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Mariasayys
New Member


Date Joined Aug 2011
Total Posts : 1
   Posted 9/9/2011 6:23 AM (GMT -6)   

Hello everyone my name is Maria (22), Arizona and I have a condition called Gastroparesis, I know most of you don't know what it is so I'll explain a little about it to everyone that's interested.

"Gastroparesis occurs when your stomach empties too slowly, causing undigested food to remain in it too long. You may experience severe nausea, unintended weight loss and malnutrition. Gastroparesis can be associated with diabetes or an underlying digestive disorder, but can also occur without a known cause. There's no cure, so people with gastroparesis usually need ongoing treatment with medication."

I can barley eat any foods and am losing weight at a horrible speed. I was diagnosed at 20 but had this condition since I was 16. Foods unfortunately are my worst fear. I love eating but my stomach disagrees with me. After eating or not eating at all I have extreme abdominal pain that refuses to go away, I can’t exactly explain the pain except saying a few thousand sharp knives are stabbing my stomach. I can barely get out of bed which is making me unable to work. I stopped going to school and started going to online schooling which isn’t that bad but my pain still affects my everyday life. My GI doctor gave me horrible news the other day and told me she can no longer help me with my disease. I was so disappointed but she said there’s a clinic that has the best GI doctors in the world and she would refer me to them. Tomorrow I’m going to that clinic (MAYO) and it’s only 16 miles away from my home in Tempe Arizona. I’m so excited (hint why I cannot sleep) and I hope to god they can help me. If anyone knows anything about this and can help me I would be very grateful thank you for listening!


badheartdude
Regular Member


Date Joined Sep 2011
Total Posts : 58
   Posted 9/9/2011 7:13 AM (GMT -6)   
Hello Maria, I too am a CP sufferer, intercostal neuralgia, caused by a kidney removal surgery. I wanted to say I understand how CP can affect your life everyday, I hope you are able to get more treatment from Mayo's, I have heard they are the best around! Good Luck and welcome to the forum.
badheartdude

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 9/9/2011 7:26 AM (GMT -6)   
Hi Maria, and welcome to Healing Well.

I am 26 and was diagnosed with Gastroparesis about four years ago - mine is secondary to my main problem, Complex Regional Pain Syndrome (CRPS), which causes autonomic dysfunction. It sure is a horrible condition to deal with. I am managing now a lot better than I was, but I almost lost my life to the 'GP' and spent a large amount of time in hospital with IVs, feeding tubes and a lot of critical care after my weight hit just 28kg (about 60 lb).

You don't say much about what treatment you've had - just that your GI doctor has said she can no longer help you.

Are you following any sort of GP Diet? It involves a bit of experimentation because everyone finds that they tolerate slightly different foods, but as a general rule -
* Low Fat - very important - FAT slows the rate at which the stomach empties
* Reduced Fibre - FIBRE also reduces gastric emptying rate, plus indigestible/insoluble fibre increases the risk of problems like bezoars (balls of material that can block in your stomach or intestine)
* No red meat (or only limited amounts of very lean red meat)
* Peel and cook vegetables
* Rice
* Pasta
* Oatmeal
* Pureed Fruit
* Small, frequent meals - I have to take things to extremes because my gastric emptying is really poor and I have about 12 tiny meals over 18 hours. Most people seem to find that they function best breaking down their food intake into 6, even 8 meals a day instead of 3.

Rapid weight loss is worrying. I'd recommend that you see a nutritionist or dietician if you're not already, as they have access to a lot of special supplements that aren't available over the counter. One that springs to mind for example is a product called Benecalorie, which is something like 200 calories/1.5mL - it's designed for people who can't handle much food intake but need to gain/maintain weight.

You need to make sure that your doctor is monitoring your electrolyte levels - particularly if you are also vomiting. I ended up hospitalised more than once with dehydration and my potassium through the floor.

Are you on any medications? There are several for gastroparesis, though I'm not sure what are available in the US. Here there are two main ones - metaclopramide (Reglan to you guys, I think?), and domperidone. There is also a third one, cisapride, but it's only available here under special authority from the TGA (=your FDA) because it has a potential to cause heart issues in people with certain underlying issues. There is also the option of Botox - this is injected into the pylorus via endoscopy, with the idea that by relaxing the sphincter you can increase outflow. Didn't work for me - neither did the medications as it happens (side effects with metaclopramide and domperidone, and I have heart issues that mean it's too risky for me to have the cisapride), but they do help a lot of people. Sometimes analgesics are necessary to manage the pain too.

I hope that helps - and if you've any questions about any of it do let me know :) Good luck with your appointment tomorrow *hugs* Please check back in and let us know how you get on.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9661
   Posted 9/9/2011 8:22 AM (GMT -6)   
I sure hope the mayo clinic will be able to help you, keep us posted on that, we
will be thinking of you....many well wishes to you in hopes you can find a treatment
that will be helpful....Keep us posted
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 9/9/2011 8:23 AM (GMT -6)   

 

         Good morning Maria!

               Welcome to our Chronic Pain Forum! I'm at a total loss with the condition you are suffering from, but it looks like Laura, has done a wonderful job of posting some helpful information for you. (Excellant job Laura!)

       I'm wondering if you are on any pain meds for this condition?....or maybe you cannot take them because of the stomach problems?

          We wish you the best on you're appointment with the Mayo clinic tomorrow, and I sure hope they can find a solution for you. Please check in with us and let us all know how the appointment went. I'm sure it will take several trips there, since you are a new patient, and I bet they will do quite a bit of testing.

      Hang in there, and again, Welcome! wink  

           SE wink       


Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 9/9/2011 8:44 AM (GMT -6)   
Hi Maria, nice to meet you. I'm glad you found us but sorry you are suffering with chronic pain. I am happy to see that

Laura posted for you as I knew she would be able to help you seeing she has the same illness. I hope your appointment

goes well at the Mayo Clinic. Please keep us posted ok. And hang in there, hopefully help is on the way for you.

Suzane

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 9/9/2011 9:40 AM (GMT -6)   
SE...pain meds for GP are a real 'rock and a hard place' situation. Sometimes the pain is so severe that narcotic meds are necessary to control the pain, but technically they're contraindicated in GP patients because they slow stomach and gut transit time.

Fortunately it's rare for it to cause ongoing pain that bad, but it makes things very hard for the few patients who do have it that bad all the time.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 9/9/2011 9:43 AM (GMT -6)   
 
       Laura, how about a liquid form of pain med? Would that work?
 
  SE
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 9/9/2011 12:16 PM (GMT -6)   
Narcotics slow your gut movements period. So that's why it is tough for these patients.

I hope your doc figures out something for you Maria.

This is an awful illness.

Suzane

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 9/9/2011 10:29 PM (GMT -6)   
Welcome to the chronic pain forum Maria. I'm glad you found us for support but I'm sorry that you have the pain. I wish you good luck on your appointment tomorrow at Mayo Clinic. I'm sure they will be able to help you, as they are one of the best.

Take care. I hope you're having a low pain evening.

hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

S'ami
New Member


Date Joined Sep 2011
Total Posts : 7
   Posted 9/15/2011 10:53 PM (GMT -6)   
How did your appointment go?
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