G-PACT is pleased to present six free, interactive webinars during DTP Awareness week focusing on various topics of interest. Registration information is included below.
Monday:
Understanding Chronic Intestinal Pseudo-Obstruction
Date: Monday, August 23, 2010
Time: 1:00 PM - 2:00 PM EDT
Presenter: Mike Smith, Vice President, Esq. of G-PACT, CIP Patient
Space is limited.
Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/192897504
Tuesday:
Getting to know about feeding tubes
Date: Tuesday, August 24, 2010
Time: 4:00 PM - 4:30 PM EDT
Presenter: Rick Davis, President of the Board of Trustees, Oley Foundation, HEN Patient
Space is limited.
Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/307658616
Enterra© Therapy- What can gastric electrical stimulation do for you?
Date: Tuesday, August 24, 2010
Time: 7:00 PM - 8:00 PM EDT
Presenters: Carol Pasinkoff, G-PACT PAL Volunteer and Shipping Manager, Enterra Therapy Patient
Cindy Tessmer, Enterra Therapy Patient
Please submit questions in advance to: pasinkoffc@g-pact.org
Space is limited.
Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/143304488
Wednesday:
Eating for Gastroparesis
Date: Wednesday, August 25, 2010
Time: 7:00 PM - 8:00 PM EDT
Presenters: Crystal Saltrelli, CHC, DTP Patient
Angie Moeding, RD, DTP Patient
Please submit diet related questions in advance to: crystal@livingwithgastroparesis.com
Space is limited.
Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/668419185
Thursday:
All about Gastroparesis
Date: Thursday, August 26, 2010
Time: 7:00 PM - 8:00 PM EDT
Presenters: Aliza Chana Zaleon, Support Programs Manager of G-PACT, DTP Patient
Lauren Ocasio, DTP Patient
Please submit questions in advance to: zaleona@g-pact.org
Space is limited.
Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/773414200
Another webinar on HPN (IV Nutrition) will be added this week.
Don't forget to submit profile pics and awareness videos! The "Movieng Forward im-PACT" video competition deadline has been changed to Saturday, August 21 at 10 PM EDT to allow more time for entries!
Questions and contest entries? Send to publicrelations@g-pact.org!
Thursday, August 19, 2010
Thursday, August 12, 2010
DTP Awareness Week on Facebook!
G-PACT is sponsoring a DTP (Digestive Tract Paralysis) Week August 22-29, 2010 in celebration of our nine year anniversary on August 23. We are providing a number of contests, webinars, and other creative, fun activities all week to help increase awareness of gastroparesis and intestinal pseudo-obstruction. If you are on facebook, please join our page at www.facebook.com/G-PACT to get involved and find out what we are doing to spread the word!
Contests:
The "Movieng" im-PACT Contest
Have a cool story to share about life with DTP? Just want to tell others what it's like? Want to help us increase awareness in a fun way? G-PACT would love to have videos of patients describing their experiences with DTP for our YouTube Channel and website. Be serious, honest, funny, and creative! Share a funny story, show what it's like to live on TPN or a feeding tube, create a jig or song, or talk about how it impacts your life. Just be creative and think...AWARENESS!
To Enter:
Create a video, no longer than 5 minutes in length, describing your life with gastroparesis, chronic intestinal pseudo-obstruction, or both. Feel free to be honest, funny, or serious. Focus on one particular area (life on a feeding tube or TPN, how it impacts your social life, how it impacts your family, if you are a caregiver- how it has changed your life), or just show/describe what it's like to live with it in general. Just say what you feel like you want to say to increase awareness!
Feel free to express yourself in the manner you enjoy the most or feel the most comfortable! You can just talk about the impact it has had on you, or branch out and sing a song, write a poem, dress in funky lime green and yellow gear, and get friends to dance with you. Just have fun doing it! Think about how your video can reach out to all kinds of people. We would love to have a variety of video types by a number of patients!
Once completed, upload your video to YouTube and send the link to publicrelations@g-pact.org by Friday, August 20.
During DTP Awareness Week, we will post all videos on our own YouTube Channel for fans to vote on and choose their favorites! The top videos will be used on our website in the future and on our YouTube channel!
Faces of DTP Contest:
Decorate the world of Facebook in lime green and yellow! Help increase awareness by creating profile pictures to spread across the Facebook community!
To Enter:
Design a very creative, humorous, or unique profile pic to use during DTP Awareness Week! Think about how you can capture life with DTP in a picture, ways to grab people's attention to learn more about DTP, or just stand out among the many images that they see every day! Be sure to include some text on your picture that uses the terms gastroparesis, pseudo-obstruction, or G-PACT in order to point people in the right direction to learn more.
Submit your completed profile pic to publicrelations@g-pact.org by Sunday, August 22. Display your image on your profile throughout the week. Images will be reviewed by a few judges and the best one will receive either a free "Gastroparesis Gourmet" cookbook or $15 off an item in one of G-PACT's stores (decision by winner). Winner will be announced at the end of the week!
Things to consider for both competitions include:
Professional videos will not be accepted. This is a fun, patient, friends and family activity!
Videos and photos should be clean and not include foul language, vile nudity (showing g-tubes, j-tubes, stimulators, scars, etc. is acceptable). Discriminatory comments or other potentially offensive content is unacceptable. G-PACT will view all videos in advance and if they do not fit within our guidelines of integrity, our core mission, and certain legalities we reserve the right to exclude them from the competition.
Please do not endorse a product or treatment option. Videos should be based on personal experience and not be perceived to be factual or providing medical advice.
Official G-PACT volunteers (defined as those who have been through the full application process) are encouraged to create videos and profile pictures, but are not eligible for the competition. Videos will still appear on our channel that week to increase awareness.
Most importantly, have fun and express yourself passionately, creatively, or humorously through either, or both, mediums!
Questions on either competition? Please contact us at publicrelations@g-pact.org!
Contests:
The "Movieng" im-PACT Contest
Have a cool story to share about life with DTP? Just want to tell others what it's like? Want to help us increase awareness in a fun way? G-PACT would love to have videos of patients describing their experiences with DTP for our YouTube Channel and website. Be serious, honest, funny, and creative! Share a funny story, show what it's like to live on TPN or a feeding tube, create a jig or song, or talk about how it impacts your life. Just be creative and think...AWARENESS!
To Enter:
Create a video, no longer than 5 minutes in length, describing your life with gastroparesis, chronic intestinal pseudo-obstruction, or both. Feel free to be honest, funny, or serious. Focus on one particular area (life on a feeding tube or TPN, how it impacts your social life, how it impacts your family, if you are a caregiver- how it has changed your life), or just show/describe what it's like to live with it in general. Just say what you feel like you want to say to increase awareness!
Feel free to express yourself in the manner you enjoy the most or feel the most comfortable! You can just talk about the impact it has had on you, or branch out and sing a song, write a poem, dress in funky lime green and yellow gear, and get friends to dance with you. Just have fun doing it! Think about how your video can reach out to all kinds of people. We would love to have a variety of video types by a number of patients!
Once completed, upload your video to YouTube and send the link to publicrelations@g-pact.org by Friday, August 20.
During DTP Awareness Week, we will post all videos on our own YouTube Channel for fans to vote on and choose their favorites! The top videos will be used on our website in the future and on our YouTube channel!
Faces of DTP Contest:
Decorate the world of Facebook in lime green and yellow! Help increase awareness by creating profile pictures to spread across the Facebook community!
To Enter:
Design a very creative, humorous, or unique profile pic to use during DTP Awareness Week! Think about how you can capture life with DTP in a picture, ways to grab people's attention to learn more about DTP, or just stand out among the many images that they see every day! Be sure to include some text on your picture that uses the terms gastroparesis, pseudo-obstruction, or G-PACT in order to point people in the right direction to learn more.
Submit your completed profile pic to publicrelations@g-pact.org by Sunday, August 22. Display your image on your profile throughout the week. Images will be reviewed by a few judges and the best one will receive either a free "Gastroparesis Gourmet" cookbook or $15 off an item in one of G-PACT's stores (decision by winner). Winner will be announced at the end of the week!
Things to consider for both competitions include:
Professional videos will not be accepted. This is a fun, patient, friends and family activity!
Videos and photos should be clean and not include foul language, vile nudity (showing g-tubes, j-tubes, stimulators, scars, etc. is acceptable). Discriminatory comments or other potentially offensive content is unacceptable. G-PACT will view all videos in advance and if they do not fit within our guidelines of integrity, our core mission, and certain legalities we reserve the right to exclude them from the competition.
Please do not endorse a product or treatment option. Videos should be based on personal experience and not be perceived to be factual or providing medical advice.
Official G-PACT volunteers (defined as those who have been through the full application process) are encouraged to create videos and profile pictures, but are not eligible for the competition. Videos will still appear on our channel that week to increase awareness.
Most importantly, have fun and express yourself passionately, creatively, or humorously through either, or both, mediums!
Questions on either competition? Please contact us at publicrelations@g-pact.org!
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 www.g-pact.org/awarenessba
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 http://www.cbsnews.com/sto
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 contact@g-pact.org. Please be sure to visit us at www.g-pact.org for more detailed information. Our website is being enhanced and much more information will be added over the next several months.
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 www.g-pact.org/awarenessba
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 http://www.cbsnews.com/sto
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 contact@g-pact.org. Please be sure to visit us at www.g-pact.org for more detailed information. Our website is being enhanced and much more information will be added over the next several months.
Wednesday, May 26, 2010
First alone flight with GP/CIP and since College
I just returned from Washington, D.C. for the first time on my own since I was a student at University of Maryland. Since I'm no longer able to drive because of my visual impairments, I had to fly, which I hate doing under normal circumstances let alone with all of my medical needs. So, I was super-prepared for the travel. I downloaded the Travel Packet from the Oley Foundation (http://www.oley.org/) website, which was awesome and amazing, and had me totally and completely prepared. Between that, and what I got from the FAA site and Kris from Carolina mobility to prepare for the Oxygen and my wheelchair, I sailed through check-in and security with absolutely no problems! They even told me that they had to turn someone away earlier that day because they didn't have the proper documentation, but were very impressed with my documentation. So, they gave mom a gate pass to wait with me until I got on the plane. So, we went up to the gate, plugged in the Portable Oxygen Concentrator (POC), and waited. We spoke to the gate attendants and they knew that I was there and in my power wheelchair, a Quantum 600, which is a big, heavy power wheelchair. As we were ready to board the plane, they informed me that my wheelchair was too big to fit on the plane to DC. I would have to be re-routed to a different flight that would take me from RDU to Charlotte, and then from Charlotte to DC. The flight that I was on was supposed to stop in Charlotte, but then go straight on to DC. Well, that didn't happen. The flight changed and it was going to go to Atlanta, and my flight was in a different terminal, and the flight got to Charlotte 15 minutes late. By the time that they got my wheelchair up off of the plane, they were finished boarding the plane. They were talking to the gate attendants and the flight attendant asked if she had to hold the plane. The pilot said that he would, but the flight attendant didn't want to be late, and so they didn't hold the plane, and told me that they would get me on the next flight out. As it was, I wasn't going to get in until 7:30, so I wasn't happy. I was in tears by the time that they got me over to the special services desk, and Mom and Dad were ready to just drive to Charlotte to get me. Luckily, I was working with a very nice man who was not much older than me, and he didn't want my whole trip to be ruined. Unfortunately, also, between RDU and Charlotte, my feeding tube bag exploded in the airplane. So, I was just a mess. The next flight wouldn't get me in until 9:30 and by the time that I got off the plane, I wasn't going to attempt to take the metro. The special services representative found a handicap accessible cab company in Maryland that would pick me up at the airport in DC and take me to the hotel in Silver Spring. He gave me a voucher for the cab since it was their fault, and I got on the next flight. Carol met me at the airport, and we got to the hotel and checked into our room at 10:30 or closer to 11. At that point, I went to plug in my oxygen concentrator, and I had no bag with the Oxygen concentrator charger and cords. So, I called the airline, because they gate checked and stowed my bags for me, and were supposed to help get everything back for me, and gave me absolutely no help. Fortunately, they found the bag and delivered it to the hotel. Unfortunately, I had to sleep without oxygen for a night. I also had blood from my feeding tube, stoma, and stools, and in the morning, I developed a nose bleed and fever. So, I ended up missing my meetings, and my dad came to pick me up. I will get a DVD of all of the meetings, and will still be able to submit written comments. It was a frustrating trip, but a huge step for me because it was the first time that I travelled all by myself since I was a student at Maryland, and I took care of all of the problems myself. I also managed to get a refund for the return flight which I was unable to use because we drove home. :) All in all, it was a good experience, even though I had some major problems. I'm resting now, and improving I think. Sometimes, I think that stress doesn't do good things to me, especially with my tummy problems!
<3,
Aliza
<3,
Aliza
Thursday, April 22, 2010
Attack of the spaghetti sauce!
So, have you ever been too tired to walk around the store and shop and borrowed one of those store electric scooters/shopping carts? The things were horribly made for the store. They are too wide for the aisles, and impossible to steer very clearly. They beep loudly announcing to the entire customer population that you are in reverse. They can never go the right speed...either too fast or too slow. Then, when you find the item you need, you can't pull up close enough to reach it without having to get up each time and get it.
I don't consider myself to be a bad driver, but I certainly don't do well with these electric carts! I frequently bump into things, knock things over, run into people, and get myself stuck in the most random places and have to maneuver my way out of unusual situations.
My most memorable experience took place not long after my transplant. I was still pretty high on steroids and confused. My coordination wasn't quite right, and I wasn't very well focused. I was at Giant (our local grocery store) and managing ok, so I thought, driving the nice red shopping cart. Everything seemed to be going smoothly. Suddenly I rounded the corner and the next thing I knew I heard crashing and was covered in spaghetti sauce and glass jars were laying all over the floor. Customers around me came running to make sure I wasn't injured and help clean me off as much as they could. I was quite traumatized!
Once I was cleaned up and everyone was sure I hadn't been harmed in any way during the spaghetti jar attack, I sheepishly went on my way, heard the call for help cleaning up aisle 7, and completed my shopping incident free, although I smelled a bit saucy.
Needless to say, I have not since seen a display of breakable items sitting on the corners of aisles in that store anymore...nice to have contributed to new policies for a major store chain!
I don't consider myself to be a bad driver, but I certainly don't do well with these electric carts! I frequently bump into things, knock things over, run into people, and get myself stuck in the most random places and have to maneuver my way out of unusual situations.
My most memorable experience took place not long after my transplant. I was still pretty high on steroids and confused. My coordination wasn't quite right, and I wasn't very well focused. I was at Giant (our local grocery store) and managing ok, so I thought, driving the nice red shopping cart. Everything seemed to be going smoothly. Suddenly I rounded the corner and the next thing I knew I heard crashing and was covered in spaghetti sauce and glass jars were laying all over the floor. Customers around me came running to make sure I wasn't injured and help clean me off as much as they could. I was quite traumatized!
Once I was cleaned up and everyone was sure I hadn't been harmed in any way during the spaghetti jar attack, I sheepishly went on my way, heard the call for help cleaning up aisle 7, and completed my shopping incident free, although I smelled a bit saucy.
Needless to say, I have not since seen a display of breakable items sitting on the corners of aisles in that store anymore...nice to have contributed to new policies for a major store chain!
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.
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.
Welcome to The Belly Press!
The Belly Press is a G-PACT blog where people with gastroparesis and intestinal pseudo-obstruction can blog about their experiences and exchange information. It's important for us to be able to share our experiences and write about what we deal with on a daily basis. Hopefully, this blog will increase awareness of digestive tract paralysis (DTP). Anyone is invited to follow our blog. This is a casual place where we will hang out and laugh, vent, share personal stories, and learn from each other! Some posts may have nothing to do with our conditions, but rather about just life in general, while other times we will be more serious and work on coping together. It is our intent to create a relaxed environment here where our followers can learn more about life with DTP. Imagine that you are sitting around on a bunch of comfy couches with a group of people with DTP just talking about life...what would you talk about?
Subscribe to:
Posts (Atom)