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Sunday, April 7, 2013

Advice for the Newly Diagnosed with GP/DTP

Today, I posted this question to the GASTROPARESIS FACEBOOK PAGE, "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 admin. Here is a list compiled from that page.

1. LASHELLE'S THIRTEEN STEPS TO HAPPINESS WITH GP. LaShelle wrote these in January but if you're newly diagnosed, you should read them on her blog. The steps will help you come to terms with GP.

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.

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. LaShelle has also written a great article about self doubt that can be found HERE. Please read it, it's a great article.

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! Again, LaShelle has addressed this in the GNE blog. You can read her article HERE. Find someone that you can talk to in a support group. or on the GASTROPARESIS FB PAGE. Feel free to add me as a friend, as well as the other admins on the page. We get what you're going through.

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.

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