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AYLEA56's Photo AYLEA56 SparkPoints: (0)
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8/29/11 10:31 P

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Thank you 1STATEOFDENIAL,

I am planning to start reading about this information you have provided. I certainly plan to understand it as well as I can before sharing it. Fortunately for me my doctors encourage me to research and share the info with them. So I will. I see my Rheumatologist later in Sept. I currently do not have an appointment set up with my Gastro MD. After I read and see where I stand based on my various new symptoms/issues. I will set up an appointment with her. She is open to me seeing her as needed.

Thank you for all the wonderful info you provide,
Aylea

Aylea

May every Day be a Blessing to You!

I long to accomplish a great and noble task, but it is my chief duty to accomplish small tasks as if they were great and noble.
~ HELEN KELLER


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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
8/29/11 9:42 P

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DTP/GP/CIP is very tricky - it can be caused by so many different things, and can be made worse by many things as well.

Since many doctors have never heard of the three conditions, or do not really understand them, I would suggest doing some reading first so you can explain why it makes sense to you. Also, giving them places where they can read might help them (if they're willing to take the advice that is - my doctors haven't been interested enough to learn about the conditions).

Check out G-PACT at www.g-pact.org or www.facebook.org/GPACT There is a lot of information available if you take the time to check it out and you can find what you need to help explain it to your doctors.

Glad you found your way to our team! The more the merrier... in the team - not so much in the condition of course. Feel free to ask questions or try going to the new thread I posted about foods to try or avoid. I'm hoping that thread will help people who are newly diagnosed to know that when you can still eat solid foods there are a lot out there to try.

~ 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!
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AYLEA56's Photo AYLEA56 SparkPoints: (0)
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8/29/11 8:07 P

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Hi!

I am new to this team and fairly new to SP (4/11). I was diagnosed with Gastroparesis almost 2 years ago and Lupus, Sjogren's Syndrome. My Rheumatologist had me see a Nutritionist who assisted me in finding what foods were causing me inflammation. Through trial and error I have found what foods have to be pureed, liquid, which solids are okay or completely avoided.

I find that Lupus flares cause my stomach to tolerate foods even less. Sometimes eating the wrong thing can cause a flare. I pay very close attention to what I eat. My Nutritionist does carry a protein/enriched vitamin powder that I buy from her and can make my own smoothies and get some of the nutrients I have a hard time eating in regular veggies and etc.
I sometimes wish to fore go eating altogether but one needs to eat. I miss tasting the foods I can no longer eat like broccoli and so forth.

Thank you for the information provided here. I thought I have done a lot of research online but did not here about DTP or CIP until now. Though I have been feeling like the rest of my digestion has been taking a lot longer to happen. I will read up on these and see if my Gastroenterologist and other Drs. know about these.

Once again Thank You All for sharing.


Aylea

May every Day be a Blessing to You!

I long to accomplish a great and noble task, but it is my chief duty to accomplish small tasks as if they were great and noble.
~ HELEN KELLER


 current weight: 6.2  over
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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
8/19/11 10:01 P

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I'm glad to help in any way I can.
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~ 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.
BODHIAMI's Photo BODHIAMI Posts: 27
8/17/11 7:08 P

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yes, thanks for the info!

"To thine own self be true."


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SOSMEGOD's Photo SOSMEGOD SparkPoints: (0)
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8/17/11 5:01 P

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Thanks I'll look into the site.

The Best You Can Be At Any
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-Elizabeth Alraune sosmegod


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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
8/16/11 6:04 P

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I said the same thing - the more I learn and know then the better chance I can make this easier on myself. I probably can't cure myself, but if I minimize harm then I'll take that! I've spent countless hours researching and studying about anything that could have anything to do with DTP (Digestive Tract Paralysis - the larger form of GP that includes CIP - chronic intestinal pseudo-obstruction) and do my best to inform others - or at least point them towards information so they can learn it on their own. I now know more about DTP than my primary doctor, my Endo, and my GI specialist (which is pretty scary to think about). Which means if they ever choose to listen, I'll teach them.

You should check out G-Pact: www.g-pact.org www.facebook.com/GPACT
They're a non-profit for people with GP/CIP/DTP. August 19-27 is DTP awareness week, so it is as good of a time as any to learn and inform people. An estimated 8 million Americans have some form of DTP yet many doctors haven't heard of it or understand what it is. It is quite unknown to the general public as well, which is why informing people is so important.

~ 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.
BODHIAMI's Photo BODHIAMI Posts: 27
8/16/11 5:41 P

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Thank you for any and all info and support! The more I know and understand, the easier this will be for me :0)

"To thine own self be true."


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SOSMEGOD's Photo SOSMEGOD SparkPoints: (0)
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8/16/11 5:01 P

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Hang in there life will get better. As StateofDenial said, Take it slow and one food at a time. Learn your body what you can and can and can not tolerate. I hope you feel better soon and remember we're here to offer support.

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


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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
8/16/11 2:45 P

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As I tell many people who have just received the diagnosis, if you're going to add food back into your diet, start out with very bland, easy to digest, and easy to swallow foods (which you are - a liquid/pureed diet) then add one food at a time. This will help you determine which foods your body will accept and which it won't. The guidelines for the GP diet are generalized and do not work for everyone. If you figure out what your own body likes, then you won't be questioning what of a dozen foods could be causing a problem.

When you're okay to attempt new foods (I would run it past your doctor first), start out slowly and only add one new food every few days. It takes 24-48 hours for a normal digestive system to pass food from one end to the other - for people with GP it can take several more days, so adding 1 new food in a few days will allow your body to try just that single new food. If you don't already know, aim for low fat and low fiber as these are the 2 hardest to digest macronutrients.

I hope you'll be able to try solid foods again soon, but know that you're probably going to have GP for the rest of your life. Adjusting to it slowly and learning will help you in the (hopefully many) years to come. Hang in there - it does get better.

~ 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.
BODHIAMI's Photo BODHIAMI Posts: 27
8/15/11 9:03 P

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Thanks for the support! I am eating pureed and liquid foods but am hopeful that I may be able to slowly introduce more foods eventually :) it's difficult.... But it's comforting to know there is the support available from other Gp patients like yourself!

"To thine own self be true."


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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
8/15/11 8:44 P

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Welcome and I'm glad you found your way here. GP is a very difficult condition and everyone has to figure out how to deal with their version, but we can do better when working together.

You say you're on a liquid diet - are you on TPN (tube feeding), just liquids, or is there hope that you can have solid foods again later? I ask because every person's GP is different and those of us who have had it for longer may be able to help you as you get used to your new diet by recommending certain things. I started with a diet of easily digested and easily swallowed food but almost a year later I have returned to mostly solid food though a very planned out diet. Others will never be able to return to solid food, so I don't want to assume.

If you have any questions or need help, please ask. There is good information posted around the team for you to look at. Welcome and I hope things will start looking up for you as you adjust to having GP.

~ 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.
BODHIAMI's Photo BODHIAMI Posts: 27
8/15/11 6:34 P

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I was recently diagnosed with GP after a terrifying trip to the ER and hospital stay. I refused reglan because of the side effects which leaves me on a liquid diet. So far so good on the liquid diet. I do miss food, but never want to feel that bad again! I thought I was having a heart attack!!! I focus now on getting enough nutrients and keeping muscle tone... It's good to know there is support on here! :-)

"To thine own self be true."


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