Thank you for such an interesting post! I hadn't hear, or read anything about that condition before and I found it very interesting reading.
There are a few ladies on this board who complain about pain & problems associated with eating & pain, I am sure they will be interested in investigating this further.
I hope you continue to visit this site, as you have a great way of explaining things.
Thnx again for your input!
love & gentle hugs Jo http://www.bombobeach.com
At Wed, 13 Feb 2002, anonymous wrote:
>
>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.....
>>:)
-- I am not a medical person, and all my messages are based on personal experience. I am a fellow adhesions sufferer reaching out to help others.