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Gastroparesis:

Just Imagine…

Can you imagine never being able to eat again? Hooking up to IV nutrition or tube feedings every day in order to live? Carrying your nutrition on your back all day or being attached to a pole all night? Or, simply having to “survive” on chicken broth, Ensure, and small bites of food all day long? And in spite of that, still dealing with malnutrition, dehydration, weight loss, abdominal pain, nausea, and vomiting on a daily basis?

Frequent trips to the ER and hospital become routine…just a part of life. Social activities are non-existent because most of them involve food. If you do go out, you end up ordering water, maybe a soda, and pulling that pack of crackers out of your purse to nibble at. You feel fortunate that you are even capable of keeping that down, realizing that many people in similar situations can’t. Making plans is a challenge. You may feel well and up for an outing, but then while out the symptoms attack and a planned fun-filled evening becomes a drag very quickly. That’s what life with gastroparesis and intestinal pseudo-obstruction is like.

These conditions are so poorly understood. They are so hidden that people often don’t believe they are real or are not as serious as they actually are. Although difficult to understand, patients suffering from GP and CIP may look completely healthy. They may drive, work, shop, go to church, take care of a family, and look great on the outside. Their color may be nice, they may look strong and energetic, and they may appear to be feeling well. Yet, the turmoil churning within them is by no means normal.

Remember the last time you had the flu. After 24 hours of nausea, vomiting, perhaps diarrhea, and aches and pains, you couldn’t wait to get back to work and your normal activities. As you tried to return to your routine activities, however, you did notice you felt weaker than usual. It was more challenging to get things done because you had a day of surviving on toast, crackers, and soup…not exactly a champions dinner!

Now, take that day and multiply it by years. Add medication, medical procedures, hospitalizations, chronic malnutrition complications, invasive treatments, surgeries, and additional illnesses that develop over time. You are getting closer to understanding what life with GP and CIP is like, but you are still not there.

On top of the physical issues, because the conditions are so poorly understood, people with GP and CIP often have to live with the challenges of stereotyping by society. It is often believed that patients are exaggerating their conditions because they don’t “look sick.” Others believe those who suffer really just have an eating disorder and use a “mild” condition as an excuse for not eating well. People simply don’t understand that a couple sips of soup can send one’s gut into a frenzy and result in hours of nausea, abdominal pain, and vomiting. Sometimes this lasts even for days. One wrong bite of food can result in a bowel obstruction and trip to the hospital for an NG tube for suction or surgery to remove the blockage. There are no cold and flu treatments to help symptoms or treat the conditions at all. At best, patients can try some anti-nausea medications with nasty side effects, or drugs that are so expensive insurance companies only provide 12 a month…so they have to decide which 12 times a month they are sick enough to take it. On top of that, any drugs that may help are pulled from the market and no longer available. Once that is removed, even if restarted through compassionate clearance programs, they never quite work as well again. But the odds of getting on that program are slim to none. They feel like everything has been taken away from them…not only health, a normal life, food, and even friends and family who jump ship, but the only treatment that keeps them even somewhat functioning.

Think back again to the day you had the flu. You probably did not want to lift your head off the bed or couch. You felt too weak to make it to the bathroom. Every time you sat up, you felt your head spin and the nausea increased even more. Finally, it was a battle of determination to force yourself up and walk to distance to the bathroom. While you were up, you tried to grab as many items as you needed so you didn’t have to get back up again for a long time. By the time you get back to bed, you were so weak and wiped out that all you wanted to do is sleep or watch TV. But you couldn’t get your mind off the nausea. It was so overwhelming that you curled up into a ball on your side and just waited for it to pass. You took flu medication in hopes of sleeping it off and had hope that tomorrow would be better.

People with GP and CIP don’t have that hope that tomorrow will be better right now. Each day varies and some are better than others, but inevitably the bad days will always come back. There are limited options to treat symptoms, but they don’t work well. Patients are basically told to “live with it.” In some cases, it can’t be lived with. While most people with GP get by on what is available, because there are no other options, quality of life is certainly very poor. Many survive on less than 1,000 calories a day, severe weight loss, disability, tube feedings, IV nutrition, medication with nasty side effects, and a life full of invasive medical treatments and hospitalizations. GP and CIP are not just simple illnesses which can be cured through diet changes, medication, or surgery. They do not mildly impact life. They have a profound influence on every daily activities, regardless of severity. There is no escape. Is this the kind of life a person wants to “just live with?”

There are also many situations in which living with GP and CIP are no longer an option. In severe cases, chronic malnutrition takes over and people are unable to survive the trauma on the body. The body often quits absorbing, organs shut down, and the liver may fail for those who have been on long term IV nutrition. Veins become inaccessible and there is no way for them to receive nutrition. Some who are fortunate enough to be aware of the option and be eligible may pursue a five organ transplant as a last resort to stay alive. While this can be miraculous and life saving, it doesn’t come without its own complications for life. Individuals who reach this level of severity have become desperate. There are no options. They either risk their lives by going through a transplant, recognizing that even if they make it to the transplant and out of the OR, they face a lifetime of complications and possible organ rejection. But the only other option is starvation. There’s not really a choice when you get to that point.

Living with GP and CIP is hard to describe. The best patients can do to help others understand is to tell people to consider what it would feel like to have the flu, every single day, and the impact that would have on your life. But then you have to throw in additional health problems and the stereotypes, comments, and claims by others that what they deal with is not real and not worthy of attention. Because they don’t “look” sick, family and friends who don’t believe put a wedge between them or completely leave, believing that the person is trying to use a mild condition to “benefit” from resources such as disability, have an excuse to get out of unwanted duties, a way to receive special parking “privileges,” and other accommodations at work and school. They are often looked at oddly when forced to admit they are on disability because of a “stomach” problem, can’t lift a box of sodas into their cars because they are too weak, get glared at because they park in an HP spot but get out of the car walking, and dealing with other colleagues and students who are jealous of the accommodations received to make life easier to live and adaptation into society easier.

GP and CIP need more attention. People don’t understand what it is really like to fight these conditions and what daily life is like for those who suffer. They are downplayed as simply being conditions that can be controlled if “you would just eat correctly and avoid certain foods.” While in some instances this is true, there is a very wide spectrum to the level that people die from these conditions as well. If not to the point of dying physically, many are unable to truly “live” at all as GP and CIP zaps the life out of them. Note how long it took you to recover from just a 24 hour flu. Then realize that in GP and CIP there is no recovery. There is no in between. It is a daily battle, with ups and downs, unknowns, and a life full of complexity and misunderstanding. Try to step into their shoes for a short time. Next time you have your head in the toilet, imagine life like that every day. Be thankful for what you have. Be thankful you will recover and life will return to normal. And remember those whose lives will never return to normal. Give back. Help them fight. Support them. Try to understand. Let them vent without judging them. Encourage them. They often lack self-confidence because they have either been judged so much or feel as if they are incapable of accomplishing important things because of being ill. Also, realize that you are dealing with some of the strongest, toughest, people you will ever meet. Thank you for taking the time to read this and step into the lives of those suffering from GP and CIP for a short time.

Definition:

From Wikipedia:

Gastroparesis, also called delayed gastric emptying, is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for a longer period of time than normal. Normally, the stomach contracts to move food down into the small intestine for digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not work normally. Food then moves slowly or stops moving through the digestive tract.

Symptoms:

* Personally experienced

Causes

Causes of gastroparesis vary between each individual patient just as the symptoms vary. However, it is hypothesized that damage to the main nerve controlling stomach function (vagus nerve) causes most cases of gastroparesis. Damage can be from the common virus, abdominal surgery and diabetes. Sometimes the cause of gastroparesis is never determined and this is called idiopathic gastroparesis.

Tests

Diagnosing gastroparesis is often a matter of elimination. This is because it doesn’t always show up in tests. There are ways to directly diagnose it, but they are by no means a way to prove someone isn’t suffering from gastroparesis. Common diagnostic tests include but are not limited to:

Treatments

* My personal experience with all types of treatments can be found here.

Because the cause of gastroparesis is often unidentified, treatment aims more at controlling symptoms, rather than curing the problem. Treatments come in all forms such as diet changes/restrictions, medications, enteral nutrition and even surgery in the most severe cases.

Diet changes are often made based on the fact that the stomach is slow or non-functioning. Anything taken by mouth that would further slow down digestion is to be avoided. Foods high in fiber or fat will slow down the stomach. Vegetables, red meat, fried or fatty foods are all on the list of foods to avoid when you suffer from gastroparesis. Same goes for anything fortified with fiber. I find that staying away from any artificial sweeteners is also beneficial.

When diagnosed with gastroparesis and a change in diet is your first step of treatment, it is important to consult with a dietician or nutritionist to make sure your body is receiving what it needs. They can also help develop meal plans in oder to eliminate the foods that may cause more intestinal distress due to gastroparesis. Everyone is different. What foods work for one individual, may not necessarily work for another. This process is often slow but necessary so you don’t continually make yourself sick by eating the wrong food for your body. For more information on GP diet guides, visit GPDA’s Gastroparesis Diet.

When diet modification isn’t enough to control the symptoms of gastroparesis, medication is often the next step in treatment. Medications aim at increasing motility of the digestive system, especially the stomach. These medications include:

* My medication experience and list of maintenance medications

If medications are not effective enough, the other options such as tube feeding and surgery for a gastric neurostimulator should be investigated. These are usually last resort options. Medications and diet modification is usually enough to control symptoms.

Tube feeding is generally directed straight into the upper part of the intestine called the jejunum. It bypasses the malfunctioning stomach and is able to deliver nutrition. There are many different types of tubes from nasojejunal tubes (usually temporary to determine if you are able to handle tube feeds and is often placed endoscopically, under sedation by your GI or radiology), surgical tubes, endoscopically placed tubes (PEJ), and low profile tubes. Low profile feeding tubes are generally placed only after the stoma site has fully healed from a PEJ. It is important that the tract between the stoma and intestine be fully formed before a button is placed. If that tract breaks down during the procedure, you might experience complications like me. Your doctor can discuss with you, the best tube for your situation. I have had all four types of tubes as seen below.

Kimberly-Clark Jejunostomy Low-profile Feeding Tube and dressing

* My tubes experience

The final stage in treatment is surgery. The current type of surgery performed is implantation of a gastric neurostimulator. A gastric neurostimulator, or stomach pacemaker, helps control nausea and vomiting by electrically stimulating nerves in the stomach. For some patients, the relief is instant while others take up to a year to notice any difference. It is not approved for improving gastric emptying but many hope that with time, they will notice a difference in that as well.

The surgery for a neurostimulator is typically between 1 and 2 hours with a hospital stay of 2-3 days. Pain from the procedure is like any other open surgery. For me, pain was easily controlled through IV medication and at home with oral medication. I required only a week or so for recovery before I felt well enough to get out and do things. The device can be remotely accessed in your doctor’s office after the procedure. Adjustments are made individually and many adjustments are usually needed to fully take advantage of the device.

* My surgery experience

Advancements?

There are positive advancements being made in the treatment of gastroparesis.

Tranzyme

Also known as Ulimorelin, this drug Tranzyme Pharma (TZP) has shown extremely positive results in controlled testing of diabetic gastroparesis. It has shown to be a potent prokinetic drug, significantly reducing nausea and vomiting while promoting gastric emptying. The furthest testing phase is seen with the IV delivered drug (TZP-101) but the oral (TZP-102) trials are not far behind. If this drug does what studies show it to be doing, it would be a very exciting bit of information for so many of us plagued by the disease of gastroparesis (idiopathic or otherwise) and the symptoms it produces.

To follow the progression of the developing treatments of TZP, visit:

* For more information centering around gastroparesis, feel free to visit my Recipes page, Spoon Theory page and Open Letter *

  • 46 Responses

  • Janice says...

    Finding this website is such a blessing! My 23 mth old son has just been diagnosed with gastroparesis. He was always little for his age but ate appropriately up until 18 or 19 mths of age. Then, out of the blue (or so it seemed) he refused to eat anymore solid foods. It has been a 4 mth journey to get to his diagnosis. First was FTT. He also has reflux for which he has been medicated (prilosec) for 2 mths. We just started him on erythromycin for the gastroparesis, but so far there has been no improvement. We are scared and frustrated. He just isn’t ever hungry, despite offering him his ‘favorite’ foods. We have tried everything possible and nothing is working. The positive side is that he loves his supplements and has been getting 99% of his calories/nutrients via Boost, Pediasure, etc.
    We just did allergy testing and the only thing he is allergic to is cats. All foods came back negative.
    Is this something he will have forever? Or will he ever outgrow this?
    We are just so scared.

    Thanks – Janice

  • Kirby says...

    Hi Janice!

    I am so happy that you were able to find help in my blog. That is why I write it and to have such confirmation really does help me continue to keep writing. Gastroparesis is not easy to live with but there are so many varying degrees of the disease that it is difficult to generalize it into a treatment or prognosis, even for his doctor. I lived off of Boost/Ensure for a long time too as well as Omeprazole (Prilosec) which I am still taking. I did end up becoming sick of it and turned to tube feeding as an alternative and I have to say, it has saved my life. Seeing where my life was going at the time, without the intervention, while difficult to adjust, I would not have made it. It is with the hopeful hearts of doctors and family members that the pacemaker I had placed earlier this year, that I will come off tube feeding in the near future if my stomach starts working again through its use, but it is a comfort to know that if it doesn’t, I will still have some way to keep nutrition and weight.

    I am like your son and am not allergic to any foods except for every outdoor mold imaginable. They hypothesize that I came down with a virus sometime ago which destroyed part of my nerve that controls the contractions of my stomach. The gastric neurostimulator helps regulate those contractions to empty and reduce the 24/7 nausea I experienced before it was placed. I never had vomiting symptoms, just nausea, pain, massive distention, early satiety and constipation. Some people with virus induced gastroparesis do actually recover fully, while others don’t. It really depends on why he got it in the first place, how far along it is and a whole bunch of other factors that are difficult to determine. Unfortunately, gastroparesis is so new to the medical community there are few doctors who truly understand it to the point of being able to help. I can put you in contact with my gastroenterologist if you had any further questions or if you wanted to get in to see him. Otherwise you could just let it run its course and see where it goes. People on the Inspire Boards are very helpful as well for questions that you have and you can find them here:

    http://www.inspire.com/groups/agmd-gi-motility/

    The unknown can be scary but the more you try to understand the less scary it becomes. I find it more frustrating than scary now – we just need more doctors to pay attention so we can get better care!

    Take care and keep me updated on how your son is doing!
    ~ Kirby

  • Kaila Mcisaac says...

    Excellent indeed. I have been looking for this information.

  • Andrea says...

    I am in the early stages of GP and I am already having a really hard time tolerating oral feedings (even Ensure). I am dehydrated a lot and wondering when I should consider talking with my GI doc about tubes. I am on reglan but there are conflicts with other meds I take for other medical problems. I am in so much pain even when I drink water. Also how should I approach the topic with my doc? And info would be very helpful. Thanks.

    Andrea

  • Kirby says...

    I’m sorry to hear you are suffering with GP. It is not a fun road to go down. Have you discussed your discomfort and pain issues with oral feeding with your GI doctor already? Perhaps getting his opinion first, would be a good starting point. Are you losing a lot of weight? Reglan isn’t the only medication that is approved for gastric emptying. There is also Erythromycin and Domperidone. Domperidone is actually not approved for use in the United States, but can be obtained through pharmacies in Canada with a doctor’s prescription. Your GI doctor would know how to get it, if he knows anything about gastroparesis. Erythromycin is actually an antibiotic and has a side effect of increasing gastric emptying. Sadly our bodies get used to the drug and it will wear off over time. But you could still try those drugs to see if they work, if you haven’t yet. Once all medications have been exhausted, and you are dangerously losing weight, the next step would be to put down an NJ (naso-jejunal) tube. It is a temporary tube placed in your nose that goes all the way to your jejunum. If you tolerate the feeds, then a permanent one can be placed and you’ll sort of take it day by day from there.

    There is no right or wrong path with Gastroparesis as it is different in every patient. But the things I mentioned above, are things you can bring to your doctor. If you are in a lot of pain, make sure to tell him that. Be up front with your doctor. Tell him how you feel and what you want (goals, methods of treatment, etc.,)I cannot stress it enough, you must find a GI doctor who you trust, who you know listens to you, and who has your best interest in mind. Without that, communication is broken and treatment will fail. I ran in to some horrible doctors before I found the right one, and I’m so glad I did. I’m gaining weight and feeling better. Granted, I still have flare-ups, still have ER trips and hospital admissions (all part of just having GP), but they do not happen nearly as often as they did when I wasn’t on the right treatment plan.

    Good luck and please keep me posted! Feel free to come back with more questions!

    - Kirby

  • Bryn says...

    Hi Kirby, thank you so much for sharing your story. I was recently diagnosed after a year of vomiting/nausea/syncope/dizziness/abdominal bloating/burping/and sweating. After a year of your family doctor, two GI specialists and a therapist telling you you’re just depressed, well, you get pretty depressed! Fortunately I found an AMAZING doctor who listens and works with me. On my last option now though, domperidone. My insurance (and I work at the major hospital in this area) won’t cover the botox or the gastric pacer. I have lost 54 lbs and am down to 100 even. At 5’1″ that isn’t bad, but I continue to struggle to keep the weight ON and not loose any more. I do find that the weeks surrounding my menses are the worst. I blame the spike in progesterone, but who knows… I just thank you so much for making me feel a litte more “normal”. You give me hope :) God bless!

  • Kirby says...

    Bryn ~ I’m so glad you found doctors who are willing to help you through this journey. It’s not easy, and we all have our days (sometimes months!) but with a good support network, we make it through. I hope Domperidone works for you. It does in a lot of patients. Keep me updated and let me know if the medication helps at all. Good luck and happy tummy days!

  • Jennifer sheives says...

    I just past a year of GP. I have a PEG and have two questions. What is that CUTE barrier between the tube and stomach? And at what point did you decide to do the pacemaker?

  • Kirby says...

    The dressing is called My button buddies you can find them at their site. They are amazing and way cute. They are also super soft so no extra bandage is needed. It always kept my stoma dry and happy :) I always went for the girlie prints because they were too fun. The skin colored ones were BORING!

    I decided on a pacemaker or “neurostimulator” for controlling my GP when I was stable enough, weight wise, to have it done. My doctor really wanted me on that first to see if I could regain any function in my stomach to avoid needing a J-tube. In the end, I did require that and now I’m on TPN with no j-tube. The pacer does help with my nausea though. Why do you have a PEG? you mean a PEJ? I hope your tube is going into your intestine and not into your stomach if you were diagnosed with GP. A tube in the stomach won’t help you but one in the intestine will. If your doctor thinks you are a good candidate for the pacer, they should be able to recommend it. If they haven’t brought it up to you – definitely do that yourself and see what your doctor says. Just make sure the one doing the surgery is approved by the Medtronics group to do the procedure. I’ve seen some patients go in and have the surgery done all wrong and the pacer never was given a chance to work.

  • Jane says...

    One question: do you know of any support groups in the Seattle or Kitsap Peninsula area?

  • Kirby says...

    The only ones I am aware of are through Facebook. There is a great G-Pact facebook group there, and enough of us in the group live in Seattle to form a meeting group that gets together once or twice a month (depending on the weather and the amount of people able to show). Find me on Facebook and I’ll get you an invite into the group as it is closed. Happy Tummy Day!

  • Jennifer sheives says...

    Kirby,
    I guess it is a PEJ. Lol.
    We have discussed the stomach pacemaker, but I am very hesitant. Just nervous. Had mammometry, clogged stent, Botox, and now the tube. Just hope it would just go away. I have ONE good day, then a week in bed. It is no way to live.

  • Kirby says...

    Yeah – it most definitely isn’t a way to live. I understand the one good day and then a week recovering. It is hard not to do your normal stuff when you are feeling good. Often times, you overdo it and end up paying for it later. That’s what happened to me over the weekend and then ended in the ER all Tuesday getting medications and fluids. Such is the life of a GP’er. I hope tonight you find relief and have more good tummy days this week.

  • Christina says...

    Hello, My name is Christina and my husband is suffering horribly from GP which was brought on by diabeties type 2. He is going to the hospital almost every week from flair ups were his pain meds do not help, this has been the case for 2 years. Every week for 2 years we are in the hospital. The only meds that will help him stop vomiting uncontrollably is iv deluided and zofran and phinergan. He is 36 and he is so depressed. We have had doctors misdiagnosis him and say the pain meds are causing his tremendous pain and the vomiting is from withdrawal. We were accussed once of hospital shopping because they found barium cat scan fluid in his stomach from previos er visit. The doctor did not believe me or him that it was from a previous week and labeled my husband a narcotic abuser. FInally after I searched endlessly on line I found GP and the sx were dead on. We have tried erithromyicin and regaln. The reglan causes fainting spells so I made him stop and only take it IV when supervised in the hospital. We live in Cocoa Beach Florida and travel every 6 months to SHANDS University of FLOrida, where not much has been done. I am looking for feed back on what helps the pain. My husband hates ensure and boost. He will live on ice cream and soup and the flare ups still come. I have also heard medical marijuana helps. I am interesting in hearing what helps you not vomit, have controled pain and live a month with out going to the hospital. We are so emotionally drained and I am 29 he is 36 and we want a family. Please any feed back will be so appreciated.

  • Jennifer Sheives says...

    So, I just spent another day I ER and during our early family Christmas last night I was in bed. Up early this morning because of immense pain.
    Can you elaborate about your decision to do the pacer?
    I am seeing my gastro in a month and want to take more proactive steps rather than just doing the tube feedings and all the drugs.
    May I ask where you live? I am in Maryland. I ask, because NO one who I am close to (besides my amazingly loving husband, who would give anything to take this on for me, if not forever) gets this. I feel so lost and alone. When people see me, they care. But once I am out of site, there are no calls or emails. I basically lay in bed and life outside goes on. My thirteen year old daughter is now basically the mother to my nine year old son. While I am so happy this did not happen when they were younger, I can’t help but be so mad that I am losing out on so many moments with them. I just have no energy to do anything. There are not many “face to face” support groups that have people in my age group around me. It seems they are all diabetic and older. I am 34. They seem to be 55 or older. I just can’t relate.
    Okay, I have had a bad week and apparently needed to whine a bit. Thank you. :)
    Hope you are doing well and having more good days. How long have you had this? I just past sixteen months.

  • webtv says...

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  • Jenna Tankxley says...

    I saw this program and would like for my wife to watch it on CNN. It’s Sept. 5. Any chance CNN will reboradcast again and if so, when?Thanks

  • Laura says...

    Hi Kirby, and thanks so much for your blog. It makes for great reading. I was diagnosed with ‘GP’ four years ago – in my case secondary to another disease called Complex Regional Pain Syndrome (CRPS/RSD). I lost a horrendous amount of weight and almost my life with it (I’m 5’4 and weighed less than 60lb at my worst). I vomit constantly with mine, and have such extreme bloating that I look like I’m in danger of giving birth at any moment!

    Every nutritional supplement dieticians have thrown at me, my body has thrown right back again, every enteral formula we’ve tried causes intense pain and bloating. My doctor would never do a J tube anyway as I am not strong enough for any invasive surgery – I am super prone to infection and my last surgical wound took 4 months to heal. Even a PEJ isn’t a likely consideration as I have a spinal cord stimulator and intrathecal pump already over my abdomen. Pacing is out for the same reason. Tried botox, but it made my pain substantially worse.

    Also found a total inability to tolerate metaclopramide or domperidone, and not allowed cisapride because of a heart condition.

    Any thoughts? Is there anything you’ve tried or encountered in your travels that I’ve not mentioned there? Many thanks.

  • Kirby says...

    That is an awfully difficult situation you are in. It would be unwise to place a central line in someone who is prone to infection. As you know from my septic experience, it is not something you want to go through, even just once. They should find out why you are prone to infection and see if there is any way you can reduce that enough to safely place a central line (even if it is just a PICC) to get nutrition into you. If you read up on the patient Brittany, you will see her infections were caused by bacteria present in her colon and intestine, translocating to her blood and settling in her central lines. It was infection after infection with her, with her latest hospital stay being over 6 months, until they agreed to remove her colon (she had an ileostomy anyway) where they found that the lining of her colon was so thin it was due to rupture at any time which would have undoubtedly caused death.

    I have a gastric neurostimulator but was still a candidate for the pain pump/spinal cord neurostimulator for pain. You’d have to find someone willing to move those pacers around. When I was being considered for it, they were looking to place it in my back, not my abdomen (the spinal cord neurostimulator). If you could get someone to move your pacers/pumps around, you could possibly trial the gastric neurostimulator to see if you can keep food down comfortably that way. That’s what I would do anyway.

    I am with you on the botox. I think I blogged about it. It made the pain worse too. My doctor told me it was from irritation and swelling from the injection. We both agreed it had no affect on my emptying time and even with the pacer in for 2 years, my GP has gone from moderate to severe. But it helps tremendously with my nausea, for which it is prescribed anyway. Medications didn’t work in my case either. The only thing that has kept me out of the hospital is TPN through a central line. Do you know if you have any motility problems with your intestines? If not – I would push for a re-positioning of your pumps and pacers to allow for a J tube before your motility progresses (if it does – it doesn’t always). J tube feeds are way safer than TPN. But sometimes, like in my case, it is all you have left once the motility problems progress to your intestines and beyond.

    I must ask though, what medication you receive through the pain pump? I need to have something like that placed and am seeing my new pain specialist for the first time in two weeks and want to bring that up. I can’t go on taking the liquid stuff as not all of it gets absorbed in my stupid digestive system and IV pain meds are out of the question now that I’ve had an infection in my port. Do you get migraines? Would a pain pump also help with that?

    Hope you have a good night and get some relief from the nausea and vomiting. I have nausea 12/10 sometimes and never vomit. Sometimes I wish I could :(

    - Kirby

  • Julie Henry says...

    Kirby, your website and your posts are invaluable. I am at the point now of facing some type of tube feeding as my weight continues to drop and I’m significantly underweight. I am always nauseous and get sick several times a day whether I eat/drink or not. I can’t tolerate reglan or phenergan and am on zofran which is not always effective. I’ve had 2 botox injections and continue to worsen. I’m wondering if any type of tube feeding/NG tube/PEG/etc actually stops the nausea, vomiting and constipation. I’ve been anxious to get something done (I go back to the Mayo Clinic in Jacksonville in 2 weeks), but am not sure if any type of tube feeding will alleviate the nausea, vomiting and constipation associated with GP. I’m having an Entire Gut Transit Study (4 day process) at Mayo and my gastro said we’ll decide from there what is appropriate. I have read some scary things about tubes (infections, etc) and am hoping to find something that helps as I get weaker and thinner each day. Thank you for taking the time to read. Sincerely, Julie

  • alyssa says...

    Hi Kirby, I am 23 and finally got diagnosed with GP-went through a year of misdiagnosis before finally getting an emptying test. I just wanted to say how much I appreciate you writing about your experiences–I have given friends and family this website to read up on so they can possibly begin to understand what I am going through. I am still at the early stages of figuring out what will work–Tried reglan, but as it made me extremely depressed and makes me pass out within an hour of taking it, it wasn’t for me. I’m meeting with my GI doctor tomorrow after another ER visit for throwing up blood/chest pain/nausea (funny how you can get an appointment so much sooner after you tell them you were in the ER for complete dehydration)–going to try and get the domperidone. again, thank you for your words and being so strong because knowing that you are surviving this gives me hope that I will too. (the GP has gotten much, much worse within the last 4 months). So, thank you, thank you, thank you, it means the world that someone knows what I’m going through.

  • Alison says...

    hi im in hospital have been for 5 weeks now n just been diagnoised with GP its scard the hell out of me but i dont undertsand any of this it just makes me cry reading it n knowing i have this plz can anyone offer some help n advice thank you

  • Andrew Harvard says...

    Hi Kirby, thank you for all the time, effort and knowledge you put into this blog. My Mom had her whole small intestine removed 3 weeks ago. She desperately wants to go home (still in hospital) but hospital staff don’t see it quite that way. She can only “eat” via TPN.

  • Craig says...

    Wow Kirby, I am so glad to have stumbled on this site. My fiance has just been diagnosed with GP. I have watched her quality of life disappear in the last 6 months. I watch her sit home 7 days a week and not be able to get off the couch. I watch her get more and more depressed. To the point where I don’t want to go to work because I am afraid of what she might do while I’m gone. We are on our 3rd hospital now trying to get her help. We are in the ER every 2-3 days. It is an awful disease. She is in so much pain but, they will not give her pain meds because they say that narcotics make the condition worse. They told her to take tylenol. She is on reglan and the dissolvable zofran (which her insurance won’t cover). I am hoping there is a light at the end of this tunnel because I am not sure how much more she can take. But, I am hopeful that with so many people suffering from GP maybe she can find help.

  • Jess says...

    Hi Kirby,
    My name is Jessica. I don’t have GP but I had Stomach Cancer and my whole stomach removed. I suffer from everything you have described above and still do. I’ve had 4 picc lines in my arms, which caused me to get septic 4xs and had to have a blood transfusion. I’ve had 1 J Tube placed in my intestines which caused a a lot of pain and my feeds would bloat me and run right through me. Come to find out, I’m lactose intolerance now from the surgery. I’ve been on a Hickman Port for my TPN feeds for the past 4mths. I am 4’10″ and I used to weigh 100lbs before my surgery, and I am now at 68lbs. The only thing keeping me alive barely is my Hickman. I just had surgery yesterday on December 11th, 2012 to have another J Tube placed and this time get better nutrients that are Milk free. I still have to stay on my Hickman Port and the tube feed and use both to get fed. My GI Dr wants to make sure I can tolerate the Tube Feed this time and if I do well on it, then in a month they are removing my PEJ and place a Low Profile Button Peg.. I was diagnosed with Signet Ring Cell Cancer on November 26,2010 at the age of 34. I turned 35 in December. I had the surgery on Feb 28th,2011. It’ll be going on 2yrs of pure Hell for me.. I’ve been in the hospital 46xs, had MRSA,C-Diff,Dehydration,Fevers,and the list goes on and on.. I get Dumping Syndrome all the time too. My lowest weight was 55lbs.. I have the strength and energy of an 80yr old, and I can only do things for 15mins at a time and then have to rest for an hour.. I’m on disability now. I absolutely hate the way I look and feel everyday. The only thing that keeps me trying to fight is my 3 teenage kid’s.. I feel so bad though, like I’m a burden because I can’t do anything with them like we used to do. They help take care of me, instead of me taking care of them.. I can’t even bathe without my 13yr old daughter helping me.. And just like GP, there isn’t many support groups for Stomach Cancer Survivors.. I’m praying that the Low Profile Button Peg will actually benefit me and put weight back on.. And easier to maintain then the Feeding Tube hanging out of me and getting caught on everything, and my Hickman Lines getting snagged on everything also. Plus I can’t get my Hickman wet so washing my hair n body is very difficult. How do you like the Button Peg? GP and Stomach Cancer symptoms are almost identical, hence me telling you my story and also spread the word about the disease, because the Drs also don’t know much about it and if you don’t catch it early enough, it’s a death sentence.. Maybe I can find support here and I can support others on here..

    Thank You,
    Jess

  • Ashley says...

    I have been dealing with Gastroparesis for two years but every dr told me its stress there’s not a thing wrong with you. Which in return caused stress because I know there was something wrong it wasn’t in my head. After 2 very long years over 50pounds lost being 5’11 90 pounds we were given a test and found out Its not stress causing my problems at all. I’m waiting to get a feeding tube now to help. All the medicines interact with my other medicine so we can’t try this treatment. I made a couple of my friends read this so they would understand what I go through. Just reading this made it easier for them to understand my life. Thank you for having this up and allowing people to access it.

  • Sarah says...

    Hi Kirby!
    Thank u for all your information!..it has been helpful to me!..I was diagnosed this past year
    And have had every test under the sun. I’ve done Botox and medications with no relief.
    My doctor is going to do a pyloraplasty soon. I am wondering what your knowledge is on this surgical treatment?
    Sarah

  • Tammy says...

    I just want to say god bless you all stay strong hang in there

  • SantaFeJack says...

    Kirby,
    So pleased to find your site. I was just diagnosed with GP caused by prescription narcotic pain killers. I still need the pain control, but wonder if you are familiar with the outcome for recovery from GP once the narcotic use/ need ceases. I have been given Zofran this past month and it’s effectiveness at reducing my nausea is minimal. It appears to be the drug of choice but do you know of people not responding to it who did really well on other meds? I do appreciate your blog, but also find your own story quite scary. Do you think your degree of illness is common or rare? I’ve been virtually unable to eat due to nausea for five weeks ( no vomiting, thankfully) butit seems inconceivable this is going to be my life. At age 68 and having spent the last year in and out ERs because of pain flare-ups, I guess this latest “turn for the worse” has got me looking for a reason to be optimistic.

  • victoria ashwood says...

    im 27 and just got the diagnosis of gastroparesis, i also just got a j-tube and i have found reading your story to be very inspiring.

  • Beth says...

    I have recently been diagnosed with GP after about 15 years of stomach issues. I was actually relieved to find out there was actually something wrong with me, for a while I was made to think it was all in my head! I am overweight now, but had a massive weight loss about 15 to 20 years ago. I am an emotional eater, so when I am depressed about not getting to eat normally or enjoy time with my family, it is hard to stick with the liquids. I do not want this disease to affect others around me, but I know it is. I am not sure where to go from here. I am now taking Reglan, but not sure what the next step for me should be since I am not underweight, just sick of the pain! Any suggestions?

  • Amber says...

    Thank you so much for sharing your journey. My Mom was just diagnosed with gp and is experiencing very bad side effects from the reglan. She is going through a deep depresion and is experiencing severe anxiety because of the diagnosis. Your posts have helped me understand more of the road she is facing. Thank you again.

  • sarah says...

    I have been wondering how you are doing ….looking at getting a j tube. Did you story end well? Have heard some scarey tube stories please tell me it saved your life and are doing great.

  • Mary Ann says...

    I find it fascinating that after all of these years, there is finally a name to this horrible chronic and life altering illness. My onset of the illness was when I was 13. At the time doctors didn’t know how to treat the case and as I grew weaker and weaker, they transferred me to the arnold pamler childrens hospital, where i was placed with a PICC line in order to get lipoproteins and TPN into the body. After traveling all over the east coast, doctors at John Hopkins studied my case and determined it “Gastro-duodenal-dysmotility-syndrome. Aka a higher degree of Gastroparesis. For the next 10yrs I lived off of TPN, lipoproteins, and a couple other supplemental ivs. Although I was able to eat, I would immediately throw up the food. Eventually i was able to balance my level of wnergy w the food id take in and theow up. my body was able to evolve in a way that acid disnt form in the system. so not only nutrients stay in the atomach longer, but when they did vomit back up, my teeth werent deatroyed.Roughly at this point in my life, after 20yrs of living w this disease, I would estimate that due to this illness I have thrown up every meal everyday (sometimes 2 or 3 more given the nausea) to roughly say: over 43,000 times. How my mutant body is still alive after all this is beyond me. But I have survived without a PICC or port or an feeding tube for the last 15yrs

  • Tilly says...

    My 9 year old was diagnosed with gastroparesis two years ago. He’s thin and small, only 42 pounds. He has troubles eating fatty foods like meats and often carbs and cereals trigger a lot of pain. Does anyone know of some low fat foods that pack a little more calories than fruits? This kid needs to eat something with calories that doesn’t make him double over in pain!

  • Joe McG. says...

    Thanks for saying it in a way that easy to understand. This is the worst thing I’ve ever dealt with. I’m 42, a healthy type one diabetic, who ran a marathon in November of 2010. I switched jobs in 2011 and have always had trouble with GI distress when deign with stress. It wasnt until the third ER visit that I said something is wrong. Sadly it took until the seventh trip in eight months for them to do the gastric emptying study. From April 2012 to April 2013 I lost 48lbs. Dropping from 178lbs to 130!!! I now weigh less than I did in eighth grade. I describe this disease as being in a dark room and getting punched in the face and you know you’re going to get punched again but will it be in the second round of the fight or eighth or the fifth or the eleventh

  • Joe McG. says...

    It has basically ended my life. I feel like I’m not a man and I’ve nicknamed mysf the king of disappointment, because I’m the reason our plans always change. I don’t go on vacation with my famiky I didn’t take my son to drop him off at college and honestly I wish God would put me out of my misery. My wife is so stressed and it kills me to see it in her face. I adore this woman and I can’t do anything. We have become sick person and care taker rather than husband and wife, there’s no intimacy in our lives and I fear she will accidently find it In The form of another man. I cannot sleep I wake daily by three and seem to feel best until noon. By the time she gets home I’m sick. I’m depressed, I’m angry, I’m lost…….. I need HELP.

  • Elisha Weide says...

    Finding your blog gave me so much hope.
    I have had gastroparesis since 2011 and it has
    Severely complicated my life. I’ve lost
    Jobs because of it and not many seem to
    understand. I do not have a feeding tube
    but I still get sick most days. My energy is
    constantly lower than others. I hope that some
    Of your recipes can help out and that showing
    Your blog to others will help them better
    Understand where I’m coming from. Thank you so much.
    -Elisha

  • Pat says...

    Hi Kirby,

    I tried to send an e-mail message to you, but couldn’t get it to work. So, I’m sending this via the comment section.

    First, I want to say thank you: Thank you for sharing your personal experiences with Gastroparesis & CIP and the process you went thru for treatment, as well as bringing more awareness to these types of motility disorders. I have been following your blog and respective Facebook page. I came across your blog during my search for additional information and experiences; plus, my Nutritionist/Dietitian told me about your blog as well (imagine that). I have encountered other types of info, but none that approach it from a more personal viewpoint and specifically in regards to treatment modalities.

    Despite what you go thru yourself, you seem very strong and resilient. That gives me hope and comfort. You are such an inspiration for me, as well as a blessing to and for me, and judging by other comments on here (thru-out all the pages), to others as well who follow your blog. So, I wanted to thank you for sharing some of your journey and letting others follow you and see a little into your world/life living with Gastroparesis and GI motility issues, along with many of the associated problems/issues & treatments that go along with it all. I know from personal experience, it’s not easy living with GI problems.

    Anyway, I wanted to let you know how much your blog has touched my heart and, by sharing your experiences, how helpful your blog has been to me and I’m sure many others as well, who also follow you. You are a God-send to many. So, I wanted to tell you this first off.

    My second reason for writing is I wanted to ask if you would be willing to be in communication with me. As I read your blog, we seem to have some similarities. There are very few people I feel I can related to w/in my situation. Would you be willing to communicate via e-mail (as you’re able to, of course)? Or, just whatever you feel comfortable with. The other thing that intrigued me from reading your blog is the possibility of Mito as the underlying cause of your GP/CIP, which interests me as well.

    Just a little about me: I have Gastroparesis, GI Dysmotility and an overall slowing down of my gut. The Gastroparesis…I have been diagnosed for 10+ years now, was diagnosed back in 2003 after testing confirmed it, but I believe I had it for much longer than that, as I had been experiencing a lot of GI symptoms/problems for at least 5 to 6 years prior to being officially diagnosed (since 1997/98). We just never knew the reason why, until I got referred to a Gastroenterologist who happened to be familiar with motility disorders. I have a complicated history of GI problems, of which the Gastroparesis is just a part of it. I also deal with GI motility issues that extend beyond & involve more than just my stomach it seems; this includes the GI Dysmotility & the overall slow gut – not an official diagnosis yet, but we do know that my motility issues involve more than or go beyond just my stomach, and given my history we also know that it affects my intestines, just nothing specific. I am not sure if it’s an extension or progression of the GP, or a separate thing going on entirely, in addition to the GP. I also have other diagnoses as well. Anyway, that’s a little bit about me.

    I hope and pray that you are staying as well as possible. You will remain in my thoughts and prayers. Thanks again for sharing your experiences. I look forward to hearing from you, and hopefully being in further communication with you, as you’re able.

    Take Care & God Bless!

    Pat

  • Toni C says...

    I’ve sat here reading all of this to my parents, and it’s simply unbelievable to see how many feel exactly the same way I have for 10 years now. The feeling of being so misunderstood is no stranger to me. For years, I’ve suffered thru pain, nausea, vomiting, just all of it. I’ve had many blood transfusions, vitamin transfusion, iron transfusion, NG tubes, feeding tubes, central lines, picc lines, ports…it goes on and on. This year was the first year I had to have a shot for my bone marrow to produce red blood cells and started having seizures. A few years ago, both of my lungs were punctured multiply times by the attempt to put a central line in since I had no more veins that would support an IV. The doctor didn’t read the xrays after the process of trying to place the central line, and as I laid there dying, one nurse intervened on my behalf when she heard me saying that I could only breathe in and not out. She rushed me to the OR where I had 2 chest tubes placed, and God spared my life. I was so ready to just die to get away from this pain. EVERY day…pain. For years. I had not just grown tired, I was weary. Tired is an understatement. I ran into the same problems as some of you with doctors not wanting to relieve my pain because the narcotics would make it worse. Is that even possible to make it worse than what I was already dealing with? Well, I finally found the help I was needing at Baylor University Hospital in Dallas. My first procedure done at Baylor was the gastric stimulator. Although it did help with the nausea somewhat, it took a year to feel any measureable relief. It wasn’t until it was set all the way up to a 10 that it made a very big difference. After that, I was sent to the Pain Management division at Baylor. Thank the good Lord, on my first visit, my doctor, Dr. Toye, witnessed me in an episode of septic shock. She immediately decided that she would admit me, stabilize me and do a nerve block on my vagus nerve. I hope I spelled Vagus right. Lol She also placed me on Dilaudid, 4mg 3 times daily. FINALLY, someone saw that I could not live like I had been. She said we need to be able to help me ‘function’ again. I keyed right in on the word ‘function’. Oh, my gosh, someone gets it!, I thought. I hadn’t ‘functioned’ in years. It was such relief to have the nerve block and pain medicine together. I felt alive again, although the septic shock was still happening on a pretty regular basis. But, I wasn’t spending every single day of my life in bed at the hospital or in the bed at home, like I had for so long. The pain medicine enabled me to move around and get out some on the ‘good’ days without the effort it had taken before. The nerve blocks lasted approximately 3 months. So, in July of this year, Dr. Toye recommended we burn the nerve also to see if the relief would last longer. And, it has! Talk to your pain management team about this procedure. Now, the episodes of sepsis weren’t quite as debilitating as they had been in the past, although they certainly were no walk in the park, either. Then, my brother introduced me to a product that works better than even the strongest prescription strength laxative, Lactulose, and I’ve been able to stay out of the ER for 9 weeks straight. It’s a ‘tea’ that cleanses without dehydration, and prevents the build-up that causes us so much pain and becoming toxic, then having to have the painful NG tubes and all the other that we go through to have relief, which only usually lasts a very short time. The combination of the tea, the nerve blocks and the pain medicine, narcotic or not, has given me the longest break I’ve had out of the hospital in 2 years. I start my 9th week tomorrow. Woohoo! Thank You, Jesus! And, I go walking everyday now to try to rebuild the muscles in my legs that I’ve lost along the way. There IS hope! If anyone wants info on what products I’m using, you can email me @ mscantbwrong1119@yahoo.com. Please, never give up! I wanted to soooo many times. I just wanted to die. But, thankfully, I have renewed strength and a closer life to normal than I’ve had in 10 years this December. For, the ones just beginning this hard journey, you are not alone.

  • Kirby says...

    If you need someone to talk with, I’d love to help. Not sure why the e-mail isn’t working. You can try it again if you’d like. Kirby@livingwithgp.com Sorry that it has taken so long to get back to you. This has not been a good year for me. I’ve tried to do what I could, in terms of updates, but my responses have been slow. I apologize and hope that you are still in good health. Thank you so much for your expressed experiences and victories.

  • Ali says...

    Hey my name is Ali and I’m 23 I was diagnosed with gp almost 6years ago . Finally they told me gp after I had was 110 lbs and unable to keep anything down . Tried all the regular pills and diets and refuse to get the j tube . I was pretty depressed and unhappy generally I couldn’t function at all and the gut pain and nasty naseau controlled me . I have improved my quality of life over the past 3 years after being sick and tired of living with gp . It took me a long time to put together all the pieces to learn to keep for down . Here’s what I do to live life as comfortable as I can (don’t get me wrong I still and very sick every day but I can consume nearly 4000-5000 calories a day ) 1st step was to cut all pills . Within weeks I had lost so many side effects I was on the right track . Next my doctor set me up with medical marijuana (my parents were very against it until they saw me eat solid food at diner !they cried and life has never been the same since ) 2nd step was to increase excerzize since the marijuana allowed me to remove the naseau symptoms and pain , don’t get me wrong it’s not a cure but it’s a very good bandaid that allows temporary relief and healing . I could finally sleep and eat small amounts throughout the day . Still very sick but I would just lay down and wait for it to pass when a wave hit . So for excersize I began swimming with any extra energy I could get together slowly over 2 years getting stronger . My gp was caused by brain damage and post concussion syndrome so while living with gp I also had symptoms like being sensitive to light and sound , unexpected mood swings and the biggest challenge was speaking without a studded or slight dyslexia with putting together sentces . So the 2 years of excersize got me stronger to the point I could swim for a few hours and eat two small meals a day . Gained 5 lbs and forced my self to keep moving forward , every few day I would fall back into a rut but eventually make it out and keep going . My next step in happiness and Heath was to find a healthy activity that would also be a hobby to start living life for something other than just being sick . I love to swim and live near the ocean so surfing for me was just the next step , the ocean not surfing was my final step to being comfortable still sick but able to cope I used the power of the ocean to find happiness and a space where I can leave the sickness at the beach when I enter the water I am free . I wake up everyday sick at 5am suit up and get in the frigid ocean . I hope that who ever is reading this can take something from it t improve your life . Gp is very hard to deal with I know many people don’t support pot struggle to understand I urge u to try it out and be open minded , I want to reach out to the gp community and share how I can feel a little better if your against medical marijuana . Then give the ocean a shot for some happiness you just can’t find while sick on land . Or lastly at least start small work outs to I know you feel completely empty of energy if you ever want to move forward . You may never be “normal”again but you can atleast make your own normal not that bad . Love u guys and I send my positive thoughts to you all everyday . If anyone wants to contact me with any questions here is my email osahousetofino@gmail.com

  • Kim says...

    Wow! Came upon your site looking for info on j/g tubes (just got a new one and i really dont like it!!)

    Im a 50 (oh dear) year old womwn and havehad gastroparesis and pancreatitis pretty much my whole life but wasn’t diagnosed until about 13 years ago. Have been through iv feeds, j tubes and j/g tubes for about 10+years.

    I understand your life and daily job of keeping fed. The biggest change in my life is when people stopped inviting me out saying, “well, you dont eat or drink….” Arghh! And then there people who look at me and say, “you dont look sick!” –i love to show these folks my multiscarred stomach!!

    I have a wonderful life saving team at johns hopkins hospital, headed by dr. Kalloo (known as a gastro god) its a great place and great group of specialists.

    As a part of the tube feed community inwanted to thank younfor taking the time to put together this site and keep it going…i cant imagine how much time you put into it!

    Carry on the the good work and best of luck living the lige you want.

  • Morgan Buckner says...

    Is it normal to get gp from an inflamed gallbladder? Or gastritis? This all started happening in March. After I ate a breakfast pizza. Not sure if it was food poisoning. I’m always nauseas and it takes 9 hours after eating to get hungry again. I’m on domperidone 10mg 3x daily. I haven’t noticed much. Do I need really small meals like snacks throughout the day? Is ice cream okay? I ate like two cups of ice cream and it took 8 hours to digest. Did I eat a little too much? Should a higher dose do the trick? How long should I be like this? I need to be normal by this summer. I’m going on two trips. I can’t handle this nausea if I’m on a boat or in a car and surrounded by people who don’t understand and make me eat until I’m sick. Should I get a pacemaker? I’m almost 10 pounds underweight. I look too skinny. I’m only 104 and 5’7. I’m slowly losing hope.

  • aidan c says...

    I was reading most of these post and I was recently diagnosed with GP.I have never been so frustrated in all my life with these same symptoms.I have been unable to eat solid food now for 3wks and have lost 10lbs.Tired of soups and feeling weak and tired and no energy, all I can do is lay down. Have no desire to eat at all,Hopefully this doctor at Sinai can help me.

  • Temple says...

    I was recently told I have GP. I have had these same symptoms for 5 years. Had my gallbladder removed, had HPylori twice and now find out this. I am scared and frustrated. I am on Zofran and pain meds. I think the hardest thing for me is getting people to just understand. everyone says try this and try that without listening to me. My husband wants to try and fix me and I don’t think he is ready to except that this is not just going to go away. The Zofran really does not work and the pain meds make it hard to function. I have three children who depend on me. I follow up with my GI AT the end of the month and I am going t o ask about the pace maker. I just want some relief and energy. Thank you for this site and allowing me to vent.

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