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From: Robbie C on 28 Sep 2008 01:56
Hello,

I have had Crohn's since I was Sixteen. I am now 41 years old. I
have three children ages 5.5. and 6. My diseace has been active for
almost the entire time. I had about five good years with Remicade.
The Remicade high is over, and the chohn's symtoms are back.


I'm on everything. Prednisone, Humira, Purinethal, Pentasa, Iron,
B-12 shots, and Ultram for pain. I dont have a lot of Diarreah, but I
still have tons of pain and fatigue. I also still have to run like
hell to a restroom, or else......

My GI of Fifteen years finally referred me to a Surgeon. I think they
are going to have to take everything out. I'm pretty scared. I want
it to be over...The chrones that is, nut I know it will drastcly
impact my life. I hope for the better, but how do I know.

Thanks for listening to a my rant. I appreciate it much.

Rob

From: Vanny on 28 Sep 2008 04:06
Rob,

You don't say where your disease is, but if you have Crohn's colitis and are
worried about losing your colon then I can empathise. My Crohn's is
essentially a smouldering type ileal and colonic, but I was only first
diagnosed when I was 32 after years and years (with hindsight since I was a
child) of malaise, weakness and sickness and being very belly oriented. It
was too late to save my colon and I had 'the operation'
(panproctocolectomy - entire colon and rectum plus a bonus few cm terminal
ileum removed) the following year. So, I have had an ileostomy for over 15
years now. I am assuming your 'end of the line' means an ostomy of some
description.

I can assure you that your quality of life should rocket after the
operation. You would be advised to do a lot of your own research, find out
where your disease is, how much intestine you will be losing and whether it
will be an ileostomy (complete colon removed RHS abdominal siting) or a
colostomy (part of colon left in LHS abdominal siting) or an ileal
resection. Your surgeon should talk you through the operation and explain
things that could possibly go wrong. Don't forget that you are entitled to
obtain a second opinion.

I react badly to the anaesthetic (I don't want to come round) and always end
up in intensive care for the first 24 hours - even when I had my gall
bladder out! Other than that I did not have any complications. You will have
dietary restrictions and these you will have to find out for yourself, but
there is some guidance available.
http://www.google.co.uk/search?hl=de&q=ostomy+diet

The stoma nurse came to see me at home the day before I was due to be
admitted and drew an X where the stoma was to be sited. This was important
to me because I was a scuba diver and obviously wanted to continue after the
operation. I put my weight belt on and then she found the best site for the
stoma where it wouldn't get damaged by the 7 kg belt. They also slit me from
hip to hip instead of the usual chest to pubes. This meant that I could
still wear a high-slung bikini after the operation (you might not want to do
this, but I am female) without anyone noticing. The operation gave me a new
lease of life and did not stop me getting a good job with international
travel, scuba diving, swimming, weight training (under professional
supervision) and going on holiday whereever I wanted to. I was on disability
for over 2.5 years at the time because I had to wait a year for the
operation, while they tried various medicine treatments and by that time I
had a large abdominal abscess, peritonitis and near toxic megacolon -
resting pulse of 90-110 instead of my normal 60 with night sweats and
fevers. I was on antibiotics several months afterwards and had to have
another laparotomy to remove the infection and close the anal sinus. That
was in the UK and there were some nurses that I would have liked to have
hit, they were very insensitive.

A word of advice, please keep taking maintenance medication (usually
Azathioprine aka Imuran or 6-MP aka Purinethol) and osteoporosis prophylaxis
(calcium and vitamin D), etc. The doctors stopped my medication and hence I
was medication-free for 12 years. However, I was then operated on 3 times in
quick succession and lost over 50 cm ileum and a few other organs. As a
result I now have short bowel syndrome.
http://www.healthsystem.virginia.edu/internet/digestive-health/nutritionarticles/September2005.pdf
Perhaps, if I had been put on maintenance medication then perhaps I wouldn't
have lost so much intestine and definitely, if the doctors had believed me
when I kept on saying that I felt ill in my 20s instead of fobbing me off,
then I wouldn't have lost my colon so early.

When I had come round from the operation and was able to start eating again,
a friend had brought me some jelly babies and I remember thinking that the
jelly babies where going to come out of my stoma and start dancing on my
tummy - I was definitely still under the influence of the morphine. It made
me laugh and no, it didn't happen.

I read a story about a lady who was going to have the operation and she
threw a 'bag' party prior to being admitted. Everyone who came had to wear a
bag on there tummies and in this way she overcame any potential hurdles
about others being disgusted or embarassed for her.

Personally, I do not tell people about my disease or bag because not
everyone can cope with it and it can be career damaging. For example, I told
just one colleague at a previous company about my health condition (in
confidence as I thought) and she then told my boss. I ended up getting
bullied and my life was made miserable before I left having found another
job. I just don't discuss it with anyone now. In fact, the Crohn's and
colitis organisation here in Germany recommends that one does not tell the
employer and colleagues. I only tell close friends, acquaintances don't need
to know.

I was in a car with a diving acquaintance some time after my operation and
he told me how a man in the changing rooms was walking around with a bag of
excrement on his stomach and how disgusting it was, I smiled wryly to myself
and thought 'if you only knew, mate'. There are a modicum of ignorant and
stupid people out there.

My boyfriends have coped with the situation with no major problems (apart
from initially being a bit surprised, but it hasn't put them off) and I
remember one happy time sitting on the motorway heading for Heathrow airport
and my appliance starting to lose its hold. The driver, my boyfriend at the
time, was fine about me changing the bag in the passenger seat of the car. I
was only concerned about the lorry drivers who had a bird's eye view. I
actually made it back to Germany through the respective securities with a
bag of excrement in my hand luggage.

I will be very happy to talk you through anything you want to know. There
are other sites for you to consult. For example:

http://www.talkaboutsupport.com/group/alt.support.ostomy/
http://www.google.co.uk/search?hl=de&q=ileostomy
http://www.google.co.uk/search?hl=de&q=colostomy

I also have to correct you - it is actually, not the end of the line, it is
the beginnning of a new lease of life. Six months after the operation, you
should organise the holiday of your lifetime and do something that you have
always wanted to do, but have physically unable to do to date. Caveat, you
will need patience and build up your strength slowly.

Vanny

"Robbie C" <rbcohen(a)gmail.com> schrieb im Newsbeitrag
news:25b2e10b-1a31-46aa-9f48-7895654a643e(a)34g2000hsh.googlegroups.com...
> Hello,
>
> I have had Crohn's since I was Sixteen. I am now 41 years old. I
> have three children ages 5.5. and 6. My diseace has been active for
> almost the entire time. I had about five good years with Remicade.
> The Remicade high is over, and the chohn's symtoms are back.
>
>
> I'm on everything. Prednisone, Humira, Purinethal, Pentasa, Iron,
> B-12 shots, and Ultram for pain. I dont have a lot of Diarreah, but I
> still have tons of pain and fatigue. I also still have to run like
> hell to a restroom, or else......
>
> My GI of Fifteen years finally referred me to a Surgeon. I think they
> are going to have to take everything out. I'm pretty scared. I want
> it to be over...The chrones that is, nut I know it will drastcly
> impact my life. I hope for the better, but how do I know.
>
> Thanks for listening to a my rant. I appreciate it much.
>
> Rob
>


From: Mark Mandell on 28 Sep 2008 13:37

"Robbie C" <rbcohen(a)gmail.com> wrote in message
news:25b2e10b-1a31-46aa-9f48-7895654a643e(a)34g2000hsh.googlegroups.com...
> Hello,
>
> I have had Crohn's since I was Sixteen. I am now 41 years old. I
> have three children ages 5.5. and 6. My diseace has been active for
> almost the entire time. I had about five good years with Remicade.
> The Remicade high is over, and the chohn's symtoms are back.
>
>
> I'm on everything. Prednisone, Humira, Purinethal, Pentasa, Iron,
> B-12 shots, and Ultram for pain. I dont have a lot of Diarreah, but I
> still have tons of pain and fatigue. I also still have to run like
> hell to a restroom, or else......
>
> My GI of Fifteen years finally referred me to a Surgeon. I think they
> are going to have to take everything out. I'm pretty scared. I want
> it to be over...The chrones that is, nut I know it will drastcly
> impact my life. I hope for the better, but how do I know.
>
> Thanks for listening to a my rant. I appreciate it much.
>
> Rob

Not all that often I post here anymore, one reason being in remission since
a recent flare. Doing fairly well in fact while on 15 mg./day of the Pred +
Imuran.

But having had three surgeries over an eighteen year period(with
intermittent flares), I would advise that if having surgery you purchase
some anti germ sanitizing lotion from a pharmacy and apply it to your hands
as much as you can after leaving any public places(restaurants, theatres,
schools, etc). Of course, if your children get ill, this may be more
necessary to do at home. I say this because 90% of my flares have arisen
from contracting the flu or colds(so my immune system overreacted) and I
live a very stress free lifestyle to boot(hence, casting some doubts on the
so called mind/body connection where disease is concerned). Also continue
with imuran because that too can dampen the immune system's tendency to
react adversely and trigger more flares(it didn't prevent the latest flare
but made it mild relative to prior flares).

Mark Mandell


From: Robbie C on 28 Sep 2008 14:04
On Sep 28, 4:06 am, "Vanny" <Vannyss2...(a)antispam.com> wrote:
> Rob,
>
> You don't say where your disease is, but if you have Crohn's colitis and are
> worried about losing your colon then I can empathise. My Crohn's is
> essentially a smouldering type ileal and colonic, but I was only first
> diagnosed when I was 32 after years and years (with hindsight since I was a
> child) of malaise, weakness and sickness and being very belly oriented. It
> was too late to save my colon and I had 'the operation'
> (panproctocolectomy - entire colon and rectum plus a bonus few cm terminal
> ileum removed) the following year. So, I have had an ileostomy for over 15
> years now. I am assuming your 'end of the line' means an ostomy of some
> description.
>
> I can assure you that your quality of life should rocket after the
> operation. You would be advised to do a lot of your own research, find out
> where your disease is, how much intestine you will be losing and whether it
> will be an ileostomy (complete colon removed RHS abdominal siting) or a
> colostomy (part of colon left in LHS abdominal siting) or an ileal
> resection. Your surgeon should talk you through the operation and explain
> things that could possibly go wrong. Don't forget that you are entitled to
> obtain a second opinion.
>
> I react badly to the anaesthetic (I don't want to come round) and always end
> up in intensive care for the first 24 hours - even when I had my gall
> bladder out! Other than that I did not have any complications. You will have
> dietary restrictions and these you will have to find out for yourself, but
> there is some guidance available.http://www.google.co.uk/search?hl=de&q=ostomy+diet
>
> The stoma nurse came to see me at home the day before I was due to be
> admitted and drew an X where the stoma was to be sited. This was important
> to me because I was a scuba diver and obviously wanted to continue after the
> operation. I put my weight belt on and then she found the best site for the
> stoma where it wouldn't get damaged by the 7 kg belt. They also slit me from
> hip to hip instead of the usual chest to pubes. This meant that I could
> still wear a high-slung bikini after the operation (you might not want to do
> this, but I am female) without anyone noticing. The operation gave me a new
> lease of life and did not stop me getting a good job with international
> travel, scuba diving, swimming, weight training (under professional
> supervision) and going on holiday whereever I wanted to. I was on disability
> for over 2.5 years at the time because I had to wait a year for the
> operation, while they tried various medicine treatments and by that time I
> had a large abdominal abscess, peritonitis and near toxic megacolon -
> resting pulse of 90-110 instead of my normal 60 with night sweats and
> fevers. I was on antibiotics several months afterwards and had to have
> another laparotomy to remove the infection and close the anal sinus. That
> was in the UK and there were some nurses that I would have liked to have
> hit, they were very insensitive.
>
> A word of advice, please keep taking maintenance medication (usually
> Azathioprine aka Imuran or 6-MP aka Purinethol) and osteoporosis prophylaxis
> (calcium and vitamin D), etc. The doctors stopped my medication and hence I
> was medication-free for 12 years. However, I was then operated on 3 times in
> quick succession and lost over 50 cm ileum and a few other organs. As a
> result I now have short bowel syndrome.http://www.healthsystem.virginia.edu/internet/digestive-health/nutrit...
> Perhaps, if I had been put on maintenance medication then perhaps I wouldn't
> have lost so much intestine and definitely, if the doctors had believed me
> when I kept on saying that I felt ill in my 20s instead of fobbing me off,
> then I wouldn't have lost my colon so early.
>
> When I had come round from the operation and was able to start eating again,
> a friend had brought me some jelly babies and I remember thinking that the
> jelly babies where going to come out of my stoma and start dancing on my
> tummy - I was definitely still under the influence of the morphine. It made
> me laugh and no, it didn't happen.
>
> I read a story about a lady who was going to have the operation and she
> threw a 'bag' party prior to being admitted. Everyone who came had to wear a
> bag on there tummies and in this way she overcame any potential hurdles
> about others being disgusted or embarassed for her.
>
> Personally, I do not tell people about my disease or bag because not
> everyone can cope with it and it can be career damaging. For example, I told
> just one colleague at a previous company about my health condition (in
> confidence as I thought) and she then told my boss. I ended up getting
> bullied and my life was made miserable before I left having found another
> job. I just don't discuss it with anyone now. In fact, the Crohn's and
> colitis organisation here in Germany recommends that one does not tell the
> employer and colleagues. I only tell close friends, acquaintances don't need
> to know.
>
> I was in a car with a diving acquaintance some time after my operation and
> he told me how a man in the changing rooms was walking around with a bag of
> excrement on his stomach and how disgusting it was, I smiled wryly to myself
> and thought 'if you only knew, mate'. There are a modicum of ignorant and
> stupid people out there.
>
> My boyfriends have coped with the situation with no major problems (apart
> from initially being a bit surprised, but it hasn't put them off) and I
> remember one happy time sitting on the motorway heading for Heathrow airport
> and my appliance starting to lose its hold. The driver, my boyfriend at the
> time, was fine about me changing the bag in the passenger seat of the car.. I
> was only concerned about the lorry drivers who had a bird's eye view. I
> actually made it back to Germany through the respective securities with a
> bag of excrement in my hand luggage.
>
> I will be very happy to talk you through anything you want to know. There
> are other sites for you to consult. For example:
>
> http://www.talkaboutsupport.com/group/alt.support.ostomy/http://www.google.co.uk/search?hl=de&q=ileostomyhttp://www.google.co.uk/search?hl=de&q=colostomy
>
> I also have to correct you - it is actually, not the end of the line, it is
> the beginnning of a new lease of life. Six months after the operation, you
> should organise the holiday of your lifetime and do something that you have
> always wanted to do, but have physically unable to do to date. Caveat, you
> will need patience and build up your strength slowly.
>
> Vanny
>
> "Robbie C" <rbco...(a)gmail.com> schrieb im Newsbeitragnews:25b2e10b-1a31-46aa-9f48-7895654a643e(a)34g2000hsh.googlegroups.com...
>
> > Hello,
>
> > I have had Crohn's since I was Sixteen.  I am now 41 years old.  I
> > have three children ages 5.5. and 6.  My diseace has been active for
> > almost the entire time.  I had about five good years with Remicade.
> > The Remicade high is over, and the chohn's symtoms are back.
>
> > I'm on everything.  Prednisone, Humira, Purinethal, Pentasa, Iron,
> > B-12 shots, and Ultram for pain.  I dont have a lot of Diarreah, but I
> > still have tons of pain and fatigue.  I also still have to run like
> > hell to a restroom, or else......
>
> > My GI of Fifteen years finally referred me to a Surgeon.  I think they
> > are going to have to take everything out.  I'm pretty scared.  I want
> > it to be over...The chrones that is, nut I know it will drastcly
> > impact my life.  I hope for the better, but how do I know.
>
> > Thanks for listening to a my rant.  I appreciate it much.
>
> > Rob


Thanks for the words of encouragement and support. I'm anxiously
waiting the appointment with the surgeon on October 16th. Vanny it is
amazing that you continue to do all you do. This gives me hope that I
may actually feel good afterwords. I do have Chrons.... How long was
your recovery period after the surgery?

Thanks a Bunch,

Rob
From: David McCoy on 28 Sep 2008 18:46
Hi rob,

Almost 8 years ago I was where you are now. I had been dx'd with CD
since I was 23 (22 years ago) and had done the whole gamut of
treatments, including a partial colectomy in 1996. I had two years
symptom free after that, then the CD came back with a vengeance. I put
up with it for another 3 years, steadily declining all the time.
In 2001, at my request, I had an ileostomy. I really didn't care whether
or not I survived the surgery, I just wanted it over with.
Since then, let's see
Started working again after being told in '96 that I'd never work again.
got married in 2005 (at 41 but better late than never :) )
My wife and I now own our own business.

The surgery wasn't the end of my life, but the beginning.

David McCoy

ps feel free to email me david(a)kynetoncomputers.com.au
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