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What's It's Like To Starve To Death Very Slowely

I had emergency surgery in 07 for H-Pyloric ulcer perferation.  I was in the hospital for 5 days.  When I was discharged there were no eating instructions.  Just come back for staple removal.  For the next year I had problems with vomiting and extreme pain in the mid back and stomach.  After 1 year of seeing doctors they finally did the proper test and diagnosis was gastroparesis.  They said at that time in 09 that only 10% of my stomach was working, but the doctor never told me anything else.  No diet instructions, no referal to a dietition, nothing again.  Not even an explaination on gastroparesis and what it does and does not do.  So for the last year my body has been starving itself to death.  I'm 5'7" tall and I only weigh 100lbs.  My hair is falling out now, my skin is really thick and splotchie,  I don't even have the energy to get out of bed some days.  My feratin levels are very low (iron), and I have been loosing protein in my urine.  I went for a second opinion last week and they finally explained gastroparesis to my husband and I.  The only recommendations he gave us was try this herb. Liberogast.  There dosn't seem to be any concern about the weight loss.  This is all I can write for now because I am still in the process of trying to get my body to absorb food. 
Debbieducati Debbieducati 46-50, F 5 Responses May 28, 2010

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If it hadn't been for the surgery in the beginning, I would have thought my daughter had written this. All the same! I have been a long painful for her search for help with this gp!!! After so many fights with hospitals Dr's passing her to & fro! We are at square one!! An eating disorder clinic was a hope to help because this gp creates sever malnourishment, depression & a hopelessness in our health care system. Thankful to God & praying thru his son Jesus, she is still with us. A failed pic line due to an RN's neglect ( the blood thinner was depleted by the RN & she has large blood clot's in her, now 6months of 2 trips a week to the lab trying thru blood thinner to try to dissolve them. ( The RN was fired, but our daughter has more life threatening situation to live with.) Now with a replaced gj tube in her stomach/intestines. All anyone will say. Try & keep the stomach tube closed & don't drain it & try to eat. I have begged & pleaded with the clinic Dr. & the gastro. Dr. and a dietician @ the last hospital. There has to be a menu, a starting point to try to put food into it. Not just ensure along with this gj feeding tube. By the way it is 24 hour feeding. I get no answers. Nothing, one Dr. said he won't speak against another Dr's work. Well, we're asking & trying to put what's right for a year 1/2 fasting stomach that actually won't work! This is the slowest & most painful destruction of a God given preciouses life. She has tried smoothies, 7up, pudding, yesterday they gave her a popsicle after her g j tube replacement. She did as they say & didn't open the port to drain her stomach. So it comes up the usual end! I tucked in my over 30 years old, 87 pound skeletal daughter & held her trying to get her warm. Wondering how long can this go on! When will we be holding her for the last time to bury her. God have mercy! I pray he say's yes & we find someone who will take ownership & want to save her life. She want's to & has tried everything they say. To no avail. I am so wondering is this person who wrote this in 2010 still with us? If so where did she find help.

I came accross your article while doing research for Gastroparesis and deaths. I told my GI that their was a recent death of gp and that g-pact.org said there have been more documented cases. He said it wasn't possible to die from gp and that there had to have been another condition as well. I am going to be on domperidone again to try once more for my symptoms. I belong to Team Inspire which has been a great help to me and my condition. I wrote to Dr. Oz to see if he would do a show on this to bring more awareness. They don't know where mine came from either or how to fix it. My only concern is if my stomach doesn't work what else will be next. I started taking vitamins for hair skin and nails as well as vitamins D and B since they have both been low. Hope you post again take care. Daniele Albanese

I came accross your article while doing research for Gastroparesis and deaths. I told my GI that their was a recent death of gp and that g-pact.org said there have been more documented cases. He said it wasn't possible to die from gp and that there had to have been another condition as well. I am going to be on domperidone again to try once more for my symptoms. I belong to Team Inspire which has been a great help to me and my condition. I wrote to Dr. Oz to see if he would do a show on this to bring more awareness. They don't know where mine came from either or how to fix it. My only concern is if my stomach doesn't work what else will be next. I started taking vitamins for hair skin and nails as well as vitamins D and B since they have both been low. Hope you post again take care. Daniele Albanese

I came accross your article while doing research for Gastroparesis and deaths. I told my GI that their was a recent death of gp and that g-pact.org said there have been more documented cases. He said it wasn't possible to die from gp and that there had to have been another condition as well. I am going to be on domperidone again to try once more for my symptoms. I belong to Team Inspire which has been a great help to me and my condition. I wrote to Dr. Oz to see if he would do a show on this to bring more awareness. They don't know where mine came from either or how to fix it. My only concern is if my stomach doesn't work what else will be next. I started taking vitamins for hair skin and nails as well as vitamins D and B since they have both been low. Hope you post again take care. Daniele Albanese

I ache when I hear your story. If it weren't for my own research, I'd probably be in your shoes.<br />
<br />
For me, diluted Glucerna (over the counter, Ensure-like product) has helped me get to the point where my hair isn't falling out any more.<br />
<br />
I hope you find what works for you.<br />
<br />
LiveNew

I went two and a half years, vomiting, combined with mind blowing pain, and a total weight loss of 30 lbs (I am 30 years old, 5'2, and used to weigh 110-115 lbs normally). I am down to 80 lbs on a good day.

For two years, I went to trillium hospital (gta Canada), where they berated me, accused me of faking, being over dramatic, and seeking drugs. I had a partial endoscopy by Dr. Macmillan, who cleared me if any GI issues.... He referred me to the psych dept. The Dr made no mention of his findings to me or my husband, and in fact, berated me, saying I was doing this to myself. I believed them and did anything they told me to do.... After all, I'm not a doctor.

The symptoms kept getting worse... I could no longer eat, or have a bowel movement without going into a vomiting episode for eight hours. I went back to trillium in December. It was the middle of the night, and the waiting room was empty. I was left there vomiting for four hours before my husband went up to the admitting nurse. He asked her if they were going to help me, and she said no. My husband then explained that I was in severe pain, and that if I go home and commit suicide (that was the point I was at), that he would sue the hospital. The nurse wrote down a number and said "if that happens, feel free to call our client care." They refused to give my health card back to me.

We then made the trek to st.Joseph's health centre. I was admitted as soon as they saw me. Within the hour, I had been seen by at least two er doctors, three surgeons, and two internal medicine doctors. They were all exceptionally kind and caring, which I was not used to.

Previously, trillium had tried some pain relief, the most being morphine, which, other than the first time, made symptoms worse, as well as the vomiting, but it would not abort the episode... At this point, I didn't care about the pain, I wanted to know what was happening to my body! I was scared. A surgeon came in with tears in her eyes, and rubbed my back while pleading with me to let them give me hydromorphone.... I thought it would be a similar experience to morphine, so I refused, and begged them to let me ride out the episode, which should have ended two hours later... I really just wanted to get to the bottom of it. Additionally, I refused pain meds from my experience at trillium... The moment the vomiting stopped and the pain was gone, I was discharged.... I was not being sent home this time.

The eight hours went and gone... The episode continued... This was new. I waited two more hours before the pain consumed me to the point that I was uncontrollable. I told the surgeon at that point that I would take anything they wanted to give me. It was my first experience with hydromorphone. They found the right one. Within two minutes of it being hooked into my iv, I was paralyzed, and unable to breathe for about ten seconds (they really should have warned me about that).... After that, I was normal.... Normal like I had not felt in months.

They referred me as an outpatient to Dr. Elfassy (gastroenterologist).... I was scheduled to see him in three months. Our meeting happened much sooner. I went back in vomiting about a week or so later.... This time they admitted me. I met Dr. Elfassy the next day when he did a full endoscopy on me. He is by far the kindest, most down to earth specialist I have ever met... Someone who actually listens to what you have to say, and takes it seriously.

He revealed to my husband and I, that I have a congenital disorder called intestinal malrotation (my insides aren't where they are suppose to be). He sent me for a nuclear gastric emptying test, where gastroparesis was confirmed. After three hours of imaging, no food had left my stomach.

Now we are trying to piece our lives back together, which sometimes seems impossible. We couldn't do it without the support from Dr. Elfassy or the staff at st.Joseph's.... However, trillium destroyed so much more in the process that can never be replaced... Family and friends have long hit the road, as they felt as I was faking after going so long without a diagnoses.... The permanent loss of employment, the loss of my independence, and they almost made me lose hope.

Get second opinions, don't give up. Demand imaging, and don't allow yourself to be treated subhuman.... Anyone who says that gastroparesis isn't fatal has no clue what they are talking about. When you are at that stage, and no one will help you, you feel that you have two choices; starve to death, or commit suicide.... I was very close to the latter. There are no words that can express my gratitude to st.Joseph's... I hope someone there reads this.

Amber, I am so sorry for everything you have gone through to finally get a diagnosis. I was luckier in that it didn't take quite that long, but I, too, dealt with doctors who thought I just needed a psychiatrist.

There is life after diagnosis. There are things you can do to slowly gain your strength back. Your body has been so malnourished for so long and the pain is such that you become scared to eat.

I'm glad you have good doctors in your corner now. I pray that things go smoothly as they treat your condition and you find what works.

LiveNew

Thank you for your kind words. People may judge us by us posting here, however, the more I read, the more I find people are left undiagnosed because er doctors aren't used to seeing something rare. We need to spread the word, and make more people aware of this painfully crippling disease. Maybe then it won't be so overlooked.