would NOT recommend trying Reglan since it can CAUSE depression and anxiety (plus it’s crap at improving motility anyway). I hear that you can sometimes get domperidone in the States from a compounding pharmacy for motility concerns, but don’t know for sure (fortunately you have a personal pharmacist who can probably advise you on that…); my husband is a former diabetic (Type I; he had a transplant to cure it) and suffered terribly from gastroparesis (which he said was VERY painful) and says domperidone is great stuff (he was on it for a short while a loooong time ago). Low-dose erythromycin is the best (and safest!) drug for motility that is currently available in the States IMHO. When my son’s idiopathic gastroparesis flares up we treat him with it and it helps him a lot.
I’m not mentioning these drugs because I think the pacemaker is a bad idea at all (I think it’s a very good one, actually), but I know you’ll probably want to put off surgery for a while due to logistics and am just trying to brainstorm anything that might help until you can do that…two people in my household of five are affected by gastroparesis and it’s one of those things I wouldn’t wish on a dog 😦
Oh you seem to have such a bad break. Love to you.
Oy. Love and strength to you.
Thinking of you and sending many hugs and good thoughts your way.
I’ve been thinking of you a lot the last several days. I have nothing to say other than I’m keeping you in my thoughts and prayers. Postive thoughts that the right combination of therapy and/or drugs will help you sooner rather than later.
In other news…I’m having a c-section on Thursday. The little one is stubborn like his Daddy and just refuses to move from the frank breach position. So, Thursday is the day. Bittersweet for me…two months from the day I lost my husband our son will be born.
Hang in there…