CaitlinRose Posted February 17, 2005 Report Share Posted February 17, 2005 Hi! I was just wondering if anyone else has delayed gastric or intestinal emptying. The same virus that gave me dysautonomia also gave me gastroparesis. It has progressed to no gastric motility and poor intestinal motility. I started off on NG tube feeds when I first got sick and now have a G/J tube. I get jejunal feeds and have a vent in my stomach. I was just wondering if anyone else has ever had experience with tube feedings because of their dysautonomia. Thanks for the input! God bless,Caitlin Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted February 17, 2005 Report Share Posted February 17, 2005 Caitlin, I do know of some people with this problem, on a list from my area. It is a rare one. I wish I xcould help. But didn't want you to feel ignored. This is a tough way to live. My problem was delayed emptying from my gallbladder, had that sucker removed, it helped alot. Take care. Blessings Miriam Quote Link to comment Share on other sites More sharing options...
Brwneyedchica Posted February 17, 2005 Report Share Posted February 17, 2005 Prior to my being diagnosed with POTS I went through a large amount of testing. If I remember correctly, after having an upper endoscopy completed, I was told that I had delayed gastric emptying. I was also told that POTS was caused by a virus in my body. I've suffered from nausea for years, and to this day that is my biggest complaint. I'm currently seeing a Gastroenterologist, who has yet to help find a treatment for this nausea. I plan to make an appt to see a POTS specialist in my area to possibly follow up on this issue. After eating, my stomach feels so heavy, like I'm carrying around rocks, and I always go straight to the couch and lay down for awhile until I feel better. I try and eat small meals, and I eat more frequently. Does this sound like what you are going through? Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted February 17, 2005 Report Share Posted February 17, 2005 Actually this was when I had my gallbladder. The pain after eating may be because either you are eating carbs.(they pool blood in your stomach) or some people dairy. I eat 6x a day small meals. This has helped alot. My doc says to eat only 100gms or 200-400 cal day. This has helped soooo much. Where do you live? you can e-mail me miriam15221@yahoo.com. MiriamP.S. what I had was a CCK-HIDA my gastroenterologist finally got it. Quote Link to comment Share on other sites More sharing options...
StaceyYount Posted February 18, 2005 Report Share Posted February 18, 2005 Hi Caitlin,I was hit with POTS in 1995, post viral like you, after a bout of bronchitis followed by a virus. I was fine eating until 1996, then I started not being able to eat. I went from 136 lbs to 84 lbs. They did not find my small bowell dysmotility or gastroporesis until I was down to the 84 lbs. I placed on a picc line for TPN (total parietal nutrition). And I went back to 114 when they stopped the picc line because it got infected. Anyway slowly I was able to eat eonough to maintain and now all though I get a lot of nausea I got better enough to be able to eat enough to maintain. So there is hope that you will get beter with this. I am still homebound and mostly bedbound because of the POTS but the eating did get better. It is a very long story how all that happened but I guess I wanted you to know you were not alone.Stacey :-) Quote Link to comment Share on other sites More sharing options...
funnyfrog Posted February 21, 2005 Report Share Posted February 21, 2005 Hi Caitlin - I was diagnosed with POTS in May,2002 and I had a huge problem with delayed gastic emptying and motility - I was on TPN with a PICC line and went from 115 lbs to 91 lbs within 7 weeks - To make a long story short, I was sent up to Temple University Medical Center in Philadelphia Pa. to a Dr. Robert Fisher(I think that was his name, with this POTS brain fog, its hard sometimes to remember names exactly correct) and I had Botox injected through an endoscope into my pyloris and this loosens your stomach muscles enough to let the food go through and I went from only keeping 20% of food in to normal digestion - This was an experimental procedure at the time, I am not sure if it has been approved yet all over the country for use by now, but it helped me. I still didn't have much of an appetite though even after this was done, so I was given a drug for a while called Periactin and that really helped to stimulate my appetite and get me eating again. Hope this info helps you and I hope you feel better - My POTS occured because of a virus and I still have it with lots of side effects, but keep your chin up, things will get better - Everything happens for a reason, so just hang in there. Have a good night. Beth in New Jersey Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted February 21, 2005 Report Share Posted February 21, 2005 Hi Caitlin, I just wanted to send you good wishes and my support.I have only known people who needed feeding tubes, I haven't needed one myself.best regards, tearose Quote Link to comment Share on other sites More sharing options...
JacobyD Posted February 22, 2005 Report Share Posted February 22, 2005 Hi Caitlin.I have been on and off a G/J tube for almost 4 years now. Things got real bad at one point and I was on a TPN line for a month, but my motility seems to have returned and I am only using a G tube now. My biggest problem is getting enough calories without taking in too much sugar. I also have trouble swallowing (though that is returning as well), which is the main reason I use the tube still.Overall I would say things have improved greatly for me over time. I hope things get better for you too. Best wishes,Dan Quote Link to comment Share on other sites More sharing options...
morgan617 Posted February 22, 2005 Report Share Posted February 22, 2005 Hey Dan. Sorry I haven't written. Way under the weather anymore. I am getting my esophagus dilated every 3 months now on a schedule. It doesn't help the motility, but at least I don't constantly feel like I'm going to choke to death on the smallest particle of food or even fluids. I am managing to maintain a weight so they won't do a feeding tube. But basically, it's the same as you, sugars and carbs are the only reason. The drinks make me so sick they are so sweet. My doctor told me that if he put a j tube in, it would actually cause more problems with my esophagus, the strictures would get worse with lack of use. It's hard to know. I just do what I'm told anymore. Hope you are doing okay, took a glance at your journal. We're twins I think morgan Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted March 23, 2005 Report Share Posted March 23, 2005 Hi! I am learning so much throught this site. I have been currently diagnosed with POTS and Gastroparesis has something to do with Autonomic Neuropathy I don't know if that's the same word for dysautonomia. Anyways I'm sorry to hear your having such a hard time. I was reading on the boards and it sounds like others might be suffering from GP but just don't have mot been diagnosed. I have to eat small meals but experience nausea most of the time. I have a hard time taking the nausea meds because they make me extremely exhaused and I have 3 little ones to chase after.I find alot of support through (www.gastroparesis@yahoogroups.com) Dayna Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.