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Gastroparesis, This is my story....

Jan 05, 2008 - 30 comments

Its a long story so I thought I would post about it for anyone interested in what it actually means.  : ) And I get tired of typing so much!  Here it goes....

Gastroparesis basically means that my stomach is paralyzed.  Its classified as "sever delayed gastric emptying".  I basically live my life nauseated, vomitting, and in pain.  Gastroparesis is usually associated with people who have diabeties, but mine is idiopathic (the theory is it MAY have been caused by my first pregnancy with my son).  There is no cure for gp, just two options:  feeding tubes or a gastric pacemaker (I've had both).  Before I got the pacer I vomitted around 16-18 times a day, now on a good day...maybe 5-6 times a day (even when I'm not pregnant).  Thats a drastic improvement, so thankfully I no longer have the feeding tubes (I had both a G and a J tube).

The gastric pacer is a great device, but I must say it was so hard to get!  There are only a handfull of specialist on gp in this country, thankfully I was able to find one locally.  The pacer cost about $41,000.00 and that needed to be paid in cash up frount before they would even touch me!  It was not covered by insurance because it was "experimental", used in under 4,000 people a year.  I went to the makers of the device and told them my story, they said they would donate it to me for free, IF my doctors would donate their time.  My doctor wouldn't help me.  I opened up an account for donations, and fought really hard to get my story in the newspaper and on the news here.  It took me a year, but I got my money, thanks to the Lord!  I got my pacer on May 4, 2006.  Its helped me so much, but it didn't end here...

I spend a lot of time in the ER.  Last Febuary I spent 22 days of the month in the ER, sometimes waiting up to 12 hours just to get to the back, not even seeing a doctor yet.  They got really tired of seeing me.  People can go in with broken arms and they can fix that.  My condition is chronic and all they can do is treat the symptoms.  I was starting to get labled a "druggie", so my doctors decided to give me a chem-port.  Its basically a device they implanted on my upper chest, they acess it with a needle, and I can give my own medications at home.  I have home health, so they change the needle for me once a week.  I usually hang about 3 bag of iv. fluids in a 24 hour period, I hang a bag of 10 mg Zofran every 6 hours, and inject 50 mg of Phenergan every 4 hours.  All of that and I still feel sick!  

I have my good days and my bad days.  If I don't ever get back to anyone right away, please don't take it personally, but I'm probably just not feeling well.  

: ) Thats my "sick girl" story, hope that can let you all in on a bit about me.  Thanks for listening, ever have any questions..feel free to ask!

Post a Comment
Avatar universal
by jslanec, Jan 05, 2008
i feel so bad for you. i really hope that maybe someday they can help you. i'm really sorry you have to go through that on a daily bases.  my heart goes out to you and you family.

Avatar universal
by Cow1147, Jan 10, 2008
Hello my name is Stacey,

I have Gastroparesis and I do not have diabeties.  I just had the pacemaker put in Nov 29, 2007 and it has not work for me yet.
I weigh 84 lbs and they removed my TPN line due to infection.  I also take zofran, phenergan, nexxum, domperidone, pain medication.  I can only keep down for the most part liquids and I get sick from that.  They told me if I lose more weight I will have to have a tube put in my tummy.  I have lost my voice from all the vomitting and acid I have to now see a throat doctor because vocal cords are not working.  I also have colitis which makes things rough on both ends.

I can not work, and I am worried about disablity.

How long did it take for you to get some relief from your pace maker?

If you have any suggestions?

Thank you and God Bless

Avatar universal
by Shelley230, Jan 24, 2008
God Bless you All. We will make it through this.
I was just diagnosed with Gastroparesis today.  I have lost 37 lbs in the past 4 months,I
had an E.R.C.P with stents and cuttings to my pancreas 12 weeks ago, I wonder if the E.R.C.P caused the paresis?  I never had trouble with food until August.
I am so happy I found this forum. I thought I was alone.
Shelley D.

Avatar universal
by Rodfan2008, Feb 25, 2008
I found this forum while trying to get information about Gastroparesis because a friend of 28 years who is 43 says that she has this disease. She is a Type 1 diabetic and has never followed her diet. These gastro symptoms started about 3 years ago and she blamed it on food poisoning at a local restaurant although there were no other cases at the restaurant. She has been taking narcotics for about 9 years, it started with 200 - 400 Hydrocodone per month as a result of dr shopping. For the past three years she has been in the hospital or ER hundreds of times. The last six months it has gotten even worse and has literally spent more time at the hospital than she has at home. Her treatment at the ER is always the same Dilaudid and Zofran. Lots of times she will leave the hospital, be home 10 to 12 hours and be right back. It seems to get worse every month. Her symptoms when she goes are: nausea, vomiting SEVERE stomach cramps, mental confusion and she says that all of her levels are off the charts, potassium is very low, blood sugar around 600 etc. I have thought for years before the gastro thing started that she was a drug attack. She would call me and other friends all the time wanting narcotics particularly hydrocodone. At least three hospitals have said that they will not treat her because she is a drug addict. No local docs will see her for the same reason. She has lost about 30 to 40 pounds since December, drags one leg when she walks, is losing her teeth, has places all over her where she has had MRSA boils cut out. She has a foot infection that she has had since Sept that does not seem to be getting any better. On top of all this she has an 8 year old son that really has no life at all. Other than going to school he has no socialization at all. My question is this: Does this sound like Gastroparesis? Drug addiction? or a combination? When she gets the Dilaudid she immediately returns to normal. If she has narcotics at home ( such as Norco) she seems to not have the cramps, nausea and vomiting but as soon as she runs out of pain medicine all that comes back. I really want to help her but don't know whether is really is gastroparesis or not. At this point she does not have a doctor and relies on going from ER to ER to get prescriptions and the Dilaudid/Zofran.
Does anyone else with Gastroparesis take pain pills EVERY day?

Avatar universal
by duke3z, Sep 12, 2008
Does anyone else with Gastroparesis take pain pills EVERY day?

I know I do, my daily pain meds:Clonipin 5mg 3x---morphine 15mg x2---trazadone 150mg 1nightly--Peracet 325mg every 4 hours as needed.  My other meds are: donperidone, ranitadine, nexium, and a bunch of vitamins.

Avatar universal
by anna01, Sep 15, 2008
Just been dxd with gastropareis, also have asthma which is just came off Prednisone, can Prednisone make gastropareis worst?

Avatar universal
by Coco307, Nov 24, 2008
I do not have diabetes either.  I was just in the hospital for a week and the Drs. ran quite a few tests.  They just diagnosed me with Gastroparesis, so I am online trying to figure out just what type of "sentence" I was just dealt.  Are there varying degrees of Gastroparesis?  I do not seem to have the vomiting (or is that coming?), I do have severe cramping to the point I can not catch my breath. But I was told this is just the gases in my stomach pushing on my diaphram.  After the last test I had, where I ate a radioactive sandwich they tell me my stomach is not emptying as fast as it should.  Then they hand me this diagnosis with no further information!!  Well excuse me, they did tell me to pick up my prescription "Metoclopramide"  that causes emotional instability?  What kind of specialist does this?  Anyway if someone could please answer this I would greatly appreciate it.  

Avatar universal
by muito, Feb 09, 2009
hello, i was diagnosed with gastroparesis about 4 months ago. I had been having probems for about 1 year before the diagnosis. I am on domperione and still have very bad days. I miss alot of work and am afraid i wont be able to hold down a job. I got married right before this happened. My wife is understanding but i dont think that she completely understands what we are going through. This is very hard, how one day im ok and the next day i cant leave my bed because of nausea and pain in my stomach. The worst thing is i love food, but on bad days if i even think about food i start to get nauseaus. Has anyone found anything that works better than domparidone? I have found that it works a little, kinda keeps the bad days not as bad for me. well good luck to you guys and hopefully they will find something soon that will help us, GOD BLESS!!!

Avatar universal
by jad46, Feb 16, 2009
by jad46 Feb 09

Hello from Australia I also have recently been diagnosed with idiopathic GP.
Is there anyone out there in Aus. suffering from this condition? I have been given no information regarding this condition other than to take a tablet(motilium) before each meal. I really don't like taking medication as I'm fearful of any side effects in the future.I have had to do all my own research and by chance found out about the stomachs inability to break down fibre & fat as I was not told this or how I would need to alter my diet to such a drastic extent.I seem to be able to manage the pain and reduce the vomiting if I am really strict with my diet and eat very little food although on a bad day it does't matter what or how little I eat or drink the pain is there and tends to builod up over the day.When I have severe pain the only relief is to induce vomiting in order to empty my stomach. In the beginning I was vomiting after each meal before I was diagnosed and since finding out about the kinds of suitable foods I can lead a relatively normal life albeit very restrictive.I have also lost a lot of weight in a short amount of time and often I am not hungry for a long period between snacks.  
Does anyone have severe stomach gurgling with GP. Does this have something with the stomach trying to empty but is unable to or is it something else?
Any information would be much appreciated. Last question do you think it's worthwhile getting a second opinion on this condition. I have heard the best way to manage it is by taking a holistic approach. One that takes diet etc into consideration in order to get the nutrients needed!!
Thank you

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by redgirl7_77, Mar 22, 2009
We are in a battle ourselves - my husband has been diagnosed with GP and we are very familiar with the constant ER visits and stigma of being thought of as a junkie.  thanks for posting  your story!

Avatar universal
by rayzilla, Sep 22, 2009
i am 47 have had gastroparesis for about 3yrs.and diabetes for 15yrs.starting in feb.2009 ive been in & out of the hosp.1st going to the ER after vomitting for hours also having stomach pain so at the ER they would try to put in an iv so i could get some fluids and meds.( dilaudid & zofran)  would be admitted to the hosp.stayed 6 days then at home for 3-4 days it started all over so back to the ER & hosp.this has been going on until now sept. 2009 now I'am told by the drs I'm a drug seeker & I've been in the hosp. more than home missing my 13yr old daughters basketball games and my other daughters 21st birthday all I I do is go to the hosp. I also have bad kidneys & neuropathy they have put a j-tube in my stomach for feeding I have been controlling my blood sugar levels now & I'm eating has changed so maybe things are getting better will see

Avatar universal
by wendysmiling, Oct 02, 2009
I'm 46 and have had GP for 6 years and am at a "liquids only" point. I wonder if the klonepin & trazodone I take make this worse by slowing down the body...hmmm?? I often wonder if it would be easier to just get a tube as it's SO hard to not eat. I try to keep a positive outlook and get so tired of smoothies and fresh juice all the time. So I eat and then am sick & miserable. It makes me cry.

Avatar universal
by arose35, Feb 11, 2010
hello I have been diagnosed with GERD and GP as well, I am only 27, but I recently received baclofen and aciphex to help with my symptoms. So far, they are the best meds that help me. However, I constantly have issues with my throat and swallowing, as if they there is something stuck in there. Is this a normal symptom of Gastroparesis? Also My Dr. told me he wanted to try a pace maker next if I was still having trouble. Is this a good idea?

Avatar universal
by ariel76, Mar 14, 2010
My husband has been DX with Gastroparesis for the last 5 years.  He suffered with it for about 3 years before being DX.  They classified it as "idiopathic, non-diabetic gastroparesis."  For 2 years his gastro MD had been pushing the gastric pacemaker.  He too frequented the ER more times that I care to count.  The bills were so much for us that we had to file bankruptcy because they were going to put a judgement lein on our house!  He suffers with crippling abdominal pain and viscious vomiting.  My kids often think that he is dying because it's so severe.  For almost 2 years his diet consisted of nothing but Boost and yogurt.  He lost 30 pounds in less than 6 months.  It has affected his ability to work, go to church, and be involved in my kids activities and pretty much anything that we do.  His stomach dictates his life.

In the ER, they just control the symptoms.  He would go there and they would give him fluids by IV, Zofran, Phenergan, and Morphine for the pain.  He would feel better for about 12 hours and then end up right back there.  There are times when he just stayed at the ER in the lobby and waited for it to return.  The nurses know him by name and knew exactly what he was there for.  His veins are shot because of all the IV's.  Every gastric emptying scan got worse (delayed emptying) each time.  It has now affected his bowel system.

In August 2009 it got bad.  The ER visits, the tests, the hospitalizations... it was just too much.  We inquired about this gastric pacer that his Dr's were pushing him to get.  So, I started doing some research.  There are only about 5 surgeons that are certified to put this thing in that are in the US.  Luckily, we have one right here in our town.  (Praise God!)  The issue was the money.  Our insurance would only pay for part of it.  (How retarded is that?)  They would pay for the pacer, but not the surgeon's fees, or the leads.  We were stuck with about $20,000 of the cost.

Time went on... months of ER visits, hospitalizations, consults... The surgeon really wanted him to get this pacer and claimed that it would control the symptoms and make the flair ups fewer, less severe, and further apart.  We simply did not have the money.  In December 2009, the surgeon contacted us and said that he would do the surgery for us for $1000.  The surgeon was willing to pay for some and we just had to come up with $1000.  Although that was wonderful, we still didn't have it.  I was working 3 jobs and still didn't have enough money to pay our bills and put groceries on the table.  Then our cars broke down and we had no vehicle!

Luckily, a friend lent us a car for as long as we needed it.  Now it was the $1000.  I started a website to raise the money for my husband's surgery.  I told everyone and told them to spread the news.  Any amount would be appreciated.  Within 2 weeks we had the money for the surgery along with the extra money that he needed for his dentures.  The Dr's said that part of the problem could be that he doesn't have teeth to chew his food and his stomach had to work overtime to grind it up and now, at age 39, his stomach age is that of a 75 year old.

On March 1, 2010 my husband has the gastric pacer inserted.  The first week was rough.  The incisional pain was nothing that he had ever felt.  It has been 14 days since the surgery and although he fights incisional pain, the gastric cramping and the nausea is gone.  He told me that he noticed it almost immediately.  There are still some issues that the Dr says that we have to work on.  He is on a low fat, low fiber diet.  He fights constant constipation, but in my professional nursing opinion, I think that now that his stomach is working his bowels have to catch up.  He is taking Lortab for the incisional pain right now which has a side effect of constipation.  I have him take a vegetable laxative at night before bed and everyday he takes Miralax.  We are beginning to get the constipation under control.

If you are considering the gastric pacer, if you can get it, do it.  It does affect different people differently.  For my husband, so far it is working.  We are hoping that he can return to work by the first of April.  We have been to file for disability and are awaiting a decision on that.  The surgeon says that it takes time and to feel the full effect of the device it takes anywhere from 6 months to a year.

I do know about 3 other people that have had them put in and they have all had success with it.  The Dr's say that my husband is the most severe case that they have ever seen.  He looks like a skeleton with skin right now.  But... we are hoping that all of that will change in the next 6-12 months.

I just thought that I would tell my story.  There is no cure for gastroparesis and there is not a lot of research that has been done on it.  If you can get the pacer, I recommend it.  It just might work for you and give you back the life that you deserve.

God bless you!

Avatar universal
by Claire6034, Jun 28, 2010
Thank you for writing you and your husband's story.  It was inspiring.
My daughter, age 23, had the gastric pacer implanted almost three months ago and we are still waiting to benefit from it.  She has been on a feeding tube since February and hasn't been able to eat or drink anything for almost six months, not even clear liquids.  Her spirit is broken and all she does day in and day out is lay on the sofa feeling severe nausea and stomach pain. On a good day she might throw up 3 or 4 times, but usually her days are bad and she throws up constantly.  She was in ER all day Saturday getting all her vitals back to where they should be.  
Her doctor told us to start with that ithe pacer would take at least six months to work, but I know we were hopeful that it might work sooner.  If I knew for sure that it would work eventually for sure it would be easier to endure this awful torture she is going through.  
Knowing how awful this disease can be, I am very happy for you and your husband that he has experienced the relief that he has.  It is wonderful.
My daughter has lost 80 pounds so far and cannot afford to lose any more.
Thank you for your story, it has helped me to believe that eventually things might improve.

Avatar universal
by rfa1978, Sep 23, 2010
I have been dx'd with GP.  It all started with a stomach virus in June.  All of June and July all I could get down were liquids.  My diet in June and July was fresh fruit juice, gingerale, and clear broth and saltines.  By July I was losing too much wgt and I added Coke, Boost etc to my daily intake.  By the first week of August I was too dedehydrated and had to have IV fluids (12 bags the first day just to compensate).  My GI doc did upper endoscopy (27 yrs of GERD and esophageal spasms, taking proton pump inhibitors since 1995).  He found nothing that should be causing all the nausea and vomiting.  Then he ordered the gastric emptying test and found GP.  He called me and stated, "Just eat six to eight small meals a day of anything you can keep down".  He never told me this was a life time illness.  Further, if I could not keep enough fluid down I would have to be hospitalized.  Well, I totally increased my fluid intake with fresh fruit juices, water with lemon, and non-diet soda.  I tried to get in as many calories as I could with fluids around the clock.  Since I was never able to lay down to sleep, I basically was in putting very high carbohydrates around the clock.  Then my Primary care ordered a general blood work panel and my glucose level was border line high.  He immediately diagnosed me as a Type 2 diabetic.  This makes no sense to me at all.  I started keeping track of my glucose and I changed from fruit juice to fresh vegetable juices like carrot, cucumber, parsley etc.  My glucose levels are never higher than 110 post eating and always in the mid-to-upper 80's fasting.  I got a nutritionist who does not agree with the diabetes dx either.  Can glucose levels be falsely high if all you take in 24/7 is fruit juices and soda?   Please help  

Avatar universal
by Mike541, Dec 01, 2010
Wow that brought tears to my eyes.  I'm soooo sorry for you.  Here I am grumbling about my case of GP and it doesn't even make me throw up.  My thoughts and prayers go out to you.(And anyone else with GP)

I know this may sound taboo to some..  but I am a medical marijuana patient, and let me tell you I think God himself created this plant for people like you and I.  The cannabis really helps my digestive tract!  It gets my digestion going and my appetite goes wayyy up!  It also takes a lot of the nausea away.  Really, from the bottom of my heart, anyone with GP needs to at least try Medicinal cannabis.  It helps with all of the aspects of it, including the depression.  

God bless you all  

Avatar universal
by kirstynC, Nov 29, 2011
I am 37 and was just dx with gp, in the 120 min test my stomach emptied nothing, I eventually threw up the test meal.  I have a history of cyclic vomitting syndrom which I attribute to the gp.  I know by experience the only thing that stops an episode for me is 1 ml of dilaudid and 4 of zofran.  But now my local hospital is starting to label me drug seeking (even after watching me throw up every 5 mins for 16 hrs) so now I am afraid I will not get what I need to stop an episode. I have researched it and found a few different tx's. Has anyone tried an injection of botox into the pylorus or lining of the stomach? Sounds the least invasive to me.

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by 1984sg, Oct 21, 2012

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by 1984sg, Oct 21, 2012
i have gp and man!! it has been very ruff. it all started 2 years ago i felt a huge pain in my uper abdomin and lower chest like heartburn but wey wey worse followed by uncontrolable vomiting and cramps in my stomach i thought i was dieing from all the pain..i got treated in the ER with 25mg phenergen and 2 mg duladid and i felt better went home 4 hours later
everything started back again. i got emited and GI dr said i needed my gal blader taken out i said ok !!please do what ever u must to take away the pain..they did and i still was having these same symtoms. i was scared im 25 at the time
and i just about lost my job from geting sick so much..i was later told after many test like gastric emtying, and stuff that i have gastrpparesis..well i later found out that when i get these bad pains and vomitng this is called a flar curently on reglan,bental,phenergon,and tilox for pain at home ..iv been  in and out of ERs like i live there. sometimes i get treated so bad sometimes  they think im faking my pain and im just trying to get high off of pain meds but i really do be in lots of pain. i mean literaly in the waiting room vomiting back to back cramping and falling on the floor in pain and they say im faking it but my medical records say i have gastroparesis. most of the time it takes iv 2mg dulaudid and iv 25mg phenergon to stop my flare up but some ER drs give me just one mg of dulaudid and say go home. and i still be in pain. its crazy how i get treated i read about plenty of others going threw the same thing. we are not faking this is very real and this has changed my life. my gi dr acts like im my pain is caused by stress and have tried giving me anti depresents
i wish it would all go away i was just in the hospital 3 weeks ago for 9 days and i cant go a whole two months without geting a flare up somtimes i get them back to back and have to get emited to get my body under control ..i use to have a normal life i was a electrical contracter now i can no longer work contruction . i dont have ensurance and dr bills are threw the roof. if anyone else has this same sickness pleas email me its ruff going threw this alone ***@****

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by 1984sg, Oct 21, 2012
At first they doctors said I had a bad gall bladder and it should get better once they remove it. I still continue to have chronic pain in my upper abdominal area vomiting. Non Stop and cramps very bad and one bite from a meal and I would feel full. Other times I was normal. I have these flair ups all the time and have to go to the ER to get IV Dilaudid and Phenergan to control it. It's bad. Doctors are starting to turn me away thinking I'm addicted to pain meds. I'm tired of going through this. They said I have idiopathic gastroparesis

Avatar universal
by ajt123, Feb 20, 2013
I also suffer from it...  had it since 2007 lost a job i had for seven years..i think the hospital got us hooked on this **** and our bodies cant get right wit out it. Then they protect themselves but calling us junkies. I going to talk to a lawyer about this mess this is crazy i thought i was the only one out here i had no idea so many people are going threw this

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by jayz505, Feb 20, 2014
I have been diagnosed with idiopathic gastroperisis as well also been called a drug seeker but only the iv dilaudid and phenegran help with these flare ups we get am I the only one please email me if you are going thru this at ***@****

Avatar universal
by skinny22601, Jun 01, 2014
I was just diagnosed with go. Does anyone else suffer from back pain where your kidneys are located?

Avatar universal
by skinny22601, Jun 01, 2014
"gp"not go

Avatar universal
by Loock33, Jul 06, 2014
I have been diagnosed with C.V.S aKa cyclic vomiting syndrome for 6 years now it seems nobody but my GI doc knows what it is and how to help me the ER docs always want to run test after test only to have them return normal and they still try fix it when there is no cure. They just have to treat the symptoms. However every rime I go to the ER they always think im seeking drugs and I'm sorry but drugs are so much cheaper on the streets then going into the ER for thousands of dollars..My GI doc god bless him has listed in my charts  what to do when I end up in the ER and can't manage the symptoms myself at home,there are some of the ER doctors who will listen to my GI and give do which is giving me the proper medications to limit but not take away the symptoms of C.V.S aKa cyclic vomiting syndrome but half if them tell me it's all In my head even though it's charted in mile long novel of medical records to give me what is need to help me fight the symptoms of a cycle which is a "cocktail" as the doctors will call it of zofran piggy backed by phenegren Ativan and dilaudid other refuse to listen to my GI who is the best GI In my state and think they are a higher power and can heal a non curable disease. I have been treated like I'm a herion addict and just seeking drugs too someone who is crazy and should be Iocked up in the nut house. If you have never walked in my shoes and experienced what I have had to live with the vomiting and abdominal pains the dehydration pains and migraines will never understand until they have actually walked in my shoes and know what it's like to live with this debilitating disease then they have no right to judge me. I have been in and out of the ER or the hospital for days at a time that I have lost my job which I had for over 12 years only taking time off for vacations with my amazing family but  now my vacations are spent either on my couch or in the hospital and it has taken a Hugh chunk of my soul and a great burden on my family physically mentally and financially which will never heal... Luckily my amazing family I mentioned are always there to support me every way and I could never do it without them by my side!!! Stress is the main factor In my cycle the doctors tell me to get rid I all the stress in my life which as we all know now days is way impossible to eliminate stress  with all the worries of raising my kids who are teenagers trying to have a normal childhood, but have had to grow up way to fast to take care if their sick mother who is working 2 jobs all while trying to be normal  and do the "normal" family traditions. I have grown to accept that this is my life but it's so unfair for them to have to go through it with me. If anyone out there has any advice I would really appriciate any tips to help In anyway to make this a lot easier to handle. Thanks for letting me vent to someone out there who may be going through this faceless disease. I am growing more and more tired of going on this way, I know it could be worse it could be terminal which i am eternally greatfull for that everyday but going In and out of the hospitals one day human error may land me 6 feet under sooner then I'm ready for. My veins  are all shot and I have been referred to a surgeon to have a porta cath to eliminate the nurses from having to poke me a million times to get the IV me to give me fluid and the medications needed to survive the cycles and I have no clue how that would affect me or if it would put me in more danger again any advice would be appriciated ***@****

Avatar universal
by suestrong, Jul 22, 2014
I also have gastropresis. My doctor did surgery to re pare a her in a in 2013. He paralyzed my diaphragm and I was on a machine for 5 hours I couldn't wake up and my of bottomed out. He caused my lung to fill up with fluid. And paralyzed my stomache. He will only tell me I had a very complicated case. I was in the hospital 5 days. When I was sent home and was able to eat. I started throwing up. Called the doctor and he blew me off. When I went to see him he told me I have gastropresis. From that day til now I throw up every thing I eat or drink. I go to the e.r. and they act like like I'm crazy. My surgeon finally sent me to a gastrologist. He did test and is sending me out of state to see if I need a gastric pacemaker. He has tried raglan and I thought I was dieing.ang my heart waves are off so I can't try any other meds. He don't want me on narcotics so I have been flushing them each month. I'm suffering . I am against the pace maker but he thinks it's best if I try one. My surgeon can do an open  stomach surgery but he said it's to risky. So I'm sorta left in the dark. My heart goes out to everyone suffering with gastropresis. It's a night mare. I have lost so much weight. At first I had determination to eat even tho I threw it back up. But i was throwing up 14 times a day. I'm weak and can't handle my esophagus being raw. So I don't try to eat anymore. Liquids only. And it's hard because I like food.  So my thoughts are with all of you that is suffering with gastropresis.

Avatar universal
by HC205, Aug 23, 2014
I don't understand why our doctors can't put something on file at the emergency room so that when we come in they know we are GP patients and not drug addicts! I'm down 31 lbs in  the past 6 weeks and will soon be getting a feeding tube. I feel my Gastric Dr's are Top notch but they themselves warmed of the "druggie" stigma this disease carries. Shame on the ER staff for not being better educated.  P.S. GP *****

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by hrv32817, Nov 08, 2014
My husband has a severe case of GP.  About 10 years ago he started with neurological and pulmonary problems that the doctors could not find a cause for.  He has had sever pain caused by neuropathy which the doctors have treated with morphine.  By June of 2012 he was taking 235 Mg a day for the pain and it just barely easing the pain.  The pain was so bad that he could hardly walk.  He had told me he was on a diet (the reason he was not eating very much)and lost about 35 lbs.  But then he got really sick and his stomach swelled up like he was 9 months pregnant.  It was them that he told me that he could not eat.  Our doctor put him in the hospital.  For the next 12 months he was in and out of the hospital with several stays in ICU, he almost died twice.  Some of the doctors told him his only hope was to stop the morphine.  By this time he has lost 115 pounds.  He was 6' 5" and weighted 130.  Our family doctor said they where all crazy if they thought he could stand pain of stopping the morphine.   I started investigating other alternatives and found a Dr who would put in a pain pump for him.  He had the pump installed in February of 2013.  Dropping his morphine dose to less then 1 mg per day.  His digestion improved, he started eating and over the course of time gained 55 pounds.  However by the end of 2013 he was having problems with chronic constipation.  His stomach swelled and once again he looked like he was pregnant.  There was a drug that helped relistor but our insurance would not pay for it and it cost $1200 a month.  So he eventually ended up seeing a surgery who recommended to have 60% of his colon removed.  On April 1 he went in for the surgery.  After the surgery the dr told me it went so well that he probably  would be home in less then a week but they had had to take out 90% of the colon.   This started what was to be an 87 day stay in the hospital.  His doctors lied to him at every turn.  He could not eat or drink any thing, nothing stayed down.  They put a tube down his throat to suck out his stomach.  He was so miserable he talked about just stopping every thing and going home to die.  They tried to put in a j peg tube 6 different times but because he also has a partially paralyzed diaphragm his stomach is up in his rib cage  near the arm pit.  I didn't even know this was possible.  Finally the surgery went put in a peg tube to drain the stomach, but could never get the feeding part in because of the shape of his stomach.  He went home with TPN, stomach drain and a promise from the surgery  that this was all only temporary.  He would be fine the drain would be removed in a month and he would be able to eat again shortly their after.  None of which ever happened.  The peg tube was in for almost three months and now almost 8 months later he is still unable to eat and barely able to drink any thing.  He is tied to an IV 18 hours a day.  Now other doctors are telling us he will never be able to eat again.  He has one the worse cases of GP they have ever seen. They said that his small bowel is also not working and that a feeding tube would not work for him.   Apparently they suspected this 8 months ago but did not want to tell him.  All the things they did to him did not help and never will.  His digestion just shut down after the surgery and will never work again.  We are currently looking into the gastric pacemaker but the local dr who does it here will not do it because he has a pain pump.  He will not do this surgery for any one who has been on any kind of pain meds in the last 6 months.  I am still looking for a doctor would do the surgery but no luck yet.  If any one knows of a doctor who would do this surgery on a some one who is on pain meds please let me know.

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by Maranta, Jan 23, 2015
I was dx 2 years ago and it first started with acid reflux, then vomiting.  I was admitted to the hospital due to dehydration and about 3 months later had the stomach emptying test and was dx.  I do like my GI MD but saw the PA when I got the results, she gave me a hand out and sent me on my way.  I cried.  I missed a lot of work but did eventually get better.  Up until 1 month ago I thought my GP might be almost gone.  However I recently had a flare up, back to losing weight, bad acid reflux and stomach pain.  I am much less nauseous then when I first was dx but now having a lot of intestional pain, bloating and cramping after eating with loose stools.  This seems to be new for me. Anyone else have this?

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