Gastroparesis

Posted by paarak @paarak, Jul 17, 2011

Does anyone have gastroparesis (low stomach emptying) and what are you doing to manage the problem. I was finally diagnoised with this condition this year after at least 3plus years of unexplained illness. Most of my symtoms were related to pain in the chest; deep back shoulder pain; lightheaded/dizzyness; I always felt like I was having a heart attack. But each time I went to the ER all the heart test came back fine and was told it was just acid reflux. I have been to cardiology; neuralogy; gastrology. I have had heart test; stress test;;thryrod; diabectic test; all kinds of blood test (only showed low vit D) MRI of brain; spinal tap. Finally had stomach emptying test in March – which showed 85% food still in stomach after 3 hours. I have had to switch to a no fat; low fiber diet – pretty much all liquid; soft (babyfood like) foods. If I do experiment and eat something that doesn’t move through – then I end up with the deep shoulder pain; lighthed/dizziness;; numbness in the arms/fingers and over all wekness. In order to overcome this feeling – It seems to work by drinking just water /gator aid for at least a day. I just don’t know if this all started by a nerve damage issue or if it is reverserble. I have done a lot of internet reading and there doesn’t seem to be anything to do except eating habit changes. And no one else seems to associate the pain I have with the stomach – I never seem to have stomach pain – Only fullness; nausea; bloating/gas. I also am not diabetic. Which my understanding is a reason for this condition. If you have this condition – what are your symtoms and how are you managing? Thanks

@fourof5zs

I go to the Mayo Clinic in Jacksonville. I initially went there for surgery… I had 3 there. I think first surgeon was a Dr Smith, but he left and then Dr Bowers did the last two.. gastric bypass to fix a stubborn paraesophageal hiatal hernia. I had complications from that surgery (just my body and not surgeon's fault) and the last surgery in 2015 had to be an open surgery to repair the damage from the complications. It was Dr Smith that had me see one of the gi drs there that prescribed the med for gastroparesis cannot remember his name. It was to rule out if the gastroparesis was causing my pain and weight loss. The problem was where a surgeon in my hometown had placed mesh to fix the hernia. I now see a NP, Lois Hemminger who is under the guidance of Dr Dawn Francis.

I had the feeding tube in what they call the remnant stomach. In gastric bypass the stomach is divided… the other portion where real food goes is called a pouch. It is about the size of an extra large egg. So I can only eat about a cup of food at a time. Because the sphincter does not work correctly all the time the food can stack up into my esophagus. That is one reason I may have to go to a feeding tube again. There are a couple of surgeries that can help.. but things will have to get worse before they are considered.

Zaroga

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Wow! You have gone through so much. I had colon cancer in 2001. I had chemo and radiation at the same time and then had surgery. I had an ileostomy for 3 months and had it reversed. I was diagnosed with radiation enteritis which they think caused the chronic intestinal pseudo-obstruction disorder or they said it could have been caused by my Sjogren's syndrome. I hope that everything goes well for you and you don't have to have any more surgeries. Elaine

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My husband has had gastroparesis for years. He is diabetic but I think gastroparesis affects everyone differently. He has been in different phases of it since he was diagnosed. He uses marijuana to help the nausea and appetite. Before he started using it he was in the hospital many times in a year for uncontrolled vomiting which led to complications with his diabetes. He only uses Reglan if he gets desperate. He does not eat beef such as steak because he can digest it, it stays in his stomach too long. He doesn't have normal bowel movements, goes for days without going, then suffers with trying to go and also diahrea.

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@beanglow

Thanks for your reply. When I went to Mayo they didn't think I needed a feeding tube and just told me to stay on Boost. I used to weigh 135 pounds and now I'm down to 101 pounds and keep losing weight. Who was the doctor you saw at Mayo? The doctor that I'm staying in touch with there really hasn't been helping me. I'm trying to get into a doctor at the University of Michigan who is a specialist in Chronic intestinal pseudo-obstruction CIP. I just don't know how much longer I can continue to live like this. It sounds like being on the feeding tube did help you gain some weight back. Did you have the tube through your nose or in your stomach?

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I go to the Mayo Clinic in Jacksonville. I initially went there for surgery… I had 3 there. I think first surgeon was a Dr Smith, but he left and then Dr Bowers did the last two.. gastric bypass to fix a stubborn paraesophageal hiatal hernia. I had complications from that surgery (just my body and not surgeon's fault) and the last surgery in 2015 had to be an open surgery to repair the damage from the complications. It was Dr Smith that had me see one of the gi drs there that prescribed the med for gastroparesis cannot remember his name. It was to rule out if the gastroparesis was causing my pain and weight loss. The problem was where a surgeon in my hometown had placed mesh to fix the hernia. I now see a NP, Lois Hemminger who is under the guidance of Dr Dawn Francis.

I had the feeding tube in what they call the remnant stomach. In gastric bypass the stomach is divided… the other portion where real food goes is called a pouch. It is about the size of an extra large egg. So I can only eat about a cup of food at a time. Because the sphincter does not work correctly all the time the food can stack up into my esophagus. That is one reason I may have to go to a feeding tube again. There are a couple of surgeries that can help.. but things will have to get worse before they are considered.

Zaroga

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@fourof5zs

@beanglow, I had to be on a feeding tube for a bit over a year. It was a bit hard to get back to eating food. I had to add foods pretty much one at a time. Starting with blenderized foods and then progressing to the soft cooked vegetables and fruit (nothing raw, no skins of seeds) and tender meats. I have learned to stay away from fibrous food. If I eat broccoli I can eat florets (cooked soft), but not the fibrous stems (even if they are cooked soft). I am able to eat a few roasted nuts and a little peanut butter, but they tend to give the gassy stomach, so the amount is low.. good source of nutrients and fat.

Eating is difficult when you have upper and lower digestive issues. I am down to 120lbs. I eat something every 2-3 hours during my day hours. Last visit to Mayo they said if I cannot at least maintain weight I will probably have to go back on the feeding tube. I went off of it in Oct 2015 and they wanted me to stay at 140lbs. I think I managed to do that for about 4 months. I lost 20 lbs, but managed to get it back up to 135 after a few months. I was up to 138lbs January of last year and this January I was down to 117lbs. I got it back up to 120lbs. There has been a lot of stress over the last couple of years and that makes it harder.

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Thanks for your reply. When I went to Mayo they didn't think I needed a feeding tube and just told me to stay on Boost. I used to weigh 135 pounds and now I'm down to 101 pounds and keep losing weight. Who was the doctor you saw at Mayo? The doctor that I'm staying in touch with there really hasn't been helping me. I'm trying to get into a doctor at the University of Michigan who is a specialist in Chronic intestinal pseudo-obstruction CIP. I just don't know how much longer I can continue to live like this. It sounds like being on the feeding tube did help you gain some weight back. Did you have the tube through your nose or in your stomach?

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@beanglow

I drink the vanilla or strawberry. I would like chocolate but can't have it. I don't mind the taste of it but I would prefer to eat regular food. Whenever I try to eat regular food I have gas, bloating and distention. I don't know if my doctor will put me on it since the problem is with my small and large intestines and not with my stomach. Thanks for your support though.

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@beanglow, I had to be on a feeding tube for a bit over a year. It was a bit hard to get back to eating food. I had to add foods pretty much one at a time. Starting with blenderized foods and then progressing to the soft cooked vegetables and fruit (nothing raw, no skins of seeds) and tender meats. I have learned to stay away from fibrous food. If I eat broccoli I can eat florets (cooked soft), but not the fibrous stems (even if they are cooked soft). I am able to eat a few roasted nuts and a little peanut butter, but they tend to give the gassy stomach, so the amount is low.. good source of nutrients and fat.

Eating is difficult when you have upper and lower digestive issues. I am down to 120lbs. I eat something every 2-3 hours during my day hours. Last visit to Mayo they said if I cannot at least maintain weight I will probably have to go back on the feeding tube. I went off of it in Oct 2015 and they wanted me to stay at 140lbs. I think I managed to do that for about 4 months. I lost 20 lbs, but managed to get it back up to 135 after a few months. I was up to 138lbs January of last year and this January I was down to 117lbs. I got it back up to 120lbs. There has been a lot of stress over the last couple of years and that makes it harder.

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Thank you, I’ve never tried anything but chocolate and it had such a weird taste to me. I’ll try the vanilla and strawberry! I’m so sorry you have CIP that causes all of those issues for you. I’m limited on what I can eat with Gastroparesis but at least I can eat some regular food. And it was so hard for me to get used to eliminating so much — I can’t imagine what it’s been like for you!

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I drink the vanilla or strawberry. I would like chocolate but can't have it. I don't mind the taste of it but I would prefer to eat regular food. Whenever I try to eat regular food I have gas, bloating and distention. I don't know if my doctor will put me on it since the problem is with my small and large intestines and not with my stomach. Thanks for your support though.

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@beanglow I hope your appointment goes well on the 19th. Like I said before, I feel like domperidone must be helping me in combination with the very low fiber diet because I’m better than I used to be. It supposedly helps the stomach contract to move food. I hope it will do the same for your CIP. I don’t know what I’d do if I had to live on Boost or any other brand of those nutritional drinks! They gag me — just can’t get them down! Do you have a favorite flavor?

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@beanglow

I'm wondering if you could give me the email address for the pharmacy you get the domperidone from in Canada.

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@pdilly Please disregard my last post. You did give me the address but I missed seeing it for some reason.

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@fourof5zs

@beanglow So many years ago … but it helped. I took it for so many days and then off for so many days. I was only on it for a few months. I have nerve problems so my doctors do not think I would do well with Reglan. I hooe I got the name right in that one. I am exhausted lately and my mind isn't working on all cylinders. I had to put my mom in a nursing home and it has been very emotional time.

On the Domperidone… My doctor at Mayo in Jacksonville wrote a prescription and told me to take it to a compounding pharmacy. That was in 2013, so the price has gone from my mind. You might ask your doctor about it or if you have a pharmacy that does compounding ask there about it.

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Thanks for the information. I'm sorry about your Mom. I had a hard time when my brother put my Mom in a nursing home. She was not happy about it and kept asking me to take her out. I was recovering from rectal cancer so I couldn't take care of her. It was hard on her and on me so I can relate. May God bless you.

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@pdilly

@beanglow Sorry for delay. I got Domperidone thru http://www.canadadrugsonline.com. I’m so surprised that someone else said they got it in Albany GA. My doc said it is not available in the USA because FDA won’t approve it.
When he handed me the prescription he handed me a list of several foreign pharmacies to choose from and I chose Canadadrugsonline.
Your doc may be reluctant to prescribe it because it’s not FDA approved. I call it my illegal drug!

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Somehow I missed your post about the address in Canada. Thank you for the information. I will be talking with my doctor from Mayo on the 19th. I hope he will prescribe for me.

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@pdilly

By the way the domperidone cost me $80 for 200 10mg tablets. I’m supposed to take them 4 times a day but I only take it twice a day — before breakfast and at bedtime.
So that’s a 100 day supply for me.

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I'm wondering if you could give me the email address for the pharmacy you get the domperidone from in Canada.

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@beanglow

How did you do on the Propulsid? The only thing I can tolerate for nutrition is Boost and I still have symptoms.

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@beanglow So many years ago … but it helped. I took it for so many days and then off for so many days. I was only on it for a few months. I have nerve problems so my doctors do not think I would do well with Reglan. I hooe I got the name right in that one. I am exhausted lately and my mind isn't working on all cylinders. I had to put my mom in a nursing home and it has been very emotional time.

On the Domperidone… My doctor at Mayo in Jacksonville wrote a prescription and told me to take it to a compounding pharmacy. That was in 2013, so the price has gone from my mind. You might ask your doctor about it or if you have a pharmacy that does compounding ask there about it.

Liked by pdilly

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@lelia

Glad you will still be in touch with him.

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I'm getting discouraged because nothing has worked so far. I had to miss another family event today. I don't know if there is much that can be done except for staying on a liquid diet.

Liked by pdilly

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It’s used worldwide (except in the USA) and it’s over the counter in many countries.

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