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Thread: Gastroparesis, a vent & questions

  1. #1

    Gastroparesis, a vent & questions

    I finally got a good gastroenterologist. I'm not very happy with my dx but happy to know why I've been so sick. I've had 5 months of worsening daily nausea, vomiting, bloating & violent intestinal pain & spasms along with dysreflexia. At first drs just said I was non-mechanically obstructing at times, but never an explanation, suggestions but just pushed Reglan. It offered little relief & the side effects were horrible. So now I have the bigger picture with suggestions but I'm still scared & have questions. I want to try to avoid a feeding tube. I also understand I can't continue to be so ill, be dysreflexic after eating &let my health all around suffer. I've lost much needed weight but the dehydration & malnutrition is causing more crap. I have very little immunity so I catch& keep every bug, several UTI's have ravaged, I'm very fatigued & my skin has took a hit. I have no breakdown but vulnerable areas. I have little energy for much & don't even drive currently. Depression is full force too. I HAVE to get better! I'm also eating Phenegran & Percocet like candy, ick.

    I understand this can be caused my poor autonomic systems with SCI but mine is due to trauma in my small intestine. This happened with my bowel resection for my ilieal conduit.

    A few quesions if you suffer too..

    1). I've started eating a diet of easily digestible foods. I've had improvement w/ nausea, no vomiting but still have pain & dysreflexia after eating. I'm using Percocet to help manage it & control the dyreflexia from getting out of control. Still I'm worried& of course, it's uncomfortable. It starts about 20 min. after eating & last about 4-5 hours.

    --- So, blending/processing foods doesn't sound appealing but does/would this help?

    ---If you've experienced pain& dyreflexia, has it gotten better over time?

    2).Proteins. I'm just sticking to chicken & tuna but I'm wondering about drinks/shakes. I've tried the chocolatey ones you add milk to but the milk & the chocolate are triggers. Dairy takes 24 hrs to digest, ack! So, what are some good ones I can try?

    3)If I can't get this under control, my dr. wants to try a med called Domperione. It's only sold out of Canada so that's an out of pocket expense.

    ---Anyone know the cost?

    ---Most importantly, did it help?

    4). Anybody have their Gastroparesis get better with time?

    Any help is so appreciated, please share if you can.
    Last edited by quad79; 06-07-2010 at 08:59 PM. Reason: add ?

  2. #2
    Senior Member rdf's Avatar
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    I don't know any answers quad79, but I hope you can figure it out. Sounds like you're going through hell. Hoping you get better soon.
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  3. #3
    I don't have any answers for most of your questions but one thing I can tell you is that the Percocet will slowdown your digestive system. I think any narcotic will which is like a double-edged sword. That's about all I can tell you. I know I'm suffering some of those symptoms. Every time I eat I get really bloated afterwards and a lot of times just don't feel good, not to the point of noxious, just not feeling good. Good luck on getting it all worked out.
    C-5/6, 7-9-2000
    Scottsdale, AZ

    Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

  4. #4
    Thanks you two. Being a healthy gimp beats being a sick one. I think if/when I do go back to being so, I'll never complain again..well maybe.

    Yea, I know the narcotics are bad for that. I normally can't take them b/c of lowering my blood pressure, but it's the only way I can semi control the dysreflexia I have after eating (of course, my bp is much higher now). It's scary as hell getting it everyday & it lasting so long.

    I sure do hope someone pops up with some tips. Surely someone else has been/ is tried & tested with this.

  5. #5
    Gastroporesis.... delayed gastric (stomach) emptying, often caused by dysfunction of nerves going to the stomach/GI tract.

    I have some familiarity with this, and my mom currently suffers from it. Recently she had non-stop nausea, gas/burps/bloating, anorexia, fatigue for 1 month and lost 15lbs. She had an endoscopy to look in her stomach, which showed gastritis (inflammation/irritation) caused by a pool of bile backed up in her stomach from the gastroporesis. Her symptoms were always worse right after meals. She felt great right after her endoscopy because they sucked all the bile out out of her stomach that shouldn't have been there! With the addition of new medicines, and carefully watching her diet to see what seems to work (and what doesn't...) she is doing much better. And you will too!

    My mom was on reglan already but we were also concerned about the side effects. We have started domperidone, and it seems to be helping without any clear problems. It is often given 3-4 times per day, 30 min before meals and at night. It helps the stomach to empty properly. Yes, we have to order it from Canada, and I will still try to submit the receipts to her insurance company to see if they will pay for it (you file as an "international claim"). Fortunately, it is not crazy expensive, but of course it all adds up. For us, it was $90 for 3 months supply. If her dose needs to go up, then it may cost more.

    Do you have gastritis/irritation of your stomach lining? Then you may need to be on a PPI (proton pump inhibitor) as well, at least once or twice a day. This may help the pain/irritation, and I would think your dysreflexia as well.

    If you continue to have nausea, then I would ask for scripts for the "big gun" for nausea - zofran. It's generic now, so even though it is still pricey hopefully your insurance will pay for it (but you may need a letter from your doctor to argue for your need - we did). Take it around the clock for awhile (every 8 hrs) until you are feeling better, and then start decreasing your use (eg. twice a day, then once a day, then only as needed). I found that zofran alone didn't do the trick for my mom. Only once she was on the domperidone + PPI did she really get better. Oh, and once they sucked the bile out

    As you're getting the symptoms under control, you need to focus on your health and nutrition. Make sure you hydrate, as I am sure you are under-eating and getting dehydrated if vomiting. Talk to your gastroenterologist about food recs and see the attachment below, but I would hesitate cutting out TOO many food choices before you know for sure what makes your situation worse. We start out slowly in the morning, not too much food at once. Are careful about coffee (ouch!... bad for my mom), a lot of grease, too much fiber at once, a lot of fresh fruits, tomato. We don't avoid protein or dairy per se, and do even try risk things in small portions. She seems to manage yogurt ok, and that is a nice source of nutrition. Yes, go for the protein shakes - we make smoothies out of banana/berries/protein powder/a little milk + ice - and just not too much at once. Sure, mash up foods. Our favorites at the moment are mashed sweet potatos and butternut squash. So good for you! Try some seafood... so good for you. But maybe not mashed...

    Good luck to you! It really should get better....

    Below is a nice summary/reference from a Government sponsored/NIH website giving some general info about gastroporesis. Maybe too basic for you though.....:

    Several drugs are used to treat gastroparesis. Your doctor may try different drugs or combinations of drugs to find the most effective treatment.

    Metoclopramide (Reglan). This drug stimulates stomach muscle contractions to help empty food. It also helps reduce nausea and vomiting. Metoclopramide is taken 20 to 30 minutes before meals and at bedtime. Side effects of this drug are fatigue, sleepiness, and sometimes depression, anxiety, and problems with physical movement.

    Erythromycin. This antibiotic also improves stomach emptying. It works by increasing the contractions that move food through the stomach. Side effects are nausea, vomiting, and abdominal cramps.

    Domperidone. The Food and Drug Administration is reviewing domperidone, which has been used elsewhere in the world to treat gastroparesis. It is a promotility agent like metoclopramide. Domperidone also helps with nausea.

    Other medications. Other medications may be used to treat symptoms and problems related to gastroparesis. For example, an antiemetic can help with nausea and vomiting. Antibiotics will clear up a bacterial infection. If you have a bezoar, the doctor may use an endoscope to inject medication that will dissolve it.

    Meal and Food Changes

    Changing your eating habits can help control gastroparesis. Your doctor or dietitian will give you specific instructions, but you may be asked to eat six small meals a day instead of three large ones. If less food enters the stomach each time you eat, it may not become overly full. Or the doctor or dietitian may suggest that you try several liquid meals a day until your blood glucose levels are stable and the gastroparesis is corrected. Liquid meals provide all the nutrients found in solid foods, but can pass through the stomach more easily and quickly.

    The doctor may also recommend that you avoid high-fat and high-fiber foods. Fat naturally slows digestion—a problem you do not need if you have gastroparesis—and fiber is difficult to digest. Some high-fiber foods like oranges and broccoli contain material that cannot be digested. Avoid these foods because the indigestible part will remain in the stomach too long and possibly form bezoars.

    Feeding Tube

    If other approaches do not work, you may need surgery to insert a feeding tube. The tube, called a jejunostomy tube, is inserted through the skin on your abdomen into the small intestine. The feeding tube allows you to put nutrients directly into the small intestine, bypassing the stomach altogether. You will receive special liquid food to use with the tube. A jejunostomy is particularly useful when gastroparesis prevents the nutrients and medication necessary to regulate blood glucose levels from reaching the bloodstream. By avoiding the source of the problem—the stomach—and putting nutrients and medication directly into the small intestine, you ensure that these products are digested and delivered to your bloodstream quickly. A jejunostomy tube can be temporary and is used only if necessary when gastroparesis is severe.

    Parenteral Nutrition

    Parenteral nutrition refers to delivering nutrients directly into the bloodstream, bypassing the digestive system. The doctor places a thin tube called a catheter in a chest vein, leaving an opening to it outside the skin. For feeding, you attach a bag containing liquid nutrients or medication to the catheter. The fluid enters your bloodstream through the vein. Your doctor will tell you what type of liquid nutrition to use. This approach is an alternative to the jejunostomy tube and is usually a temporary method to get you through a difficult spell of gastroparesis. Parenteral nutrition is used only when gastroparesis is severe and is not helped by other methods.

    New Treatments

    A gastric neurostimulator has been developed to assist people with gastroparesis. The battery-operated device is surgically implanted and emits mild electrical pulses that help control nausea and vomiting associated with gastroparesis. This option is available to people whose nausea and vomiting do not improve with medications.

    The use of botulinum toxin has been shown to improve stomach emptying and the symptoms of gastroparesis by decreasing the prolonged contractions of the muscle between the stomach and the small intestine (pyloric sphincter). The toxin is injected into the pyloric sphincter. [Top] Hope Through Research

    NIDDK's Division of Digestive Diseases and Nutrition supports basic and clinical research into gastrointestinal motility disorders, including gastroparesis. Among other areas, researchers are studying whether experimental medications can relieve or reduce symptoms of gastroparesis, such as bloating, abdominal pain, nausea, and vomiting, or shorten the time needed by the stomach to empty its contents following a standard meal.

    Points to Remember

    * Gastroparesis may occur in people with type 1 diabetes or type 2 diabetes.

    * Gastroparesis is the result of damage to the vagus nerve, which controls the movement of food through the digestive system. Instead of the food moving through the digestive tract normally, it is retained in the stomach.

    * The vagus nerve becomes damaged after years of poor blood glucose control, resulting in gastroparesis. In turn, gastroparesis contributes to poor blood glucose control.

    * Symptoms of gastroparesis include early fullness, nausea, vomiting, and weight loss.

    * Gastroparesis is diagnosed through tests such as x rays, manometry, and scanning
    * Treatments include changes in when and what you eat, changes in insulin type and timing of injections, oral medications, a jejunostomy, parenteral nutrition, gastric neurostimulators, or botulinum toxin.

    National Digestive Diseases Information Clearinghouse
    2 Information Way Bethesda, MD 20892–3570

    Email: nddic

    The National Digestive Diseases Information Clearinghouse (NDDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health of the U.S. Department of Health and Human Services.

  6. #6
    My now 17 yr old son had gastroparesis since birth due to prematurity. At 9 months of age he had a feeding tube surgically placed due to only weighing 12 lbs at 9 months. He kept the feeding tube for 9 years. Today he manages ok but not the best. He took mega doses of Zantac and Reglan but his reflux and gastroparesis was poorly managed, thus the tube placement. My son is not SCI but has CP.

    For a number of years (7) he took a drug that helped gastroparesis. Propulsid also called Cisapride was found to cause cardiac and blood ressure problems----he was one of the patients that had severe blood pressure issues and a change in his QT waves. It was like a miracle drug except for pressures over 200/120 for a 2 yr old. no one thought it was the drug until folks started dying. We opted not to join the class action suit.

    It took awhile to get the vomiting and all under control and because he was growing, the issue took a lot of balancing.

    Keep a food diary--we were told to do that and it helped track what triggered his problems.

    Good luck Quad79
    Last edited by cheesecake; 06-08-2010 at 10:36 PM.
    Every day I wake up is a good one

  7. #7
    Cisapride was a great drug for some people, but due to its serious potential side effects, it has been taken off the market in the USA. Reglan is still used, but can also have some serious side effects. Some have used Urecholine, but this can cause serious bladder side effects as well as cardiac problems too.


  8. #8
    Thanks for the info & encouragement.

    CC, I didn't realize your son has CP. I can't imagine the toll gastroparesis took on a growing body. I hope his health is stable now.
    I've been keeping up w/ what passes easier & doesn't make me sick. I have a NOT AT ALL list, things I love but no longer crave b/c of how ill I get.

    hlh, thanks for the detailed post. Milk and certain cheeses blow me up to where I even have to sleep w/ a trash bag and can't eat for days. Many days if I wasn't up to eating, I drank milk to take my Macrobid. I was killing myself! High fiber does the same thing as do many veggies I love. I have a very painful time with red meat and anything greasy or fried. I'm feeling somewhat better since starting the more easily digestible diet. Protein is my biggest concern, I handle chicken & tuna the best. I still get a bit nauseated & have pain. Many of the higher protein veggies I would choose are off limits too. The only thing that doesn't tigger anything is noodles w/ broth, rice and sliced turkey. I've tried PPI drugs, Prilosec twice daily. It helped very little & caused lower quadrant pain.My endoscopy showed irritation & some bile but no gastritis or ulcers. I tried Zofran on one of my ER visits,but it caused agitation as did Reglan. I'm officially rehydrating, water doesn't taste so bad anymore & I don't need the coke & ginger ale now. Starting Uroquid has also increased my thirst alot, for that I'm grateful!

  9. #9
    Wow, Quad79, I knew you hadn't been posting much; but I didn't know about you being so sick! I'm so sorry. It sounds terrible. I don't know a thing about gastroparesis, so I don't have anything to offer there; but I do know a little about protein powder. I've been on a medically supervised high protein, low carb, very low calorie diet since February and have lost 44 lbs. Part of my challenge, however, is that I can not tolerate dairy products nor aspartame (in high quantities), so I use "Show Me The Whey" protein powder from EarthFare (it's sweetened with Stevia) and I mix it with low-fat soy "milk."

    I don't know if this is helpful, but I hope that you do find the answers you need soon!

    "The truth will set you free. But first, it will piss you off." -Gloria Steinem

  10. #10
    That does help, Danine! Alot! I'd rather eat my protein than drink it but I'm desperate.

    Congrats on the weight loss as I know it takes lotsa willpower...or illness! Pat yourself on the back from me. I hope you're feeling better.

    I have to laugh @ low sodium diet as I most likely need one by now. Over these past few months, before learning what foods were bad/good for me, I stayed on a Ramen noodle kick. It didn't cause any unwanted symptoms but damn, SODIUM OVERLOAD!

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