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Sunday, April 7, 2013

Advice for the Newly Diagnosed with GP/DTP

Today, I posted this question to one of the groups I used to be in, "if you could give any advice to the newly diagnosed with GP/DTP, what would it be?" I received some amazing responses, so I thought I would share them in this article. I've tried to cite people as best as I can without giving away personal information. Please note that letters in all caps and bold are links.

I know that when I was finally diagnosed in March of last year, I did two things that really helped me.

The first thing I did was start this blog. I started it to keep track of my medical information, visits, testing, and everything else that I wouldn't remember later. My main goal was to help people through my own experiences so that maybe they wouldn't repeat things that I have done in the past like listening to bad advice from doctors. I was put on two medications that actually did the same things AND they slowed down motility! I also know that through my research, there's not really a whole lot on the internet about Gastroparesis or support groups. So, I made THIS entry to put all of my research in one place for people who may need support groups. My article with online resources has since been used by United Healthcare as an electronic resource for GP/DTP.

The second thing I did was purchase a journal. I carry my journal around with me everywhere! I do daily entries to log what I eat, when I eat, what time, when gastric spasms start, if I go to the bathroom, when I get sick, how much I got sick, and how I feel. You can give this journal to your doctor for them to read to help them understand what you're going through. If your stomach is like mine, it betrays you when you get to the doctor so that the doctor thinks it's fine. It will also help you distinguish patterns in what you eat and what makes you sick. It might cut down on the amount of testing needed at the doctor's office as well. I've got a TARDIS journal that I write in because I'm a huge Doctor Who fan. A picture of my journal is below.

Also, here is a picture of me during Christmas 2011, before I became ill. The picture below it is the one I took today.

In addition to my own personal advice, I would like to add some more from the wonderful GP Facebook Page that I own/admin. Here is a list compiled from that page.

1. Emily's Stomach. I have admins who will help you keep motivated and to help to answer any questions you may have. You can PM the page and we will answer your question to the best of our ability. I would also suggest joining a support group. I have a lot of good ones listed in a different article.

2. Be your own advocate (Kirsten). I can't stress this enough! Being your own advocate and do research on the newest treatments for GP. Look up the medication you're prescribed and see if the doctor missed potential side effects like slow motility, nausea, and vomiting. Like I said previously, my GI doctor put me on two medications that did the exact same thing and they slowed my motility WAY down. HERE is a list of medications that make GP worse. **Please consult your doctor and pharmacist about medications as I'm just giving advice, I am not practicing medicine. I'm trying to guide but not take the place of the professionals. Always check with them FIRST.**

3. Believe in yourself (Melissa)! You are your own cheerleader and you CAN do this! I know the road may seem rough sometimes but believe in yourself like we believe in you.

4. Research your condition (Diana)! Sadly, doctors don't know everything. You should research your diagnosis. However, with all things on the Internet, make sure you're researching reliable sources (Melissa). It's important for you to stay on top of all of the latest news about GP/DTP because most doctors aren't very familiar with GP or how to treat it. I usually go into the doctor armed with knowledge he doesn't have. Most people with GP, I've found, know more about GP than the doctor.

5. Ask Questions (Melissa)! I can't stress this enough. After you do your own research, compose a list of questions that you have for the doctor and bring them in with you. If you write down what you need to ask, you won't forget. I've given my doctor a list of questions that I've written down before. He addressed them all. Ask about other treatment options for GP like Botox, the Gastric Pacemaker, and Domperidone.

6. GI doctors at the MN Mayo Clinic recommend marijuana, where it's legal, to help with GP (Melony). Be careful though, because even though marijuana might help you eat, it can also slow motility.

7. It's NOT all in your head! I *hate* it when people say this and I was told this nonstop for the past few years. I've lost friends because I kept cancelling on them. They thought I was just being flaky or that I was being anti-social. They also told me, "well, you're ALWAYS sick." Don't let this defeat you. You can help your friends understand by using THE SPOON THEORY. I've used this for a few of my friends and it's helped. I actually had some of them come back and apologize to me. Please read it, it's a great article. They also have a page on Facebook.

8. Don't give up (Tracy)! We all have rough patches that knock us down. However, get right back up and keep fighting! Lean on others for support.

9. You are NEVER alone! Find someone that you can talk and join a support group. My suggestion would be the Stronger Than GP Support Group ( Feel free to add me as a friend. We, the admins and myself, get what you're going through. We're here to help.

10. Be patient (Judy)! While there is no cure for GP/DTP, we have good days and bad days. Sometimes, the bad outweighs the good, but it will pass. If you are having GP attacks, be patient and try some deep breathing exercises. The one that was suggested to me at Mayo is called Diaphragmatic Breathing and an instruction video can be found HERE.

11. Stay hydrated (Judy)! If you let yourself get dehydrated, that opens a whole new can of worms. You'll have terrible headaches, dizziness, fatigue, and maybe worse. Even if you are vomiting, try to suck on ice chips or if you can tolerate it, sip on Pedialyte. Stay away from Gatorade, speaking from personal experience. It's full of sugar that won't sit well on your stomach and then you'll have very interesting colored vomiting. If you don't stay hydrated, you'll end up on an IV in the ER, and that's miserable. Don't torture yourself.

12. Try and take liquid or melt away vitamins (Judy). I am currently dealing wtih a vitamin deficiency because my body is malnourished due to starvation. This just digs you into a hole and once you're there, it's hard to climb back out of it. Try Flinstone's chewables, vitamelts, or liquid vitamins. Stay away from things like gummy vitamins because they'll just sit in your stomach, undigested. I have recipes that are GP friendly, including juicing recipes at PINTEREST.

13. Lean on family (Julie). I know some people have families who aren't supportive because they think that the illness is in your head, still. Don't give up on trying to help them understand. Use the Spoon Theory (mentioned above). This is one of those situations where you will find out who your true friends are. If you lose friends like I did, then they weren't really your friends to begin with and now you have room to make new ones.

14. Praying/religious support (Lyndsay). If you are religious then prayer, faith, and emotional support from church members will help you through this. You can also seek emotional guidance from a priest to help you on your journey.

15. Keep yourself happy (Monica)! This is really important for your well being. If you need ways to cope with GP or distractions from the pain, please check out a previous entry I wrote by clicking HERE. It contains lots of ideas that you can use for inspiration. I like to write, distract myself with my favorite TV shows, and listen to music.

16. Keep looking until you find the right doctor (Nikki). Nikki writes, "don't forget that they work for you!" She's right. Keep searching until you find the doctor who is right for you. Find someone you can trust that will listen to you. I've gone through about ten GI doctors and I'm still having issues finding one that I can trust to listen to me. Don't get discouraged. The right doctors are out there.

17. Take advantage of the good days (Jessica). Good days with GP can be few and far between. So, take every minute of a good day and enjoy it! I've had one or two good days recently, so I milked it for all it was worth!

18. Snap out of Denial. We all go through it. I've eaten foods that I shouldn't have a few times because I really did believe when I was first diagnosed that it was all in my head. After I ate, however, the gastric spasms hit with a vengeance! LaShelle has written out the GP diet that was given to her at Mayo. You can ask her for it.

15. Dealing with Hypoglycemia. I use Shok Blocks because they work quickly and they don't taste that badly. The link to the Shok Blocks on Amazon is HERE.

I hope this article will make your transition to living with GP a little easier. If I may have missed something, please comment below and I will update my entry accordingly. Just remember that it's not in your head. I'm going to conclude with this passage from an unknown author:

I wish you enough sun to keep your attitude bright.

I wish you enough rain to appreciate the sun more.

I wish you enough happiness to keep your spirit alive.

I wish you enough pain so that the smallest joys in life appear much bigger.

I wish you enough gain to satisfy your wanting.

I wish you enough loss to appreciate all that you possess.

I wish you enough hellos to get you through the final good-bye.

-Author Unknown


Anonymous said...

First off I wanted to say, Emily, how incredibly gutsy and brave you are for creating this blog to not only share with people your story but provide a place where people in a similar situation can use as a resource to help cope with GP/DTP.
My question to you is this: Have you ever used medicinal cannabis to help alleviate the pain and discomfort of GP/DTP? I know if you are in a non medical marijuana state it might be difficult to obtain. Also, I don't know what your personal position is on MMJ but I can tell you this, I have many friends and have heard many stories from people who deal with truly debilitating illnesses that benefit GREATLY from MMJ.
Also, there are many ways to administer it without having to smoke it. Edibles, balms, tinctures and lotions are very effective methods. Anyway, I'm just some "stoner" trying to push "pot". I'm a happily married man who teaches at a Catholic School and I believe people should be educated about the incredible healing properties of cannabis. I would love to hear your take!

Anonymous said...

Of course after reading that I noticed I forgot to add "not" during the "stoner" line. Nice one, I know.

emilysstomach said...

I believe that it should be made legal. I mean, it's proven in studies to help cancer patients control their nausea enough to eat and with some of my friends, it's the only way that they CAN eat. It's not legal in Georgia and I don't foresee it being legal any time soon.

Dimestore said...

You said you have tried ten different GI docs, and that you are in Atlanta. Have you seen Dr. Patrick Waring at Piedmont? I've been seeing him for past 18 months and really like him.

emilysstomach said...

I haven't seen him yet. I haven't been back to Piedmont since they sent me home from the ER with a misdiagnosis when I actually had sepsis in my leg. If I hadn't gone to St. Joseph's after they sent me home, I might have lost my leg.