And the answer is: gastroparesis

[MightyMouse]

Hi Everyone. As many of you know, I've been trying to find some relief from the lower abdominal and back pain that has been escallating for the past two months. Having started at the GI doc who didn't think it was GI related, I then went to the Gyn and my internist--after multiple tests neither one could find anything other than an abnormal urine specimen. So, I was sent onward to the urologist. I had that appointment today. He wants me to follow up with my GI doc b/c of my abnominal x-rays. Basically, he feels my gastroparesis issues are causing me all the pain--the x-rays shows that my guts are completely "full". Yes, I've made few jokes already today about being "full of it" might as well get a giggle out of all this craziness.

So, next question: any of you have gastroparesis too? As you may recall, my GI wanted me to try Zelnorm, and my internest basically told me no, she didn't want me to take it. Not sure what to try next. The urologist suggested drinking magnesium sulfate daily and see if that helps. Yuck. I'm willing to try though, but if any of you have something else that's worked for you, over the counter or RX, I'd like to have some ideas to discuss at my next GI visit (as I know he's going to be annoyed that I didn't take the Zelnorm).

Nina

[DancingLight]

nina...

well, we already knew you were full of it....he-he. sorry, you brought it up. hard to resist.

i do not have any scoop on the gastroparesis...it seems to fit your descriptions though that i have read over the past year or so...just b/c you have such slow motility and stuff. i have read a little on gastroparesis but not too much.

why did the one doctor not want you to take zelnorm? just wondering what the reasoning was?

i was wondering if you felt like they are on the right track with this diagnosis. excuse the pun, but what is your "gut" telling you? do you feel like they are looking at the right thing? what a mess to go through to much from gi to gyn and back...

please keep us posted. i am off to a GI consult tomorrow myself. should be interesting.

emily

[MightyMouse]

My guts are telling me OUCH And joking is fine with me--If I didn't keep laughing, I'd be insane...or is that more insane?

I guess on a logical level, it makes sense to me that my slow motility issues are worsening of late. I was really hoping (as was my internist) that changing me from Celexa to Lexapro would have kicked everything back into gear. That gear is definitely in the SLOW lane, but at least we were moving (wow, I'm going at it with the euphemisms tonight! sorry, it's all the potty talk ) I don't think the Lexapro has changed a darned thing...other than I've put on 10 pounds in the past 2 months.

I can't remember why my internist nixed the Zelnorm, but I recall she was pretty adamant about it. I'll have to ask again next time I see her. Instead she wanted me to take Miralax, which is some kind of prescription laxative... but before trying that, she wanted me to do the lexapro/celexa switch.

Nina

[Gena]

Nina,

Just a thought, are you getting plenty of fiber in your diet or taking a fiber supplement? I assume you're drinking lots of water, right? Both of these help with motility. The magnesium certainly wouldn't hurt to try short term. I hate to see you get on another medication when there are so many natural things you could try first, including many laxative type herbs, bowel detox/cleanses and colonic massage therapy. Hope you feel better soon.

Hugs and cheers.

[JacobyD]

Hi Nina

I'm sure you remember I had quite a fight with gastroparesis a while back. The only thing that worked for me was liquid Domperidone, which I had to get from the local compounding pharmacy since it is still not available in the US (under the brand name Motilium) as far as I know. I never had any side effects from this med and it did work for me. I will still mention the usual disclaimer that we are all on different meds and all seem to react differently to them. You should at least mention this option to your doctor and tell him you know at least one person that it worked for!

Thinking about you and hope things improve for you very soon. I'm glad you have a diagnosis that can be treated and will certainly resolve itself over time. Best,

Dan

[opus88]

I second Gena's comments. Before I read her info, I was already thinking that maybe colonics would be helpful to you. Check with health food stores in to see if there is someone in your area who does this procedure. Do it at least 3 times fairly close together (skip a day or 2 or 3 between each session). You might find that getting cleaned out thoroughly would help things move more quickly after that.

[Guest tearose]

I can't believe the things I share with you all...Yes, Nina, I get the slow motility and if I eat too large a meal it can just sit in my stomach and ferment till it makes me either upchuck or need to eat lots of antacid. My way to avoid these complications has been to eat more small meals/snacks throughout the day and be sure to drink plenty of plain water and take in fiber. (I usually have oatmeal for breakfast and I add an extra spoonful of oat bran to my bowl) Of course if you can't take oat products try a substitute)

Also important and I hope to explain it well enough.. Then, to avoid the horrible cycle of needing a laxative and then having the runs. (because our sensitive plumbing can overreact to the laxative.) I take a small squirt bottle (some may call it a peri-bottle) fill it with warm tap water and let it spray externally over my butt (I can't find a proper way to say rectum). The soothing warm water externally stimulates the exterior nerves enough to cause the intestines to contract internally and bingo! we've got movement going on...I can't believe I just shared my evacuation plans with the universe!!! movin' on...tearose

[Gena]

You crack me up Tearose!

[ann pettinari]

Hello,

Well I hope I don't get 86ed from this network for this suggestion!

This is my first post here.

I have what is seemingly gastroparesis, self-diagnosed after years of seeing patients with it and reading , and having some understanding of how the ANS effects the gut. No, I have not let the M.D.s have a crack at this because its not my chief-beef and I get tired of going to them for my most pressing needs, oh say, things like a life-sustaining blood pressure.

I use marijuana for this, but only on occasion. This is legal in my state, (CO). Yes, it has side effects like many drugs, but they are short-lived. Benefits include: instantaneous releif from nausea, quick relief from constipation, (although I agree with the other posts that the best prevention of constipation is a good fiber-rich diet and avoiding refined foods), and paradoxically, for me the drug is activating.

So, there you have it; I hope you'll still allow me to play with you guys now that Ive divulged my wickedness.

Could anyone tell me how to use an emoticon? I wanted to add one just then, maybe that little guy smirking with the dark glasses.

(Ann, Nina edited your post. You can use the emoticons by clicking on the one you want in the left margin--it will automatically insert that item where ever you are in your typing )

Edited November 4, 2004 by MightyMouse

[MightyMouse]

I must say, I'm impressed with so many replies under this awkward topic.

I drink lots of fluid daily, take a softener, and add Benefiber to my coffee in the morning. I've had some gut clearings in the past via either preparation for a test or during a medical test. Unfortunately, that tends to cause things to get worse and slow down further.

Dan, I have to remember that med when I talk to my GI doc. I'm also going to ask him if there is a motility specialist I might be able to consult with (or he can). Anyone have one of those?

Nina

[StaceyYount]

Hi,

I had a lot of motility problems that took awhile to find but one thing they did try on me was an injection of a drug called sandostatin sub Q (I'd spell that out but no idea how) :-). Now to be honest I could not tolerate the injections they were very painful but I also was down to 88 lbs and had nothing to inject into. On TPN the whole thing but slowly got back to 120 and beyond. As I was typing this I decided to look up the drug and though I am sure this was it , I am not sure why it was prescribed. Shands hospital in Gainsville prescribed it. Something to look into and ask about but I am not sure. I still have motiltiy problems but nothing like before, small meals etc do help. You might consider going to see a Traditional Chinese Doctor becuase I think that she has helped with my digestion and the pain. Worth a try.

E me if you wanna talk. :-)

Stacey :-)

[Guest Julia59]

Nina,

I know that misery. My grandma used to call it the misery----LOL

I have read a lot about gastroparesis and it's relationship with the ANS.

I wish there was some magic solution. Michigan Jan did have a formulation that works out pretty well for her. If you go back to some of the old posts....I can't remember the exact title of the post....

I guess you would have to try various different things to see what works out the best.

I heard about a gastric pace maker for the stomach----and I think they are working on one for bowel motility. I'm guessing this would be if absolutely nothing else worked and the person would be in trouble without it.

I talked with a woman who has Chiari/cervical cranial instability the other day and she said she can't go for weeks at a time---sometimes four weeks. This is common with chiari/and cervical spine issues also.

My down under has been getting worse since my cervical spine surgery. As is the rest of me............................ I was told that I would still have on going problems----I guess I don't want to face it.

Another thing I heard was certain fiber containing foods can actually act as a plug. I can not eat any of those low carb breads-----oat meal----nuts----or low fat breads----you might as well put a plug in. I find that I do best with the old fashioned whole wheat bread---6 grahms of fiber for two slices---all bran cereal----canned fruit----and I drink plenty of water to keep things flowing smoothly.

This subject has been in my life since I can remember. I'm not a nice person when I can't go-----but I have to admit it's been going on so long---i'm starting to get used to it----and I cope a bit better. Some of these drugs we take can mess things up too.

I hope you feel better soon...........................

Julie :0)

[Guest Julia59]

Beans also are a good diatary addition----all sorts of them. Easy on the gut for me, other then-------well you know---------------

MY chili recipe:

1 to 1 1/2 pounds (depending on your love for meat) ground round beef or chuck--angus, because it has less grissle----browned

throw in three large cans 29 oz. of hunts tomato sauce

throw in two cans of bushes mild chili beans---the regular cans

and I add about a third cup of sugar to lessen the acidity of the tomato product---helps with acid reflux. My husband has it pretty bad and he tolerates the chili well as long as he takes his nexium.

a dash of red pepper if you dare----teeny tiny dash----(remember that article you showed me about red pepper Michelle---to help gut motility.)

I also make baked beans----three 16oz. cans of beans----I add 1-4 cup catsup, 1/2 cup brown sugar, and a touch of tobasco, and 1 tsp. mustard---throw some bacon on top and bake. If you use bush's beans cut to a third cup---because they add sugar.

Eat with a green salad which is an added bonus.

Julie :0)

[Jaime]

My mom just got diagnosed with this. I am going to school to be a dietician so I was able to help her with the diet part of the diagnosis. The diet has helped tremendously (sp?). I will have to look for the diet online again, but the basis of the diet is that:

liquids are the quickest to empty from the stomach, fats are the hardest to digest and everything else kind of falls in the middle.

Basically what the diet is is a progressive type of diet. For the first three days, you are only on liquids, then you gradually start adding in foods, but fats are the last thing added in and that's only the bare minimum amount that the body needs to function. I don't know how to post the link to the diet so you can just click on it, but here is the web address for the diet: gastroparesis diet

I have heard a lot of horror stories about zelnorm. I have read that there are alot of better drugs that actually stimulate the parastalsis of the stomach which zelnorm stimulates it in the intestines. If you have any questions or anything works for you let me know so I can pass it on to my mom. Also, once she got through the first three days of liquids she felt so much better because she didn't have this huge belly anymore. I am not sure how this will act with the POTS, but I would try diet changes before any meds.

Good luck and let me know how you are doing!

Jaime

[Ginnysgirl]

My nephew's wife has also been diagnosed with this and is so bad that she is currently being scheduled to have the gastric pace maker implanted around Thanksgiving. She is one of the first ones to have it from what I understand. I can keep you updated after that time as to how it works. Good luck!!

[MightyMouse]

Thanks everyone.

I swapped back to Celexa three days ago (from Lexapro). Don't know if this is why my guts started working again yesterday...but I'm sticking with the Celexa for now even if it's just me being superstitious!

My re-awakened guts now start cramping and moving shortly after eating --honestly, I'd almost rather have that than being all blocked up for weeks. At least the discomfort is only a half hour or so, as opposed to days of bloat and pain.

Feeling more comfortable and slightly thinner in the midsection, Nina

[DancingLight]

nina,

i much prefer having to go right after dinner too than waiting out that bloat junk. ugh! but, neither is exactly ideal.

tearose,

i know it was a bit embarrassing for you to share your "evacuation plans!" but that was a pretty good tip...i might try to remember that next time i am clogged up! okay, okay, sorry, this gut stuff can be sooooo all-consuming. how did you ever come up with something like that??

i don't know why, but the gut stuff is really so hard to deal with sometimes...i feel ruled by my bowels. aaargh!

emily

[leah1321]

I have gastroparesis. I take zelnorm- it works. I put on a lot of weight, too much really! I still have times when I don't feel well and I am almost obsessed with food now (it is somehow related to SSRI drugs and I feel some sort of weird emotional side effects). Otherwise, it is pretty good. It definitely empties my stomach. I am allergic to reglan, but many doctors start with that to try to jumpstart the gut. Colonics would not work because your stomach will remain paralyzed. My upper GI tract is paralyzed and my lower GI tract is too rapid. I get esophageal spasms and stuff coming up most of the time. I was told domeperidone would be ideal for us, but it is not FDA approved and my dr. was worried about telling me to get it. She did tell me about it and there is a study with it at Cornell med school but I failed their qualifications (big surprise). The diet is a huge huge thing. Stick to it! Start with liquids any time you feel bad, then move on from that. I was getting times when I had more than a liter of fluids sloshing around in my stomach as it tried to digest without peristalsis. Liquids were easier to digest and went down easier. Eggs work well too. I think zelnorm is good. There are questions about side effects like chronic severe diarrhea causing dehydration. I take a 1/4 pill three times a day, so it is a very small dose but enough for me. I do not get the side effects they report. Most people take a much higher dose. Take 1/2 hour before larger meals and before bed. (that really helped me because I think my stomach stopped all together at night and I had no voice for months from the reflux and I was already on both nexium and protonix!) I hope you feel better soon. One easy remedy for meat digestion- take papaya enzyme pills- it practically liquidizes the protein!

Leah

[MightyMouse]

Leah, I think I'm about the opposite of you--my stomach works, but my intestines are really really slow, if they're moving things along at all.

I've heard of the gastric pacing, but I think that's currently for stomach only and that lower gi is something they're still working on.

Thanks everyone! I'm feeling a bit better now than when I wrote the other day. Nina

[Guest Mary from OH]

Now we're talking about a topic I am QUEEN of!!!! My daughter has almost EVERY GI dx available!!! GP is a paralyzed stomach. But, yes, it will cause your intestines to get backed up too. What you need to do is have motility tests done on your upper and lower GI tracts. How was your GP dx? Zelnorm is excellant as is Reglan. My daughter takes Propulsid (which has been taken off the market, but she is on a compassionate use program). She has severe motility issues and even has a cecostomy so that we can do daily irrigations. In additiont to her stomach being paralyzed her colon is too. Also, she has neuro problems with her small intestines... I could go on...

So, even though you "feel" the problems in your intestines, if your dx is GP; your medical dx is in your stomach. You may also have other problems too!! Slow motility is frequently a part of POTS (you probably know that). Zelnorm would be a good choice, or at least a good start. Do you know what foods give you problems? Did your drs suggest any laxatives in addition to the Benefiber?

Let me know if you have any questions!! I'll bet I can answer them!! Take care! GI stuff stinks!! No pun intended!

[leah1321]

Hi. I went to my doc today and she suggested Lotronex for this junk. Has anyone tried that before? It is supposed to be in the same family as zofran. I like zofran a lot. There are apparently a lot of side effects when used incorrectly or inappropriately monitored, but she would see me frequently and have me on a very very small dose.

Nina- it is crazy that we are exact opposites with this one. It is strange to have the upper and lower different. Very rare and hard to treat. My GI doc wanted to know if my neuro thought that my autonomic stuff will end soon because she knows of a lot of people who just 'grew out of it.' I am going on 8 years of severe illness and seem to get worse in a lot of ways. I think I might have to just live with it. She thought that was depressing and was happy to give me anything I asked for. That was a first for her because I think that before she was not actually thinking of quality of life. Now she really is- a real breakthrough for me.

She also said that florinef can cause stomach problems. What does everyone know about this?

Leah

[MightyMouse]

I'm not on florinef anymore Leah, so I doubt mine is from that. As for testing, it's all been done and the GI doc made the dx based on those studies (full GI series, swallowing study, motility, endoscopies and colonoscopies, GI cat scans, yada yada yada).

[Guest Mary from OH]

Nina,

What motility studies have you had done? There are only about 3 or 4 centers in the US that can do the the specific type of motility tests I am refering to. They are VERY specialized, but can give you a volume of info.

The ones I am refering to are called (upper) an anteroduodenal motility study and a (lower) colonic motility study. You would have catheters placed (upper) during fluorscopy and (lower) during surgery. Then you would be hooked up to computers. The catheters have 9 or 10 leads (I forget) inside of them. They are able to give acids, meds etc through these. They also do the tests while you are TOTALLY cleaned out. Then they have you eat. Then they "force" a BM. It gives SO much info.

Are these the tests you are refering to? You would be hospitalized for 5-7 for the whole cleanout and procedures.

[MightyMouse]

Mary, where are the tests you're speaking of available?

[leah1321]

Nina- I was going to have them done at Temple in Philly, but I backed out after the first horrible test. I was also offered them at Cornell in NYC, but I just had an EGG and called it a day. The EGG monitors the motion in the gut like an EKG but it is of the stomach and intestines. They have you drink many glasses of water quickly, ideally until you think you are going to be sick, and then they watch the motion. I had no motion in my stomach for a long time and almost threw up. Then it kicked in, but was slow and irregular. That is how I got the gastroparesis diagnosis. I know Johns Hopkins also offers these tests, but they were very hard to get into and the doctor I like there left.

Leah