What is Gastroparesis?
-------Original Message-------
From: adhesions@adhesions.org
Date: Wednesday, February 13, 2002 15:54:56
To: Multiple recipients of list ADHESIONS
Subject: Re: Gastroparesis
I have sever endometriosis. I have had multiplt major surgeries. The
first one was a laporotomy and was a seven hour surgery. I had 12
inches of my small intestine removed, 6 inches of my colon, and my
appendix. In addition, they scraped my bladder and ovaries. This was 7
years ago. The following year, I got a small bowel obstruction from the
adhesions, thus another surgery. Since then, I have had three more
surgeries to remove adhesions, but the more surgeries you have, the more
you can develop adhesions, so I try to avoid when possible. When I had
my gallbladder removed, they told me had a tremendous amount of
adhesions, and my intestines were stuck to my abdominal wall. But no
pain, no problem. Coincidentally, three years ago, I was unable to eat
for three months. After multiple tests, I was diagnosed with
gastroparesis (am not diabetic either). My gi, who is awesome at the
University of Penn (specializes in motolity disorders) actually gave my
a reason for it that tied into other health problems I had been having
(joint pain, low grade fevers, etc.) I had seen every specialist under
the sun, and no one could dx me until him. He said I had post viral
syndrome, which is not uncommon in women. It can last several years and
can cause gastoparesis as it is an immune reaction that can deaden the
nerves to the stomach. He gave me propulsid 10mg as he thought regulan
didn't work as well and had more adverse events. The first pill I took
allowed me to eat normally w/o ANY pain. Prior to that I would have
excruciating pain for 14 hours straight after eating. My symptoms
resolved about eight months later, just when propulsid was being pulled
from the market. I was very concerned what would happen if it returned.
I was not worried about the rare heart problems with it especially as I
only took 10mg a day and the max was 80mg. But, I would rather take the
chance of the risks than live with the pain I had experienced. The
point of this long e-mail is that it was completed unrelated to my
adhesions, and at that time, my doctor assured me that they were going
to continue to have a compassionate use program for propulsid (meaning
if someone really needed it for gastroporesis and not GERD like most
doctors were using it for, you doctor would be able to medically justify
that and get propulsid for you) I have never had a recurrence to have to
use that, but I believe the compassionate use program is still in
effect. Many doctors may be leary to prescribe it, but if I had it
again, my doc would. I would push your doctor for this prescription if
your pain is that severe and regulan doesn't help. For me, Propulsid
was a MIRACLE drug! I would hate to see people suffer needlessly just
because a physician is afraid of the drug. If you are willing to take
the risks, he should be too!
At Mon, 29 Jan 2001, CAROLE wrote:
>
>At Mon, 29 Jan 2001, Linda Ehler wrote:
>>
>>> Hi.,..I too just a month ago was diagnosed with Gastroparesis..it was-- >>> awful...appareently the drug Propulsid that was supposed to help us was
>>> taken off the market. The reglan (the drug they gave you) did not help
me
>>at
>>> all. In fact ,made me sicker...
>>>
>>> I am in process of finding what to do.. I live in Wa state and their are
>>> several drs. at the U of Wa that deal with this with a certain surgery.
>>>
>>> My gastro dr. was a jerk.. he basically said you'll be drinking water
and
>>> eating or drinking fluids the rest of your life!!! I have extreme nausea
>>all
>>> the time, always feel full and the gas bubbles are always girgling in my
>>> throat...I guess they can do surgery on the GERD (its called hot dog in
a
>>> bun or something like that surgery) then they have something for our
>>> gastroparesis although I don't know what it is. I am supposed to go in a
>>> have a tube put in my nose to stomach with some kind of monitor outside
>>the
>>> body that measures the stomach or something. you wear it for 24rs. then
>>back
>>> to him. I live 5 hr. away from a city so it is a real hard trip for me.
>>> Anyway....i will do this sometime in the next few months..
>>>
>>> I pray for you too...this is awful...my pain has gone on now for 2 yrs.
>>> under my left rib...it is debiliatating....
>>>
>>> forgive my spellings etc. I am exhausted..
>>> Good luck. Linda
>>> P.S. I would check with your local BIG hospital their surgery dept. and
or
>>> University for help. the smaller surgeons don't know how to do these
that
>>> well.
>>>
>I wish you luck in finding a Dr. nearby. Don't give up, maybe you have
>adhesions also that are causing the gastroparesis. I'm looking forward
>to having a nice juicy steak when I get this alll straightened out.....
>:)
.