HELP ME PLEASE!
Desperate please from Adhesion
Related Disease Sufferers!
Posts from an ARD Message Board
from those who suffer ARD
{This is just a glimpse into
their lives and their pain}
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I cant carry on like this anymore!!!!
From: jackie
Tue, 27 Mar 2001 14:34:56 +0100
Hi everybody, I feel i cant carry on like this
anymore, i'm constantly in bed for 20hrs or more per day, can only manage
to eat sandwiches anything bigger comes back up. I even phoned my priest
this morning, so he came round to visit me and i told him how i felt.(If
i go to sleep and not wake up then, i'll no longer be in agony). Dont think
i am suicidal, as i'm not, I would NOT contemplate that.I just want some
kind of relief from this nightmare situation. I havent been out of the
house for ten days, except for an emergency visit to gp, (BUT) I'm really
SCARED of going back into hospital, because of the accident that left me
like this. If I go to hospital, then i have to go back to the same one,
the thought petrifies me, even now i still have nightmares and flashbacks.
As you all know the only way they can diagnose adhesions properly is by
'keyhole' laparascopic surgery.It was this procedure that led to my bowel
being punctured so I had to have a colostomy done, and, they punctured
my bladder, ended up with suprapubic catheter(a tube that goes through
abdomen to bladder and drains in to a leg bag, and a vaginal catheter,as
suprapubic catheter couldn't cope on its own.. As you can tell i'm really
depressed and dont know how much more pain and vomiting i can cope with,
and the weight loss. I hope u can try to understand the way i'm feeling,
and why I am so SCARED of going back to the hospital. Perhaps some of u
have felt like this before? Is there not more to life than living with
ARD? Regards Jackie (England)
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UH OH I am falling apart at the seams!!!!!!!
From:
Mon, 26 Mar 2001 23:44:31 EST
My dear supportive, loving, kind, caring friends,
How would we get through a day without our letters of encouragement? I
know that today has been the day from HE double hockey sticks and I feel
like total crud, but I get on and read a post from someone feeling worse
than me, someone suffering more than me, someone going through so much
to get well and I think to myself.......but for the the grace of God.....and
I keep going. It is just so hard sometimes and right now is one of those
times......I've spent the whole day fighting with doctors and hospitals
trying to get my medical records and half of them don't know where to find
them and the other half want money (hahaha what;s that??). But I did get
some thing accomplished and just when I thought the day was going to be
ok, my pain wasn't too bad, I felt pretty good, the roof fell in. The pain
is increasing and I am completely out of meds. The only choice for relief
is an all niter at the ER and that doesn't appeal to me. Then my son (15)
started testing my limits and we had a war and I started crying. Just once
I wish that a male could feel this pain, endure this suffering, neglect,
ignorance and despair. Just once. Even if it's only for a day. I know I
know it won't happen, but hey a girl can dream cant' she? I do have the
hope looming in the near future as I have an appointment with a pain specialist
in Mississippi (I am in Louisiana) and it will be a 4 hour trip there and
4 hours back, but I know that it will be well worth it. (Keep reminding
me of that ok guys?) and I will be out of the excruciating pain, or atleast
it will be manageable. This pain that knocks your knees out from under
you and totally incapacitates you is just too much to handle and I am going
to demand the drugs to keep it under control I refuse to be a victim any
longer. That's it!!!!!!! We are not Adhesion Sufferers............WE ARE
ADHESION SURVIVORS!!!!!! WE ARE ADHESION WARRIORS!!!!! I like that!!!!
OK OK enough crying, the keyboard is soaked again. I love you all my e-friends,
for each of you in your own way has touched my life in a positive way.
A special thanks to my advocate HC and tolerating my blondeness and chemo
brains, I love you girl! Love, Missy
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Afraid
From: Kara
Fri, 30 Mar 2001 23:46:37 -0600 (CST)
I had a laproscopic hysterectomy back in 1999,
and was able to keep my tubes and ovaries (because I am only in my early
30's). Eight months later, I was back into the doctor, in excruciating
pain, with a small cyst on one of my ovaries, and the doctor did the ultrasound
and pretty much made me decide I should have the rest taken out. That was
in Feb 2000. The past few months, I have been experiencing the similar
kind of pain in my abdomen. When the doctor removed my tubes and ovaries,
he said I was literally "filled" with adhesions, and had to remove them
from my small bowel, and even a couple heading up towards my liver. I am
under the impression these do not just go away do they? I'm afraid I'm
looking at another surgical procedure down the road, but I was never told
anything about this before. Any suggestions you may have would be much
appreciated. Please email me. Thank you!
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Help, It happened again..
From: Regina
Fri, 30 Mar 2001 20:29:03 -0600 (CST)
I really cannot believe I actually had it happen
again. I was referred to a prominent doctor/surgeon by my GI and waited
weeks to see him. Upon my initial office visit he immediately admitted
me into Temple University Hospital and stated he could help me and sees
people with adhesions all the time. He proceeded to repeat all of the GI
tests(?) I have had recently. I told them I had all of them last week but
they said they wanted to do them again. They also took me to the short
procedure unit and inserted a central line. I really thought I was on the
right track with this one. Well, after seven days by myself in a hospital
where I know no one and my family cannot visit me due to the distance,
the "prominent" doc, whom I hadn't seen since my admission, arrives to
tell me that he is not going to do anything further for me. He isn't going
to do surgery or ANYTHING! At first I was in shock, then I just cried and
asked why?? He knew what my problem was going into this. He simply stated
"YOUR CONDITION IS NOT LIFE THREATENING" and I asked what about my quality
of life? He said" YOUR QUALITY OF LIFE IS NOT MY CONCERN" He then, get
this, put out his hand like I would shake it. That's it, discharged. Pain
management will see you before you go. Which they did-duragesic patch and
some drug they use for parkinsons disease. I don't want to deal with pain
docs anymore, I don't want the pain anymore, I can't take the pain anymore!!!Why,
why, why won't anyone listen. So now I sit here at home, haven't stopped
crying, in the middle of limbo. Why was my time wasted? This did it, I
am done. I have lost jobs and precious time with my child. My marriage
is barely there anymore. No one believes me about adhesion pain or even
thier ability to cause such pain. I don't know where else to turn, I am
truly tired. I was forced, not by my choice, to leave school for a semester
on a academic leave due to medical condition. I truly now have nothing.
Oh yeah, I tried the "patch" I heard it really helped some people, I woke
up at three oclock with hives all over me and I was having a hard time
breathing. Of course, I am allergic to the adhesive. One more strike against
me. I know we are all supposed to be strong and supportive, and god knows
I have tried to help people in my own way, but maybe now everyone will
truly understand my bitterness towards the medical community and docs who
don't understand adhesions and their sufferers. I am sure R&R will
love to hear that I was shot down so severely by another doc. Hey, this
one took my insurance but wouldn't help me. Then there are some who will
help me, but won't take my insurance and want cash up front. Ugly cycle
here, and in the mean time I am truly afraid for myself. Regina
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Help!
From: cmscas
Sun, 25 Mar 2001 15:44:59 -0600 (CST)
Hi, Today is my first day visiting this
site. I heard about it through another site for C-Sections. I had an emergency
C-Section on October 28, 2000. Seven weeks later I was admitted to the
hospital to undergo emergency abdominal surgery for a small bowel obstruction,
multiple adhesions throughout my entire pelvis, hematomas and my uterus
was stuck up high on the pelvic wall. About three months later, I was again
admitted to the hospital for another eight days for an infection. (I have
been home for about aweek and a half now and enjoying my four and a half
month old!) My problem is pain. I live with it every day! Doctors say it's
to be expected?!?! I don't have another bowel obstruction, so they say
I'm okay. They also say that another bowel obstruction could for again
in the future, even with no additional surgery. Once you've had these types
of adhesions, they can keep coming back. The only problem I'm having is
I don't feel okay. Some days I ache so bad I can't stand it. It's mind
numbing. I try so hard to be there for my newborn, but when you are in
so much pain, it's tough. On top of that, I feel like I've let my family
down. Again, when you are in a lot of pain, it's so hard to keep your mind
focused on day-to-day activities. I feel like I drive my husband crazy.
I'm afraid he's going to leave me, as I'm not the same person I used to
be. I'm also deeply saddened by the prospect that all this has rendered
me infertile. I may not get the opportunity to have another child. Please,
to any one out there, am I normal for the way I feel. Has any one experienced
these types of feelings? I would also like to hear success stories out
there about those who were told they may have a tough time having more
children and were able to acheive a successful pregnancy. (My fallopian
tubes, ovaries and uterus were full of adhesions and some of my Dr.'s feel
another pregnancy may be hard for me) I look forward to hearing from some
of you. I think this site is great and already feel better for having found
it. At least I don't feel so crazy that I feel pain despite the medical
community telling me there is nothing wrong with me. I now know, I'm not
alone.
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Please can you help!!!
From: Adrian
Sun, 25 Mar 2001 16:04:43 -0600 (CST)
Fellow sufferers
Two and a half years ago I had an operation
to remove a large tumour from my small intestine, since then I have had
yet another operation to repair two post operative hernias, I have had
continual pain that is particularly bad for approximately ten to fifteen
days a month, as a freelance professional ballet photographer and designer
and it is not possible to say when I will have a good day or a bad one!
I have a career specific insurance policy
with Scottish Amicable European and they have refused to pay me a penny
and keep saying that I will be OK ONE DAY even though my consultant and
his consultant registrar has stated that it is almost certainly Adhesions
and they do not want to operate again as
they feel they would gain nothing, my financial
advisor and my GP has also told the insurance company that I cannot do
my profession because of the pain and unpredictability of when it will
strike, I have also told them many many times.
I have spent my savings to support myself
and my family, I have cashed in my tessa/peps, I have even asked my mortgage
company to refund me the money I have spent on the house over the last
few years, has anyone had a similar problem with an insurance company over
Adhesions? I am still paying £91 a month to this company and it is
slowly driving me under.
Any advice or help would be a great help,
I am going to take the matter to the insurance ombudsman and I need all
the evidence I can get my hands on.
Yours
--
Adrian
(England)
