I have had ideopathic gastroparesis for 2 years now.
I am 5'10" & 1/2 and prior to illness I was 123lbs
I leveled off for a while at 107-110 flux. My symptoms
are worsening and I am down to 104lbs now an am very concerned.
I have been vomiting several times a week,usually about 1/2
of what I have cosumed that day.I am having trouble eating
enough food due to nausea(pain) and fullness lasting for
many hours after eating even soup is slow to empty.
At what point in your opinion/experience should nutritional support be considered? My doctor mentiond briefly naso-gastric tube's?
Will this just fill my stomach or can my stomach be bypassed
with a naso-tube so the symptoms can be avoided. I dont fully understand how this works?
I assume from your email that you are already receiving prokinetic agents. If these medications are not helping and you remain symptomatic, then additional work is required especially since you are losing weight. A physicial examination is required to determine the exact time for alternative measures but given that you have lost about 20 lbs, you are probably close to needing something done. As a temporary measure, you could receive parenteral nutrition (receive calories and nutrients intravenously) to facilitate weight gain. As a longterm response, you may need placement of a jejunal feeding tube (nutrients are placed directly into the small intestine).
A nasogastric tube can be used to drain the stomach but not for providing nutrition. Placement of food down the nasogastric tube still means that the food is in the stomach. With gastroparesis it is necessary to bypass the stomch completely.
I am a 22 year old college senior suffering from idiopathic
gastroparesis for six years. Ove the course the years, I have
gone through decent and bad times. During the decent times, I am
able to eat enough to maintain my weight or lose it only very slowly.
During the bad times, I have lost s tremendous amount of weight
in a very short amount of time. For this reason, I have been on
a number of different types of nutritional support over the years.
I was on TPN through a midline for a few weeks a couple of months
after diagnosis. Eventually, I lost down down to 76 pounds
(I am 5'3" and was originally 110 lbs)and they decided to put in a J-tube.
I relied on this
for two years. Recently, I have had worsening problems, and they
have stuck me back on the TPN through a PICC line. There is also the
option of having a catheter placed in your chest. My PICC is in
my right arm. As far as the NG tube...I don't know why your doctor
would consider that because as far as I know that puts stuff into
your stomach and that's what you need to avoid. In order to bypass
the stomach, TPN (better for shorter term, although it can be used
long term) or the J-tube (good for long term and a lot easier to take
work with than the TPN). The J-tube can be surgically implanted into
your intestines. You are allowed to eat as much a you can handle
on both types of support. As far as when to put it in, my doctors did
not do it until it was obvious I could not get anything down and
was very malnourished all of the time. If you absolutely cannot
eat or keep food down, Nutritional support is a good option, although
it can be a pain to deal with. Usually you hook up at night for
around 10-14 hours (depending how you tolerate it). The advantage
to the TPN is that is very portable and you can carry it all around in
a backpack so you are not confined to hom or to one room. The J-tube
stuff was not as portable, but I was not hooked up to that for as long,
so it wasn't too bad. Hope that answers your questions. Feel free to
e-mail me with anymore. My address is ***@****.
Hello Jeannine. I am 15 years old and I was diagnosed with gastroparesis as well as unstable colon motility over a year ago. I previously had a naso-gastric tube inserted for about 3 days. The doctor inserted the tube because he feared I had a blockage and he wanted to make sure I was cleaned out before I under went some more testing. Unfortunately, the tube was inserted through the nose and lead right down into my stomach, leaving me with extreme discomfort through-out my nights and days. I thought that I would just let you know about my experience with that.
I suffer from vomiting and fullness, symptoms of gastroparesis. My doctor wasn't helping as much as he should, so I took a different approach...I change my diet. I've always been a lacto-ovo vegetartian, but after reading Marilu Henner's Total Health Makeover, I decided to eliminate dairy and eggs...and I'm serious, the vomiting has decreased significantly! She talks about food combining in her book, not eating grains and proteins together because one is alkaline and the other acidic, so the gastric juices neutralize each other, leaving the food just sitting in your stomach not digesting properly. I'm not a doctor, and I don't know what would work for y'all, but it is helping me, and worth a try just as much as all the expensive tests. If you want to talk...
my email is:
I think I have talked to you before, but I'll post some updated information. I have had chronic idiopathic gastroparesis for about 2 and a half years now. I am not on any prokinetic agents at this time because like you none worked for me. I also tried domperidone and I recently tried Lupron (not a prokinetic agent, actually it is a hormone, but has some preliminary evidence of improving symptoms in patients with irritable bowel syndrome, a functional GI disorder similar to gastroparesis). Unfortunately I did not get any relief from the Lupron either. I have been dependent on TPN for the last 2 years. I had a g-tube and a j-tube put in about a year ago. The g-tube is only used for decompression so I don't have to vomit. I have been attempting tube feedings since I had the j-tube inserted, but there is still some question about small bowel dysmotility in addition to the gastric dysmotility. Needless to say the tube feedings are not progressing well.
Like you, I have had a very difficult time maintaining my weight. I am 5'9" and used to weigh between 120 and 125 lbs before I got sick. I am now down to 85 lbs and have been for the last 9 to 10 months. I just can't seem to hold on to my weight despite the fact that my daily TPN calories have increased. I have had many episodes of sepsis (blood infection) from my central lines I require for TPN and my IV antiemetics (Zofran and Compazine). Each time I get an infection my weight drops.
If you can still eat at all, you should. I am only able to eat a little jello, but I try to drink as much as I can. Unfortunately, just about everything comes out my g-tube anyway. It sounds like you do need to do something concerning nutrition. Before I had my surgery for the g and j tubes I had a nasoduodenal tube for 2 weeks to see if I could tolerate the feedings. I couldn't, but we deceided to do the surgery anyway. The ND tube may be a temporary option for you. It bypasses the stomach, but it is not the most comfortable thing in the world. And of course the obvious, you don't really want to go to work with a tube sticking out of your nose! I am not working now, so it wasn't an issue for me.
I hope this helps you. Feel free to email me directly if you have any more questions (***@****).
I'm 5'3 and was down to 78 lbs last January. I went to Mayo Clinic with nausea, vomiting,reflux, extreme fullness and weight loss from 105lbs to 78lbs. I was diagnosed with Gastroparesis with no reasoning for this condition. I had been battling stomach pain, parasites, full feeling for at least three years prior to this episode. They put on reglan worked great but I became very depressed. they recently put me on propulsid. It worked also but because of the scare about how it can damage the heart,they took me off of it. I haven't been taking anything for almost three weeks. I'm afraid of getting very sick again. What will some of the early signs be that I should be aware of? I'm starting to feel fatigued and had some nausea that comes and goes. I just don't want to let it get to bad. Is there some other medicine I could take and if so what is it?
Thanks for the info. I have decided to get a book on nutrition
and food. My doctor thinks I may be having episodes of hypoglycemia because of my diet and lack of adequate intake.
I am really trying to eat the best I can because if I loose
a few more pounds I will have to go on nutritional support.
Have you considered Domperidone (from Canada) you may want
to ask your doctor about it. It is similar to Propulsid
but it does not cross the blood/ brain barrier as strongly
so there is less risk of side effects. You do have to pay
for it out of pocket and you can have it mailed regular
or have it sent fed-x.I have used Shore Pharmacy in Montreal
Quebec.Have you seen the gastroparesis diet on the Jackson
Gastroenterology web site? It has three meal plans that may
help you to keep the symptoms under contol and keep up your nutrition.
I am writing here because the forum would not let me post a message. I have been reading the many exchanges in this forum about gastroparesis, which I had never heard of, but which might explain some problems my wife is having.
My wife is almost 28 years old and is 5'7" and about 100-105 pounds. A few years ago, she lost approx 15 pounds and has stayed in the 100-105 range ever since. She is very thin.
She has nausea all day, and of course it gets worse when she eats . She gets sick sometimes after only a TWO OR THREE bites of food! She is chronically fatigued and often speaks of being unclear mentally. She also has pains. She has had multiple tests done, and we know already that she is borderline hypoglycemic, she has a huge number of food allergies (some include wheat and all grains, potatoes, all beans except lentils, all tropical fruits), she has an imbalance of essential fatty acids, she has extremely low magnesium, she does not absorb fats very well, she does not digest protein hardly at all, she has very little of the friendly acidopholus bacteria in her gut, and she tested positive for the Epstein Barr antibodies, though she has never had mono. No parasites have been found.
She has been taking multiple supplements such as magnesium, fish oil, chromium, multivitamin, digestive enzymes, FOS/glutamine, acidopholus and such but still feels no better. A while back, she went on a strict elimination diet, eliminating the allergic foods from her diet. After six weeks of that, she felt no better and was starving herself even more than usual because there were so many foods she was avoiding. So she is not on any elimination diet now, and she still does eat sugar and white flour. We feel there must be an underlying problem with her digestive tract that has been undetected. Her tests showed that she does not digest protein hardly at all, yet the digestive enzymes she takes with her meals do not help. Why? Could she have gastroparesis in addition to all of these other problems? (She has never had a gastric emptying study done.) Does anyone out there have any ideas of what other tests she should have done or what other kinds of treatment might be out there for the problems we already know she has? The doctors have not offered much help. Any suggestions would be so helpful and so appreciated.
Hi, Robin....so sorry to hear of all the problems. My teenage son is suffering from what appears to be a somewhat similar situation. We were at Mayo Clinic also, for a total of 4 weeks, trying to figure out what was wrong. Our situation started with an Epstein-Barr infection 2 weeks shy of his 14th birthday. At the time of diagnosis of the Epstein-Barr, his blood pressure was up for the first time ever. To make a long story short, the high BP caused some heart damage, and then things really began to go downhill fast. He has lost 45 lbs. since approx. 9-1-99. Testing at Mayo revealed his gastric emptying time is extremely delayed, and a good amount of fat, calories, protein, calcium, vitamins, minerals, etc. are passing straight through him and into the stool. Therefore, malabsorption. He has undergone an exhaustive work-up, and these are the "conclusions" from Mayo: Either the Epstein-Barr caused his autoimmune system to launch a massive assault on his autonomic nervous system (which would explain everything but the WEIGHT LOSS), or he has a "silent" pheochromocytoma tumor (which would explain 100% of his symptoms, INCLUDING the weight loss).
They suggested trying to get more food into him, although with his stomach staying full for so long, his appetite has decreased at least 80-90% over what it was in mid-November 1999. He was a big, strong, healthy athletic kid, and on 8-23-99, he was 5'11 and weighed 210 lbs. He is now 5'11-1/2 and weighs about 165. His coloring is bad, his pupils are massively dilated and unequal, for awhile they were not responding to light; all classical stuff for autonomic dysfunction.
I find it interesting to read the comments about medications for this condition. If you have any suggestions for me, please respond here, or e-mail me personally at ***@****. By the way, we live quite close to you, over the border in Indiana. We tried treating locally, but no one could figure him out. Then we went to Chicago, and got what amounted to "I don't know-go away" and a ton of bills. So, Mayo was our next attempt.
Hope to hear from you, and certainly hope you are okay. Thanks for anything you can provide. I have had information on my son posted in two other forums, but the physicians get REALLY interested in him, as he is basically a medical mystery, and they actually seem to become rather attached to our situation because it is so unusual, they try to come up with tests and suggestions (which, by the way, Mayo felt were justified and performed!), and then the next thing I know, when I express my gratitude (I am a very loving and Christian person), I start seeing posts that make me out to be some kind of sleaze or something. It's so disgusting, and very hurtful. My first son died at age 3, and now this one is age 15, and I'm terrified. I am truly appreciative to anyone who can offer any help, advice, personal experiences or suggestions. I just don't want to be nailed to a cross because I am appreciative.
Many people who post in these forums (and it's never the ones who need help, just the "observers"), seem to have nothing better to do than slam those of us who are desperate for help.
I did not see this response untill after I posted above to
another comment you posted.
Thank you for the information about the new drug! :)
and thank you for the Hope!If you can share the information,
what was the name of the drug,is it a motility drug?
I am also curious as to where the testing took place?
Any info would be greatly appreciated! Thanks!
I have gastroparesis as does my teenage daughter. I recently participated in a clinical drug trial for a new medication -- it will enter the next stage of human testing in June. I found it to be very helpful; much more than any other medication that I have tried. I know that approval for this drug is still in the future, if it is approved at all, but it gives some hope that there is something new out there that may help.
I haven't seen any postings here about the gastric pacemaker that is in trials at five different medical centers in the U.S. Two that I know of are the University of TN medical school in Memphis and Johns Hopkins. From what I have seen, it has been a lifesaver for some patients who had no other help. However, it is still under FDA trial, and long term data on outcomes in U.S. is not available. However, I understand it is approved for use in Europe, so more info may be out there.
I don't know who runs this site and I may be out of line here, but neither my daughter or I received any real benefit from our trip to Mayo Clinic. Other people may have different experiences. We are fortunate now to have an excellent GI doctor and an expert in gastroparesis to treat us at home.
I'm so sorry for the pain expressed in many of these notes, and I do understand. It is hard enough to have a disease yourself, but when your child is ill it is almost unbearable. If it helps, my daughter is back in school after missing a year and a half and is doing fairly well on her medication. She has regained her weight and leads a reasonably normal life. I feel that we have both stared death in the face and survived. There is hope, no matter how tenuous it may seem at times.
I don't know the name of the medication -- it was a double blind study. I do know that it is a derivative of erythromyacin (sp?) that has been formulated to harness the potential of that drug to cause bowel spasms. It is a prokinetic drug that stimulates contractions of the bowel. As you know, erythromycin causes diahrrea in many people -- this drug is meant to have the same effect on purpose, not as a side effect, for those who have poor gut motility. I'm not a doctor, so if some of this is not exactly worded correctly, I'm sorry. Any docs out there -- please correct me if needed.
The study originated in California and was also done at several sites around the US. I participated at UT med school in Memphis. Long term trials of this drug are expected to begin in August.
Although this was a double blind study, I knew when I was getting the drug and when I was getting the placebo. This drug worked much better for me than propulsid did. I have high hopes for it.
Hi Carissa --
I'm so sorry to hear of your problems. Am interested that the temporary pacemaker helped. Have you thought about getting implanted pacemaker? I mentioned it because I do know several people who have really been helped by it. Dr. Tom Abell at the University of TN Medical School in Memphis has done the most implants in the U.S. He's an excellent GI doctor.
I haven't gotten on the waiting list because I do respond to medication. My quality of life is still poor, though, and I am considering asking to be put on the list. There is a group called GEMS of America that is active on this issue.
I am a 22 year old college senior with gastroparesis for six
years and prolonged qt interval for an unknown amount of time
(doctors are unsure of the cause of mine..it is typically inherited).
When my potassium gets low from not eating well, I often go
into cardiac arrest. I've been through six and some close calls.
Currently I have in a PICC line for TPN because I was in the hospital
the last week of the year (right after Christmas) because
of severe malnutrition and dehydration. My potassium was 2.7. I've
gone into cardiac arrest at 3.5. I was lucky this time! I took propulsid
and e-mycin and went into cardiac arrest from them because of my heart problem.
I have also taken reglan and had a severe neurological reaction to it.
Domperidone is the only drug that I can take with no serious side effects. I
have been on it for five years. I was one of only nine patients in the world
involved in a preliminary pacemaker study at the University of Virginia Hospital
four years ago (conducted by DR. Richard McCallum...now head of gastroenterology at
the University of Kansas Medical Center). This study was was done only months before
they started doing the permanent pacing studies (I had an external temporary pacemaker).
All patients involoved in the study had improvement in gastric emptying at the end of
the study (which was about three months). All nine patients had the pacing wires placed
during the surgery for the placement of a j-tube. At the end of the study, 8 of the nine
patients no longer used the j-tube and were able to take all their medications by mouth.
The gastric pacemaker may actually not only help improve symptoms, but help improve the
stomach also. My doctor (Ken Koch at Hershey Med. Center) has told me that the study is
going very slowly, although they have gotten some good results with some of the people involved
in the study. I had little help from the pacing wires because I was the youngest patient (by far)
involved and my pacing wires fell out after only a few weeks. There have been some good resutls though.
If you have any more questions, feel free to reply or e-mail me at ***@****
How are you? I am curious..."again" about the group you
mentioned GEMS of America.Is there a web site? I am interested
in what they do ect.I also wanted to mention a web site
where info about gastroparesis is shared.You can e-mail the
person who set it up and he can post the information.His wife
has gastroparesis.I think the info you have to share would
give alot of people hope.
The addr is: www.dailyfutures.com/gastro.html
You and others on this site have been very helpful and
given me hope.I have lost more weight and am very scared.
I hope you and your daughter are doing well.Thanks for sharing.
Thanks for your response. In answer to your question, I am not eligible for the permanent stomach pacer because of a heart problem and the probability of having to have a pacer for my heart someday. I can't have both. My doctor at Hershey Med is actively involved in the study, and also he doctor I saw at the University of VA hospital who put the temporary one in is involved in it. They have told me about it, but that's all they can do because I'm not a candidate. Good luck.
I have such similar symptoms to your wife. I am a 31 year old female, and I'm 5'10" and weigh 125. I have had a stomache problem for nearly 12 years. Basically, when I eat, I feel very nauseated and quite often vomit as a result of the nausea and feeling like something needs to come out. I have a very difficult time having any kind of appetite because everytime I eat, I feel sick. Usually if I lay down for about an hour to three hours, the feeling subsides. (As long as I haven't eaten.) This has been going on since I was 19. Sometimes I feel sick after 2 or 3 bites too, so I completely sympathize with your wife. For me, I find myself being very embarrassed of this condition because when I'm out with my friends I almost always have to excuse myself and call the night off because I get so sick from eating. The attacks (as I call them), have been worsening over the years. At first they were somewhat sporadic, and then symptoms could disappear for a number of weeks, but only to return with a vengence again. This past year I had two major attacks which resulted in me being nauseated all day long, throwing up yellow and green bile from my stomache being so empty, tenderness in the area right below my rib cage and little to the right. I was hospitalized in December of 99 and was told my white blood cell count was at 15,000 (normal is 5,000); my spleen was enlarged; my liver was enlarged and 3 enzyme levels were elevated; a small ulcer was found and my gall bladder was enlarged. After several days of tests, the doctors concluded my condition was a result of a diseased gall bladder. Things kind of made sense in some sort, but part of me was thinking maybe I've got a couple of things wrong with me. I had my gall bladder removed in Jan. 2000 and was so incredibly hopeful that it would end my nausea associated to eating. Initially I felt a tremendous improvement, but as time passes on I'm noticing I still get really sick to my stomache when I have to eat. I feel like maybe I just hate food or something because nothing appeals to me. (Because everything makes me sick.) Even just smelling the food now makes me nauseas. So... I'm at a loss. Weight has never been an issue for me because I have always been slim. The most weight I've lost at once was 13lbs. I feel that whatever this thing is it's completely ruining my life. I can't go out for dinners, and let's face it, eating is a major social thing in life. I have no enjoyment for food because this has been going on for so long. None of the doctors I've ever been to have been able to diagnose anything, until recently when symptoms worsened. I thing the gall bladder removal helped part of me, but not all of me.
I wish your wife much luck with this.
Hi,I'm 29 and have gastroparesis,some of your symptoms sound very
similar to gastroparesis.I had my gallbladder/appendix out on
2/98 and have been chronically ill with gastroparesis since.
I had typical gallbladder symptoms and some nausea prior to surgery.After is another story........................
Have your doctors done a Gastric Empty Scan?
This would help establish if your stomach is emptying
in a timely manner.If it empties slow you would feel nausea,
feeling full after a few bites, sometimes pain, and bloating,&
GERD.The severity of symptoms can wax and wane so empty scans can vary. I too find some relief if I lie back a little in a chair or on the couch and lie still. If I sit up straight or move aroud too much when my stomach is full & not emptying (which can last hours)I will progressivly feel worse.
Kindof hard to do "life" like this.If your unable to eat much your stomach may be filling with acid and making you feel full and nauseated and then when you go to eat there's no room. Excess bile can cause bloating also.Have you gone to a Motility
Specialist? You may want to try a teaching hospital in a city
near you and ask for a motility GI doc.It sounds like there is
something more going on then just gallbladder...I hope you
find some answers soon,Good Luck to you!I hope your feeling better!
Hi, everyone! Sorry that you are all having these health problems. I do know what it is about.
What is gastroparesis and how is it diagnosed?
Here is my story. Started in January with the Flu which went to Bronchitis then Asthma. Next I had menstrual bleeding and a kidney stone at the same time which required a D & C and Cystoscopy/Ureterscopy (also at the same time). Came home from the hospital to find my dog sick (he was old), he collapsed outside and I picked him up to carry him in the house (did not want him to die out in the cold by himself) which was not a good idea because I popped a ventral hernia repair. I went to the doctor about the hernia and because I had diarrhea and nausea and vomiting since I had gotten the Flu.
Doc said he had to do a test and it turned out I had Pseudo Membranous Colitis. This came from taking antibiotics but the treatment is more antibiotics. Was given Flagyl which sent me to the emergency room with an allergic reaction. Then I was given Vancomycin in the dose of 125 mg a day. This did not work so I was given 500 mg a day.
Three months down the road, I still have pain in the upper left quadrant, diarrhea, nausea and vomiting. Cannot eat or drink. I have been in and out of the hospital about four times this year. Mostly for dehydration. I lost seventy-one pounds in less than three months.
Last week in the hospital, I had all kinds of tests. They did not really find much. The C-Diff test is now negative so it is not the colitis. I was told Gastritis and Irritable Bowel. Find it hard to believe that is the cause of all of this and my family doctor thinks it is something else, too.
On Saturday when I came home from the hospital and walked in my front door, I immediately had a sore throat, tightness in the chest and an upset stomach. The diarrhea, nausea, vomiting, pain and fever (low grade at about 99.6) were all back. Back to going to the bathroom, three to ten times a day and throwing up all I try to eat or drink.
Now my family doctor (as I do) thinks I am allergic to something in my house so next week I see an allergist. He thinks it is my new puppy but I only have him for one month and I have been sick for three months.
I live in a very old mobile home which could have lead paint, asbestos, formaldehyde, mold, mildew or who knows what.
One doctor made a comment to me that since I can stand to lose more weight (I was huge at 380 lb a year and a half ago. Lost the first 50 lb with diet and exercise over a year's time but lost the rest in the past two and a half months with still 100 lb to lose to be at a proper weight.), they will just wait until I lost weight down to a normal size and then see what is wrong with me. My appointment with the gastroenterologist is not until May 30.
Also, I was told that it could possibly be Eosiniphilic Esophagitis because there are Eosiniphils in my blood work. What is that?
If anyone can help me to get better or at least to get fluids down so I don't have to go to the hospital again, I will be ever so grateful for the advice.
My 10 year old daughter was just diagnosed with gastroparesis. I am having a hard time understanding her problems and unfortunately, have had a hard time believing her continuous ailments until I read the comments posted. I'm so glad I found this site (although it took some doing!) I haven't had a clue of the seriousness of her condition.
We have cut out most of the fats in her diet and many of the vegetables (with skins) as well. She gets very hungry though. What foods are best to ease the pain and should she take extra vitamins since she can't eat all the vegetables she used to eat?
The doctor has prescribed Reglan for her and I think she is now having bouts of depression and anxiety. Does anyone know of any other drug she can take (along with the Reglan) that can help with these problems?
Also, how do you go about getting domperidone if you can't get it here in the US? Does your US doctor prescribe it and then you can get it in Canada over the internet or something? How does that work exactly.
Well, I have so many questions, but want to help her as much as I can. If anyone has any other thoughts of how I can ease her pain, I would greatly appreciate it.
I'm 41 years old and have been diagnosed with idiopathic gastroparesis. It has been a year now and I have lost 30 pounds. The condition has not improved, but the management of it has. I am a physician and this further frustrates the situation when no good treatment is available. This disease is very debilitating especially when one wants to live a normal life. It completely alters ones social,physical,emotional, and family way of living. Having dealt with sick and dying patients for 15 years now, I now find myself in a position as a patient looking for answers. It amazes me that there is no good treatment for this debilitating condition when we have so much technology and expertise in so many others areas of medicine. I am now looking for answers in a physican who practices holistic medicine and has successfully treated autistic and ADD children by diet manipulation. This physican has helped many patients with GI tract abnormalities by approaching things on the cellular level. Will give follow-up at later date.
I have been diagnosed with idiopathic gastroparesis recently and have been on 4 or 5 drugs so that I can eat for about 5 weeks now. Nothing is working very well and I'm afraid that I will begin to loose more weight. I have only lost about 10 pounds so far which isn't so bad but I know it's not good to loose weight by not eating.
They want to try to get me on propulsid but I'm kind of nervous about that because I've had surgery for mitral valve prolapse and I've had irregular heartbeats etc.. I know I may not even qualify but if I don't then what? I work at a pharmaceutical company so feeding tubes etc are out of the question.
What do I do? Does anyone have any suggestions? Eating apple sauce and drinking ensure isn't enough. I'm always hungry and when I try to eat a "real" meal I feel sick for about 12 hours afterwards.
I want to try to do something about this now. Also, How do I know when it has gone away? Or will it ever?
Im sorry to hear your not feeling well.Gastroparesis is a tough
condition to manage.There is a medication called Domperidone
that is available in Canada it is a motility drug and has few
side effects (one side effect may be lactation). It may be worth asking your doc about. I have a pharmacy # if you are interested.
If you have not found a good nausea med yet you may want to try
Zofran, its on the exspensive side,if you have a RX plan it shouldn't be too bad.It can cause constipation and that can worsen gastroparesis symptoms so thats something to look out for if you take it.There is a web sit you may want to look into:
the second page has all sorts of info. re: gastroparesis.
On the subject of food........thats trial and error.
You may want to try eating VERY SMALL amounts
of food every 2hrs or so.I know this can be a pain but it may
help you hold onto your weight.Yogurt,chicken broth,sm.pc of
chicken,a few crackers w/sm amount of peanut butter,banana are good snacks.
Will it ever go away.....I know it can,my GI doc has said he's seen people get better eventually.If you have been given the
diag. of idiopathic I assume they have ruled out all other
causes? Did you have some kind of virus prior to the onset of
gastroparesis symptoms? I have read that viral gastroparesis
can resolve....it may take a bit of time but its hopefull.
As far as knowing if your better...I think you'll just be able
to tell that your feeling better, the nausea will probably subside and you'll probably be able to tolerate food better.
I hope you are feeling better soon :)If you have any question
or just want to talk feel free to e-mail ***@****
Hang in there !
Hi my name is Chrissy,
I have been diagnosised with gastroparesis and autonomic neuropathy for about a year and a half now. I am 24 yeazrs old and misserable. I have been a big person all of mylife but I am losing weight like you wouldn't believe. To this date I have lost about 190 pounds. I have had 3 NG tubes down my nose, they were very uncomfortable and when I vomit the tubes come out of your nose. I have had a J tube inserted but it didn't work because the surgeon said my small intestine was shriveled up like a rasin. I have had 2 ports put in my chest for TPN but they both got infected and they had to pull them. I have been on all of the medicines that are supposed to help with motility and nothing seems to help.
I am to the point now that I can't even keep water or liquids down. I have lost 20 pound in the past 4 days. For some reason all of the Dr.s i doctor with all have seperate opnions and they all fight about the best treatment for me. My family Dr. tells me that I just need to eat and throw up and eat and throw up he said 20 or 30 times a day he didn't care. We are so frustrated because we don't know what to do.
I have been in contact with John Hopkins but I cant get an appointment till the end of Sept. I do have a Dr. friend in PA who told me to check into the gastric pacrmaker so he is tring to get me in there as soon as possible. If any one out there has any sugestions please either post them here or email me direct at ***@**** or ***@****
I have been suffering from gastroparesis for six years and have set up a web site to give tips and suggestions on what helps me feel better, and things other people with gastroparesis have told me helps, as well as information on how to get a hold of domperidone. There is also a section where people with gastroparesis can submit their name and e-mail address, and it will show up so that other people with this problem can contact them. I'm trying to set up a support group. The link is : www.monkeygirl.atfreeweb.com. It would be great f you could check it out when you get a chance!
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