Gastroparesis

[rach73]

Hi,

I finally got diagnosed with gastroparesis last week. I didn't have any emptying studies done the Dr just accepted that my ANS is screwed and it was obvious that my vomiting undigested food, pain, bloating and loss of appetite are being caused by this. I also got diagnosed with IBS again caused by ANS dysfunction. I got told to up my domperidone to 20Mg 3 times a day and they would see me in four months.

At the appointment I was told if your condition worsens get your GP to contact us. I told the Dr I was starting to go into a flare up where I can't eat / drink etc and the domperidone wont help. He just repeated to contact them. So hear I am less than a week later struggling to eat and drink due to nausea and vomiting. Don't get me wrong its a great weight loss plan, but I feel like death warmed up.

I was in so much pain today my GP came and did a home visit. She wants me to cut the domperidone dosage in half and see how I get on. At the moment I can tolerate milkshake, but I know it will only take one vomiting session with milkshake and I will be off it for life. Yesterdays calorie in take was around 200, todays is better at 600, but no where near enough.

My problem is a lot of my meds florinef, naproxen rely on me having food to take the tablet. Florinef is now being taken anytime after 3pm. I am struggling to drink and I am definitely not getting enough salt. I feel so weak and my POTS is going crazy, my blood pressure is dropping where as it had been a respectable 155/75.

I can't take eurthromycin (sorry about the spelling) it makes me ill (horrendous stomach cramps etc), Reglan makes me a complete space cadet and gives me muscle spasms. Does anyone know of any other treatment?

This Dr is taking me seriously when I say that I can't eat unlike my last GP who chose to ignore it despite me losing over 30lbs. I am a large lady though at this rate I wont be, I don't want to end up on a feeding tube or having a gastric pacer - although I think I am quite a way from there at the moment.

Does anyone have any suggestions as even the thought of food / smell of food is making me gag.

Thanks

Rach

[Victoria]

I feel so weak and my POTS is going crazy, my blood pressure is dropping where as it had been a respectable 155/75.

You said you your GP saw you at home. Did he make sure you're not dehydrated? That can kill your appetite, drop your BP, make you vomit relentlessly and make your POTS worse.

I think this warrants one of those dreaded "E" room visits. Very sorry you're having such a hard go of it.

[janiedelite]

Maybe you would benefit from seeing a good gastroenterologist (soon!). There are more invasive ways to improve stomach motility like a pacemaker although I'm NOT saying you'd need this. But there are other options that only an expert could help you with. Best wishes, whatever happens you needs help soon!

I agree that you probably are dehydrated. Could you at least have your doctor get you some IV fluids?

[stacdliw]

I am so sorry that you have been diagnosed with gastroparesis. For the past seven years, I have struggled with gastroparesis and I understand how miserable you feel. My first suggestion is to make an appointment with a gastroenterologist who is experienced with treating gastroparesis. Call your local AMA to get a recommendation. If you live near a large university, call their medical center and inquire if one of their GI's specialize in gastroparesis. GP's know very little about the disorder and I would much rather have a specialist monitoring my condition.

Second, you need to follow a gastroparesis diet plan. Basically, there are many foods that people with gastroparesis can and cannot tolerate. You can access an explanation of the gastroparesis diet plan here http://www.rd411.com/index.php?option=com_content&view=article&id=471:gastroparesis:-guidelines,-tips-and-sample-meal-plan&catid=89:allergies,-intolerances-and-special-diets&Itemid=383. If this link doesn't work, just google: gastroparesis diet plan.

When you said that you were drinking milkshakes, the first thing I thought was: no wonder she is vomiting. No one even counseled you on your diet, did they? When you are in a flare and vomiting, it is best if you drink clear liquids and eat broth( that is good for people with POTS because broth is loaded with salt). Basically, there are, I believe, 4 progressive steps in eating: starting out with clear liquids. Once you can tolerate foods/drinks at Step 1, you then introduce foods in Step 2, etc...soft foods, saltine crackers, etc... However, there are some foods that GPer's avoid, uncooked fruit and vegetables, fiber, high fat foods to name a few.

If you feel nauseous, call your doctor and ask for some nausea medication, like phenegran or Zofran. It definitely makes the nausea tolerable and will stop the vomiting so you won't become dehydrated. I couldn't live without my nausea medication. Nausea and gastroparesis go hand and hand. Beware though phenegren will make you sleepy, but sometimes I would rather sleep than be nauseated.

As for taking your POTS medication when your nauseated, I struggle with that as well. That's why you need the nausea meds. However, until you get the nausea meds, try eating some saltine crackers or toast and then taking your meds. When I sick, it has sometimes taken me over 2 hours to take all my morning meds.

It's odd that your doctor told you to decrease your Domperidone. Normally, the more severe the gastroparesis, the higher the dosage. At my sickest, I took 3 pills of Domperidone 4 times daily!! I now take 2 pills 3 times daily. The symptoms of gastroparesis tend to wax and wane. I must say, I was my sickest the first 2- 3 years and then I started having periods that the nausea wasn't as severe or as often. The beginning of the disorder is definitely the worse, but with medication, most people do improve, though probably not as quickly as they want. The key is to follow the GP diet and to keep a good attitude!

Let me know if you have any other questions!

Bev Ray

[stacdliw]

Just reread your post. My GI is one of the leading specialist in gastroparesis in the nation. You said that you are taking erythomyocin! Yikes! My neruologist put me on this medicine and when my GI found out about it ( I called him because I was having MAJOR side effects), it nearly hit the roof. He said that people with healthy stomachs has side effects with erthromycin and, of course, those with GP would have major problems.

Many GI's treat GP with Reglan; however, many patients report lots of side effects from this medication. Dr. Wo prescribed Domperidone for me because there are very little side effects related to the medicine. The BIG problem with this medicine is that it is not FDA approved and only certain pharmacies across the US compound the medication which makes it expensive. It is also available in Canada as Motillium for a much reduced price. However, when compared to the side effects of Reglan, I will gladly pay a few extra dollars for Domperidone!

So, as you can see there are definitely some alternative in treatment for you that can improve your health. You should either discuss these alternatives with your current GP or call a gastroenterologist soon.

Bev

[rach73]

Hi

Thanks for your replies.

I had a hospital appointment today and I finally got diagnosed with EDS type 3 Hurrah!!!

I saw a rhumatologist who was actually quite helpful on the gastroparesis front and is contacting my other drs about my medications for sickness. Plus changing pain killers to patches so I dont have to eat before I can take them.

It was me who suggested to the GP about milkshakes as I needed something I fancied - I can't stand plain milk but I can drink milkshake. It was a question of getting some fluids and calories into me without making me sick. The milkshake worked, but I can't live on milkshake.

I had managed to drink enough fluids not to be dehydrated but when you drink at least 3 litres a day having a lot less than that the POTS notices!

I'm in the UK so it would mean a hospital stay for IV fluids and I can see pretty much only the Dr my GP refers me to.I can ask for a referral to see specialists in London but the GP will probably say no. I had to pay privately for the appointment today £250 - and no insurance.

The GP that saw me on Tuesday wanted me to cut down the domperidone in case it was the gut contractions making the pain in my stomach worse after it hadn't been moving very well for a period of time. Its either worked or coincidence as the pain has lessened. I am to slowly build it back up again.

I have managed to eat a little something today, I tend to try and stick to dry crackers - we don't have saltines in the UK. I have managed more fluids. I have been quite lucky as I haven't been vomiting a lot, its just the incredible nausea and then if I think about food my throat starts closing up - I think some of this is mental now as my brain is associating food with vomiting. The vomiting will get worse as the flare continues, at its worst it will be several times a day.

I am in a flare up at the moment and this will now last for months its just it has never come on this quickly before. I am back to only being hungry at gone 4pm and only eating small amounts as I feel sick so quickly. I am losing weight about 3lbs since Monday, give it another 14lbs and I will be overweight and not obese. The only upside of this condition for me. (sorry my sarcastic sense of humour). Not bad when you think I am on florinef and should be putting on weight with water retention.

Im sorry my first post was a mess as I wasn't thinking clearly and I may have given the wrong impression. Its a bit of a mess my medical situation as I have changed GP practice in March due to my previous Drs complete lack of action on anything. My new GP is now just trying to catch up and get on top of things.

Thanks again for all your support and suggestions.

Rach xx

[AppleScruffs]

I am so sorry you are going through this. I have gastroparesis...it was at its worst several years ago, with nausea and vomiting every day, weight loss, the works. Domperidone has been a godsend for me. I started at 40mg a day, and am down to 10mg and doing well. At the height of my symptoms, my gastro was thinking about doing a procedure where they inject your insides with Botox to keep everything relaxed and allow things to move through...the domperidone ended up being enough for me, but maybe that procedure is something worth researching for you? Good luck with everything and hang in there!

[rach73]

Hi,

I am sorry you have had the misery that is gastroparesis. The drs are just starting to take me seriously over this as they want me to take their medications but I can't due to the tummy troubles. Hopefully if they all get together and start talking to each other I may get some proper help.

The domperidone helps, but I still feel full and nauseous pretty much all day. Just feels likethe food is stuck there is my tum not going anywhere. But I guess you know that feeling.

I have the hospital again tomorrow with my Pots drs and the private dr is going to contact them to discuss things.

So fingers crossed

Rach xx

[mwise]

HI Rach73,

I agree with Bev about you being on the right diet and may be dehydrated. Google Gastoparesis Diets. I have Gastroparesis and the dietician at Cleveland Clinic in Ohio recommended a low fat diet. I actually count the amount of fat I take in because if I eat too much at a meal-oh the discomfort (pain). I am also taking Domperidone 20mg 4xday (before meals & at bedtime) along with Mestinon 60mg 3xday which helps with motility too. They were my life savers as I was ready for a peg tube and getting on the right diet and fluid intake along with the right meds kept me from needing the peg tube.

Some fluids and foods: Stonyfield Yogurt Smoothies & Products, Milkshakes using skin, soy or fat free milk, fat free Breyer or Walmart Brand Vanilla or Chocolate Ice Cream or other Light brands of ice cream and canned or fresh fruit (I make my own), Carnation Instant Breakfast, Slimfast-watch the fat content, Gatorade or Power Drinks, Different flavored fat free Broths, low fat or fat free Puddings & Custards, Apple & Fruit Sauces, Fruit & Vegetable Juices/Drinks; V8 Fusion & Tomato, Regular or Diet Sodas; Mountain Dew has the highest Soduim content followed by Dr. Pepper than Pepsi or Coke, etc...I was told to chew foods slow & well. Low fat crackers, pretzels, Lays Light potato chips, cream of wheat, eggs, low fat Smuckers peanut butter, well cooked/soft vegetables. Get the Calorie Fat & Carbohydrate Counter Book by the The Calorie King. His website is www.CalorieKing.com. It also has Sodium & Alcohol Counters too. I find eating more organic foods also helps. Walmart & Giant Eagle has a lot of low fat & fat free foods & drinks. I use "I Can't Believe It's Butter" & Pan for cooking. I also drink a mixture of 1 teaspoon of salt, 1 teaspoon of sugar to 1 liter of Water.

Hope this helps

[rach73]

Hi Mwise,

Thank you for taking the trouble to post all of that. Its very kind of you.

Rachxx