ANyone out there with gastroparesis, other dysmotility disorders? I've recently been dignosed with SEVERE gastroparesis that is not responding to meds (erythromycin....can't take reglan:-(), plus full intestinal dysmotility (aka CIP--chronic intenstinal pseudo-obstruction), plus really bad GERD that is also not responding to meds (I'm mega-dosed on protonix AND pepcid plus every OTC imaginable)....which my GI says is all the same dysmotility problem.....I have sooo much pain and nausea and can barely eat or drink anything (which is BAD, since I ALSO struggle with an eating disorder!!).......anyone have any experience/help/suggestions/support??? I'm at my wits' end here.....

yes, things here are pretty miserable.

the intestinal dysmotility i've had most of my life (it's a long story, a diagnosis wasn't made until i was 17 and not confirmed until now, but i've had the symptoms since at least 4 (earliest i can remember) and my GI says that not getting treatment and self-medicating has probably made that worse:-(

the GERD started (or started to get really bothersome) about 2 years ago.....but we attributed that to my eating disorder, since GERD is a VERY common complication.....

the gastroparesis became unbearable about 3 months ago, when I started trying to re-feed myself (i suspect that I had it to a lesser extent before that....#1 I was restricting my food intake because of my eating disorder so I wouldn't have been as symptomatic of the gastroparesis, and #2 last summer when I was hospitalized for my eating disorder and going through re-feeding I experienced times when I SWORE that none of the food I was eating was being digested, but just sitting "backed up" in my stomach....).....

anyway, it's hard to tell what's caused what, or anything like that.....the CIP definitely has been with me since birth.....so the extension of the dysmotility to the rest of my GI track could be related to that.......or the GERD and gastroparesis could be complications from the eating disorder......there's also genetic links for both GERD (my brother had a fundoplication at age 14) and gastroparesis (my mother was on a J tube for 6 months for gastroparesis)....so, who knows.....bottom line is, my entire GI system is horribly broken......
but, bc of all the damage i've done to myself with have an ED for the past (almost) 12 years, my body can't handle it....I already have severe hypotension, arrythmias, bradychardia, and kidney problems....I'm supposed to maintain an intake of 10 cups of fluid per day just to stay off IV's (my body can't absorb fluids properly anymore)....which, needless to say, is NOT happening since the gastroparesis.....so now I'm blacking out at work again, my heartrate and EKG's are all messed up, my weight is dropping like crazy (when I needed to GAIN to begin with....)

I just don't know what to do with myself anymore.....:-P

I am also in NY......do you mind telling me what they were able to do to help you, in the end??

forgive my ignorance, but what are probiotics? is that something that is prescribed? would it interact with other meds? (I'm on an insane amt of medication for a variety of things).....
how long did it take to see improvement?

I wonder how that would affect/counteract the antibiotics I'm on as a prokinetic for gastroparesis? I'm honestly on sooo many meds, I'm wary of anything not FDA-regulated and/or heavily studied, b/c of so many interactions.....Also, if extensive testing has shown that the problem is nerve damage, would regulating the *contents* of my stomach/intestines make a difference? Just speculating.....
I have seen 2 probiotics mentioned on gastroparesis discussion groups, Ibergast and Tuzen....but, again, I just don't understand how they work...

well, my GI actually gave me Align, which is a probiotic, to try, but it DEF did not help....actually made the pain soooo much worse.....

Since last post, I've had a colonoscopy with biopsies (intended to rule out colitis-es that are not detectable in bloodwork), which revealed a prolapsed ilium (meaning my small intestine is falling into my large intestine and stuff is probably getting stuck there).....then I had a small bowel series, which was "not very conclusive" b/c my motility is sooo slow that the prep kicked in 5 hours AFTER the procedure, but between that and the colon biopsy results they *think* there might be a lipoma (fat tumor) inside the prolapse.....oy vey. My GI is wary to repeat the small bowel b/c the colonoscopy prep (combined with my already-messed-up body thanks to my ED) depleted my electrolytes so badly I ended up hospitalized on the verge of cardiac arrest.....she says I'm probably not a candidate for the camera capsule (don't remember what the official name is) b/c my motility is sooo slow that it might not go through....ARGH. Basically, she's stumped. I was on mega-doses of erythromycin for a few weeks, which gave me a slightly higher volume tolerance in my stomach (from half a cup to about a cup and a half, most of the time).....can't take the erythromycin long-term at those doses, tho....especially since my liver enzymes are now elevated (either from starvation or its not actually my liver but heart damage)....can't take reglan, can't take prepulsid or domperidone (the non-fda-approved ones that ppl w/ motility probs generally take....bc they have cardiac side-effects and I now am high cardiac risk). I wanted to appeal for zelnorm (which actually HAD helped me before they took it off the market), but again bc of my heart probs I won't get approved....

my PCP and ED docs are very concerned about my labs and nutritional status, and are planning to hospitalize me for my ED, b/c I'm at 80% IBW, anemic, and all my blood levels, electrolytes, protein levels, EKG's are out of whack....my PCP thinks that the ED caused the gastroparesis, tho the GI isn't as convinced (since I had the intestinal dysmotility my whole life, and my mother has gastroparesis), but admits its not helping.....I'm sooo nervous about having to eat huge meals again, and being in so much pain......and that there's NOTHING they can do about it!!

plus, now they want to send me for surgical consults about this prolapse and tumor---HOW d u get a fat tumor in ur intestine???? seriously, I am at a point that I feel like they should just stop testing me, bc every time they do they find another thing wrong.......:-(

Because of my gastroparesis I couldn't tolerate traditional preps, my GI gave me osmoprep, which is a pill prep (not covered by my insurance, sadly, and not cheap)....I drank pedialyte and powerade all day (actually, that's all i drink always....my electrolyte balance is screwed up always)....eh i take mirilax everyday it does nothing for me....they had me take magci as prep for the small bowel series and even that took twice as long as it was supposed to to kick in (THATS how bad my motility is....)

my GI is ambivilant about surgery b/c she said the prolapse could keep happening even with surgery it could happen again....but, she might refer me to a surgeon just for a consult "just in case"....

my GI wasn't especially hopeful about the probiotics, for the reasons i mentioned before---regulating the contents of my gi tract isnt the problem, its the nerves and muscles that are non-functional no matter whats in them....(thats why non-stimulant laxatives, such as miralax, dont do ANYTHING)....

as for the tumor....i think they want to confirm that its really there before they go in after it....they're just not sure how....i'm so medically compromised now, its really tricky.....*sigh*

You should probably send your records and set up an appt. with a motility specialist.
Dr. Rudolph in Milwaukee is a great motility specialist.
Dr. Nurko in Boston Children's
Dr. Yosef in Morristown

all three do the motility testing which cannot be done in most hospitals. These are the most accurate tests unlike the standard Delayed Gastric Emptying. This test can show you exactly which area is affected and these docs can help with a treatment plan.

If you need contact info for any of them, feel free to PM me.

Good luck.