SEVERE Pain with Gastroparesis

He was diagnosed with GP about 6 months ago. Every since his diagnosis he has been having severe abdominal pain. We are in and out of the emergency room every other week. When he goes into the hospital they treat him with pain meds (Dilaudid) and that seems to aleviate his pain but when we return home he is in pain again. He does get nauseous and vomits sometimes but it's mostly dry heaving. I don't know if the pain meds are slowing his stomach down and that's what's causing the pain? My dad is always sick. He has lost about 30 pounds since his diagnosis and is very depressed. He says he doesn't even feel like a person anymore. I feel so bad for him and don't know what else to do to help him. Is this a normal thing that you guys go through with GP and is there anything that can give you some comfort? The only way he gets comfort is through pain meds. Do you think a pain management dr. might help? I am so clueless to this condition, we all are. If anyone can help or offer any suggestions it would be greatly appreciated.

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When I have been in the hospital and have pain, doctors try to give me morphine but if the doctor will prescribe anything else to me, I take something else because morphine will slow my stomach down.

I have had dilaudid. It works wonders. But my doctors won't prescribe it for me anymore now that they realize my blood pressure most of the time is no higher than mid 80's over something and medicine such as dilaudid, benedryl and adavant drop my blood pressure even lower. Its been 50 something over 40 something but usually after medicines it drops into low to mid 70's. Almost immediately after its injected through my IV, I am asleep. One time my aunt was visiting me when the doctor came to give me dilaudid. I was asleep before my aunt even had time to walk past my bed to leave. But that doesn't really say much because I fall asleep quickly on benedryl if injected through IV.

Rickey

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All pain meds slow digestion. I understand that even anti depression meds & anti-nausea meds have that effect, too. There are many GP sufferers who do take those meds, even tho they have concequences. The goal is to find something that makes the pain & nausea tollerable while having the least effect on mobility. It's a juggling act.

Has he tried a heating pad to his abdomen? Is he on the low fiber, low fat, easy to digest diet for the GP? No skins, seeds, raw fruits or veggies. He may have to go on all liquids for a time to get his tummy settled down. We all have to do that from time to time anyway. We have flare ups, sometimes out of the blue. Sometimes we "deserve" the flare up because we know we've eaten something we know we can no longer digest. It's an unpredictable disease.

Good luck. I hope this helps you a little.

Love & prayers, Gajudy

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Thank you so much for your responses. He hasn't really tried the diet yet because we don't really know what foods he can have. My dad is in the hospital today and has been there since Sunday. He is in so much pain even with the pain meds. He isn't eating anything and has lost about 10 pounds since last week. I don't know if the doctors aren't treating him properly or what's going on but it doesn't seem to be getting any better. Is this normal? I'm so concerned because it looks like he is fading away right in front of our eyes. You guys have made so many wonderful suggestions. This is a whole new world for us.

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My daughter ended up in the ER this week due to sever pain in the stomach. It was horrible and scary for her and us. They did a ton of tests and they are scanning her right now to find out if it is her gallbladder. Does that make sense? This is her first ER visit for pain. Is it normal to have pain with GP?

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My dad had his gallbladder removed about 2 yrs ago. He didn't start having problems with his stomach until after that. I have read that surgeries on the stomach may cause GP...I don't know. But my dad is also a diabetic so I think this plays a big role in his condition.

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my daughter will have extream pain with her GP. Mostly for her it's her pylorus spasing. they did botox injections into it and that is sooo much better. food did seem to make the pain worse and they would never give her anything but tylonal. i think it's horriable

tricia

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They are giving him Hydrocodone and it does not work for him. My dad is always in pain and it's very sad to see him like this. I am interested in the botox injections but don't know where to go or how much it cost? How long does it last? And any comfort for him now is better than this.

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The diet has to be the first step. I have a link to a gastroparesis diet on my bio page that helped me to back up and start eating again. It took a few weeks to feel better; but a lot of foods just had to go.
A few were: fruits and veggies not in a smoothie, red meat, fried foods, high-fat foods, dairy, whole grains (except for occasional oatmeal), chewing gum, soda, artificial sweeteners, and a concept of "mealtime". I have to graze all day. In fact, I have found digestive enzymes and probiotics better than any scripts. I guess you get used to the pain. When you know the cause, it's not scary and easier to live with. However, seeds, skins, and other food particals can cause bezoars, which can cause obstruction. Pain is a sign that something must change. I also have IBS with the gastroparesis. I have had to minimize antidepressants. However, once I started to regain nutritional ground, much of the pain and depression left. You kind of have to choose a lifestyle.
Also, if this seems to be on weekends, is he getting enough rest? Chronic fatigue can exacerbate pain. If he exhausts himself, he will have more problems. Most of us need more sleep than "normal people" and plan activities carefully.

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When he is in pain (which is the majority of the time) he get lie down to get rest. He just paces the floor ALL NIGHT! He walks hump backed when he is in pain and paces all day. He is currently in the hospital and is still in a lot of pain. They are treating him with Dilaudid (a pain medication). I don't know if it's slowing his stomach down and is what is causing the pain? Again, I am clueless to this condition. He was able to get a little relief last night and was able to sit up and talk with us for a while. He had gotten hungry and ate a half bag of Doritos, he also said that he ate a half of Salisbury Steak yesterday for lunch. By reading and doing research on GP I have learned that groud beef is not good for him. Do you think this could also be adding to his symptoms? He is a diabetic and when he is on liquids would it be okay for him to have a Glucerna (it a meal replacement)?

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#1 get all of his Drs. in for a consult. The PCP and the GI DR. have them review his meds and diet. Then do a physc consult. Anxiety meds also help to calm down the stomach and help take the edge off the pain. everyone is diffrent but stress is #1 with GI problems. See if that helps.

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I think one thing we have all discovered on here is that what one person can eat without too much pain doesn't work for someone else. Also, sometimes you may be able to eat something with no problem but then the next time it will almost kill you.
But, having said that...Beef of any kind always causes me terrible pain, nausea and vomiting. I could (until recently) eat chicken at times without problems but not always.
Some people have trouble with dairy products...that is one of those things that sometimes I can do and sometimes I can't but I would think trying glucerna or something like that would definitely be worth trying.
Unfortunately, finding the diet that works is pretty much just an experimental process.
Judy

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He met with a GI doctor yesterday and mention a pacemaker. My dad suffers with nausea but his worst symptoms is pain. They doctor also referred him to a nutritionist so I think we are on the right path. Today was a good day for him maybe because he is on pain meds (Dilaudid) but nonetheless he's having a good day. No pain, no nausea. It seems like each day is different, actually each minute. I was just concerned and wondering if this was a disease that could die from. The doctor said that he can't die from GP but he can die from the symptom???? (I'm clueless).

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Hi Jill,

Surgery on your stomach can "cause" gastroparesis. I had a gastric bypass and a few surgeries after due to complications and a reversal of the gastric bypass. Somewhere in that process I lost complete use of my stomach. Thirteen hours after I had eaten there was food in my stomach. Medications would not work. I have read that diabetics can also suffer from GP but that they usually respond well to medications to treat the problem. I think with the medical problems there are many other variables.

I had my stomach completely removed and now have the opposite problem most of the time. I am constantly going to the bathroom! I know when I had GP I was in the hospital for dehydration every couple of weeks and pain. They would keep me a couple of days, rehydrate me, send me home. I continued in that cycle for over a year.

Yes GP causes pain and lots of it! What to do about it, I have no idea. I had it for a few years and never figured out how to stop it without the pain meds. Wish I could be of more help. Good Luck.

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To begin with, let me say that I am so sorry for what you, your loved ones and your Dad are going through right now. It is a very scarey thing to have to deal with without knowledge. The first thing is gaining knowledge so your Dad can get relief. I am not trying to imply that he will ''never'' be in pain. What I am saying is that he will be able to ''tolerate'' the pain in a more managable way for him.

I am assuming the drs. have done an endoscopy. If not..............get another dr.! An endoscopy done correctly can show so much that would be quite helpful.

I was born with this disease and have been on pain medication since I was very young. I definately have had to make decisions on which was the best way to go with the meds because of the slowing of the motility and the pain. At times it is necessary for meds...in my personal opinion. There are many that have other opinions but as I and many have already said, "we are all so different in so many ways".

I have found "for me" that I have to stay away from all meats. There are times I am able to eat some soft foods such as mashed potatoes (my main staple), noodles and such. Then there are times like the last 7-8 weeks I have been on all liquids. Finally, my stomach and pain has started to give me some relief. BUT, next week I may be able to eat a baked potato and possibly some chopped green beans... or Pringles.

Each of us are "different individuals" and handle the meds as well as the foods differently. I am sorry to be talking so much about myself but am hoping in some small way it will help you.

I understand what you are talking about with your Dad walking the floor all night doubled over. I do the same. Does he throw up during or after an episode? Or do you take him to the ER before he has the opportunity to do so? The reason I am asking is that I will do that for hours and then finally begin to vomit until I throw up feces...still doubled over in pain. That can continue for 10-12 hours. Has he ever done that?

Let me add....when I am in that degree of pain I feel it is harder on my husband and daughter than it is on me. It is extremely difficult on the caregiver!!!

I will await your reply to the above questions before I go any further. I hope by this time the drs. have been able to consult and come up with some ideas in order to help your Dad.

Also, how old is your Dad? I don't have a special reason for asking. I guess it helps me picture him more clearly.

Love and Prayers,
Loie

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I'm so sorry for what you're all going through. I'll keep you in my prayers.

A few thoughts...

Having a dietician on the team (one who specializes in GI issues) can be very helpful.

Do you know if some of the pain can be due to bloating? The single most helpful thing for my son has been his g-tube placement so we could vent the trapped air (and, when necessary, liquids and small bits of food). My son used to get distended to the point of looking 8-9 months pregnant.

My son also has a j-tube (basically, a g-j-combo) so we can put meds and formula directly into his intestines, thereby bypassing the stomach.

The most important thing, obviously, is to have a really good GI doc.

Hang in there!

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pain doctors and blocks have worked for my daugther/also psy has greatly help.

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yes but can be controled with the right meds at home. what are the ages of your dad and caregiver

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it take alot of trying to find what will work for him but do not stop you find what works for your dad.
a loving dad who cares

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did she try pain blocks

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Hi.. your Dad is so lucky to have such a loving daughter. If I write something that has already been written, please excuse me, I did read thru all of the remarks, and hopefully won't repeat anything. I was much like your Dad, hospitalized for severe stomach pain. I was put on a morphine drip. If they are going to keep your Dad in the hospital for awhile, you may want to ask if the nurses can put in a IV line (if he doesn't already have one) with a light flow of saline so that his shots just go thru the IV rather than him getting pricked over and over with his pain medicine..

I was released from the hospital when the pain subsided a bit (10 days the first time, 5 the next, all within 6 months). The first time the doctors did several tests and in the end told me it was just a severe case of IBS. I went back home, back to all of my old habits. The second time I was hospitalized the doctors did the one test they had decided not to do 6 months ago - a camera pill which takes video as it goes through system, focusing most on the small intestine. A week after the test is when I had a call from the doctors telling me that I had gastroparesis. The scheduler at my GI doctor said they couldn't schedule me in for 3 weeks.. so again, I am at home in pain and nausea, and when I could eat I would eat the old foods that I was used to.

And then I started looking up information on this disease. And somehow I found this website. Thank God. The gal earlier who wrote about what to eat and not to eat.. it is so very important to follow those guidelines. I had been eating my Fiber 1 cereal at least once per day. All I was doing was making myself worse. With the help and support of all these people, by the time I went to see my GI doctor I was so much better. But not because of anything that they did. Fortunately I was prepared for that. You will learn from others on this site that most GI doctors are not well informed on this disease... they act like they are, but they aren't. There are hospitals around the country that specialize in gastro motility.. the Mayo clinic is one of them. If you wanted to ask the question where to go to get help for your dad from doctors who specialize in this disease, individuals on this site can help with that.
I do go to a pain clinic. My pain doctor is doing a nerve block in my stomach nerve (I have a blank on the name of it). I had this done the first time I was released from the hospital and it was a lifesaver. Here is my view of botox and pace maker: The problem that I've read about botox injections is that sometimes they work, sometimes they don't. Some people may have them work the first time but never again after that.. and if it is like botox on the face it has to be redone every 3 -4 months. My GI doctor told me he would never ever ever do a pace maker (I think that is what it is called).. though if you read about what the Mayo clinic is doing, they do think this is something that is more promising than many other things.

If it wasn't for this support group I don't know where I would be right now. I was so depressed and sick and nauses and the pain was unbearable. However, asking lots and lots of questions, just like you are, got me thru it... so ask away.. everyone here is so willing to help you and share their experiences.. best of luck to you and your Dad... take care.

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