Newbie to the Group

I was diagnosed with gastroparesis on 8-15-09. Although I had the upper abdominal swelling and discomfort for quite a while but just thought I was getting fat.... I have to say the nausea is the worst part. I quit taking the Reglan because my lip started shaking and the side effects scared me. My dr. gave me Phenergan and that works but I have a 4 yr old and I hate being drowsy all day and not "having my snap" with him so I only take it when I am super desperate. I have to say my biggest problem is I can't eat all day because I am so nauseous so at the end of the day I am starved so I eat something - which i know is the worst i can do. Eating one big meal a day. So I am open to any suggestions on how i can make myself eat during the day even though the thought makes me wanna puke. I feel so alone, it's hard to talk to my husband because i know he get's upset. When I have my bad days and I cry, it's with my sister's and they get sad. Then I feel bad for them. I go for my 1st monthly check-up today so I will see if anything is going on. I just turned 40 and look like i'm 6 month's pregnant and I wanted this year to be a "turnaround" year for me - i joined a gym and was gonna lose a bunch of weight and tone up. Well, that dream is now gone. Sorry for rambling, this is new to me and I don't have many people to talk to... any help is greatly appreciated...... thank you.

By Lynee
Posted September 30, 2009 at 2:30 pm
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Welcome to the group - you will get some good advice here as we've all been through collectively quite a bit. I see you are taking Phenergan and I absolutely couldn't do it. I have to work and it made me into a zombie. I just started on Zofran and am finding it to be much better. I don't get as nauseous and it doesn't make me sleepy either. It's what they give to cancer patients going through chemo and is kind of expensive. My insurance co. denied it the first time I tried, but the docs persevered and it was finally approved.

I hear you about not eating during the day - I am always terrified I'll be sick during a meeting or have to jump up and leave so I eat tiny bits throughout the day. Even a few Cheerios or oyster crackers help me keep my blood sugar up so I don't crash. I also like to eat in the evening when I can deal with everything if it happens, but have to eat a few bites and then stop. I'm not saying it's easy because it isn't, but you have to keep thinking about those darn consequences.

I'm glad you have joined us, hopefully things will get better for you.

Lynee

By Bensmamma39
Posted October 1, 2009 at 1:55 am
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Thank you. My dr. prescribed me zofran today and i took it and it didn't make me tired at all. He's going to do a procedure next week that basically "pressure washes" out my stomach as he thinks i have hard balls of food in there and that's what's causing my major discomfort.
I saw the struggles you are under with your tube (trying to tape it in place) and your husband. I am so sorry and I hope things get better for you very soon.
Can I ask does everyone end up with a tube eventually? or is it just some people? i don't want to burden you, i know you're going through alot.
God bless you and your husband, i hope he stays stable until his surgery Friday. Thanks for your help.
Denise

By Juhint
Posted October 1, 2009 at 1:24 pm
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Hi Denise!
I am quite new to the group here as well. I have had delayed gastric emptying off and on for the past twelve years. I have had better and worse times. I did end up with a feeding tube last December (first ng, now g-button). Even though having a feeding tube sounds pretty scary and awful it actually makes me feel so much better, that I wouldn't want to have it any other way now. I was just not able to maintain my weight without tube feedings and gaining weight orally was not possible for me due to the increased nausea. I guess I am better off than some others here, because I am still able to use my stomach for feedings and didn't have to resort to a j-tube. I tube-feed during the night when I am asleep and sometimes on really bad days during the day as well. My fiance and I have really gotten used to the noise of my pump running and he always jokes that he can no longer sleep without that distinctive background noise.
Have you seen a nutritionist or dietician? Having a good dietician has really been helpful for me, there are quite a few dietary guidelines that can help you keep a bit of food down.
I am sure other users with more experience with gastroparesis and tube-feeding will chime in as well. I just wanted to let you know that you are not alone out there feeling the way that you do!
Take care,
Julia

By prettykitty
Posted October 1, 2009 at 1:48 pm
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I was diagnosed with gastroparesis last December and got a GJ feeding tube put in Feburary of this year. All I know is that feeding tube has been wonderful for putting my medicines through, because prior to this, my meds weren't being absorbed due to the fact that I was puking all the time. If you do decide on a feeding tube, the docs will most likely put a J tube in you, so your meds and some supplemental formula will bypass your stomach and will make you much less nauseated.
Currently, I'm on Zofran, Reglan, and Prilosec for the gastroparesis symptoms. I like the Zofran, because it makes me much less sleepy, but like you said, its pricey. Most insurances will cover it after your doctor writes a letter of medical necessity (that's what my doctor did for Medicare to pay for it).

As far as eating, I found that if I eat small amounts every 2 hours, I don't throw up nearly as much. The same with fluids: drink 1/2 cup every hour, instead of a huge amount all at once.

Jessie

By Lynee
Posted October 1, 2009 at 3:44 pm
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Hi Denise,

Not everyone ends up on tube feedings, they usually put them in as a last resort to make the quality of life better. In my situation, I just couldn't taken in enough orally to gain weight. I'm lucky because I can still eat small amounts. Isn't the Zofran awesome? I can't believe the difference it has made in only a week. I still can't eat any quantity, but the nausea is so much better. Hopefully it will keep being effective for me.

Things are settling down for me a bit and having the tube taped in hasn't been that big of a deal so far. It isn't ideal, but I don't have time to have it changed out right now. That will have to wait for next week.

Thanks for the kind words and good luck with your procedure next week. Hopefully they can get rid of whatever is causing you so much trouble.

Feel free to ask as many questions as you need to, there are lots of people here who have vast amounts of experience with this ridiculous condition. You will find that we are all a bit different which is why it is such a hard thing for the doctors to treat.

Lynee

By Bensmamma39
Posted October 1, 2009 at 5:09 pm
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Thank you Lynee for taking the time to answer my question especially when you have so much going on in your life right now. I take it your husband is staying stable for his surgery tomorrow? I pray everything goes well. You are such a strong lady and I admire strength. You & your husband will be in my thoughts tomorrow.

By Lynee
Posted October 1, 2009 at 6:35 pm
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Thank you so much, he is doing well today and we're getting prepared for tomorrow. I'm very confident in his care, he has good doctors. His problem is he isn't a very good patient. It's hard for him to stay down for any length of time - he's an athlete and wants to be on the "go" all the time. We both used to participate in Ironman triathlons and he would very much like to do another one. My Ironman days are over, but I would like to watch him do at least one more.

This "getting old" business is definitely not what I envisioned it would be.

I do appreciate the thoughts and prayers, I'll let everyone know how things go tomorrow.

Lynee

By LizAA
Posted October 1, 2009 at 8:58 pm
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Denise,
I am in such a similar situation as you!! I also have a 4 year old child and have GP. I've pretty much taken meat or heavy things out of my diet, and I've seen some improvement with that. My stomach seems to work best in the morning so I usually mix two packets of Carnation Breakfast shake with fat free milk to get some vitamins and calories. Lunch is usually light like mashed potatoes, sweet potatoes, soups, or other soft things that are also low in fat. Supper is usually not more than a few sips of skim milk and maybe a small graham cracker. I rely on a lot of hard candy and gum for calories and keeping my blood sugars up. I do get some slight nausea in the afternoons. I am worried too about getting to the point of being so sick that I'll be on a feeding tube-not so much about the tube, but the nausea and taking care of my son, and my husband is leaving for Iraq.
I just pray for the best for all of us!
Liz

By Sanford
Posted October 2, 2009 at 6:35 am
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Well, Howdy to the newbies. I was diagnosed with gp in 12/04 and got my first tube on 6/1/05. I now have separate g and j tubes. I too went through the horrible acid reflux and vomiting, and prior to the tubes, had been on every medication known to man, including botox to the sphincter at the bottom end of the stomach. After much trial and error after getting the tubes, a doctor prescribed Ranitidine syrup, which I pump directly through the j tube at night with water, et voila! Reflux is gone.

By LizAA
Posted October 2, 2009 at 10:08 pm
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Sanford-
I know you can sometimes have nausea and reflux with j-tube feedings. You pump the Zantac and it seems to help you. But doesn't the GP make you have any nausea, or does the Zantac also help with nausea from that too?

By Sanford
Posted October 3, 2009 at 7:15 am
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The zantac helps that; I never had nausea from the jtube feedings unless I feed too fast (above 125ml an hour and actually 50-75 is waaay more comfortable). But the Zantac syrup is terrific. And I did a lot of research before I started with it. First of all, some of those nausea meds are designed to survive the stomach and dissolve in the intestine (they have what's called enteric coatings), so I didn't need oral medication. Second, a lot of the meds have xanthan gum in them, which is what makes chewing gum chewy and salad dressing clingy, so it would've clogged the tube. I kept asking for a liquid, and was prescribed Prevacid suspension. It doesn't dissolve in water (of any temperature, including boiling) and the suspended particles don't fit through the tube anyway, but it made me suspicious, so I called the manufacturer. They don't like talking to consumers but I finally got them to tell me that it had xanthan gum in it. Some genius, though, and I can't remember which doctor it was, suggested the Zantac syrup which is a genuine liquid. It's meant to be taken orally and actually doesn't taste too bad, but it works in the intestine anyway, so it's perfect for pumping. And I rarely get the acid reflux, and on the rare occasions when I do, it's nowhere near as bad. I've been on the zantac a couple of years now, and I can count on the fingers of one hand how many times I've vomited since then.

By Sanford
Posted October 6, 2009 at 2:40 pm
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Gastroparesus, malabsorption, and low motility. And if I miss even one dose of Zantac syrup, which I pump through the j tube (I have separate tubes), the reflux is horrible and I throw up

By prettykitty
Posted October 24, 2009 at 1:31 am
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I have found that ginger tea can sometimes help with nausea, especially if you have "evening nausea". My caregiver will make me some of this if I don't feel well, and it helps to keep fluids in me better, since I get dehydrated easily.
Another thing you can try if you can't eat solid foods easily is to drink supplements like PediaSure or Boost. I found that these two supplements taste a whole lot better than Ensure. I keep several cans of PediaSure and that Boost Kid Essentials in my fridge for when I don't feel good due to my gastroparesis.

I pump most of my medicines through the jejunal side of my feeding tube. There's only 3 that I have to swallow and its because they can't be crushed.
As an absolute last resort if you don't want to get a feeding tube yet, you can always try medical marijuana for nausea. I only use this if I am very ill and NOTHING will stay down and I get too nauseated even putting stuff through my feeding tube. This at least makes it to where I don't have to go to the emergency room for IV fluids. In certain states, its legal to get a green card for medical marijuana, so you'd have to look up to see if your state is one of them (In WA state, it is).

Jessie

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