Hi all. Here is my BOOK on gastroparesis. I have been dealing with this for a while, but for a long time I confused the symptoms with GERD. Even though I was having bloating and belching that were not listed on any of the lists as GERD symptoms, I

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Hi all. Here is my BOOK on gastroparesis. I have been dealing with this for a while, but for a long time I confused the symptoms with GERD. Even though I was having bloating and belching that were not listed on any of the lists as GERD symptoms, I still thought I was just having some abnormal symptoms and ignored them especially as nausea and vomiting can be GERD symptoms. It is also noteworthy that I am currently nauseous almost all of the time now. It was not until a hospitalization this past October that the possibility of gastroparesis was considered. This came during a bronchomalcia/asthma/vcd hospitalization. Of course for several days before hospitalization I had used my iptatroprium bromide/albuterol (Duoneb)

combo from four to six times a day, then in the ER the mega dosed me with the stuff, then back to the six times a day schedule while incarcerated. About 12 hours after admission I started throwing up. I then proceed to throw up everything except plain water for the next three days. They tried phenergan and zofran in very high IV doses with absolutely no effect. Then they started me on Reglan after the first 24 hours. This helped the teeniest bit, but not enough to stop the vomiting. It just delayed it for another 15 to 20 minutes. On the third day they brought in a GI who immediately suspected gastroparesis. She stopped the Reglan, phenergan and zofran. The phenergan and zofran are just not effective in this. I was glad to stop those as the phenergan not only just puts me to sleep it burns really really bad going into my arm from the iv. Reglan is one of two drug treatments for

gastroparesis. However, she wanted it stopped until I had some testing done and until we determined if it would be of any value. First, she did not want to confuse a diagnosis, and second, Reglan has some very possible nasty permanent side effects that are not worth the risk for a maybe treatment. About two days after discharge, I went for an outpatient modified barium swallow and a gastric emptying study. The swallow was normal but the scan showed significant slow digestion. From then until January 4th, I was just on my own doing research and trial and error as there was a wait to see a GI doc who would accept workers comp. My personal observations are: 1) I can not completely quit using the iptatroprium. There is not another class of medicine that will relax the lung walls to reduce bronchospasm. I could try switching to

spiriva, but even if it not immediately produce the same symptoms, it would eventually do so. I am however only using the duoneb as a last resort. I am using the albuterol on its own for the most part and only mixing in the iptatroprium as a last resort before making the decision to go to the ER. Others may be able to completely stop the anticholinergic drugs without significant issues though. My bronchomalacia really complicates things. I can not afford bronchospasm (even a little bit) as that will only cause the tubes to slam shut on me. That is the reason I can not completely drop the drug. 2) Adding a LABA such as performist or brovana to your repertoire may be a very good decision. Although the black block warnings on controller meds are aimed at the LABA they contain, as long as you are taking a daily corticosteroid you will not significantly increase your risks by adding

additional LABA throughout the day. I have added a twice a day LABA called Performist. I only use this when asthma symptoms are active. It is not my regular controller med (pulmicort) or my rescue med (albuterol - iptatroprium). It is an add on when needed. I have found that adding this when I am symptomatic greatly reduces the need for albuterol or iptatroprium. 3) I have had to change my diet to one that I don't think of as particulary healthy. I am not happy with this new diet as it incurs a lot of simple carbs and avoidance of whole grains and raw fruits and vegetables. This has been hell on my quest to remove the weight the steroids packed on. I am also one of those freaks who love raw vegetable and whole foods. Muchy green beans are really just about unpalatable. A good explanation of this diet is the low fiber diet from the Mayo Clinic website.

http://www.mayoclinic.com/health/low-fiber-diet/my007444) Other dietary controls include drinking lots of water while eating. This increases speed of digestion and also helps to make me feel full quicker. I have also been eating much smaller meals more times a day. When it is really bad, I only eat two or three bites at a time. Even then, I will sometimes vomit. Just try and try again. When it is really bad I have also started taking all of my meds on an empty stomach with loads of water. I know that some of the meds are hard on the stomach, but if I try to eat I may not keep them down. Then I am left wondering how much did my body absorb before losing the meds, etc., etc. I only do this on days when it is really really bad.When I finally saw a doc.

This is what I found out. My gastroparesis is classified as acquired non-diabetic moderate. The iptraproprium bromide is definitely the smoking trigger (although the high dose long term steroids did nothing to help the situation - finally something they didn't actively cause). There are only two medicinal treatments and one surgery that have any possibility of helping gastroparesis. The surgery is very nasty and only has limited success. Therefore it is not even considered unless you are develop severe malnutrition. (Thanking God that I am not going to have to deal with that!) It involves taking part of the small intestine and creating sort of a second stomach or holding tank for the food as the problem is really not with the stomach itself. It really lies in the small intestine. As the smooth muscle walls relax they quit moving food through. The general idea is that the stomach can empty

into the "holding tank" which will give the small intestine time to catch up before you eat again. Sounds good but does not have a high success rate. The medicinal treatments are Erythrocin and Reglan. Both of these are motility agents. Neither of these is considered extremely effective either. For some they work tolerably well, others will get some relief with a combo diet restructure and medication, but others still have no noticeable difference with the medication at all. The GI said it was hit or miss. Not very encouraging. The GI was really impressed I had been able to research and work out the iptatroprium issue and dietary changes on my own. Other than trying the meds, he indicated that there was nothing else he could tell me to do. He also indicated that constant nausea in not normal with gastroparesis in general. He generally only sees this with insulin dependent diabetics that

have some neuropathic damage. If my nausea does not improve with the current medication trial, he will do an MRI. The doc said that the long term prednisone could have caused some changes in my brain. If that is the case, there are specific treatments for that. So, the short story is that the constant nausea may or may not be the gastroparesis. Intermittent nausea (especially when associated with eating) is definitely associated with gastroparesis. The meds are Reglan and Erythrocin. Reglan works by blocking the dopamine receptors in the digestive system. It was originally used as an anti-psychotic medication but was proven to not be very effective in the brain chemistry. It can be very nasty (seizures,convulsions, or Tardive Dyskinesia). I find the Tardive Dyskinesia to be particularly troubling as it involves the muscles of the tongue, mouth, and face. It

can cause involuntary movements and paralysis such as identified with stroke. The risk of Tardive Dyskinesia is stated to be one percent. However, my doctor thinks it is probably closer to five percent. He said he has a patient with it and most other GI's he knows also have at least one patient with it. Erythrocin is an antibiotic in the macrolide family (i.e. zithromax (zpack, azithromycin) and erythromycin). It will not build resistances to other classes of antibiotics such as cephalosporins (rocephin) or quinolones (i.e. levaquin, avelox, levoflaxin) that are commonly used to treat respiratory illnesses. As with all antibiotics, this can not be taken long term. I am in week two of a three month trial to determine if a motility agent will work for me. So far, I am not particularly impressed, but the doctor did indicate that it

could take up to 6 weeks for me to really see any difference as this is the first time I am taking a motility agent. My body has to get used to it. He also indicated, that although I can not stay on this long term, I can take it for a week or so at a time several times a year when I am forced to use the iptatroprium. This is the route I am most comfortable with trying. Although I can't take Erythrocin (an antibiotic that acts like a motility agent) long term. It will help us to determine if the Reglan would even help or not, and if so to what degree of help it would be. If I see MAJOR (and I mean major - almost miraculous) improvement while taking the Erythrocin, I will consider trying the Reglan. However, if there is only a minimal to moderate improvement, I will not chance the Reglan side effects. This is only my research and experience. Even though gastroparesis does not have the same type of effect on the respiratory system as GERD, it is not something to be dismissed either. When you vomit, significant amounts of bile and other nasties travel up the esophagus and it is very likely that at least small amounts can make their way into the respiratory tract. The bloating can also be an issue. The bloating can irritate GERD and in extreme cases put pressure on the diaphragm and lower lungs. If you are having these symptoms make sure to discuss with your doctor. With doctor knowledge and supervision, try a suspension of any anticholinergic drugs and a dietary modification. If you get relief with this you will have your answer. If the relief is minimal ask for a

GI referral. A GI evaluation really should be a standard part of any asthmatic treatment plan as many GI disorders can have a direct effect on respiratory health.Madeline