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Friday September 3rd 2010

Gastroparesis

Two words I would not have understood three years ago.  “Gastroparesis Awareness.”  Gastropa  WHAT?! 

I’ll try to make this short. A little more than two years ago, I started to have horrible stomach pain. I mean double-over-and-lay-on-the-floor-holding-your-belly kind of pain. And I have given birth without medication.  Trust me, it’s bad.  On top of that?  You know how you feel when you have the stomach flu, and your stomach starts to roll just before… you know, the big event?  Well, imagine that feeling all day.  That’s me. 

But I’m a mom, and I have to keep going.  So I try to mask it.  I hear people complaining about “this” and “that.” And they have no idea.  None.  If you can EAT FOOD and it does not cause you double over pain, you are blessed. 

Gastroparesis means “paralyzed stomach.”  Many people with diabetes develop it, while others get it from botched surgeries, often when the vagus nerve is accidently cut during a gallbladder or gut surgery.   Some people develop it after a virus, which has the possibility of going away after time.  Mine is idiopathic – meaning they have no clue why you get it.  (No idiot jokes here please..I’ve already gone there!)  Your food just sits in the stomach.  It does not digest. 

So imagine eating a regular dinner.  Then imagine it sitting in your stomach.  Your belly becomes hard and bloated as if you were pregnant.  The pain starts. Then the nausea as the food just “rots” in your belly.  Many vomit at this point, but some can’t.  Food, which has been comforting all your life, becomes the enemy. It is a love/hate relationship. 

Lots of people who suffer from gastroparesis lose weight. So much that they require feeding tubes and more.  Some require gut transplants, while some die.  Others gain weight from not eating. (Yes, this was me!)  Your body goes into starvation mode and holds on to everything it can.  

There is no cure for gastroparesis.  I am one of the lucky ones who can tolerate some types of food if I take a pill (Motillium aka Domperidone) purchased online from Brazil.  How crazy is that?  These tiny little pills keep me alive.  They allow me to eat a piece of bread or chicken without falling to the ground in pain.  They make my stomach contract just enough to get the stuff down.

My meals are limited.  Some days are good and some horrible, depending on my hormone level.  I can eat chicken, fish, bread, pastas… comfort food works best, again, with my little friend the white pill.   And with limited portions. What I can’t eat, EVER, is steak, roast beef, fried foods, raw veggies and fruits, salad… all the good stuff.  Ground beef seems OK, unless I’m having one of my bad days. I consider that a HUGE blessing. 

It took about nine months for me to adjust mentally to my illness.  But it never really goes away – the fear of food, the disbelief that the one thing you have to intake to survive does not “work” in your body.  The fear of “What will happen to me when I am old? Who will order my meds online?  Who will stop the cook from serving me beef?”  “What will happen to me after taking domperidone for so long!  Will it cause cancer?!” 

But I am a survivor.  And  a Mom.  And moms can’t get sick.  So I try to ignore this whole crazy thing and get through each day without my kids knowing I am practically doubled over with nausea or pain.  And then there are the good days. Ahhh those sweet days where I don’t feel my stomach.  Blessed be the Quiet Stomach. 

I have not written this for sympathy.  I wrote it partially as therapy for myself, and partially to spread awareness about gastroparesis.  There are so many people suffering, some of them dying.  And through all this, I just don’t hear much about research and cures.  If you want to learn more, or help someone you know who is suffering from this horrific, silent and very unfair chronic illness, you can visit www.g-pact.org.

  • I heard insects are very good for gastroparesis, especially those with salt and vinegar.
  • My doc is really pushing pacemaker surgery for my stomach muscles. He admits it seems to work around 50 percent of the time. Has anyone out there had the surgery? My name is Gay. My email is gtperdue@yahoo.com. Thanks.
  • Gay, have you decided anything? I think I am going to start a website for GP and have a bulletin board so people can share stories and help each other out. I know lots of people have pacemakers for their stomachs - I think it has to be fine tuned off and on.... but I've heard of people it has helped.
  • cornelia
    I thought I was crazy, I have this and I too gain weight. I have alot of swelling as well so I assume it is from that. Your blog has made me feel so much better, thanks for telling your story.
  • Oh thank you for your kind words! Don't you hate it... you stop eating because food makes you sick, but you GAIN weight. Just nature's little joke. But through all of it I have been thankful that I have the gaining weight side rather than the feeding tube side... I feel blessed, if that makes sense. I swell up too... all over. And lots of people with GP wear maternity pants b/c their belly is small one day and bigger the next!!
  • CONNIE
    Thank you Katherine for your response. I will get the nux vomica pills. I am hoping my Motillum will arrive soon. Maybe later I will try Align. I wonder why the gastro doctors don't have Motillum in the office to purchase. Waiting for 7-14 days is awful. Thank you again.
  • LACONNIE2003
    I was just diagnoised with gastroparesis. It is paralyzing not knowing what food to choose to eat. Something that is easy to digest. I completed my research and bought a few things at the health food store. Ginger, papaya and eater digest tea to help with digestion of my food. It has helped. I am waiting for my medication; motilium. Its been only 7days since I ordered it. I hope it arrives soon. Until then, I eat several very small meals. The doctor did say that it may have alot to do with my thryroid. It is at 6.3. Which means I'm hypothryroid (underactive). I read if you have a problem with your thryroid, you may have digestive problems. Could it be that easy?? So I am taking thryoid medication, praying it will turn things around for me. I am hoping this helps. Reading articles has helped me..alot!
  • Oh I PRAY once your thyroid has leveled out your GP will go away!!! My thyroid was checked but it was OK. You sound like you have all the right things... the ginger helps me a LOT when I get sick to my stomach. I like chewing on candied ginger. Then I have papaya once in a while... you know what else helps that is all natural? For about three dollars you can order "nux vomica" pills. If you get really nauseous you put one under your tongue and it really helps. Motillium saved my life... I was able to eat REAL food with it... not things like steak or salad or fried items... but chicken, ground beef... it really works. Now I am off of it because of Align, believe it or not! I get it at Costco (expensive) and after three weeks began to notice a difference. If I go off Align I get sicker... so every bit helps!
  • Jeannie
    Katherine,
    I have been in so much pain the last couple of days. Today is really bad. I was hoping to hear from you by now, did I somehow miss your email? I did google your GI and his website looked good, had alot of information on it. Hope your doing alright and having a good week.

    Jeannie
  • Just sent you one... a hard week!!!
  • Jeannie
    I have had gastroparesis since 2004 and also have Chronic Intestinal Pseudo-Obstruction. (CIP) I'm on a liquid diet and in constant pain, of course some days are worse than others. I live here on the coast, Va. and was just sent to Iowa City, Ia. to see Dr. Satish Rao a motility specialest. He was very nice and DIRECT. He wants me to come back and do testing for a week, from a Friday to Friday. But at the same time he told me that they couldn't give me back any quality of life!? I'm comfused(?) Do very painful testing for a week...for what? If they already know they can't help me?
    Thanks for listening.....Just comfused as to what I'm going to do about these test. Hope everyone with GP has a happy tummy day.
  • Who is your local doc?? (You know I'm in Va Bch, right?) I am SO SORRY you are on liquids only. I consider myself so blessed to be able to eat food with GP. Are you going to do the testing? What testing is he talking about??
  • Jeannie
    I stumbled across your site while up during the night in pain. While reading I did see your references to the OBX and Va.Bch. so I thought you might be close. I'm in Chesapeake, my GI is Dr. Douglas Howerton. I would love to find someone that has had these test done and could tell me what they were like and what information they found out from the test. Here is what Dr. Rao wants to do, ready for this? Smart Pill; Glucose overgrowth; Jejunal Manometry; Fructose Breath test; Anorectal Manometry; Anal Ultrasound; Defecogram; Colonic Manometry; Gastric Barostat; Lactose Breath test....wow can you imagine? They gave me papers to read about all these and of course I googled them. But it is distubing to me that it says that they don't sudate to do any of these test and when you google them they say to sedate to do them. I just want to know that after having these we are going to know something more than we know now. Does that make sense? Are they going to be able to do something for me? Dr. Rao told my hubby and I that he could not give me any quality of life back. Am I looking for answers I can't get without doing the test? Am I looking for a way out of doing painful test I don't want to do? Or am I being smart about this and just not wanting to be another notch on his research charts? I have to travel all the way back to Iowa City Ia. to see Dr. Satsh Rao for this weeks worth of test, so I'll have to travel home with a tummy full of junk after the test....yuck. Love to hear what ya'll have to say. So happy I found you and to know you live right here!! Can I ask who your GI is? Are you happy with your dr.? Jeannie
  • Jeannie, I'm in obx with a borrowed internet connection that has a LOT to be desired. I am going to email you from my private email tonight or tomorrow.... I'm in Norfolk!!! Right on the border of Va Bch and Norfolk.... I see Dr. Jeff Willis and certainly don't mind putting his name out there publicly because HE IS JUST THAT GOOD. He knew exactly what I had the minute I walked in (many docs have no clue what it is, including ER docs) and even prepared me for the emotional side that goes with it... the "stages of death" really... denial, etc... I'll email you when I'm home!!!
  • Jeannie
    I am sooooo excited to read your reply that I ran (well walked fast, my bones ache) outside and read it to my hubby!!! He even was happy. I will look forward to your email. I DO understand your busy with your children, I remember very well. I have 4 children, my youngest is in his 3rd.yr as a pre-med strudent. I don't want to say that I don't like my GI, but no info like that about my disease and real negative about things I tell him that is going on and he told me that "ALL" his patients with GP get better. REALLY? And hasn't done anything for me since I have been getting worse and worse. Also told me that there shouldn't be any pain with GP. But sent me to a specialest at VCU and now at Iowa City, Ia (these are the 2 motility specialest in the US) and both told me that of course there is terrible pain with GP and CIP.(dah) Well I'm rambling now, so excited to talk and get info from you, to know someone right here going through this also.
    Hope you and your family had a great weekend. School is about here again. Good (mommy wise) and bad. (so quite) My son leaves to go back to the university in less then 2 weeks, breaks my heart when he leaves, my baby!! He takes such good care of me when I'm sick. Hubby is at work you know.
  • Pam
    You have captured exactly what I am going through. I am waiting to see a specialist to consider other options--currently taking Reglan 3 times a day and just praying I chose wisely for any solid food I ate that day. It really makes you miss the day when you could just eat--and go on with your life without all this drama. How we take that for granted. Thanks for sharing your experience. It helps me to know I am not alone with this.
  • Pam, you are VERY much not alone in this. I promise. Have you joined the Gastroparesis group on Yahoo? They are very supportive and helpful. I really REALLY recommend Align. I was able to go off Domperidone after taking Align for a month and a week or two. I didn’t notice any changes until I had been taking it for a month+. Of course I still can’t eat all the good stuff, but I can eat much more w/o the “pill.”

    Remember the days when you could go to a salad bar? When you could eat a Thanksgiving dinner, ALL of it? When you could go to a party and not even THINK about “what will hurt?” When steak was NOTHING to eat?? Hang in there…. I’m here to talk any time you want!
  • Pam
    Katherine: Align is just over the counter--correct? I will try it. What does your doctor say about Align. Supportive?
  • Pam, my GI doc told a friend of mine who went to him to try it. She doesn't have gastroparesis but she has terrible digestive problems and they said to get it. I was considering buying it and then I met someone at work that has gastroparesis herself. HER GI doc said to get Align and she SWORE by it. So my mom got me a box... and I haven't looked back! I was able to go off domperidone after a month of Align! :) It is over the counter but expensive. However not much different from domperidone. My mom gets it at Costco. Oh, it is over the counter. It takes several weeks to really see the benefits. I would LOVE to know if you try it and how you are in a few weeks.... !
  • Pam
    Katherine--I got some Align yesterday and started taking it. Luckily my cafeteria plan reimburses over the counter drugs because it was a little pricey--but if it works---who cares? I will give you an update in a few weeks to let you know if I see any changes. I feel a hopeful optimism and appreciate you sharing your info with everyone.
  • Yes PLEASE let me know how you do! Nothing is a miracle cure for GP as you know... and some things work for one person and not the other. But I would LOVE it if in three to four weeks you wrote back and said YES I feel much better!! Let me know!!
  • Pam
    Katherine: I think the Align is helping. I have been taking it for approximately 3 weeks and the immediate bloating/discomfort I usually have after eating has been less and less. I am still very careful what I eat and feel afraid to be too excited-- but hope this will be a tool to enable me to eat like a "semi normal" person. Thanks for the head's up and I will keep you posted.
  • Pam
    "Align" is definitely helping my bloating. Thank you for sharing about it. I am starting my 2nd box and really see a difference. I would have never thought this product helped with bloating but it really does. I might even dabble with reducing the Reglan before eating now-- based on these results. Still following a GP friendly diet........... but feel encouraged.
  • WOW, reducing Reglan!!! Oh i can't wait to tell you, I am starting a bulletin board for people with gastroparesis. It will be unveiled by Sunday I hope, depending on the hurricane. I am so glad the Align is helping... I am about out and I'm out of money... ack!
  • Pam
    The Align is kinda pricey but for the help it seems to provide--I am on board. I have an appt in October to see a specialist at UCSF. I ate a veggie burger with raw tomato and lettuce on Sunday and paid for it with extreme bloating and pain. Amazing how this little bit affected me. Excited to see your bulletin board and appreciate your feedback. Makes me feel less alone in the quest to feel better when I can share with "other sufferers". Thanks Katherine.
  • Dwcove
    I have had this for over a year now (post gall bladder surgery). I am on Domperidone and it helps, but the weight gain is getting me down. I wish it were weight loss, but I don't eat much and sometimes my food stays in my stomach for hours on end. This is most certainly not fun.
  • I'm so sorry... I've heard of a lot of people who get GP after gall bladder surgery. My weight is finally going down... I went to Curves religiously and lost some weight but not much. Now I walk about four times a day really fast for about 45 minutes... then I do crunches which i am SURE is helping with digestion and also do some weights for my arms in the back yard... now people are noticing... "wow you look great!" :) Have you tried Align? It has worked so well for me that I am off domperidone!!! It took about three to four weeks, but I am so happy I am doing better with Align.
  • C-cash
    I don't have it but my husband got it after having corrective surgery on an anal fistula. OMG. I don't know what else to say that you haven't already said. Our lives will never be the same. I feel so sorry for him. I totally can see why people commit suicide.
  • Thank goodness he has YOU though. You are obviously a supportive and caring spouse... I am SO SORRY he is going through so much. I am truly speechless after reading your comment... my prayers are truly with you and your husband. I am so, so sorry!
  • Susan James
    I am a reporter for ABCNews.com writing about gastroperisis. I would like to talk to you or other commenters on the site who have the condition. Can you contact me? Susan James

    susan.james@abc.com or 212-456-4875
  • Gay
    I was diagnosed with gastroparesis in January this year. I have had stomach problems for quite awhile. I am excited to hear you are doing a program on this disease. I also have peripheral neuropathy, fibromyalgia, diabetes. I also have had many surgeries due to weak tissue which causes continual prolapses. I am desperately looking for a good doctor. gtperdue@yahoo.com
  • Fletcherakiliah
    i was diagnosed with this in 2006 and it hasn't gotten any easier. please give me some help im on fish chicken pickles and plenty of exercise but no results. my email address is fletcherakiliah@yahoo.com
  • Do you mean weight gain? Or do you mean just with the pain/nausea? I took domperidone with every meal, but then after starting Align I am SO much better and can eat (GP food of course) without the domperidone. I have some horrible days where I can't take it anymore, but I am a lot better after the Align. It takes several weeks to kick in though. As far as my weight gain, I have lost 20 pounds now speed walking with my daughter... and lifting weights in the back yard. I didn't lose at Curves... i don't think I was getting enough cardio. :)
  • Halafax5000
    I have this too. Tell me what I should do. Noone is helping. Halafax5000@aol.com
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