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4/30/11 12:11 A

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I've been taking Domperidone for almost a year now and it works really well for me. I tried going off it for a while and just seeing what would happen with my GP and there was a lot more acid and pain but overall was pretty manageable until a couple weeks ago. I got severely bloated and it felt like my stomach was pressing on other things. I only ended up eating about 600 calories for 3 days and then decided I needed to go back on the Domperidone. After the first dose of it my stomach started to be less bloated and I am digesting food fairly well again. I dont have any of the breast tenderness or any other side effects as of right now. So there is some hope for people with GP and Domperidone might be the answer for you. I don't know how readily available it is for people in the states but I'm in Canada and I had no problems getting it.

I also had a question for you two ladies. I saw that you were both talking about growths. Is this a normal occurence for people with GP?

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NIKEGIRL1967's Photo NIKEGIRL1967 Posts: 478
6/30/10 3:01 P

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Hmmm, once again, you have given me food (no pun intended..LOL!) for thought....i never considered consistency...i did not know that you have had this for 12 years; when I stop to think that i have to live the rest of my life like this, I think the GP is worse than the rheumatoid arthritis.

can you take vitamins as supplements?...at night (just in case my stomach goes haywire), I take a plethora of vitamins; iron, magnesium, omega 3, calcium, vitamin B12, B50, C and D3...and there are always the stool softeners and sometimes a dose of Miralax (lovely subject, eh??...LMAO!).

How much weight have you lost?..is your GI doc concerned?..

I am good these days, thanks so much for asking...I do know that I am edgier that usual, which means my tolerance for bulls--t is zero...i have withdrawn from people because right now, i need to care for myself for a change...my life is is quite busy with two jobs, working out (sometimes 2x per day), volunteering, etc. that i really do not have time to think, which is good...i do communicate with some friends (but they have no idea what is really going on) and i just keep it light and then shut off when i feel like it.

I go to see my GI doc tomorrow to basically vent and tell him that the GP has gotten worse, even though I know there is not a damn thing he can do about it...then, on the 13th, off to yet another doc at Yale to discuss endoscopic removal of the growth...there are times that i feel i am playing against the clock, as no one can possibly know when this thing will turn to cancer.

As far as what I eat; in the morning, nothing...i drink 4oz of Endorush (BSN) to get me through the gym; around 8:30am, I drink a large Dunkin' Donuts lite latte with skim and Equal...around noon, I force myself to eat an organic raw bar (they are pretty damn good), and i also eat the Clif gel shots (they are organic carbs)...i try to drink about 80oz of water per day...at night, i eat another raw bar, maybe some veggies, and/or Clif Shot Roks (protein bites) and i have been forcing myself to drink a 4oz protein shot...i strength train and no protein isn't helping...for me, vomiting isn't the issue; it's the goddamn bloating...it's like my abdomen has an allergic reaction every time anything touches it internally.

I will cross my fingers for you, hon...let me know what happens on the 5th...if you feel like talking...if not, i totally get it.



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LUCKY-13's Photo LUCKY-13 Posts: 11,837
6/29/10 2:13 P

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It's usually certain foods, and consistency does play a part. Like broccoli, I can't eat it regardless of how it's prepared or how much/little I eat. It doesn't take much to make me full these days. Still some bloat even though I've lost a little weight.

I've had to rely a lot on carbs the past 12 years. Most carbs, with the exception of those that are fried or greasy, digest so easily that gravity can take care of moving it through as long as there is enough fluid in your stomach. I've GOT to start eating something other than carbs. The pineapple has been a welcome relief but I've been warned that should it not digest I'm going to have some problems (nausea, vomiting, possibly bezoars). I don't have anything left up my sleeve, so I'm trying something that has natural digestive enzymes, probably eating more of it than I should but at least I'm getting some vitamins.

Try gastroparesis@yahoogroups.com Don't let their quiz or intro statement fool you. No one contacted me and asked if I wanted help surfing their site or setting up an account. But I found it is good to read other people's ideas, solutions, and try to offer hope to those having it worse.

How are you doing these days? What are you able to keep down? I have my ultrasound on July 5th to see what the stomach polyp is doing. Maybe it's gone away. If not, then they want to biopsy it and see if it has "roots." I wish I could just stop thinking about it, but it's only about 4 inches away from my original cancer. Must...stay...busy...

Hugs,
Lucky

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
6/29/10 8:54 A

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Lucky, do you find the consistency of the food matters more than what the food is itself?...like, for me, i have discovered that I simply cannot eat pasta or rice...it just sits - for days - and bloats - for days...

I tried to find the GP site on Yahoo! but I think I am doing something wrong...can you tell me where to find it?

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LUCKY-13's Photo LUCKY-13 Posts: 11,837
6/28/10 4:00 P

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What's next? Soft food, like mashed potatoes, trying more blenderized foods, hopefully not baby food! I am getting some relief with pineapple (fresh and canned in juice). I've been putting it in smoothies and eating some at night. Seems to be helping to some degree and I'm staying "regular."

I have also heard that papaya is also a digestive enzyme, just like pineapple. I'm more fond of pineapple (minus the core).

I don't know how long this will last, but for now, it's all I've got besides being careful. Losing weight has gotten a little easier also.

Edited by: LUCKY-13 at: 6/29/2010 (13:56)
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
6/25/10 10:20 A

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On one hand, Lucky, I am so sorry that the Dom didn't work for you...it has to be so frustrating for you...however, I am glad that your bloating has dissipated after you discontinued use of the Dom...what's the next step for you?

Girl, who are you telling about thank god for smaller "girls"?..hahahaha...I have au natural "DDs" and the Dom blew them up; like, you could have put a six-pack on them and it wouldn't have fallen off...hahahahaha...i was so relieved when the swelling decreased after I came off the Dom.

I have not gone to the GP site on Yahoo!...i will look into it...

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LUCKY-13's Photo LUCKY-13 Posts: 11,837
6/24/10 2:45 P

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Hey there!

My GI doc said the bloat could be a Dom. side effect, although he really thought it was GP-related. I've had GP for over 10 years, and all of a sudden - WHAM!!! I felt like a beach ball that someone blew up. My body started looking like a guy who drank too much beer! I looked and felt horrible. Now, some of the bloating is gone, it varies from day to day. The Dom. did make my boobs bigger, but they're back to normal. LOL Thank God for smaller ta-tas!

Have you been on the GP site that's on Yahoo?

Edited by: LUCKY-13 at: 6/24/2010 (14:46)
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
6/24/10 10:17 A

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Good lord, Lucky, the Dom affected you really negatively, didn't it...it's shocking that the bloat was body-wide with you...and the pressure on your lungs and liver..did your doctor say that these were "possible" side-effects of the Dom or were these symptoms specific to you?...

yep, in the beginning, i tried Gas-X, which just made the bloat become a painful bloat...i never thought of the bloat as being fluid until you mentioned it...interesting...so now, I just try to consume as little as possible...while at the same time, remain active, which is a dichotomy...i am not taking in nearly what i need to to work out and build muscle, but i keep on keepin' on.

I have been doing a lot of reading on other sites about people's experience with GP and, come to find out, this bloating issue is huge (no pun intended) for a lot of people...ironically, it does make me feel better to know that it's relatively "normal" for people with GP.

I really feel that the more we step outside of our comfort zone to share with others, we can really help others in the sense of showing people that they are not losing their minds or alone in their struggles.

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LUCKY-13's Photo LUCKY-13 Posts: 11,837
6/21/10 9:18 P

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Hey there!
Sounds like you've a really rough time with the doctors and the GP lately.

As for doctors, I don't know what to say. Sometimes it seems like doctors aren't speaking the same language, you know? You get one who tells you that you "have" to get something done in order to get better, but that a specialist or another doctor, would be better to do the procedure/surgery/radiation/whatever. And then the specialist contradicts what your first doctor recommended. I can't count how many times it's happened to me or how many times I've heard about it happening to others. Most recently I had a GI surgeon want to perform fundoplication for my GP. My GI doc says GP is one of the biggest reasons fundoplication shouldn't be done. What a screw up! If I had listened to the surgeon, who knows what kind of trouble I'd be having right now.

I think it's a great idea to meet with your GI and ask questions. The contradictory suggested treatments need to be explained by at least one of them. The third doctor might even disagree with both of them, so explanations are really necessary before things get even more complicated.

And, of course, all of this stress is making your GP worse. I just don't see any easy and permanent answers for GP, just frustration by sufferers, and either indifference or ignorance by a lot of the medical profession.

Domperidome....I had to get off it. The two things I was able to digest (eggs, tuna) at the beginning soon became food to avoid like the plague. My GI doc said we could increase the dose but I opted not to. After six months of being on it, there wasn't anything that was better. My last three weeks on the Dom., were the worse. My bloating and distention was painful. It felt like fluid was pushing in on my lungs and my liver. Heart palpitations, bloated face and hands, gaining weight way too rapidly. Since quitting, I lost 10 pounds in two weeks. My lungs and liver don't hurt because of the water distention. My speech is better and I'm not feeling like depression is going to take over my emotions.

I'm going to stay with very soft food, smoothies for breakfast, smooth soups that I plan on making for myself for lunch and dinner. Baby food if I have too. Protein drinks maybe once a day. I know I'll probably lose weight pretty fast, but it's better than the pain, bloating/distention, vomiting and nausea, and...the list goes on and on. Too many of us are familiar with it.

I don't know how long I'll be able to tolerate the "mushy diet," but it's better than any so-called "alternatives" that didn't work. Even though there have been many people who have taken Dom. for many years, it's not for me.

I hope you find some answers and some relief. I tried all kinds of things to help with the bloating, but being bloated with air/gas is different than being distended with fluid. Maybe diuretics would help with the fluid, I don't know. I tried Gas-X, charcoal tablets, avoided all dairy...nothing worked because it wasn't gas, it was fluid. I've still got some of it, but getting off the Dom. did seem to help somewhat.

I'll be thinking about you and hoping you find some answers and something that works.

Many hugs,
Lucky

Edited by: LUCKY-13 at: 6/21/2010 (21:21)
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
6/21/10 10:18 A

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Hey, Lucky...are you not taking the Domperidone anymore?...did you have any level of success with it?

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LUCKY-13's Photo LUCKY-13 Posts: 11,837
5/22/10 3:20 P

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Do we still have anyone taking domperidone, or planning to start taking it?

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 2:22 P

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Clinical research for domperidome and GP:

clinicaltrials.gov/ct2/show/NCT00760
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1?cond=%22Gastroparesis%22&rank=16


clinicaltrials.gov/ct2/show/NCT00777
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9?cond=%22Gastroparesis%22&rank=27


clinicaltrials.gov/ct2/show/NCT00761
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4?cond=%22Gastroparesis%22&rank=28




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
3/7/10 1:16 P

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I think the side effects are still a big issue with the doctors. Since it was taken off the market here in the US, there are a lot of misconceptions. Originally Domperidone was used to help mothers increased their breast milk supply for their baby. I think it makes sense that tender or hurtful breasts and increase in breast size, could easily be considered a not-so-unusual side effect. I wish docs would research Domeperidone for its original purpose and then they'd see what I talking about. When I researched Dom. and GP, the side weren't that forthright. Dome and Breast milk....much more info.

NikeGirl: There's a good chance that Dome. isn't for you. The side effects you're having, regardless of them being unusual or not, don't sound like ones that will go away as your body gets (or tries to get) acclimated to it. Only you can make that decision, to get off it completely, to continue trying, or even to try the lowest dose possible (10 mg), 30 minutes before a meal (3 meals a day is what they're thinking of).

I think GP is getting more attention these days. There's more research going on, and as more "Baby Boomers" stay obese or over-weight, their chances of getting GP increases, so there will be more cases of it - and more research and solutions. I'm the eternal optimist. There WILL BE solutions!!!!

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 10:07 A

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Hey, Lucky - thank you SO much for all of this information; it's hugely helpful!

I just wanted to let you know that the breast tenderness is actually not common, as I initially thought it was...when I called my GI to ask him if the tenderness was ever going to disappear, he said that this side effect affects less than 1% of people who take Domperidone.

Unfortunately, it looks like I am going to have to stop taking the drug because of breast swelling and tenderness...back to the drawing board.

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LUCKY-13's Photo LUCKY-13 Posts: 11,837
2/20/10 7:23 P

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What is domperidone?

Domperidone (Motilium) is a peripheral dopamine antagonist generally used for controlling nausea and vomiting, dyspepsia (upset stomach), diabetic gastroparesis (poor stomach emptying which occurs in diabetics) and gastric reflux (heartburn). It blocks peripheral dopamine receptors in the intestinal wall and in the nausea center of the brainstem. Unlike metoclopramide (Reglan), it does not enter the brain compartment to any appreciable degree and has few central nervous system effects (such as depression and tardive dyskinesia with Reglan). (1)

It was developed by Janssen Pharmaceutical Products and first marketed in Belgium in 1978. It is currently approved for use in over 80 countries including the European Union, Australia, New Zealand, Canada, and Mexico. It is available without a prescription (OTC) in several countries, including Belgium, Ireland, Italy, Netherlands, United Kingdom, Switzerland and South Africa.

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
2/20/10 7:23 P

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With Domperidone, as in any medication, the possibility of side effects can vary from person to person, and vary in degree of severity. One of the most unusual, but somewhat common, is breast tenderness (this can range from barely noticeable to severe tenderness).

Domperidone was originally formulated for women who had trouble producing enough breast milk. This might help explain why breast tenderness is a common side effect.

From the San Diego Breastfeeding Coalition, the intravenous form presents more severe problems that the tablet or oral form, and the IV form no longer exists.

"...rare intestinal symptoms including cramps; rare galactorrhea (milk production), gynecomastia (increased breast size) and amenorrhea (lack of menstrual periods). There have been several published reports of cardiac arrhythmias, cardiac arrest, and sudden death in severely ill patients receiving an INTRAVENOUS form of domperidone. (10) The intravenous form was removed from the market approximately 20 years ago. THERE ARE NO REPORTS OF CARDIOTOXICITY (HEART PROBLEMS) FOR THE ORAL FORM of domperidone.

So, I'm curious. Does Domperidone work for mothers and is it safe for their babies?

"There are now 5 studies (albeit each with small numbers of subjects) which demonstrate clinically insignificant concentrations of domperidone in human milk, no side effects in infants, minimal to no side effects in mothers, and increased milk supply in most mothers."



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
2/20/10 5:41 P

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Take this information to your GI doctor if you feel that Domperidone is a medication you want to try for your gastroparesis. I will also add the link to our Links tab.

How To Obtain Domperidone

On June 7, 2004, the Food and Drug Administration (FDA) warned compounding pharmacies and firms that supply domperidone for use in compounding that it is illegal to compound domperidone and issued an import alert advising FDA field personnel that they may detain shipments of finished drug products and bulk ingredients containing domperidone.

These actions were the result of the Agency's concern about the potential public health risks associated with the use of domperidone by women who were breastfeeding.

Although FDA has determined that domperidone should not be compounded or used to enhance breast milk production in lactating women, there are some patients with severe gastrointestinal disorders, such as severe gastroparesis or severe GI motility disorders that are refractory to standard therapy, who may benefit from the drug and in whom the drug’s benefits outweigh its risks.

FDA encourages physicians who would like to prescribe domperidone for their patients with severe gastrointestinal disorders that are refractory to standard therapy to open an Investigational New Drug Application (IND). An IND is a request for FDA authorization to administer an investigational drug to humans. Such authorization would allow the importation, interstate shipment, and administration of the drug even though it is not approved for sale in the U.S.

For questions relating to domperidone INDs contact the Division of Drug Information, toll free at (800) INFO-FDA or (301) 796-3400.

{{Your doctor can find out how to prescribe domperidome for you and you can then order it through pharmacies in Canada. There are a few of us who can recommend the one we use.}}

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
2/20/10 5:38 P

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There's a lot more discussions going on about domperidome these days. It's another possible alternative to help GPers, just like the stomach pace maker.

I'll be cutting and pasting some of the info from our previous threads, links, and new information as it is found. It's good info for our new members and maybe a refresher for the rest of us.

But the bottom line NOW is: It can be obtained so you can try it and continue to use it if it works for you. So there just might be a bit more hope than before!
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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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