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Do you feel like you are not taken seriously?
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Don't risk taking a gamble with your health.
I just got diagnosed with Gastroparesis!
Now..... What Do I Do?

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Now that you have the diagnosis the next steps you take will be the most important ones:
 
 
  • #1-Support!

The best treatment for any chronic condition is a strong support system to be there for you every step of the way whether it is family, friends, loved ones or online support groups. No one wants to suffer alone and we all need support to help us through the journey.

  • Gastroenterologist-GI

Make sure you have a doctor who specializes or treats those with Gastroparesis. The easiest way to find out can be simply asking the registration department or nurse if the doctor has patients he or she is currently treating with Gastroparesis.

  • Specialists

Now to build your team of doctors. With Gastroparesis or any chronic medical condition you must think of your care as a 'team' effort. This involves not just your primary care physician but other specialists. The better the team, the higher quality of care you will receive in the long run. Some may feel having a surgeon is jumping a bit too far ahead however once you are faced with an emergency situation you don't want someone operating on you that doesn't fully understand your unique medical condition. Planning ahead is not only wise but takes the stress off of family, friends and loved ones.

  • Medical Records

Most doctors will require: recent medical records, tests, procedures, surgical operative reports, etc. If you can personally retrieve a copy of these reports it will not only save you time but will help make your follow up care a lot easier. Make a few copies, one for your doctor and one to save on file.

  • Insurance/Healthcare companies

Yes, I understand how frustrating figuring out the network policies and out of pocket co-pays can be with insurance companies. Always make sure your specialist is in network and you fully understand what will be covered. Sticker shock can be horrible when you don't understand your insurance policy and the bills start arriving in the mail. Money doesn't grow on trees and always remember your doctor works for you, so if it isn't a perfect fit the first time there are plenty of other physicians out there in the world to choose from. You deserve nothing but the best and the best is worth the wait.

  • Diet-What can I eat or drink?

Remember, each Gastroparesis patient is unique. What might work for one patient might not work for another. Never expect any specialist to give you a diet list or instructions that will work 100%. Trial and error will help you determine which foods and liquids work best for you.

Fluids can range from sport drinks, low acidity juices, Smartwater, fat free dairy products, etc. Some foods that can aggravate Gastroparesis are high starches, pasta, red meat, fruits, vegetables and caffeinated products. Remember, McDonald's and Burger King don't count unless you plan on visiting the emergency room later that day. Be wise on your new diet choices, try foods with no MSG's, organic, pureed, protein meal supplement drinks and bars.

 

  • Fear Factor-Questions

     1. Will I die from Gastroparesis?

A-No one can predict your future but remember one important rule during your Gastroparesis journey; attitude can MAKE or BREAK you!

     2.How will I know when I have a flair up?

A-Think of the worst flu or stomach virus you have ever had, now times that by 100 then add the after Thanksgiving day dinner feeling when you had more than a few extra helpings followed by extreme fatigue that lasts more than a few hours. Gravity is our best friend to help move food through the digestive tract. Too much sitting can prolong the already delayed digestion process.

     3. How will I know if I become dehydrated?

A-I highly suggest buying a scale that measures water. This will help keep you aware of your body water percentage on days when you might need to take in extra fluids. Pedialyte and other products that contain electrolytes are a great tool in helping to combat dehydration.

     4. Is this really just in my head?

A-NO. This is not in your head. Gastroparesis is a real dysmotility condition. It might be time to move onto a new doctor if you are ever told your Gastroparesis is just all in your head.

     5. Does Gastroparesis cause pain?

A. Yes. Gastroparesis is a GI dysmotility condition which doesn't allow for proper motor and nerve function within the digestive tract. You can expect pain with Gastroparesis. There are many medications out there to help ease 'some' of the pain which is why its so important to work with your doctor in finding out which ones work best for you. Heating pads are also great tool to help aid Gastroparesis pain.

     6. Will my Gastroparesis get better or worse?

A-This is a hard question to answer because each GP patient is truly unique. Some may have mild Gastroparesis while other patients might have moderate to severe Gastroparesis. Depending on your initial diagnosis and if your GP is from diabetes, surgical, viral, etc will  determine if your condition gets better, stays in remission for long periods of time or gets worse.

 

  • To work or not to work with Gastroparesis? That is the question....

A-Each individual will get to know over time with Gastroparesis his or her limits when it comes to working. Most either try to continue working at a normal schedule while others might decide to cut back to part-time hours. You may need to change careers to something easier working around your Gastroparesis or a job working from home.

Overtime your Gastroparesis could progress in which working is no longer an option. This is the time you need to sit down with your doctor and explain your concerns with him or her about going on disability. Once you both have come to a decision I highly recommend using a large law firm either in your area or out of state who can represent your Social Security Disability case. The best national SSD advocate law firm that represents all 50 states for disabled individuals;

Binder & Binder 1-800-66-BINDER/1-800-662-4633

http://www.binderandbinder.com

 

Remember to stay strong, keep the good fight alive and don't panic. You CAN still live a life with Gastroparesis. Diet changes and finding alternate ways besides medication to help ease symptoms takes time, it won't happen over night but it will happen. Patience is a must living a life with Gastroparesis. Now on with your GP journey and get those boxing gloves laced tight! Life is worth fighting for and you my friend are worth the fight!

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This web page was designed to help Gastroparesis patients as well others who suffer from chronic medical conditions. It is not intended to be a cure but a helpful tool by providing ideas and suggestions.
*This page will be updated on a daily basis.

*Spreading GP Awareness One Person At A Time*
You My Friend Will Never Again Walk Alone.
2005EWD