Monday, July 26, 2010

G-PACT Facts Challenge!

In April and May, G-PACT held an event over a few weeks in which we posted a fact about GP or CIP every day in order to increase awareness and educate people on various aspects of the conditions. We had planned to create a poll or quiz for people to take in order to figure out what they have learned. Unfortunately, during that time we got hit with an issue regarding Medicare coverage for GP and this event was put aside in order to address that.

G-PACT is finally happy to bring a summary of our facts to you now! We hope these will be helpful. Please review them. We will post the poll in the next couple of weeks and, as promised, the first 5 people who score the highest will receive a free G-PACT awareness band! You can check them out at
nds.html. Stay tuned for a link to the poll and the chance to win an awareness band!

1. GP stands for gastroparesis and means "stomach paralysis." CIP stands for chronic intestinal pseudo-obstruction and means small bowel paralysis. DTP stands for digestive tract paralysis and for G-PACT purposes refers to both unless we specify otherwise.

2. DTP affects approximately 5 million Americans, yet how many of you would have ever heard of these conditions if you did not have one or both yourself, or know of someone with them?

Symptoms of DTP (Digestive Tract Paralysis) include early satiety after only a few bites of food, nausea, vomiting (often undigested food eaten hours or days earlier), bloating, distention, abdominal pain, reflux, malnutrition, dehydration, constipation, loss of appetite, esophageal spasms (may feel like a heart attack), poor blood glucose control in diabetics, hiccuping, excessive belching, fatigue, back pain, and weight loss.

More common with CIP, less with isolated GP, symptoms also include partial or full small bowel obstructions, vitamin and mineral deficiencies, malabsorption, lack of bowel sounds, and inability to pass gas. Poor growth and development in children is often noted.

In some instances, patients may actually gain weight with DTP in spite of a low caloric intake. It is not uncommon for the esophagus and/or bladder to be affected as well.

3. Botox, the injection known more commonly for the treatment of wrinkles, is also used to treat gastroparesis! Through an endoscopy (scope placed through the mouth and into the stomach under sedation), a gastroenterologist can inject Botox into the pyloric sphincter. The pyloric sphincter is a valve at the bottom of the stomach which helps regulate the amount of food emptied into the small bowel at one time. The purpose of this injection is to relax the pyloric sphincter and help it to empty food more easily into the small bowel.

4. Although it is the LAST thing you want to do, one of the best things to aid in the recovery, or at least lessen the odds of deterioration in DTP, is to eat! The stomach is a muscle. Just like any muscle, when it is not used it atrophies. The more it atrophies and the weaker it gets, the harder it becomes for it to work at digesting food. Since you can't walk the stomach, swallow the Wii remote for it to play, or throw it on a bicycle, it's best to "bite the bullet" (so to speak) and attempt small portions of food throughout the day to keep it active! Exercise your gut so it doesn't get in a lazy rut!

5. One of the biggest challenges people with DTP face is discrimination due to the fact that it is an invisible illness. Symptoms may change from day to day, or even hour to hour. Often people with DTP are not believed to really be sick and receive comments like "But you don't look sick!" People with DTP are often up all night vomiting or in pain, but still have lives to maintain in order to be as healthy as possible. Life goes on around them whether they are feeling well or not.

It is important for loved ones to understand that just because people with DTP don't look sick doesn't mean they aren't! The understanding and support of loved ones whether clearly ill or looking well will mean the world to someone who is fighting this on a daily basis!

6. Most people with DTP are able to eat through a balance of diet changes and medication. However, there are two ways for people with DTP who cannot sustain nutrition orally to receive it in artificial form: enteral and parenteral.

Enteral nutrition is more common in GP than CIP. Enteral feedings go di...rectly into either the stomach or small bowel via a feeding tube. (G= stomach, J= small bowel). The tube may be an NG or NJ tube (through nose into stomach or small bowel), G-tube (which can also be used for draining the stomach), J-tube, or G/J tube (combination of both for draining stomach and feeding into small bowel). G and J-tubes are implanted surgically or endoscopically. J-tubes are more common than g-tubes for feedings in GP in order to completely bypass the stomach.

Parenteral nutrition is more common in CIP due to the fact that the small bowel cannot tolerate j-tube feedings. Parenteral nutrition (TPN= Total Parenteral Nutrition) is feeding through a long-term IV line (known as a central line) which enters a vein near the heart. There are many types of central lines. They are usually placed in the arm, chest, or neck. Parenteral nutrition is more dangerous than tube feedings due to the risk of sepsis (blood infection), blood clots, and the fact that over time TPN can cause liver damage. With TPN, it is crucial that sterility be maintained.

While not ideal, these alternatives are life-saving for many patients who are fighting some form of DTP!

7. Typically, it is recommended that patients with DTP avoid much fat, fiber, spice, red meat, and raw fruits and veggies. However, even within the guidelines of the DTP diet, everyone is different and there are no guarantees that what one DTPer can eat will be tolerated by another one. In fact, there are no guarantees that what goes down well for one DTPer one day will work again for that same person the next!

Symptoms may vary from day to day with no rhyme or reason. This variation makes DTP even more complicated to manage because there is not necessarily a baseline standard within even one given patient! Sometimes making a food diary can identify certain triggers, but in most cases triggers cannot be clearly identified because symptoms are so erratic and unpredictable. The only predictable factor about how the gut will respond to eating on the DTP diet is that it is unpredictable!

8. Approximately 2/3 of all people with idiopathic (of unknown origin) gastroparesis are female. Most of those are young women in their teens or 20's. This suggests that in many cases there may be a hormonal link making females more susceptible to developing the condition.

9. One of the best solutions to treating DTP symptoms is to get up and move! Although it may be the LAST thing you feel like doing, a little body motion helps with gut motion too! The improvement of those also leads to better e-motions. Your overall health can change by simply taking a walk by the sea or playing a game on the Wii!

10. Type 1 and type 2 diabetes are the most common known causes of gastroparesis. GP makes diabetes even more complicated to treat. Once the food finally does empty into the small bowel and is absorbed, blood glucose levels rise. Because digestion is so slow, this makes blood glucose levels erratic and hard to control.

11. When medication and diet have failed in treating gastroparesis, a gastric electrical stimulator, known as Enterra Therapy, can be surgically implanted. Manufactured by Medtronic, this d...evice is used to help stimulate the smooth muscles of the stomach and may improve nausea and vomiting in patients with refractory GP. Settings of the device are based on patient symptoms and can be controlled by an external remote from the physicians office.

12. SmartPill is a wireless, ingestible capsule that measures pressure, pH and temperature data from your GI tract and wirelessly transmits that information to a data receiver worn on a belt or lanyard. This data is then downloaded to a computer, allowing your physician to analyze the information. SmartPill provides physicians with data for Gastric Emptying Time, Combined Small/Large Bowel Transit Time and Whole Gut Transit Time.

SmartPill is more comfortable and less invasive than many traditional GI procedures. The SmartPill procedure requires only a short 15-30 minute office visit after which you can return to your daily
activities. With SmartPill, there is no exposure to radiation and no hospital visit required as with traditional test methods. No eggs that make you glow in the dark or radiation drinks meant for aliens!

13. In spite of the fact that approximately 5 million Americans suffer from a DTP, treatment options are limited and medications that have worked in the past have been pulled from the market very quickly.

Zelnorm, an effective drug for DTP, was pulled from the market in 2005. Over 900,000 people benefited from its use. Approximately 0.1% of those showed some signs of cardiac arrhythmias as
compared to Ritalin in which 3% of people react in this way. Of that 0.1%, most had other health issues that could have contributed.

Domperidone, another motility medication, was studied in the US for years and never approved despite the fact that there were NO deaths associated with it. It is still the preferred drug by most GI motility doctors in the U.S. to treat GP, but can only be obtained from other countries.

G-PACT is now working closely with the FDA and drug companies on drug studies to help move the approval process through more quickly, and to help them develop new studies based on patient needs.

14. Tranzyme Pharm's new motility medication, TZP-101 (I.V. form) and TZP-102 (oral form), now known as Ulimorelin, is in the next stage of development. Tranzyme is seeking government funding to continue research into Ulimorelin with the help of G-PACT to fast track it. Thus far, it has shown promise in the treatment of diabetic gastroparesis.

In comparison to placebo's, Ulimorelin has shown significant improvement in gastric emptying rates and classic symptoms such as nausea, vomiting, and loss of appetite. Although currently only tested for diabetic gastroparesis, it will be available for all types of GP, if approved, and has the potential to treat CIP as well.

15. Pain is one of the most common and debilitating symptoms patients with DTP (Digestive Tract Paralysis) experience. Unfortunately, it is also very difficult to treat. Pain medications can cause temporary DTP in otherwise healthy people by slowing down GI motility, so therefore they are contraindicate...d in people with DTP. Muscle relaxers may also help reduce pain levels, but have the same effect by relaxing the GI tract too much so it does not contract as well. Pain may be esophageal, abdominal and even radiate into the back and neck. If pain medication is required, it should be kept to a minimum and milder narcotics should be used whenever possible. Non-narcotic medications such as Ultram are sometimes effective and do not have the paralytic effect.

Often patients try to treat DTP pain through alternative means including heating pads placed on the stomach, massaging the back or abdomen, and moving around as much as possible to aid in digestion.

As with most treatment options for DTP symptoms, treating pain is a vicious cycle because the side effects worsen the actual condition. Sometimes by treating the pain you actually have nothing to gain!

16. Chronic Intestinal Pseudo-Obstruction is generally classified as being either neurogenic (related to the nerves) or myogegenic (from the muscles) in nature. Although the signs and symptoms may be the same, neurogenic CIP is characterized by uncoordinated contractions of the intestinal tract, while myogenic CIP typically presents with weakness or total absence of contractions.

17. Research into treating DTP is not just centered around medication and gastric stimulation. Some centers are studying the possibility of using the healthy cells of one's own organs, regrowing the organ, and transplanting a new one into the individual.

Dr. Ken Koch, a leading gastric motility physician formerly of Hershey Medical Center, is working closely with the leading regenerative medicine doctor at Wake Forest University, Dr. Anthony Atala, on how to
build gastro-intestinal organs from the cellular level up. Cells are taken from the needed organ, placed into an ink cartridge, and printed out layer by layer into the pattern of that organ. The cells contain all
of the biological information needed to regrow into the correct organ and function as it should. Success has already been seen with bladders, kidneys, and other organs and tissues in animals.

This type of transplant would cut wait time down to only weeks, would not require the death of a donor, and would not be rejected by the recipient since they would already be an exact match.

Further information is available at

18. In summary, DTP stands for digestive tract paralysis and, for G-PACT purposes, includes gastroparesis (GP) and chronic intestinal pseudo-obstruction (CIP). GP is paralysis of the stomach and CIP is paralysis of the small bowel. Symptoms are vast and vary, but the most common include nausea, vomiting (often undigested food eaten hours or days earlier), abdominal pain, weight loss, malnutrition, dehydration, constipation, and bloating. In CIP, there is also the additional complication of "pseudo" obstructions, an obstruction or blockage of the small bowel in the absence of a mechanical obstruction (i.e. not an actual perforated small bowel, thus the term "pseudo" or false). This often requires surgery to remove the portion of the small bowel which is blocked.

While most people only have one, it is not uncommon for patients to suffer from both. Treatment options are essentially the same, with a few exceptions. Unfortunately, most motility doctors and current research focus more on GP than CIP, even though CIP has a much higher fatality rate.

Both conditions are distressing for patients whether mild or severe. They are poorly understood and considered to be invisible illnesses, meaning patients may look perfectly healthy, but actually be very sick. Comments such as "but you don't look sick" are common and many patients are considered to be exaggerating or making up symptoms based soley on looks. If a loved one of someone suffering, please be sensitive to this as it only adds to the stress of dealing with the di-stress of the symptoms of DTP!

Thank you for your interest in G-PACT! By reading this, you are acknowledging you truly do care and want to learn more! We are open to your feedback on how much you have learned. Please contact us via the fan page wall, private message, or e-mail Please be sure to visit us at for more detailed information. Our website is being enhanced and much more information will be added over the next several months.