Thank you Grey Wolf. At the time it was a hard decision to make. She had
been on them for 7 years at the insistence of her doctor. It took me that
long to realize things would never change as far as getting help from
doctors. During those years I was taking her to other gastroentrologists to
get different opinions. It soon became clear--none of them could agree on
what was wrong with her. One however said, "I agree with you--she does not
have the symptoms of Crohn's". That led me to many other doctors, testing,
etc. Our problem in a nutshell: Being that she had an area of narrowed bowel
caused her to be labeled with Crohn's. However, she didn't have all the
other symptoms of Crohn's patients in the support group. OB/GYN's (many)
never mentioned adhesions or endometriosis or polycystic ovaries.
What a shame that so much ripping, tearing, pulling, throbbing pain was
going on inside and she received ZILCH, zero help from doctors. We are in
the Dallas, Ft. Worth area!!!! It isn't like we are in Nowhere, USA!!!!!!!
Even Scott & White did not help us!!
When I finally decided what was going on and took her to the CORRECT type
doctor and said, "My daughter must have endometriosis", he took Melissa's
hand and said, "Honey, I read your file, I am so sorry that doctors have
failed you and that you had to find your own answers. There is no doubt,
NONE, you have endo and need surgery." Okay, after 13 years, this mom had to
leave the room and have a good cry. Even tho that doctor was horrified at
the adhesions and did all the removal he could, he was honest with us that
he would not touch the bowel area. He said it was the worse adhesions he had
ever seen and in fact couldn't even find the ovaries for all the dense
adhesions.
Dr. Moore has not responded to any of my postings to him, which is okay, but
I am in hopes he will see how the medical community (doctors) get a mind set
and leave the patient hopeless. If granulomas do NOT show up in biopsies,
then don't tell me my daughter has Crohn's! It was a doctor's own med
training book that told me that granulomas MUST be present for a Crohn's
diagnosis. Also, if the patient FEELS the doctor has missed something or
that something else is going on, don't say "take your prednisone"!! Why, why
why, were we not ever told about a lap procedure to "look"??? Had I known
that was available, I would have been requesting it!! I DID NOT KNOW! How
many more young girls will go through years of pain, only to be placed on
prednisone?? She NEVER needed prednisone.
Sorry, Grey Wolf--I get wired up anytime I start reliving the scenario. I am
so sorry your mom died due to adrenal cancer. That was a horribly long time
to be on steroids. Please accept my sympathy on the loss of your special mom
Thanks again for encouraging me today.
-------Original Message-------
From: Pgrywlf@aol.com
Date: Friday, January 10, 2003 07:37:05 AM
To: stew@cowtown.net
Subject: no subject received Fri, 10 Jan 2003 08:37:29 -0600
I am glad you took your daughter off the steroids as my mom was on & off of
them for 30 years & died due to adrenal cancer. I say it was due to the
steroids as they stop then start the adrenal glands over & over again. With
all that stress on them that is why she got the cancer. Unfortunatlly she
was a smoker & her death certificate said she died of lung cancer. Funny
how they did 5 bronchoscopy's & did not find anything, but she had the
cancer on the left adrenal gland.
--
Love & hugs & pain free momets to your daughter!!!!
Grey Wolf