Group photo
Author:
1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
8/22/11 11:05 P

Send Private Message
Reply
This is really long, but I wanted to share what I sent to my friend who is a reporter here in MN. She asked me to email her some information so she can pitch it to her editor. I probably gave her too much, but I have no idea what she wants, so I tried to touch on a lot of things. I really hope they do this story and help get the word out.



I have no idea what information you need, and I could probably provide you enough that it would take a half hour to an hour just to say it all, so I'm going to give you a variety of things to look at, so you can choose how you want to approach it.

Start off with a few videos on youtube that have been created by patients http://www.youtube.com/user/GPACT so you can see how dibilitating these conditions can be.

G-PACT is the non-profit that is helping patients with DTP (digestive tract paralysis), GP (gastroparesis - paralyzed stomach), and CIP (chronic intestinal pseudo-obstruction - paralyzed intestines). Their website is: www.g-pact.org and their facebook is: www.facebook.com/GPACT Their facebook has a TON of information, links, etc - more that their website does.

You can get technical: http://www.medscape.org/viewarticle/746363 Unfortunately, many doctors either don't know about DTP or don't understand it and many refuse to acknowledge it. There are few motility clinics that are actually researching the condition (Mayo in Rochester has been studying motility for about 50 years) and those doctors know the most - but there is still no cure. Most treatments only mask the symptoms and some of the treatments can actually cause more problems than they help - including death. Anyone who can still maintain a weight above underweight while eating 'normal' foods on a low fat/low fiber, soft food (pureed/baby food), or completely liquid diet usually are not put on the agressive treatments until they can't maintain their weight any longer. Then it is on to enteral nutrition (g-tube, j-tube, g/j-tube), TPN (total parenteral nutrition - IV nutrition), complete removal of organs (like the stomach and parts of the intestines), 3-5 simultaneous organ transplants, or attempting the new gastric pacemaker (which can make it much worse if they cause further damage during surgery) and/or attempting to get into the initial trials for a pacemaker for the intestines. There is also a webinar tomorrow about the digestive tract that will probably include information specific to DTP: http://https//www.facebook.com/GPACT#!/eve
nt.php?eid=224896697554576

Of course, the most important thing to point out is that DTP can be caused by numerous things, or nothing at all, but is due to something causing vagus nerve damage - the nerve that supplies information from the brain to the internal organs. It can hit anyone at any time in any place. Once you have DTP there is no cure so you have to learn to accept and live with it. Absolutely no one is safe from the condition. There are 2 day old babies who are diagnosed all the way through elderly patients. People of every race, socio-economic level, and fitness level can be hit. It can be caused by anything from a virus or bacterial infection to a blow to the head or neck to numerous medical conditons to a gastric-bypass to chemotherapy to no reason at all - you can be born with it or suddenly find yourself completely unable to keep any food in your body for any length of time. Since many doctors have no clue about DTP, let alone how to diagnose it, people often go weeks, months, years, even decades before they find the one doctor who stops ignoring their complaints and gives them the Gastric Emptying Scan. DTP also tends to cause many other problems - from GERD (acid reflux) to sepsis to migranes to malnutrition and severe weight loss... When the body can't get proper nutrition, it tends to 'implode'.

I've seen an estimate that 8 million people are affected by some degree of DTP - that's 1 in 25 people. But rarely does anyone know about it until it directly affects them or a loved one. There are no commericals, no pamphlets in doctor's offices, and no big charity drives to raise money for research. Congress has been contacted many times and are reluctant to or downright against funding research. Many people are diagnosed and think they're completely alone. Which is why getting the word out and raising awareness needs to be done - to save lives. It is known that vagus nerve damage causes gastroparesis, but my last primary care doctor said any damage to the vagus nerve means instant death. Thus, according to her, millions of people are alive against medical knowlege - more like she is one of the many doctors who do not understand the condition whatsoever and blame the patients for the condition. Like a "doctor" who blogs on the Dr Oz website and chose to spread blatant lies about gastroparesis: http://www.doctoroz.com/blog/lazy-stomach - all because it is against her foundation of 'eating healthy and exercising cures everything'. Looking in the comments you'll see that us patients asked for an apology, which we never received.

I could be considered one of the lucky ones - many days I can eat a semi-normal diet, though mostly devoid of fruits, veggies, whole grains, fried foods, many cheeses and nuts, and more foods than I want to think about. I have to plan for every meal to be a 'feeling good' or 'feeling bad' meal and decide when I'm ready to eat if I can handle some fat and fiber, have to have no fat or fiber, or if I have to stick to liquids. Considering I eat 6-10x/day that's a lot of uncertainty! When I get seriously stressed or can't get enough sleep, I'm down to mostly liquids and I can lose as much as 1lb a day until I use the strategies I've developed over the last year to release the pressure on my vagus nerve and get the signals flowing to my stomach and intestines again - but of the people I know of with the condition, my on-again-off-again version is very much not the norm. But I gotta tell you, pretty much being unable to eat for a month last year (less than 400 cals in 2-3 days, 1 cup of water in 1-2 days) and being denied a stay in the hospital to prevent my 15 lb weight loss (10% of my body weight), inability to work/drive/read/think, and to give me nutrients that I desperately needed was the worst part of it all. The GI specialists didn't even know what was going on and somehow didn't think that me being unable to eat was important. Between the end of July when a condition I've probably had my whole life suddenly turned severe and the beginning of October (when I took the initiative to learn the diet and figure out my condition for myself) I dropped from 145 lbs to as low as 123 lbs (118 is the threshold for underweight at my height) and eventually settled around 130 lbs that I now daily fight to stay at.

Yes, this is a LOT of information. I've been researching anything that goes along with my conditions since the first diagnoses came in last September, and there is a TON of information out there, but only when people know what they're looking for and/or can find the groups online where others with GP/CIP/TPN can share information. My doctors barely knew anything, my nutritionists could only give generalized information that didn't work for me, and I now fully believe I know more about my condition than any of them.

So I should probably stop here because you're probably totally overwhelmed with all this. If you have questions or need help getting more information, let me know and I can try to steer you in a direction.

Sheri

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
8/21/11 3:07 P

Send Private Message
Reply
This isn't about raising money, but about raising awareness. It isn't about telling everyone everything, but about letting a few people know the condition exists and giving them basic information. They can ask if they want to know more and/or check out G-PACT.

I've found ways to work it into conversation with random people in the grocery store, drug store, gas station, family dollar store, etc. You can post about it here on SP, on facebook, you can write on post-it notes to leave in random places, you can print out a bookmark to put in a book you're willing to give away and leave it somewhere that someone will come across it. Anything you're willing to do to share information will help. I have a friend who is a reporter for a news radio station here in the Twin Cities, MN. I'm thinking about asking if she can do a story about DTP Awareness Week. Any little thing you do will help all of us.

Remember, if every person who has DTP (including gastroparesis and/or chronic intestinal pseudo-obstruction) and every person who cares about someone who has DTP tells just ONE person each, that is millions more people who will be informed.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
SOSMEGOD's Photo SOSMEGOD SparkPoints: (0)
Fitness Minutes: (2,685)
Posts: 1,697
8/20/11 9:29 P

My SparkPage
Send Private Message
Reply
I'll have to think about how I can spread the word. I don't know that many people. I'll get back to you after I ck out the site for help and idea's

The Best You Can Be At Any
Given Moment Is Yourself
-Elizabeth Alraune sosmegod


 current weight: 42.8  over
45
22.5
0
-22.5
-45
1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
8/19/11 10:11 P

Send Private Message
Reply
Today starts DTP Awareness Week. For anyone who doesn't know, DTP stands for digestive tract paralysis and includes gastroparesis and CIP (chronic intestinal pseudo-obstruction). G-PACT declared the week to encourage anyone who is affected by DTP and/or knows someone who is affected to speak out and tell people about it.

Events for the week and suggestions for how to spread the word can be found on G-PACT's facebook page.

www.facebook.com/GPACT

This is as good of a time as any to consider how GP/DTP has affected your life and how you can explain it to others in a simple (but profound) way. Then speak up and talk about GP to your family, your friends, or random people you meet. Informing just one person could save a life if they or a family member suddenly lose the ability to eat and are diagnosed.

Share with the rest of us how you will 'celebrate' DTP Awareness Week in this thread. To learn about the idea I'm working on, see my 'Tubie Duckie' blog I posted the other day.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
Page: 1 of (1)  

Report Innappropriate Post

Other Living with Gastroparesis General Team Discussion Forum Posts

Topics:
Last Post:



Thread URL: https://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x26236x43630629

Review our Community Guidelines