Sheila1366 Posted July 21, 2012 Report Share Posted July 21, 2012 Hey, my name is Sheila. I am new to the forum and so glad there is support out there on the web.I was diagnosed with dysautonomia in 2008. Also was diagnosed with gastroparesis the same year. But not til 2010 did everything start to become very serious. My motiltiy problems have become much worse. I am down 70 pounds so far( good thing I was overweight when I got real sick). Have had many tests on my digestion system and found I have moderate GP, severe colonic inertia, pelvic floor dysfunction and possible Hirchsprung's disease. And now have this wonderful pain called proctalgia. Because of the low food intake I now have hypoglycemia. I am seeing a new motiltiy dr. now and he is refering me to Dr. Klein to have my autonmics system rechecked. Along with my motiltiy problems my bladder is also losing some of it's function. My heart is out of rythm at times and can beat very slowly. I had a tilt table in 2008 that I failed. I feel awful all the time. Right now on top of my constant stomach pain, my fibromyalgia is in full flare. Nausea is getting much worse also.Just not having alot of fun right now.So looking foreward to making new friends that I can share with and get support.Thanks for adding me to the group,Sheila Quote Link to comment Share on other sites More sharing options...
songcanary Posted July 21, 2012 Report Share Posted July 21, 2012 Hi Sheila and welcome. I remember when I was new and I didn't have much hope. But that all changed after getting such good and helpful suggestions from this group. You will make many friends here and get great support. I have fibro too. I also had terrible nausea until I started doxepin. Take care. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted July 21, 2012 Report Share Posted July 21, 2012 Glad you are a fighter, by your last comment, because so am I!! GI issues can be very difficult, and it sounds as if you probably have malabsorption problems, as well. Are you supplementing your caloric intake in other ways other than food? I will drink Boost on occasion to get more calories and vitamins. There are a lot of supportive people on this site and a wealth of information. We are all your friends, here, because we can all relate to having dysautonomia Welcome to the site. I too, have problems with nausea. I take Zofran on occasion when I'm in the car. Small frequent meals help, as well, along with increased fluid intake. I sometimes take urogesic blue for bladder spasms or bowel spasms. I hope that your Gastro issues will improve. Prayers for GI healing, Sheila... Quote Link to comment Share on other sites More sharing options...
Guest headhunter030 Posted July 21, 2012 Report Share Posted July 21, 2012 As odd as it sounds, I think alot of our bodies (okay I shouldnt speak for others) get used to fighting this and even though we dont get a lick better, our bodies adjust a little. What I am saying I think you will improve soon and (even more-so) I really hope so. Quote Link to comment Share on other sites More sharing options...
mwise Posted July 21, 2012 Report Share Posted July 21, 2012 Welcome to the best forum for support and a wealth of knowledge to help get your symptoms under control. I have gastroparesis too.I was diagnosed by a GI doctor. I am on a gastroparesis diet thanks to a good nutritionist which is a low fat diet. With gastroparesis, it is hard to digest fats. Eating smaller meals low in fat has helped along with taking Domperidone 20mg 4xtimes a day (before meals and at bedtime). I had taken Reglan and Erthromycin without success. I recommend getting the book Calorie Fat & Carbohydrate Counter by The Calorie King helps with understanding the fat content of foods especially when eating out. The website is www.CalorieKing.com. Many of us have similar symptoms, yet different treatments that work for us. It was trial and error to find what has worked for me. Dinet has been a great help. Good luck and prayers sent to you. Quote Link to comment Share on other sites More sharing options...
kjmom Posted July 22, 2012 Report Share Posted July 22, 2012 Hello Sheila! Welcome to the forum! I have had almost constant stomach pain for 7 months now. I can totally relate to all that. (it stinks though having it all the time:()I can also relate to the losing of weight. I lost like 9/10 lbs. For eating, I suggest light foods first, like, crackers/soup, then start taking small steps in eating. The thing I suggest for nausea is zofran. It has saved me at least 5 times! Also sea bands, acupressure cuffs that go in between your two tendons. You can find me at the drug store or whatever. The good thing is people on this forum will support, advise, joke and comfort you all the way. I hope you will find a cure soon! Don't give up! KaylaP.S "My body tells me no, but I won't quit, cause I want more!" (love that song!) Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 22, 2012 Report Share Posted July 22, 2012 Welcome. Quote Link to comment Share on other sites More sharing options...
Sheila1366 Posted July 25, 2012 Author Report Share Posted July 25, 2012 Thanks everyone for the welcome. So happy to have found this group.My diet is mostly liquids. I was able to tolerate a liquid protein but now I am getting sick with the lactose free milk. At this point everything makes me hurt so bad and I am always sick. My new motiltiy dr. has me on remeron. It helps some with the nausea. Zofran , unfortaunately has not helped me in the past. So I depend heavily on liquid phengran. My family dr. has mentioned a feeding tube but I am trying to keep away from them if I can. But If my life depended on it, will use them. Have many friends on them already. Just scares me cause of the infections that seem to be a real issue with tube feedings.Waiting on my new wheelchair to come in. Just so weak. Lack of food and I think my autonomic system just going down hill, I am having the worst time getting around.I will be seeing a new pain specialist soon. My Gi dr. mentioned a celiac blaock in my back to help with the pain. I am up for anything at this point.Just seems that I am getting worse everyday. I will have a few days where I just feel bad then weeks of feeling so bad I feel like I am not gonna make it.Hope that one day there is a cure for motiltiy disorders and autonomic disorders.(((((Thanks again for the support)))))) Quote Link to comment Share on other sites More sharing options...
kjmom Posted July 26, 2012 Report Share Posted July 26, 2012 I'm so sorry you've been feeling worse lately . On TV, a person said, (I like this quote, I use it as motivation) "At our lowest point, we also are most open to the biggest change." I really hope that doctor has answers. Good luck and I hope you feel better! Kayla Quote Link to comment Share on other sites More sharing options...
azmusiclover Posted July 27, 2012 Report Share Posted July 27, 2012 Hi Sheila,I am new to the group too. I am sorry that you are struggling so much with your eating. I can't imagine losing 70 pounds. I imagine that the idea of a feeding tube would be difficult to wrap your head around, but at some point, you have to do what you have to do to get calories in and sustain yourself. I have lots of GI issues going on too. My first go around I lost 30 pounds in 6 weeks. This time I've lost 20 so far, but it's been over 3-4 months. I am trying as hard as I can to keep eating, even through the pain and the diarrhea/nausea. I alternate. For a month it was mostly the "D" and then constipation for several months and now back to the D. You are not alone at all! Keep fighting. I am trying to combat it with probiotics, pepcid and zofran. I also have protonix and hyomax if needed for the D. Nice to "meet" you! Becca Quote Link to comment Share on other sites More sharing options...
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