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TOPIC TITLE: Gastroparesis and dysmotillity
Created On 5/21/08 12:48 PM
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bubbs96
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5/21/08 12:48 PM
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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.....


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"Recovery is a process, not an event."
Even when it doesn't look like it, I am trying, and I'm doing my best in the moment.
 
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chanieF
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5/21/08 8:03 PM
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oh my goodness; you must really be suffering. how and when did this all start? in what order did the stomach and intestinal problems present? I am wondering because, among other things, many GERD meds actually cause lower intestinal problems...
 
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bubbs96
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5/22/08 12:46 PM
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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


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"Recovery is a process, not an event."
Even when it doesn't look like it, I am trying, and I'm doing my best in the moment.
 
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ykb
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5/23/08 12:49 AM
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I don't know where you live but I once saw a motility specialist in NY at Cornell who seemed really ontop of the field and was able to pinpoint my issue and gets things back inorder again. ( my system shut down after a coloscopy and no one could figure out what was going on and why I was living on milkshakes and powerade for two weeks.) Only problem (for me) is he has since moved to Massachustes to become chair of their GI department. If you want I can try to get his contact info. You can PM me if you are more comfortable!
 
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bubbs96
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5/23/08 8:20 AM
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I am also in NY......do you mind telling me what they were able to do to help you, in the end??


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"Recovery is a process, not an event."
Even when it doesn't look like it, I am trying, and I'm doing my best in the moment.
 
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ykb
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5/23/08 2:57 PM
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There were two medications (unfortionatly) I don't remember what their names are that the Dr. wanted to use, one I couldn't use because of possible interactions with another conditions that I have, the other is newly approved by the FDA but used for many years in Europe but the Dr. didn't think that my insurance would cover it and I wasn't able to afford it (I was scheduled to have surgery two weeks later that I had to pay for 30% + of the Dr's fee) Therefore, he ended up putting me on probiotics (I think it was called Align, made by Proctor & Gamble) and that did the trick B"H.

Hatzlacha Rabbah,

Refuah Sheleimah,
 
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bubbs96
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5/28/08 8:41 AM
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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?


-------------------------
"Recovery is a process, not an event."
Even when it doesn't look like it, I am trying, and I'm doing my best in the moment.
 
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ykb
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5/28/08 6:15 PM
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probiotics is used to counteract the effects of antibiotcs on the GI system. Antibiotics kill off all of the bacteria in the body including the good bacteria in the GI tract. There are some GI Drs that are starting to use probiotics to treat IBS and the like because it works to keep the good and bad bacteria in balance. The problem with probiotics is that it is NOT prescription and therefore not FDA regulated so any company can put anything into it and claim that it does anything. My doctor said that he only uses two companies because they were clinically proven to work. ( later I was told to use probiotics for a gyn. issue and this company did not do anything for that. I am now useing Healthy Trio by Natren that I order online directly from the company which works for gyn issues as well as GI issues.)
 
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bubbs96
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5/29/08 12:59 PM
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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...


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"Recovery is a process, not an event."
Even when it doesn't look like it, I am trying, and I'm doing my best in the moment.
 
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ykb
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5/29/08 8:25 PM
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Inorder for the digestive system to work properly it needs a correct ratio of good to bad bacteria. If there is too much bad bacteria (there is an disease, infection etc.) the system will not work properly however if all you do is give antibioitcs (even for a bacteria in other parts of the body), the antibiotics kills off all bacteria even the good bacteria and you end up with not enough good bacteria and the system does not work properly. A study this summer discovered that the appendix which was thought to not have any functional purpose somehow regulates this good/bad ratio. More research is need to find out how to put that information to actual clinical use.

There are some Drs. that give probiotics to anyone who is taking antibiotics. I just started working in a pediatricians office and she tells the mothers to dissolve powdered probiotics in bottles for patients who have diaper rashes ( a type of yeast infection) because it is a sign that the good/bad ratio is off.

I hope I explained it better and didn't confuse you more! ;-)
 
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bubbs96
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6/26/08 12:33 PM
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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.......:-(


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"Recovery is a process, not an event."
Even when it doesn't look like it, I am trying, and I'm doing my best in the moment.
 
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ykb
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6/26/08 2:16 PM
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Regarding the probiotics I also had a point where the Align caused bad side effects that is why now I am taking Healthy Trinity by Natren they can be bought online directly from the company. I find that it really helps me.

What type of prep did you have to do for the colonoscopy? I had to take Merillax(sp?) diluted in Powerade this way I didn't totally dehydrate because I still had the electrolytes in me even though everthing got cleaned out by the prep!

Regarding the surgery consult it sounds scary but if you truly have a prolapse and a "tumor" blocking your intestines than it sounds like that is what you need. Maybe you can look into Drs that do colorectal surgery laproscopically? I don't know if this can be done laproscopically but in general it is much less traumatic on the body and a much easier recovery. I know Cornell's colorectal surgery department specializes in laproscopic surgery.
 
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bubbs96
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6/26/08 2:30 PM
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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*


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"Recovery is a process, not an event."
Even when it doesn't look like it, I am trying, and I'm doing my best in the moment.
 
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ykb
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6/26/08 3:29 PM
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Yeah I know all about being medically compromized. My issues at this point aren't really GI but everything is interelated and I don't react typically to medication or procedures....

I would call a medical referral agency to get a good motility specialist in the ny area. I wish I could refer you to the one that I saw last Aug. but I as I mentioned he moved to Mas. in March. Maybe new Dr. can give a fresh look at all aspects of what is going on and give you some advice/help?

Hatzlacha Rabbah & Refuah Sheleimah
 
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hb
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7/2/08 12:47 AM
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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.
 
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bubbs96
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7/2/08 8:06 AM
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I appreciate the suggestion (don't exactly know HOW I would get to any of them, as I live in NYC and have no car)....but I'm curious what alternative treatment plans they might have to offer....do you have specific experience? Do you mind sharing--either here or by PM? My doc might not technically be a "motility specialist", but she seems incredibly knowledgable....trying things done in the Cleveland Clinic, etc.... I've joined a gastroparesis yahoogroup, and have done a lot of research, and so far there's nothing that she hasn't mentioned, and most of these people DO go to specialists.....I'm not opposed to chasing other options if they do exist, but don't necessarily want to go through all that if my doc is correct that 20+ years of no treatment means very little likelihood that it can be treated.....so I'm curious about your experiences....
thanks


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"Recovery is a process, not an event."
Even when it doesn't look like it, I am trying, and I'm doing my best in the moment.
 
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