Group photo
Author:
1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
2/19/13 8:52 P

Send Private Message
Reply
Welcome to SP and to our team. I'm sorry to hear that it seems you have GP, but I'm glad you found your way to us. Mowgli has given you a lot of information already, but I'll give you some as well.

There are so many causes for GP that it's impossible to name them all. In a few rare cases there are spontaneous cures, where the body begins to start working properly, but no one can count on that happening. However, every person's body is different so every case of GP is different and every reaction to treatment is different. There's a wide range of severity, and for those who can still eat enough to not require TPN (IV nutrition) or enteral (tube) feeding, how well our digestive systems are working can change daily, depending on what we've eaten recently, stress levels, and several other factors. This is why it's so important to do the elimination diet, starting with basic, thin liquids and trying a new food every 2-3 days to see how your body reacts. As you start finding what foods work and which don't, then you'll know what to stick with.

Take heart: 1 in 25 people in the US have GP in some form. You are definitely not alone and there is a LOT of support out here waiting for you. The diagnosis is difficult to hear, but it is not a life-ending diagnosis. Many people live full, healthy, wonderful lives with GP! In fact, there are people who became body builders and marathon runners even while on TPN. The best thing you can do is find how to best take care of yourself and work closely with your GI doctor to find what treatments are best for your case.

As for foods, I do have a thread on our team that may help give you some ideas for what foods to try over the next few months, but be sure to take your time. It is a long process, but totally worth it. Also, consider trying gummy vitamins. Start with just an adult gummy multivitamin (chew it well) and talk to your doctor to find if you need any special vitamins (C, D, B12, etc) - don't take the special vitamins if you don't have to because of the cost and no point to taking them if you don't have to.

Know that our team is here, and if you have questions let us know and we'll do our best to answer them or send you in a direction to get an answer.

~ 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.
MOWGLI7's Photo MOWGLI7 SparkPoints: (0)
Fitness Minutes: (120)
Posts: 32
2/19/13 5:30 P

Send Private Message
Reply
awe elle, bless your heart, very understandable we all went through this it is normal so not to worry.
it is ok, just know you will get through this.we have to

I am 48 years old, i had a diagnosis of breast cancer in oct 2009 and nov 20, 2009 had the double mastectomy with immeadiate reconstruction, (haha nice set now too i make my self laugh) a few weeks later i had on jan 26 0f 10 i had the total hysterectomy, as i am a BRCA 1 gene postive. a couple months later i was diagnosed with gastroparesis, and i had gall bladder surgery in 2006 for removal of that and in feb of 12 i was diagnosed with narcolepsy with cataplexy, and i also see my cancer dr every 4 months for uneplained enlarged lymph nodes and i have severe unexplanied edema in both my legs to which i wear compression stockings, so many things but yet we must stay positive because really what choice do we have. I refuse to let it take my happiness and life away and i still walk and take zumba class and so on. it is a period of time and adjustment and each person handles it in thier own time and no one can tell you how to feel if they do not have it so stay strong elle.
You will meet so many people and they are so kind and helpful

It does not go away the gastroparesis from which i understand, some say they think it gets worse other say it does not, what can happen is other things can make flare ups if you will and stress can shut you right down until you can relax and it releses the tensions.
foods will trigger and it is many trial and errors, you most likely will have good days and bad days .

again until your see your gastro dr to know where you are at this is just what i have experienced

check the names of those group i told you of on facebook, emily scherer is the creator of them such a great group and join and you will learn so many clever ideas and so much support,
I am extremely lucky and so many are so much worse off i wish i could help them but we can offer our friendship and support

 current weight: 142.0 
151
145
139
133
127
ELLIEGREEN2 SparkPoints: (98)
Fitness Minutes: (0)
Posts: 2
2/19/13 5:09 P

Send Private Message
Reply
Thank you so much for your reply. It made me tear up. I'm having so many emotions today. Do you think that since my symptoms are not so severe, that they will never be? Or does this get worse with time? Since yours is viral, from what I've read it should get better, right? Or is that another misconception? I feel so sad that you've gone through so much and to be honest with you, I feel really scared that I may get worse, too.

I'm hoping not to take any of those meds except the domperidone, which I have read does not have all the side effects. I would be very interested in the other groups you mentioned. How do I find them and join them?

Thanks again so much for replying. I cannot tell you how much it means. -- ellen

MOWGLI7's Photo MOWGLI7 SparkPoints: (0)
Fitness Minutes: (120)
Posts: 32
2/19/13 4:52 P

Send Private Message
Reply
Hello ellie, welcome to our group of friends.
wonderful family here and advice too.
Sorry you also may be going through this. My scan showed extremely slow as well , in 2010 about 8.28 hours. There are medications they may try on you once the results have been confirmed.
Usually they try reglan which may or may not have been injected during your scan, the second may be erythomicin an antibitoic it is hard on the stomach and many cannot tolerate it.
the 3rd choice is domperidone not approved in the US and must be compounded and insurances usually do not cover it not being FDA approved.

I cannot take any of these meds and i was recieveing the Botox into the pylorus for 3 years which i had every 12 weeks worked fantastic too, and insurance has now denied after all these years, not just mine but almost all insurances with the new health care acts taking place in 2014, they are getting things out now ahead of it all sadly 8-( . so now i have lost my treatments. i lost my appeal but i will still pursue as long as i can until we run out of options. the gastric pacemaker for extreme cases ,also typically is not covered as this and botox even though fda approved are considered experimental.
there are tubes and such also if it becomes etxtreme.
Modification of diet is the best place to start

if you go online there are several gastroparesis diets to try, everyone is different and what they are able to tolerate. You may also ask your dr to refer you to a reg. dietician to help you if needed. Insurance usually covers this as well.

stay away from fresh fruits and vegtables, seeds and nuts and fats etc for starters.go for cooked like boiled or baked yams skinless, butternut sqaush etc.

If naseua becomes extreme i am on zofran and there is phenegren and compazine and other choices.

if you cannot find the links for proper gastro diets let me know

i have extreme gerd and have to have my esophogus dilated at least once a year and i take protonix 2 times daily and tums about 5 times daily and still have troubles.

I am not diabetic mine they consider idopathic perhaps from a virus. however i am a month past treatments now and i think my sugar is now off as i am shaking after i eat like i had a case of red bull, i have a call today into my dr.

Let me know if i can help, i am not a doctor but will do all i can to help you
also on face book, there are some woonderful people on laughing through gastroparesis, and secretly green and gastroparesis let me know if you would like more info they have so many ideas.
god bless emoticon

 current weight: 142.0 
151
145
139
133
127
ELLIEGREEN2 SparkPoints: (98)
Fitness Minutes: (0)
Posts: 2
2/19/13 4:01 P

Send Private Message
Reply
Hello - I am 54 years old and have a slow emptying stomach. I had my gastric emptying scan done today, and was told it is abnormal. I've had symptoms for a couple of months now and really am not sure what brought this on. I'm not diabetic. I do have Hashimoto's and did have a virus in December. In addition, I was taking a calcium channel blocker which I discontinued about a month ago. I'd been having horrible reflux, and endoscopy showed food undigested in my stomach. So now I am researching all I can to find out how to live with this, how to not compromise my nutritional needs, and how to maintain my weight. I've lost about 16 pounds in the last six weeks. I am about at my goal weight, and I don't want to go any lower! I do not have the nausea or vomiting, just early satiety and sometimes not much appetite. Other times, though, I do feel hungry but the reflux is making me avoid more and more foods. I am using the nutrition tracker on sparkpeople to help me determine what to eat each day to get the right amount of calories, carbs, protein, and fat. I am also trying to learn the best amounts of supplemental vitamins and minerals I should be taking for optimum nutrition and trying to find things that will absorb since I have malabsorption. Any support and suggestions would be most helpful. It's been a very emotional day for me to hear that my scan was abnormal. I knew something wasn't right, but just to hear it pronounced is hard.

Page: 1 of (1)  

Report Innappropriate Post

Other Living with Gastroparesis Introduce Yourself to Team Forum Posts

Topics:
Last Post:



Thread URL: https://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x26236x52194472

Review our Community Guidelines