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LUCKY-13's Photo LUCKY-13 Posts: 11,837
5/22/10 3:19 P

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Is anyone considering having a stomach pace-maker installed? Or has anyone had it done yet? If so, how did it work for you?

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
5/15/10 6:47 A

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From the Spring Observer/Houston Community Newspapers


Northwest offers treatment option for gastroparesis

By From Community Reports

Updated: 05.14.10

Houston Northwest Medical Center is one of only three locations in Houston, and the only one in North Harris/South Montgomery County, performing gastric electric stimulation surgery for people suffering from gastroparesis.

Dr. Guru N. Reddy, gastroenterologist on the medical staff at Houston Northwest Medical Center, introduced this technology to the hospital, making it available to residents of the northwest community. Gastric electrical stimulation may be used to help reduce symptoms of chronic nausea and vomiting associated with gastroparesis of diabetic or unknown origin that resists treatment with medication.

“Gastroparesis is a stomach disorder in which food is digested more slowly than normal,” said Dr. Atif Shahzad, gastroenterologist on the medical staff at Houston Northwest Medical Center. “In a healthy digestive system, strong muscular contractions move food from the stomach through the digestive tract. With gastroparesis, however, the stomach muscles work poorly or not at all, thus preventing the stomach from emptying properly.”

The electric stimulator acts as a “pacemaker for the stomach” and sends mild electrical impulses to the stomach to stimulate the nerves and smooth muscles of the lower stomach. Stimulation can be adjusted to the appropriate settings with a handheld, external programmer. The therapy is reversible and can be turned off by doctors at any time.

“Patients experiencing nausea and vomiting may not know when these episodes will occur,” said Dr. Dexter Turnquest, general surgeon on the medical staff at HNMC. “Because gastroparesis has no cure, this procedure may improve the quality of life for people suffering from gastroparesis who are not responsive to medication or dietary changes.”

The cause of gastroparesis is unknown, but it may be caused by a disruption of nerve signals to the intestine. The condition is a common complication of diabetes, either Type 1 or Type 2. Common symptoms of gastroparesis include nausea, vomiting, abdominal bloating, abdominal pain, feelings of fullness after only a few bites of food, heartburn, changes in blood sugar levels, lack of appetite and excessive weight loss.

Gastroparesis can not only cause chronic nausea and vomiting, but also lead to malnutrition and inadequate blood sugar levels. Medication and diet changes are standard treatments for gastroparesis; however, they may not provide enough relief on their own.

For more information about this surgery or for a physician referral, please call 281-580-0000.



Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
4/3/10 2:18 P

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Clinical research for GP pacemakers:
clinicaltrials.gov/ct2/show/NCT01054
79
4?cond=%22Gastroparesis%22&rank=4



clinicaltrials.gov/ct2/show/NCT00903
79
9?cond=%22Gastroparesis%22&rank=26


Edited by: LUCKY-13 at: 4/3/2010 (14:19)
Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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NIKEGIRL1967's Photo NIKEGIRL1967 Posts: 478
2/25/10 10:29 A

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Hey, Lucky!..glad that you received a good price on the Dom...just an FYI; it took about three weeks for me to receive my Dom when I ordered it...I live in NY, so I don't know if geographic location makes a diff...

I am looking into protein shots now, which deliver the same amount of protein and BCAAs with 1/4 of the liquid that I typically drink...it's like trying to get the nourishment and hydration that you need while consuming as little volume as possible.

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LUCKY-13's Photo LUCKY-13 Posts: 11,837
2/24/10 9:22 P

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Hey,

I'm sorry you're having trouble with the Dom. I placed my first order through the Canadian Pharmacy and hope it'll be in sometime next week. I'm currently taking 20 mg three or four a day after speaking the GI recently. He was really amazed at the price difference and I promised to let him know more about it after my first batch came in.

I asked him about bloating and he said sometimes it's because raw fruit, veggies, or protein aren't being digested quick enough and the fermentation can cause very severe and painful bloating. He said even ground up or very well chewed foods can still lead to bloating, and advised to eliminate the food that might be causing it. He's seen GPers have severe bloating with protein shakes also. Not always because of the protein, but what's added to them. I stopped using mine and the bloating did come down. I was hoping to be able to continue with them but maybe not.



Edited by: LUCKY-13 at: 2/24/2010 (21:24)
Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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NIKEGIRL1967's Photo NIKEGIRL1967 Posts: 478
2/24/10 10:19 A

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hey, y'all...I have to admit, I am on the cusp of wanting the pacemaker...the GP is becoming worse and worse for me...the Domperidone was working, I think, a bit in the beginning (I started around the end of January 2010), but I had to decrease the dosage due to side effects and now will be taken off the drug due to side effects.

For me, it's not so much the nausea; it's bloating and feeling full so damn quickly...my water intake has been drastically decreased from 120 oz per day down to 20 - 40 ounces, which is putting my kidneys at risk (kidney infection onset yesterday) because I am not flushing them enough...i am down to one solid meal per day, at night, when I am not at work...I am drinking protein shakes for breakfast and lunch but am now investigating the protein shots which are only four ounces...I am CONSTANTLY bloated and when I go out for dinner, forget it - a couple of bites and I am done.

I am not losing weight because of a couple of things, I think; I am not eating nearly what I should be for my workout regimen, which is causing my body to go into starvation mode and, when I do eat, I am ingesting carbs (that's what my GI said would be most digestible).

Honestly, I can see how a severe case of GP can turn into an eating disorder.

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LUCKY-13's Photo LUCKY-13 Posts: 11,837
2/10/10 8:52 P

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Thanks for passing along the information! It is much appreciated!

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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SHANNONFROST1's Photo SHANNONFROST1 Posts: 12
2/10/10 8:38 P

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Check out the G-Pact Washington DC visit with a Senator from John McCain's camp, they are trying to educate DC on GP. This will be March 7-8 if anyone can go, please sign up. You can get the info on the G-Pact website. There is also an advocacy for patients with chronic illnesses newsletter, go to www.advocacyforpatients.org and you can access this information.

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LUCKY-13's Photo LUCKY-13 Posts: 11,837
2/10/10 8:21 P

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I have health insurance now, but my husband and I want to move from Florida and then trying to get insurance will be tricky. My insurance doesn't pick up the cost of the Domperidone though. I hope you get insurance through your employer.

Just looked G-Pact up and it looks great! Thanks for passing it along.

Edited by: LUCKY-13 at: 2/10/2010 (20:23)
Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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SHANNONFROST1's Photo SHANNONFROST1 Posts: 12
2/10/10 8:11 P

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I have also tried Phenergan, Zofran, Erythromycin, Zelnorm, Domperidone, some others I can't even remember, however, with the Prevacid and Amitiza and watching what I eat this has worked really well for me. I can't do a lot of fruits, veggies, or fiber, but I can some. I can pretty much eat what I want in moderation, I am very lucky in that I am not as limited to food restrictions as a lot of others with GP. I have learned with this disease it is different for everyone, and it is a trial and error thing. Stress really flips mine out, makes my stomach nervous and upset, and have flare ups that last a while. I try to limit my stress as much as possible, although, that is tough. I am able to work from home now and I am very fortunate there. I was on FMLA before I left my last job and was unable to work a lot of days. What about insurance for you guys? I am currently still under my COBRA plan, but it will expire in September. I am hoping and praying, that I will get offered a plan with my current company, but I don't know about that. Does anyone else have insurance issues or know of companies that will cover GP patients? Do you look at the G-Pact pages or subscribe to this group? I also get updates from them, I have them on e-mail and my Facebook fan page. Thanks!


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
2/10/10 7:39 P

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I live in Gainesville, Florida and the University here has also been doing some research. Some years ago they mentioned the pacemaker but I didn't like the sound of it. My other option was some of the medications they were trying - not exactly new medications, but ones that have the side effect of agitating the stomach.

My GI doc tried Azithromycin, thinking that since it's a lot like EES, I would have success with that and he told me he thought he could at least get me to eating more vegetables. I was on it a little over three years and was his patient who had been on it the longest when it finally stopped working.

From there we tried Zelnorm, Propulsid, some others and even Amitiza. All of these would work for a few days and then just stop. I'm now on Domperidone, 20 mg 3 times a day, but I'm not taking it whenever I'm pretty sure I can digest my high-carb meal. I don't think I've taken it long enough to be able to see any results. I'm still a bit afraid to try something "new" in the way of food because like most GPers, when I get sick, it's bad enough to put me in the hospital.

I can relate to putting on the pounds because all I'm eating are carbs: rice, potatoes, some beans that are cooked to death, mac 'n cheese. I can eat some dairy also. If I was to go back to trying to eat salads, meat, seafood, broccoli, eggs, fried foods (my gallbladder has been removed), I would definitely be losing weight because I wouldn't keep anything down.

Right now, all my hopes are put into the Dom. I told my GI doc I wanted to order it from Canada because it's A LOT less expensive there.

Please feel free to ask questions and tell us what works/doesn't work for you. Sharing our GP experiences has been more helpful, for me anyway, than talking to my GI doc. He's so puzzled by it that often I'm telling him what works and what doesn't.
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Edited by: LUCKY-13 at: 2/10/2010 (19:39)
Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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SHANNONFROST1's Photo SHANNONFROST1 Posts: 12
2/10/10 4:58 P

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I was referred to a GI dr. in my area from my primary care physician. I saw him for several months and he diagnosed me with Idiopathic GP, tried lots of different medications, I suffered from GP after having food poisoning. After several medication trials and errors, my GI dr. said there wasn't anything else he could do for me, I didn't appear to be as sick as other patients because I was gaining weight instead of losing. However, I was suffering from severe nausea and trying to work a full time job while taking Phenergan. I got on the internet and starting researching, I had been doing this the entire time. I was not going to settle for "there's nothing else we can do". I found Dr. Thomas Abell, at the University of Missippi in Jackson doing a trial study on patients with GP. He and his office staff are the best thing that has happened to me. I go every 3-6 months for an appt. and they really know what someone with GP has to endure. They have recommended the pacemaker, but at this point, I am able to eat and take my medication. I personally don't want to try the pacemaker until nothing else works for me. I did have my gallbladder removed September 2008, it has been better for me, at times, it helped with the nausea having this removed. However, I do have other problems with not having my gallbladder at times.

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SHANNONFROST1's Photo SHANNONFROST1 Posts: 12
2/10/10 4:51 P

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I currently take Prevacid and Amitiza 8 mcg. once a day, have been on this over a year and it is working very well. I work out about 3-4 hours per week, Curves for Women, and am trying to do a low fat diet. I have lost 18 pounds since March 2009, still want to lose about 23 pounds. I gained a lot when I was first diagnosed with GP, unlike a lot of patients I could eat, had nausea very bad, but carbs were about all I could eat, so I packed on the pounds. Of course, I didn't feel like exercising, but all of this together has helped me a lot. I still have bad days and when I take my medication I have to be home for about 3 hours in order for my meds to work. If there is a day I can't take it due to traveling, etc. I have problems with gall bladder issues due to having this removed. Overall, I am a lot better than I was.

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DIVA540's Photo DIVA540 Posts: 692
2/10/10 3:24 P

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Lucky,
No, you have not asked me and that is a very good question. No, my doc has not said anything to me about a "vacation" from them, just would be worried about what to take in between to keep me from having attacks!! May want to try that since the past week things have been "freaking" out my system no matter what i eat, but i also think it is stress..*my favorite friend* lol lol...

Thanks for bringing that to my attention, i will mention it to Dr.G when i go back next month..

HUGS,
Eileen

LUCKY-13's Photo LUCKY-13 Posts: 11,837
2/10/10 3:03 P

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Eileen,

Forgive me if you've already told me (my allergy meds are making me forgetful), but when you use the EES, does your doctor recommend taking a "vacation" from it? I did three weeks on and then one off. It kind of helped to re-set the EES and it would start working better.

I'm not on it now because the "vacations" didn't help, and 6 tablespoons per meal didn't help either.

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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DIVA540's Photo DIVA540 Posts: 692
2/10/10 2:22 P

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Shannon,

I 2nd that welcome!! I too am in GA., and suffer from idiopathic GP. How did you become part of a study in MS? What type of study is it? I have been on EES ( erythromycin ) for years now and it seems to be the only thing working, however, in the last few months been feeling like nothing is working.

It makes it hard to do alot of things with GP and recently found out that i have IBS on top of it all. Adding insult to injury as they say.

I am with Lucky, look forward to hearing from you and hope you join in the chats, games and rants and raves.. Hugs..take care..

Eileen

LUCKY-13's Photo LUCKY-13 Posts: 11,837
2/10/10 1:37 P

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Hi Shannon!
Welcome to the GP group. What kind of medication does your doctor have you on? Is it working? How long have you been using it?

I know, lots of questions! There are several of us still trying to find something that works, and have a great deal of interest of anything new that's become available.

Hope you'll jump in to the chat threads often!
Lucky
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Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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SHANNONFROST1's Photo SHANNONFROST1 Posts: 12
2/10/10 11:41 A

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I was diagnosed with Idiopathic GP October 2006, I live in GA, but currently see a physician as part of a clinical trial in Jackson, MS. I have been able to control a lot of my symptoms with medication, diet, and exercise. I also had my gallbladder removed September 2007. Life with GP is definitely a challenge. I am excited to find a group to work with weight losss, diet, exercise, etc. for GP.

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LUCKY-13's Photo LUCKY-13 Posts: 11,837
2/8/10 7:52 P

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Eileen,

I would love to see more research data on that stomach pacemaker also. I wonder how many people have had one put in so far.

I had an opportunity to get one about three or four years when I was still a guinea pig at UF, but it sounded too scary at that time. If I can find any numbers on it, I'll get us a link for it.

Hugs to all!

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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DIVA540's Photo DIVA540 Posts: 692
2/3/10 7:16 A

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Lucky,
THANK YOU for the article. I was told by Dr. Werner that if i had another attack like the last one that wound me up in the hospital, then i was next on his list to get one and i am really nervous, so i am trying to be good!! I think the whole concept of the stimulator is great, but not sure about ANOTHER surgery.I also wonder what the "success" rate is with this thing. Hope you are having a great week.

Eileen

LUCKY-13's Photo LUCKY-13 Posts: 11,837
2/3/10 6:01 A

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Stomach pacemaker helps gastroparesis
1/25/2010 3:31 PM
By: Ivanhoe Broadcast Services

Stomach pacemaker

The leading cause of gastroparesis is diabetes. People who have diabetes have high blood pressure, which can cause chemical changes in nerves and damage blood vessels. Over time, high blood pressure can damage the vagus nerve and thus leave it impaired.

A few other causes of gastroparesis include viral infections, anorexia nervosa or bulimia, surgery on the stomach or vagus nerve, medications that slow intestine contractions, gastroesophgeal reflux disease, nervous system diseases, metabolic disorders and smooth muscle disorders.


If it takes too long for the food to be processed through the intestines, it can cause bacterial overgrowth and can harden into solids, or bezoars that can cause nausea, vomiting and obstruction inside the stomach. Bezoars can cause dangerous complications if they block food passage into the small intestine.

Memorial Hermann Southwest Hospital surgeons are performing a unique surgery to treat the symptoms of gastroparesis called gastric electric stimulation. It involves implanting a stomach "pacemaker," a small device implanted underneath the skin in the lower abdomen that sends mild electrical impulses.
These impulses stimulate nerves and smooth the muscles of the stomach.

The device is intended to reduce symptoms of chronic nausea and vomiting closely associated with gastroparesis. Though the device is coined a "pacemaker," Dr. Todd Wood, general surgeon at Memorial Hermann Southwest Hospital in Houston, Texas, says the device is more accurately described as a "stimulator."

For More Information:
Lindsey Klingensmith
Media Relations
Memorial Hermann Southwest Hospital
Houston, TX
Lindsey.klingensmith@memorialhermann.org
(713) 222-CARE

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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