goodnuff77 Posted February 18, 2012 Report Share Posted February 18, 2012 I've been dealing with stomach issue's since the starts of Pots I've been diagnosed with delayed stomach emptying, severe GERD, Barrett's esophagus, and now being told losing muscle function in my throat. I have a ongoing sore throat worsened by eating and drinking, bad stomach pain's and bloating. Due to a nissan fundoplication I lost the ability to vomit but still dry heave which worsens the pain. It's being suggested to me a stomach feeding tube. It would be a J- tube to bypass the stomach completly. I was wondering if anyone has one or has been recomended for this. If this helps I think it would be a good idea for me but still a little nevous about it. Anyone info or expriences would be appreciated. Thanks Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 19, 2012 Report Share Posted February 19, 2012 Hi,I don't have any experience with the feeding tube but I just wanted to say that I hope you are able to find a solution. I know you have really been struggling and want you to know that you have support out here.Katie Quote Link to comment Share on other sites More sharing options...
goodnuff77 Posted February 19, 2012 Author Report Share Posted February 19, 2012 Thank you katie Quote Link to comment Share on other sites More sharing options...
comfortzone Posted February 19, 2012 Report Share Posted February 19, 2012 You have my prayers as well... I guess I only have questions - but no answers... I would want to know what the best possible outcome would be for you if you do this. Is the aim of it to be a temporary fix to allow the stomach and esophagus time to 'rest' and thus heal? Is this something that will be permanent or temporary? I thought that for the most part all tubes were pretty much temporary in nature - allowing extra nutrition and medications etc... for specific purposes/disorders... Did they say how long or what would need to occur in order for them to remove it once and for all?If your pain and bloating come from food when it's ingested --- what causes that pain and bloating - is it the actual types of food itself in the stomach such as carbs vs fats vs proteins? Or is it the mechanical issues - such as high fiber requiring more work for the stomach or is it the food size going down - like thin soups are fine - but forget steak and chicken? Had they ever tried you on an NG tube with enteral feedings to see how you tolerate the feedings into the stomach?Then the sore throat - do they say why you have it? If you had the Nissan done - does acid 'still' reflux up and injure your esophagus and throat? If you were to eat nothing in a day - does that allow your throat time to rest/heal? I would also want to know why muscles are being damaged in your throat? Is that a disease process of another type - or is it GI related somehow? What mechanism of injury makes the muscle tissue not be able to function?Then finally in a best case and worst case scenario what would the J-tube accomplish for you... I think number one is that it would provide good nutrition - and when the body is fed it is able to get stronger... Is your intestinal tract pretty healthy? Meaning normal going to the bathroom? The J-tube at the skin will need to be kept clean and dry - a simple guaze dressing most likely... The enteral feeding solution will likely be placed on a pump - so accurate dosage and rate can be obtained. So you'll have a bit of equipment - it's pretty easy to do though...and it will assure the very slow rate of administration which is required for a J-tube as the intestine cannot store food - needs to drip in slow. A button is sometimes placed at the skin - it's really just something for you to plug the tubing into so you don't have to worry about a tube getting in the way of your lifestyle activities...I don't expect any answers to the questions - but if I were you I'd want to know absolutely all that I could with exacting clarity as to what is to happen, how, why, for how long, how does it get finished etc... But all personalities are different - some people just say, "let's do this"... I ask questions a lot because I notice doctors do like to do procedures and things like procedures when we patients are hurting and not doing well -- but sometimes they neglect to tell you about the 'end' of things - like how to discontinue a medication - or in your case - is this forever? Will l eat with it in place too? How long will I have it? How will I start to eat again afterward? Those kinds of things...Blessings to you and much healing! Quote Link to comment Share on other sites More sharing options...
goodnuff77 Posted February 20, 2012 Author Report Share Posted February 20, 2012 nowwhat: I agree with you about the questions before having the tube put in. As far as how long the tube will be in. Not sure it depends on my body. This is pretty much a procedure to try to give me a better daily outcome. The problems have been ongoing. The Dr's have tried all the meds they think would work. I've switched my diet many times and nothing has been helpful. I didn't take notes at last appointment but this is pretty much what I was told. My delayed stomache emptying is causing stomach pain and bloating also putting pressure on lungs giving me chest pressure and breathing issues. Even though I had the nissan it appears that acid is still making it's way to the esophagus. Then the muscles in my throat arn't working in the churning of the food to the stomach. I deal with pneumonia on a regular basis. Something was said about aspiration causing the pneumonia. The Dr is concerned with increasing problems like not being able to swallow more breathing problems. So the j tube is being looked at to bypass my whole system pretty much to try to allow healing. Then hopfully Things will heal. But there unsure if it will be short or long term. Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 20, 2012 Report Share Posted February 20, 2012 goodnuff,I just had a random thought...I started with severe GERD/Reflux when I was a kid (4 y.o.) Because the docs kept telling my mom it was psychosomatic because my paretns were splitting up, I wasn't properly dx'ed for 3 years. The sphincter at the bottom of my esophagus was not working at all by that time and my esophagus was ulcerated from the constant acid. I vomitted every morning upon waking because the acid sat in myesophagus all night. They put me on a drug called Urecholine. This was of course 30+ years ago before they had all the meds that now target stomach issues, but, it may be worth talking to your doc to see if they still use it in rare occasions when nothing else works. I had great success with it. I was eventually weaned off of it at 9 y.o. and did not have a recurrence of my stomach problems until my last year of college. It is not marketed for GI issues, but, it can't hurt to ask if it might help. http://www.drugs.com/cdi/urecholine.html Quote Link to comment Share on other sites More sharing options...
comfortzone Posted February 20, 2012 Report Share Posted February 20, 2012 After reading what you wrote about pneumonia etc... sounds like you might be an ideal candidate for this J-tube! I have much much hope that it will truly be of great benefit ... I'm glad you have docs that are continuing on your behalf to come up with ideas so you feel better -- again many blessings as you forge ahead toward wellness :-) Quote Link to comment Share on other sites More sharing options...
goodnuff77 Posted February 20, 2012 Author Report Share Posted February 20, 2012 Thanks nowwhat. Find out more on wenesday I'm being positive in that it will help. Quote Link to comment Share on other sites More sharing options...
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