Racer Posted July 29, 2013 Report Share Posted July 29, 2013 It seems that I have hit a point of not getting sufficient nutrition to maintain my weight. I was underweight to begin with before I started rapidly loosing weight this month. I am taking zofran and it works okay enough to force down 2-3 really small meals. I tried tigan, but it didnt work good enough for me. I keep being told to eat a bunch of really small meals threwout the day, but the problem is that the zofran does not last long enough, or good enough, for me to do that. I am at the point that the smell of food is making me nauseated thinking about trying to eat.They scheduled a gastric empty test that is in a couple weeks. I am really scared that if I dont figure things out I might need a feeding tube or something like that. Not sure how I am going to make it four week till I next talk to the doctor about test results. What do I do if I think I hit a critical point of malnutrition? Is there specific type of help I should be looking for? Quote Link to comment Share on other sites More sharing options...
corina Posted July 29, 2013 Report Share Posted July 29, 2013 Would it be possible to tlk this over with your doctor? I think he knows best. He might be able to speed up the testing for you! Over 10 years ago I lost lots of weight due to a broken tailbone. I decided not to worry until my doc would. I weighed 48 kilo's in the end but was still okay weight wise (1.67 meters). Quote Link to comment Share on other sites More sharing options...
Freaked Posted July 29, 2013 Report Share Posted July 29, 2013 I feel for you. I was at a point where I couldn't keep any food and barely any water down for days, and hospitals didn't care half as much as you'd think. If I was lucky I got a saline drip and some powerful anti-emetics. Sometimes they were like 'just drink water and eat' and it was like 'you don't seem to understand my problem...' Food was just sitting in my stomach and then hours later it'd come back up.Went to my doc and I've been on strong proton pump inhibitors (omeprazole/esomeprazole) to stop acid production. They help but I seem to be becoming immune to them. Benzodiazepines (xanax/valium) help, but not all the time and I need to be on them constantly. I had stomach probs on and off before my POTS symps, but it's made them ten times worse.Is the drug you're on an anti-vomiting or a proton pump inhibitor? Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 29, 2013 Report Share Posted July 29, 2013 Hi Racer,What about a protein shake? Or does drinking affect you the same way as eating? Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted July 29, 2013 Report Share Posted July 29, 2013 I was thinking like Looneymom! How about some Ensure? Quote Link to comment Share on other sites More sharing options...
Racer Posted July 30, 2013 Author Report Share Posted July 30, 2013 Would it be possible to tlk this over with your doctor? I think he knows best. He might be able to speed up the testing for you! Over 10 years ago I lost lots of weight due to a broken tailbone. I decided not to worry until my doc would. I weighed 48 kilo's in the end but was still okay weight wise (1.67 meters).I have talked it over with two different doctors twice. They were worried, so that is what really got me worried! They keep saying they have everything scheduled for as soon as they can, that I just need to wait my turn like everyone else. One roadblock I hit is that there is a nationwide shortage of kinevac, the drug used to test the gallbladder. I am on a "list" and was told to expect a two month wait for the drug to become available. Until then, I have the understanding that since they cant rule out my gallbladder as the cause, they cant be sure about the gastic empty test.Is the drug you're on an anti-vomiting or a proton pump inhibitor?I am on both, zofran is the "powerful" antiemetic (anti-nausia/vomiting), and prilosec is the proton pump inhibitor. I have also tried tigan, another antiemetic.looneymom, HaniceI am okay with liquids and shakes. Icecream is maybe 50% of my diet currently lol. I have always had a high metabolism, have always eaten tons of food, high card diet and have always been borderline underweight.One of the problems I seem to be having is trying to get down enough solids, since to much liquids seem to run threw me ultra fast. It seems to be a fine line between super diarrhea or bad blockage with pain (sorry for the TMI/poop talk!!!).Thanks everyone for the replies Quote Link to comment Share on other sites More sharing options...
corina Posted July 30, 2013 Report Share Posted July 30, 2013 Sorry you have to wait that long! What helps me stay calm is trust my doctor. When I'm in serious trouble he has me in hospital in no time, when I'm in less trouble I have to wait which can be really annoying but knowing that it's not life threathening helps me. Quote Link to comment Share on other sites More sharing options...
plaxico6 Posted July 30, 2013 Report Share Posted July 30, 2013 Racer, I wanted to give you some advice from someone who's been down this road. I had several gastric emptying studies several years ago that were considered normal, but I was nauseated constantly and only able to keep a small amount of food down. They tried a nasal feeding tube (as a trial prior to placing a g-tube(which is in your stomach)). I couldn't tolerate the tube feeding and was actually vomiting the tube feeding. They finally did a motility study through my small intestine which showed it only functioning at a fraction of normal. The decision was made to place a j-tube (which is in your jejunum-small intestine) in hopes I could tolerate tube feedings and receive nutrition. This has worked well for me for several years. I'd ask for a motility study through your entire GI tract so your physician can assess how probable a g tube would work for you before they place it permanently. I hope this is helpful to you. God bless... Quote Link to comment Share on other sites More sharing options...
Racer Posted August 3, 2013 Author Report Share Posted August 3, 2013 I had a really disappointing doctors visit. This week I had a gallbladder ultrasound, 24hr EEG (raw scalp!!!), and MRI. GP said there is nothing more they can do currently , that I just have to wait for the nuro and gastro to get test results and make decisions. So the followups are scheduled for a month from now. Absolutely no help or advice other then to wait and ration myself zofran as needed.I have been to the emergency room once, and they just gave me some IV fluids for dehydration and sent me home.How do I know when it is time to go to the hospital? How does a person know when they have become malnourished to the point of needing emergency help? Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 3, 2013 Report Share Posted August 3, 2013 I don't know if zofran is also an antihistamine. If not, maybe you can talk to the docs about trying phenergan or hydroxyzine. Both are antihistimines that also have anti-emitic/anti nausea capabilities. Hope you feel better soon. Also, if you have migraine, you may want to read up on abdominal migraine and see if it fits what you experience. Quote Link to comment Share on other sites More sharing options...
Racer Posted August 5, 2013 Author Report Share Posted August 5, 2013 I don't know if zofran is also an antihistamine. If not, maybe you can talk to the docs about trying phenergan or hydroxyzine. Both are antihistimines that also have anti-emitic/anti nausea capabilities. Hope you feel better soon. Also, if you have migraine, you may want to read up on abdominal migraine and see if it fits what you experience.Thanks, I will look into that! The anti-seizure meds I have been on prevent my migraines (I am on the higher seizure dosages), so it is my assumption that they would prevent a abdominal migraine?I am really thinking it is a problem like gastroparesis or a problem with my digestive system not moving food along fast enough. I know things are not flowing correct, since I keep getting really bloated painful crampy lower abdominal. Quote Link to comment Share on other sites More sharing options...
Racer Posted August 5, 2013 Author Report Share Posted August 5, 2013 Racer,I wanted to give you some advice from someone who's been down this road. I had several gastric emptying studies several years ago that were considered normal, but I was nauseated constantly and only able to keep a small amount of food down. They tried a nasal feeding tube (as a trial prior to placing a g-tube(which is in your stomach)). I couldn't tolerate the tube feeding and was actually vomiting the tube feeding. They finally did a motility study through my small intestine which showed it only functioning at a fraction of normal. The decision was made to place a j-tube (which is in your jejunum-small intestine) in hopes I could tolerate tube feedings and receive nutrition. This has worked well for me for several years. I'd ask for a motility study through your entire GI tract so your physician can assess how probable a g tube would work for you before they place it permanently. I hope this is helpful to you. God bless...I was thinking they might suggest some sort of feeding tube, but they are unwilling to give anymore help until all test results are back. I dont want a feeding tube, but I am at the point I would really try just about anything to get relief. I had really low body fat to begin with, and now with no fat left, I am simply burning threw muscle mass. Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 5, 2013 Report Share Posted August 5, 2013 In theory an anti seizure med would help if it's abdominal migraine. I'm on depakote (high dose) which is the drug of choice for treating abdominal migraine which is how we figured out that all my gi issues were actually ab migraine because it started to control my symptoms. Like regular migraine, I still have breakthrough ab migraine but at least I am not spending days at a time on my bathroom floor anymore. Maybe you ask the gi if you can trial some of the other anti-emitics to see if one works better than the other for you. I also just remembered...when I was younger and having motility problems, they had me on urecholine (sp?) and later on carrafate. I had issues with the sphincters at the top and bottom of my stomach open and/or closing when they were supposed to and I also had slow small intestine motility. They also had me on propulsid which I loved but at one point took it off the market and I don't know if it's back on the market for human use....I know it still out there for veterinary use. Quote Link to comment Share on other sites More sharing options...
Lenna Posted August 5, 2013 Report Share Posted August 5, 2013 Ask your doctor if you can try domperidone. If you're in the U.S., you'll need to get it though a compounding pharmacy. This is the only thing that has consistently controlled my son's nausea.BTW, you can get it without a prescription from overseas (it's called motilium) but it doesn't work nearly as well for my son as the compounded variety. Quote Link to comment Share on other sites More sharing options...
Racer Posted August 6, 2013 Author Report Share Posted August 6, 2013 Well, I found a possible cause of my symptoms today. Doctor called, tests show that I have a mass on my liver. Most likely non-cancerous, but It totally blindsided me, totally not what I was expecting! If I have to have this removed, from what I read, the surgery is major. The thought that it might be cancer, even if the odds that it is not. I have been on the verge of a nervous breakdown. Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 6, 2013 Report Share Posted August 6, 2013 Oh, Racer! I'm so sorry you got this news. It's always our worst fear realized. Please let us know what's going on when you have updates and know that my thoughts are with you. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 6, 2013 Report Share Posted August 6, 2013 Racer,sorry to read about your latest news. I can only imagine what you must be going through. I was going to ask if you ever tried ginger for your nausea, but then browsed through the rest of the posts....Please keep us posted, we're here for you.Alex Quote Link to comment Share on other sites More sharing options...
corina Posted August 6, 2013 Report Share Posted August 6, 2013 I'm so very sorry Racer. I'm thinking of you, hang in there okay?! Quote Link to comment Share on other sites More sharing options...
Racer Posted August 9, 2013 Author Report Share Posted August 9, 2013 Thank you Katie, Alex, Corina!My doctors figured some things out, and I got some proper treatment today. I feel SOOOOO much better!!!My abdominal pain and nausea got extreme, so I went to the doctor and demanded they run more tests. I got the "your crazy" speech, then he reluctantly sent me for more tests. A abdominal xray showed that my entire colon was full/blocked. I got cleaned out today, and my gastro gave me a ibs med linzess to trial. My nausea seems to be much better controlled now with the zofran.I was a bit disappointed with the gastric empty scan, because I know emptying was delayed during the test, like it normally is, but yet the report said everything was normal? While I should be happy the test was normal, I cant get any further treatment for nausea with the normal results.I was told the liver mass is "most likely" non-cancerous, but they didn't seem so sure. I was told that I should just wait and see if it grows or does anything that would show up on a test. So what happens if it is cancer and it goes out of control while I am waiting? I think it is time to get a second opinion! I am so sick of needing rock solid proof in order to get treatment for my problems Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 11, 2013 Report Share Posted August 11, 2013 I'm totally with you on getting a second opinion on the mass in your liver and I would get it from a reputable oncologist. I can't believe a doctor would tell you to "wait and see" on a thing like that. I bet they wouldn't tell their spouse to wait and see! I hope your spirits are a bit better and I hope you take care of yourself and get that second opinion.: -) Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted August 13, 2013 Report Share Posted August 13, 2013 I'm so sorry about your liver! I'm happy to hear you are finding a little bit of relief thanks to demanding they do some additional testing. I don't know if any of this will help in your situation, but I wanted to tell you that Zofran didn't do much for me (I still vomitted with it), but Phenegran did. The only down side is it makes you sleep A LOT and pretty much be a zombie. However, there was a time where that wasn't such a big deal to me because it was more important I was able to eat. I also benefit from taking ginger supplements when I'm getting nauseous (I used to take them twice a day as preventative measure). I also take digestive enzymes (I like Source Natrals Daily Essential Enzymes) to help break down the food in my stomach and help it get out of there more quickly and better digested. I hope things get better for you, keep us up to date. Quote Link to comment Share on other sites More sharing options...
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