Gastroparesis

Posts on this subject seem a few years old.  My son's almost 12 and has been diagnosed with "severe delay in gastric emptying" aka Gastroparesis.  We've been fighting with the GI clinic to do anything other than just having him do more cleanouts....every appt or phone call or ER visit ended with "go home, do another cleanout and follow up with your GI dr."  We've followed up and followed up and have FINALLY found out WHAT is causing my son's pain, vomiting and partial blockages. <br><br>I'm battling the hospital and the GI dept to try to actually DO something.  I'm having to research online and see there's a list of meds, including Reglan.  He's been on arithromycin for a few weeks now and it's NOT working.  He's currently in the hospital with his first NJ tube, down past the stomach so even though his body is getting nutrition, his stomach is empty and he feels like he's starving to death.  They were going to send us home with the tube, told me to figure out how to come up with a pump & the formula & oh, it's not covered by insurance.... When I asked what the PLAN was, why after this he won't go immediately back to the pain & nausea, etc and was just told to "follow up with your GI dr."  I asked HOW LONG on the tube only with no food, and guess what I was told...."follow up with your GI dr."  <br><br>I said I'm not leaving this hospital without a plan and got the patient advocate's office involved.  I'm hoping it will help in our negotiations for someone to look at this kid and offer a different solution.<br><br>Has anyone else been working with Gastroparesis lately?  Anything work?  My son's already been on miralax 3x/week, amitiza (increased dose for last 2 weeks) and arithromycin.  Before this his guts were FINE.  He had symptoms of this 1.5 years ago along with flare-up of mrsa in his lungs and he was treated with a golytely cleanout & vancomycin IV for the lung infections.  I've read that infections can be a cause of it, maybe the IV meds could help this time too?  Drs don't seem to think that's an option.  <br><br>ANY COMMENTS would be appreciated.  Sorry for the long post, it's been a long 2 months of getting the runaround at the local children's hospital/cf clinic.  I've been asking the CF drs for input or ideas and they just say "that's the GI dept".  <br>
 
Posts on this subject seem a few years old. My son's almost 12 and has been diagnosed with "severe delay in gastric emptying" aka Gastroparesis. We've been fighting with the GI clinic to do anything other than just having him do more cleanouts....every appt or phone call or ER visit ended with "go home, do another cleanout and follow up with your GI dr." We've followed up and followed up and have FINALLY found out WHAT is causing my son's pain, vomiting and partial blockages. <br><br>I'm battling the hospital and the GI dept to try to actually DO something. I'm having to research online and see there's a list of meds, including Reglan. He's been on arithromycin for a few weeks now and it's NOT working. He's currently in the hospital with his first NJ tube, down past the stomach so even though his body is getting nutrition, his stomach is empty and he feels like he's starving to death. They were going to send us home with the tube, told me to figure out how to come up with a pump & the formula & oh, it's not covered by insurance.... When I asked what the PLAN was, why after this he won't go immediately back to the pain & nausea, etc and was just told to "follow up with your GI dr." I asked HOW LONG on the tube only with no food, and guess what I was told...."follow up with your GI dr." <br><br>I said I'm not leaving this hospital without a plan and got the patient advocate's office involved. I'm hoping it will help in our negotiations for someone to look at this kid and offer a different solution.<br><br>Has anyone else been working with Gastroparesis lately? Anything work? My son's already been on miralax 3x/week, amitiza (increased dose for last 2 weeks) and arithromycin. Before this his guts were FINE. He had symptoms of this 1.5 years ago along with flare-up of mrsa in his lungs and he was treated with a golytely cleanout & vancomycin IV for the lung infections. I've read that infections can be a cause of it, maybe the IV meds could help this time too? Drs don't seem to think that's an option. <br><br>ANY COMMENTS would be appreciated. Sorry for the long post, it's been a long 2 months of getting the runaround at the local children's hospital/cf clinic. I've been asking the CF drs for input or ideas and they just say "that's the GI dept". <br>
 
Posts on this subject seem a few years old. My son's almost 12 and has been diagnosed with "severe delay in gastric emptying" aka Gastroparesis. We've been fighting with the GI clinic to do anything other than just having him do more cleanouts....every appt or phone call or ER visit ended with "go home, do another cleanout and follow up with your GI dr." We've followed up and followed up and have FINALLY found out WHAT is causing my son's pain, vomiting and partial blockages. <br><br>I'm battling the hospital and the GI dept to try to actually DO something. I'm having to research online and see there's a list of meds, including Reglan. He's been on arithromycin for a few weeks now and it's NOT working. He's currently in the hospital with his first NJ tube, down past the stomach so even though his body is getting nutrition, his stomach is empty and he feels like he's starving to death. They were going to send us home with the tube, told me to figure out how to come up with a pump & the formula & oh, it's not covered by insurance.... When I asked what the PLAN was, why after this he won't go immediately back to the pain & nausea, etc and was just told to "follow up with your GI dr." I asked HOW LONG on the tube only with no food, and guess what I was told...."follow up with your GI dr." <br><br>I said I'm not leaving this hospital without a plan and got the patient advocate's office involved. I'm hoping it will help in our negotiations for someone to look at this kid and offer a different solution.<br><br>Has anyone else been working with Gastroparesis lately? Anything work? My son's already been on miralax 3x/week, amitiza (increased dose for last 2 weeks) and arithromycin. Before this his guts were FINE. He had symptoms of this 1.5 years ago along with flare-up of mrsa in his lungs and he was treated with a golytely cleanout & vancomycin IV for the lung infections. I've read that infections can be a cause of it, maybe the IV meds could help this time too? Drs don't seem to think that's an option. <br><br>ANY COMMENTS would be appreciated. Sorry for the long post, it's been a long 2 months of getting the runaround at the local children's hospital/cf clinic. I've been asking the CF drs for input or ideas and they just say "that's the GI dept". <br>
 

Incomudrox

New member
Well, without trying to sound like a complete jerk. Have you follow up with the GI doctor with the questions you have AFTER you "FINALLY found out WHAT is causing my son's pain,"? So I'm confused as to whether or not you have tried Metocloprimide or not. I had the same thing "gastroparesis" and was put on Metocloprimide by my CF docs (not GI docs) and it seemed to do the trick. Other than my G-Tube placement, I have never seen a GI doc besides the diagnosis (inpatient) of the gastroparesis. Also i'm not sure how arithromycin is supposed to help his GI issues....... If he has been taking ABX as of late, it is possible that a contributing factor (READ: not the whole cause) to his blockages and pain are that the ABX have killed the natural bacteria the reside in the large intestines and simply doesn't have enough processing power down there. I would suggest eating some yogurt or getting yogurt which high bifidus regularis content, such as Kiefer (not sure if that's the correct spelling). If he has having complications to the level you are saying, 3x/weekly Mirixlax excuse my language ain't gonna do shit (no pun intended). When I had Gastroparesis I was taking 17/g daily for a while. These days (4-5 years later) I have no GI issues relating to Gastroparesis or blockages.
 

Incomudrox

New member
Well, without trying to sound like a complete jerk. Have you follow up with the GI doctor with the questions you have AFTER you "FINALLY found out WHAT is causing my son's pain,"? So I'm confused as to whether or not you have tried Metocloprimide or not. I had the same thing "gastroparesis" and was put on Metocloprimide by my CF docs (not GI docs) and it seemed to do the trick. Other than my G-Tube placement, I have never seen a GI doc besides the diagnosis (inpatient) of the gastroparesis. Also i'm not sure how arithromycin is supposed to help his GI issues....... If he has been taking ABX as of late, it is possible that a contributing factor (READ: not the whole cause) to his blockages and pain are that the ABX have killed the natural bacteria the reside in the large intestines and simply doesn't have enough processing power down there. I would suggest eating some yogurt or getting yogurt which high bifidus regularis content, such as Kiefer (not sure if that's the correct spelling). If he has having complications to the level you are saying, 3x/weekly Mirixlax excuse my language ain't gonna do shit (no pun intended). When I had Gastroparesis I was taking 17/g daily for a while. These days (4-5 years later) I have no GI issues relating to Gastroparesis or blockages.
 

Incomudrox

New member
Well, without trying to sound like a complete jerk. Have you follow up with the GI doctor with the questions you have AFTER you "FINALLY found out WHAT is causing my son's pain,"? So I'm confused as to whether or not you have tried Metocloprimide or not. I had the same thing "gastroparesis" and was put on Metocloprimide by my CF docs (not GI docs) and it seemed to do the trick. Other than my G-Tube placement, I have never seen a GI doc besides the diagnosis (inpatient) of the gastroparesis. Also i'm not sure how arithromycin is supposed to help his GI issues....... If he has been taking ABX as of late, it is possible that a contributing factor (READ: not the whole cause) to his blockages and pain are that the ABX have killed the natural bacteria the reside in the large intestines and simply doesn't have enough processing power down there. I would suggest eating some yogurt or getting yogurt which high bifidus regularis content, such as Kiefer (not sure if that's the correct spelling). If he has having complications to the level you are saying, 3x/weekly Mirixlax excuse my language ain't gonna do shit (no pun intended). When I had Gastroparesis I was taking 17/g daily for a while. These days (4-5 years later) I have no GI issues relating to Gastroparesis or blockages.
 
Incomudrox, THANKS for the reply! My CONTINUAL question is WHAT are we doing to FIX this now that we know what is the problem??? Arithromycin seems to be the standard med here at Childrens Mercy (KC) and I'm pretty convinced it's NOT working. Also, after internet research I've found that some of the side effects of the drug are nausea, abdominal pain and vomiting, kind of what we're dealing with ANYWAY!!

My main questions for those out there is Has anyone survived this and gotten past it, YAY Incomudrox!! and WHAT meds/treatments did you guys do? Also thx Incomudrox!
Everyone, please keep leaving comments with what worked for you.
Christine
 
Incomudrox, THANKS for the reply! My CONTINUAL question is WHAT are we doing to FIX this now that we know what is the problem??? Arithromycin seems to be the standard med here at Childrens Mercy (KC) and I'm pretty convinced it's NOT working. Also, after internet research I've found that some of the side effects of the drug are nausea, abdominal pain and vomiting, kind of what we're dealing with ANYWAY!!

My main questions for those out there is Has anyone survived this and gotten past it, YAY Incomudrox!! and WHAT meds/treatments did you guys do? Also thx Incomudrox!
Everyone, please keep leaving comments with what worked for you.
Christine
 
Incomudrox, THANKS for the reply! My CONTINUAL question is WHAT are we doing to FIX this now that we know what is the problem??? Arithromycin seems to be the standard med here at Childrens Mercy (KC) and I'm pretty convinced it's NOT working. Also, after internet research I've found that some of the side effects of the drug are nausea, abdominal pain and vomiting, kind of what we're dealing with ANYWAY!!
<br />
<br />My main questions for those out there is Has anyone survived this and gotten past it, YAY Incomudrox!! and WHAT meds/treatments did you guys do? Also thx Incomudrox!
<br />Everyone, please keep leaving comments with what worked for you.
<br />Christine
 

hockeykid

New member
I suffer from Gastroparesis. I currently have a gastrostomy tube and a jejunostomy tube. The gastrostomy tube is used for venting my stomach to help with nausea and vomitting. The tube feeds go into my jejunostomy tube to bypass my stomach.
I use Miralax, Colace, and Amitiza to keep my bowels regular. For nausea, I use Zofran or Phenergan. As for pro motility agents, you can use Reglan or Domperidone. Domperidone can be puchased from a compound pharmacy or from Canada using one of their pharmacies with a prescription. Regan can be filled at any US pharmacy.
If you look online, you will find diets that work best for Gastroparesis. I avoid fruits, veggies, and meats unless they are pureed or ground.
You can go to www.oley.org to find enteral formula that people are willing to donate. You would just have to cover the shipping.
I think E-mycin 4 times daily works okay for Gastroparesis. Azithromycin did nothing for me.
 

hockeykid

New member
I suffer from Gastroparesis. I currently have a gastrostomy tube and a jejunostomy tube. The gastrostomy tube is used for venting my stomach to help with nausea and vomitting. The tube feeds go into my jejunostomy tube to bypass my stomach.
I use Miralax, Colace, and Amitiza to keep my bowels regular. For nausea, I use Zofran or Phenergan. As for pro motility agents, you can use Reglan or Domperidone. Domperidone can be puchased from a compound pharmacy or from Canada using one of their pharmacies with a prescription. Regan can be filled at any US pharmacy.
If you look online, you will find diets that work best for Gastroparesis. I avoid fruits, veggies, and meats unless they are pureed or ground.
You can go to www.oley.org to find enteral formula that people are willing to donate. You would just have to cover the shipping.
I think E-mycin 4 times daily works okay for Gastroparesis. Azithromycin did nothing for me.
 

hockeykid

New member
I suffer from Gastroparesis. I currently have a gastrostomy tube and a jejunostomy tube. The gastrostomy tube is used for venting my stomach to help with nausea and vomitting. The tube feeds go into my jejunostomy tube to bypass my stomach.
<br />I use Miralax, Colace, and Amitiza to keep my bowels regular. For nausea, I use Zofran or Phenergan. As for pro motility agents, you can use Reglan or Domperidone. Domperidone can be puchased from a compound pharmacy or from Canada using one of their pharmacies with a prescription. Regan can be filled at any US pharmacy.
<br />If you look online, you will find diets that work best for Gastroparesis. I avoid fruits, veggies, and meats unless they are pureed or ground.
<br />You can go to www.oley.org to find enteral formula that people are willing to donate. You would just have to cover the shipping.
<br />I think E-mycin 4 times daily works okay for Gastroparesis. Azithromycin did nothing for me.
<br />
 

Kate32

New member
I've suffered with gastroparesis in the past, and I still have symptoms but they are far more manageable. I take Miralax, 17g 1-2x a day. My GI doc also recommended peppermint oil supplements and Align. Surprisingly, these seem to help. When my condition was more severe, the only thing that helped was Domperidone, which I was able to get through a compound pharmacy. My doc didn't feel that Reglan was safe and wouldn't recommend it. Domperidone is very similar, but according to my doc, the side effects (if you have any) are not typically as severe and will go away when you discontinue the med, but they may not with Reglan.

Good luck... It really is a difficult condition to manage.
 

Kate32

New member
I've suffered with gastroparesis in the past, and I still have symptoms but they are far more manageable. I take Miralax, 17g 1-2x a day. My GI doc also recommended peppermint oil supplements and Align. Surprisingly, these seem to help. When my condition was more severe, the only thing that helped was Domperidone, which I was able to get through a compound pharmacy. My doc didn't feel that Reglan was safe and wouldn't recommend it. Domperidone is very similar, but according to my doc, the side effects (if you have any) are not typically as severe and will go away when you discontinue the med, but they may not with Reglan.

Good luck... It really is a difficult condition to manage.
 

Kate32

New member
I've suffered with gastroparesis in the past, and I still have symptoms but they are far more manageable. I take Miralax, 17g 1-2x a day. My GI doc also recommended peppermint oil supplements and Align. Surprisingly, these seem to help. When my condition was more severe, the only thing that helped was Domperidone, which I was able to get through a compound pharmacy. My doc didn't feel that Reglan was safe and wouldn't recommend it. Domperidone is very similar, but according to my doc, the side effects (if you have any) are not typically as severe and will go away when you discontinue the med, but they may not with Reglan.
<br />
<br />Good luck... It really is a difficult condition to manage.
 
W

windex125

Guest
I was diagnosed with gastroparesis last Dec I am 56 female I am PS but have always had issues with BM's or none at all. I've been on Reglan since last Dec. I drink a 5oz glass of prune juice every moring, and eat a yougert every morning as well. I use Miralax as needed which is usually a few times a week. when I have the pain which is left side right under my breast, I know I have a blockage and this happens sometimes even if I've had a BM that day. I do see a special gastro doctor for this and last week when I saw him we discussed changing me to the Domperidone and I wld have to get it via mail from Canada. Which I am fine with as long as it works that is the main issue. But I love fruits and vegetables and I eat them still. When I read up on the reglan I was very worried abt using it, but what is worse at this point? Sorry to repeat what others have said but get to a gastro doctor, esp. one that is familar with CF and I think one of those drugs will be very helpful. Good luck I am sure you feel so fustrated at this point. I hope it all works out. Pat-56/CF
 
W

windex125

Guest
I was diagnosed with gastroparesis last Dec I am 56 female I am PS but have always had issues with BM's or none at all. I've been on Reglan since last Dec. I drink a 5oz glass of prune juice every moring, and eat a yougert every morning as well. I use Miralax as needed which is usually a few times a week. when I have the pain which is left side right under my breast, I know I have a blockage and this happens sometimes even if I've had a BM that day. I do see a special gastro doctor for this and last week when I saw him we discussed changing me to the Domperidone and I wld have to get it via mail from Canada. Which I am fine with as long as it works that is the main issue. But I love fruits and vegetables and I eat them still. When I read up on the reglan I was very worried abt using it, but what is worse at this point? Sorry to repeat what others have said but get to a gastro doctor, esp. one that is familar with CF and I think one of those drugs will be very helpful. Good luck I am sure you feel so fustrated at this point. I hope it all works out. Pat-56/CF
 
W

windex125

Guest
I was diagnosed with gastroparesis last Dec I am 56 female I am PS but have always had issues with BM's or none at all. I've been on Reglan since last Dec. I drink a 5oz glass of prune juice every moring, and eat a yougert every morning as well. I use Miralax as needed which is usually a few times a week. when I have the pain which is left side right under my breast, I know I have a blockage and this happens sometimes even if I've had a BM that day. I do see a special gastro doctor for this and last week when I saw him we discussed changing me to the Domperidone and I wld have to get it via mail from Canada. Which I am fine with as long as it works that is the main issue. But I love fruits and vegetables and I eat them still. When I read up on the reglan I was very worried abt using it, but what is worse at this point? Sorry to repeat what others have said but get to a gastro doctor, esp. one that is familar with CF and I think one of those drugs will be very helpful. Good luck I am sure you feel so fustrated at this point. I hope it all works out. Pat-56/CF
 

Beccamom

New member
I realize that with any medication choise individuals must decide with their medical team risks versus benefits; however, my daughter took Reglan for over 4 years for gastroparesis and ended up with a facial tick (tardive dyskensia). You shoul read the FDA press release regarding Reglan, so you can make an informed decision for your child. This side affect was not known about when my daughter took Reglan. Tardive Dyskinesia is now the reason for a black box label on Reglan.
http://www.fda.gov/newsevents/newsroom/pressannouncements/ucm149533.htm

My daughter did try Eurythromycin (sp?), which is from the same family as Zythromycin. Her gastroparethesis seems to improve with better mucus clearance and gets worst the more mucus she has in her system which is also associated with a decrease in PFTs. Overall getting more mucus out helps her lungs and digestive system.
 

Beccamom

New member
I realize that with any medication choise individuals must decide with their medical team risks versus benefits; however, my daughter took Reglan for over 4 years for gastroparesis and ended up with a facial tick (tardive dyskensia). You shoul read the FDA press release regarding Reglan, so you can make an informed decision for your child. This side affect was not known about when my daughter took Reglan. Tardive Dyskinesia is now the reason for a black box label on Reglan.
http://www.fda.gov/newsevents/newsroom/pressannouncements/ucm149533.htm

My daughter did try Eurythromycin (sp?), which is from the same family as Zythromycin. Her gastroparethesis seems to improve with better mucus clearance and gets worst the more mucus she has in her system which is also associated with a decrease in PFTs. Overall getting more mucus out helps her lungs and digestive system.
 
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