I'm writing this to share the angst and frustration that I am feeling because of the way the health care community are treating my son. For the past year and a half my son's gastroparesis has become increasingly worse. He has been in practically every hospital in Jacksonville, Fl. He's also been in the Veteran's hospitals in Little Rock, Ar., Gainesville, Fl. and Lake City, Fl. The chain of events that occured that would cause my son to go to the hospital are as follows: He would eat solid food and be fine for 24 to 48 hrs. then he'd get severe nausea, vomiting, sometimes diarrhea and then the pain. From his stay in the VA in Little Rock, he was put on dilaudid for pain. That was over a year and a half ago. Now fast forward to the present my son now has a feeding tube and spends most of his time on earth in one hospital or another however what we encounter in these "bastions of care" are doctors who tell my son he is addicted to the dilaudid and he shouldn't be in the pain he "claims" he's having! Despite abnormally high blood pressure and sometimes (like today) low grade fever (he has C-def). He's been put out of hospitals and told there's nothing more they can do for him. He's been accused of sneaking alcohol into the hospital because he started vomiting again on the day he was to be released from the hospital. They did a urine analysis and it was (of course) negative. I have spoken to patient advocates and nurse managers at several hospitals to no avail. My son has now been in the hospital for approx. 3 weeks. He had started to eat solid foods as he says the feeding tube is not working properly for him. However, about three days ago the vomiting started along with the pain. The doctor ordered dilaudid every three hours for pain. Then he was moved yesterday to another floor and a new doctor was assigned. This doctor put out orders to only give him dilaudid in the IV every six hours or take the dilaudid pills every 4 hrs. My son is in excruciating pain. I asked the nurse to call the doctor she said that he wouldn't chg the orders and that tomorrow he's taking him off the dilaudid completely. It seems he's punishing my son because he won't try to eat (at this stage that wld cause more vomiting and more pain) and he won't take anything thru the tube. The argument is that he takes his meds by mouth so he should be able to take the pain medicine by mouth and it will work. Finally the nurse called the doctor as we had requested and he said he would not come and talk to us he explained it all to my son this morning. He will see him in the morning and don't call any other doctor tonight! (These doctors are hospitalist as my son is on SSI so he doesn't have his own private doctor.) So I asked the nurse if the doctor read his chart from the other floor that he was on and that he had tried to eat food but because his stomach is not working the vomiting started. She said the doctor only goes by what he's seen since he's been on that floor! So, tomorrow morning I am going to my son's room very early in hopes to talk to this man who seems to have forgotten the hipocratic oath that he took. There's so much more I can add but I've gone on long enough. I just needed to vent. Thanks for listening. God Bless you all who are going thru and for this wonderful vehicle to express ourselves.
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My son's plight with gastroparesis
- By Praise4
- Posted October 8, 2009 at 9:51 pm · 12 replies
- In Coping with chronic illness
- Shared with the public
Explore topics in this discussion:
Surgery Phenergan Fentanyl Methadone Gastroparesis Fever Vicodin Morphine Pain Diarrhea Nausea and vomiting
12 replies
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- By Lauren2006
- Posted October 8, 2009 at 11:06 pm
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Your story literally made me cry! It seems like almost all of us with stomach problems get accused of either it being somatic, or of it being an eating disorder. However, sneaking it into a hospital is a new accusation that I have never heard of.
I think what makes me most mad is that you can be sick in almost every other part of your body, but if its the stomach, even if its something bad, it's still "in the head". This way of thinking NEEDS to change.
Honestly, I think its best to try to go the hosp early tomm. IF they continue to treat him this way at this hospital, I would honestly start documenting things that happened and the date (starting with the accusation of alcohol in the hosp and the negative urine test that followed) and talk to a lawyer. I always say that I would always take feeling good over money, but if talking to lawyer and/or litigation is what it takes to get him proper care, so be it!
Good luck, I care about what happens.
Love,
Lauren
- By yourfriend
- Posted October 9, 2009 at 12:30 am
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Your post brought me to tears. It felt like I was reading my own life story. I was on pain meds for 3 years (Morphine, Methadone, Fentanyl, Dilaudid, Vicodin), and was forced off of them in June. I was forced to go through detox and now I am not given anything to help the pain anymore. Actually, that is not true. I am allowed 2 Vicodin tablets a day, but it does nothing to help with the pain. None of my doctors believe that I have pain. How can you fake pain? I am in the hospital constantly and they used to give me pain meds in the hospital to help me over the worst of it, but now they say "no". I''ve begged for the nurses to call the hospitalist, but they say there is a note on my chart not to call for pain meds. Today is a really bad day for me. I had surgery 2 days ago on my achilles tendon, and the surgery turned out to be much more involved than anticipated. (Surgery was supposed to be <2hours and it was >5.5 hours). My pain is actually doing pretty good because the ortho doc gave me pain meds, but the excrutiating nausea and vomiting are about to put me over the edge. I call my PCP today to see if she could call in injectable Phenergan because that often works better than oral, but she told me to go to ER or come in to her office which is almost 2 hours away from me. I am so sick to my stomach I feel like taking a gun and sticking it to my head. Unfortunately, (or fortunately), I am afraid of failure and I would probably be in more pain if I failed. I just don't understand why the medical community can't or won't treat this very real disease. I am miserable living like this, but I don't know what to do anymore. I have tried everything. I have a j-tube, gastric pacer, tons of meds, etc. I asked for a g-tube to vent, but was denied due to increased risk of infection with the pacer. Sorry to vent. I actually just wanted to tell the mom that I will pray for her son. We've got to stick together and pray for one another. I know there has got to be a solution---soon!
Karen
- By Praise4
- Posted October 9, 2009 at 6:51 am
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Dear Lauren2006,
Thanks for your care and concern. I am on my way to the hospital and praying God that someone will have compassion. You take care of yourself and I'll be praying for you.
Love,
Praise4
- By Praise4
- Posted October 9, 2009 at 6:57 am
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Dear yourfriend,
I know we are not alone in this fight and I know that we can't give up (you can't give up). We have to trust that God has a plan for our lives and we have to play it out until...
I'll be keeping you in my prayers.
Love,
Praise4
- By plushy
- Posted October 9, 2009 at 12:08 pm
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Yourfriend and Lauren,
I am so sorry you and your loved ones are going thru all of this, it makes me angry that no one will take the pain to be truth when we know it is. There has to be someone out there who has a doctor who cares or i at least pray there is
YOu are in my thoughts and prayers
marie
- By Lauren2006
- Posted October 9, 2009 at 9:03 pm
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How did it go today? I thought of you today. Let me know when you get a chance. I hope at least something changed for the better.
Love,
Lauren
- By NancyL
- Posted October 10, 2009 at 10:54 am
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I am so very sorry you are going through this. Your story reminds me of my brother's. He was in excruciating pain. And several doctors thought he was faking it to get pain meds. It took a long time to find caring docs who really understood what was gioing on. It helped a great deal that I had been documenting every doctor visit, hospital stay and medication along with the doctors recomendations and treatments. I put the information together in a notebook with clear plastic inserts. I highlighted the meds and got as many copies of test results as I could and added them to the book. That helped the docs understand that we really were trying hard to figure out what was going on medically. People just looking to score pain drugs would not go through that much trouble.
I hope you find a caring doctor soon that can offer you relief.
Nancy
- By mcmarie
- Posted October 12, 2009 at 4:13 pm
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Praise4,
I just want to throw this out into the ether for all these doctors......
Do they have any idea how EASY it would be for all of us to become drug addicts? To just say screw it and get hooked on pills to numb our LEGITIMATE PAINS and to numb our emotions so we don't have to suffer anymore.....but guess what? We aren't. Instead we are working hard to stay positive and be strong for our loved ones.
You just have to remain positive. It takes time to find a doctor that doesn't have their head up their toot!
Like so many of us here, we feel what you are going through. If these docs had any sense....just one, they would see how strong we really are...and how easy it would be for us to go bad...but we don't. We want to feel better and we are using our mind, body and spirits to do it.
Hang in there. I wish the best for your son.
- By Gailete
- Posted October 13, 2009 at 11:33 am
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I went off my huge legitimate Morphine prescription for my RA pain and switched to Methadone which I have almost also quit taking because the side effects of those meds were making the GI symptoms so much worse. Am I in pain, YES. But I don't show any pain med seeking behaviour. When people have multiple medical problems, they need support from their doctors not condemnation although when the doctors treat patients like crap and imply faking to the nursing help if nurses also don't believe you in the hospitle it can get rough. Hopefully you can get some good nursing staff on your side that acurately report your sons symptoms and behaviour. Docs see a patient for only a minute or two a day in hospital, you need to pump up the nurses! I was a nurse and i now how the systems works and with the system falling apart these days too, you need to work even harder to get support of the nursing staff. Their notes should document his behaviour and problems and be able to support what he is saying and having problems with. If nothing else, bring them cookies/snack to catch their attention that you just aren't a troublemaker but a concerned parent!
- By Praise4
- Posted October 13, 2009 at 12:15 pm
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Thanks to everyone who has responded to my long litany of frustrations and concerns for my son. I'm sorry I hadn't gotten back to you in a few days but exhaustion took over. But praise be to God our Father only He is able to lift me up when I'm down and thru His Son Jesus , gives me the strength to go on. Right now I've been on hold for what seems like forever waiting to s/w the social worker at the civilian hospital my son has been in for the last three weeks, to find out the reason they say the VA hospital has refused to transport my son to their facility. When I called the VA hospital (after several calls) they finally tld me I wld have to call the hosp. my son is currently in to find out why they won't admit him to their hospital. Finally, well I was tld she'll call me back. So we wait...! To back track a little, I went to the hospital early last Friday hoping to meet up with the doctor to try to convince him not to cut my son of the pain meds so drastically because of all the pain he was in. When I got to the hospital he was balled up on the floor in pain and continuously vomiting. His blood pressure at one point was 144/117 with a low grade temp of 100. Finally the doctor came in and after some intense discussion, he finally allowed my son to be put on pain meds every three hrs. but said in so many words this is on you, your condition will get progressively worse and the pain meds won't work. Since then he's tried to eat but the food still comes back up and the pain is still there but not as intense. I pray for the day he can get off these drugs completely or some breakthrough in the research can come out to give some comfort to those of you who a suffering with this disorder. I know that my God is able!
- By mcmarie
- Posted October 13, 2009 at 10:00 pm
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Gailete,
You are so right! I'm like you on pain meds and showing no signs of addictive behavior, yet get chastized for asking for help. These doctor's just think we are all out to score something....meanwhile they are able to eat whatever they want, not regurgitate or vomit their meals. I am so thankful for this suppoert group. You are all so wonderful. I am sending goo thoughts to you and your son praise and a big hug to Gilete. You are strong.
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