There's a question posted regarding damage cause to nerves during childbirth
causing the rectum to cease working. If anyone has any knowledge regarding this
prob can you check in and answer the ladies question.
Ta peeps.
Globey (Yep still around)

I had a big problem during childbirth and twice they attempted to correct it and
now nerves that innervate the rectum don't work. doctors say only a colostomy
would solve problem. sorry to share so much personal. sheila USA

I'm new to the group here also. I had a total colectomy 18 months ago,
plus which i have a spinal injury, and I intermittantly self
catheterise. I get a mobility allowance, after being knocked back the
first time I applied, I appealed, and got it the second time around. I
also applied for part of the care component. I didnt get it, even after
I appealed. However, in one of the magazines from one of the stoma
supply companies there was a very good article about legal entitlements
for people with stomas, and it seems that at least the lowest part of
the care component should be allowed. It does not depend on whether or
not you are working, or whether or not you are getting the care, just if
you NEED the care. For instance, you might have a leaking pouch in the
middle of the night, and NEED help to clean up, sort bed out etc, I
personally can't change a bed by myself because of my back, and help to
get rid of sheets, and put to soak etc. Its like finding your way around
a minefield though. Also, if you have the exclusive use of a bathroom,
or another room in the house, say for specific exercises, or to store
your gear, etc, you could be entitled to a reduction of council tax.
--- In ukostomysupport@yahoogroups.com, "joannehayward26"
<joannehayward26@...> wrote:
>
> Hi, i am new to the group i had a total colectomy last august and am
> now left with an ileostomy.
> I suffered from chron's disease for 15yrs, i hoped this would keep it
> at bay for several years but i think it has returned.
> I wondered if anyone knows if i am entitled to any benefits?
> Or if there's a website i can use to find out.
> Many thanks hope everyones feeling ok jo
>

----- Original Message -----

From: sewmad12000

To: ukostomysupport@yahoogroups.com

Sent: Monday, November 03, 2008 6:50 PM

Subject: [UK Ostomy Support ] Date to meet surgeon

Hi all,

I have finally got a date to meet my surgeon, I am seeing him on 4th
December so hopefully it won't be too long after this that i get the
surgery.

If anyone could advise on what sort of questions I should ask him I
would be very grateful.

Thanks in advance
Marina

---

No virus found in this incoming message.
Checked by AVG.
Version: 7.5.549 / Virus Database: 270.8.5/1756 - Release Date: 30/10/2008 07:59

Hi all,

I have finally got a date to meet my surgeon, I am seeing him on 4th
December so hopefully it won't be too long after this that i get the
surgery.

If anyone could advise on what sort of questions I should ask him I
would be very grateful.

Thanks in advance
Marina

Hi Rachel & Dick,

Thanks for the tips, especially one about painkillers. I have a
wonderful husband,without him I don't think I could have got through
the last 4 years, have 3 children - boys aged 17, 15 & 10 - who are
pretty good as well as it has been very hard on them as well, and
they are all willing to help as much as they can, as they just want
their mum back, oh and a barmy cocker spaniel called Sasha! It will
be good to even just be able to take her for a walk.

I will keep you updated.

Thanks again
Marina



--- In ukostomysupport@yahoogroups.com, RACHEL NEWTON <newton646@...>
wrote:
>
> Hi Marina, I have just read your email.  My husband has an
illeostomy and said to take plenty of good books to read on a variety
of subjects, and I recomend taking loose clothing and a pair of
flat shoes for when you come out because your tummy will still be
sore.  In between you may be disorientated when you first come round
from your op but dont worry this is normal after any op.  Please
make sure you take your painkillers when they are due as this will
keep them topped up so the pain is more manageable [ this tip came
from a nurse]. Make sure you ask any questions you want to, no
matter how silly they seem when you ask them.  You do not say if
you have any family but if you do get them on board to do as much for
you as they can because you wont feel like doing much [ you wont be
able to anyway for a start] Take things slowly and one step at a
time.  Remember it is not the end of your world just the beginning
of your new one.
> Good Luck and keep us informed of your progress
>  Rachel & Dick
>
>
>
> ----- Original Message ----
> From: sewmad12000 <sewmad12000@...>
> To: ukostomysupport@yahoogroups.com
> Sent: Saturday, 1 November, 2008 9:34:34 PM
> Subject: [UK Ostomy Support ] New
>
>
> Hi
>
> My name is Marina. I have just joined this site as I am due to have
a
> permanent ileostomy due to ulcerative colitis - diagnosed about 4
years
> ago. I don't have a date yet but have to phone on Monday to get an
> appointment to meet with my surgeon.
>
> Any tips that anyone could give me for going in to hospital would
be
> greatfully received.
>
> Thanks
> Marina
>

Hi

My name is Marina. I have just joined this site as I am due to have a
permanent ileostomy due to ulcertive colitis - diagnosed about 4 years
ago. I don't have a date yet but have to phone on Monday to get an
appointment to meet with my surgeon.

Any tips that anyone could give me for going in to hospital would be
greatfully received.

Thanks
Marina

sorry vanessa i am 5 months post opp christine.only realised after id
posted me e.mail.
>
> Hi fellow friends/ostomates!
>
> I wrote back in June - due to complications my surgery was rushed
fwd. I saw
> my surgeon for the first time and was admitted to hosp. 3 days
later. So
> there wasn't much preparation time.
>
> I had my op on Friday 20th June at night and was quite sick for a
few days
> after. Not sure if it was the morphine or the stoma not working or
both but
> I quit the morphine and the stoma started working and then I was
fine. :) I
> stayed an extra 24 hrs and went home on the 26th.
>
> I'm recovering very well physically. I didn't prepare for recovery!
I'm very
> independent so it was slow to start with but then I seemed to reach
a
> turning point and all of a sudden I could walk stood up straight
(and lose
> my duck waddle LOL) and was off painkillers very quickly, altho' I
hate
> taking meds for anything and so after 20 months of UC and meds it's
nice to
> not have to take any pills at all! My wound/scar split in 3 places
but is
> healed over now. I'm managing well with my ileostomy. I'm using a 2-
piece
> drainable that I only have to change twice a week and those are my
most
> anxious days as then I have to look at my stoma but it's shrunk
twice and so
> it's not half as bad now. :) I suppose it will take a while to get
used to.
> I have had the post-op blues and been quite withdrawn at times and
seem to
> have these yo-yo highs and lows but I suppose that is normal.
>
> You know, I had been ill for so long and running on low-to-empty
that I
> think I had forgotten what it was like to be/feel well and have
energy. It's
> wonderful! Honestly, I find myself getting excited over the thought
of being
> able to do the simplest of things again and have a new-found
appreciation
> for life! I was merely "existing" with the UC and battling thru' to
the end
> of each day. I'm not sure I want to risk what I have now by going
for the
> J-Pouch surgery. I know I will have to have at least one more op to
remove
> what's left if I don't.  I think I still have some UC there which
adds a bit
> of a twist to it all but I'll be seeing my surgeon again in Oct. to
discuss
> what's next.
>
> I guess I'm bound to have my ups & downs with this. Like sometimes
I'm
> excited to be getting back to "normal" and then it hits me that no,
my body
> is different now and won't ever be the same. Sometimes that makes
me sad for
> a moment but it passes quickly as I think of how much better I feel
and of
> all the life that the UC was robbing me of that I can have back
now. And it
> s still early days so I'm not up & running yet but I am up &
walking and
> that's an improvement on before. So far, there's more ups than
downs and
> when I count my blessings I have so much to be thankful & grateful
for. :)
> Rather than think that the UC has gone and taken a part of my body
with it,
> I prefer to think that a small part of my body was sacrificed to
save the
> rest of me. For that is what it comes down to.
>
> "Thank you" to everyone who responded to my original post. You've
all been a
> great help and support to me and I thank you sincerely. Love to
all. :)
>
>    Warmly,
>    Vanessa
>
>
> "You must be the change you want to see in the world."
>

hi vennesa i just read your story,sorry to hear u have had problems
thru uc,i had a opp april the 27th 08,i had had a bag for 5 yrs after
my colon twisted in preganacy,had baby deliverd by c.cection an a
ilostomy ,anyway i was worried to have a reversal so kept the
bag,until april this yr,when i developed a parastomial hernia,i asked
the surgeon if i cud be reconected an he sed we see in theater,so i
woke up with no pouch,an in a lot of pain complete bowel shut down,it
took me a  long time to feel better i was in hospital 13 days,anyway
i have been like you feeling up and down,my left side was hurting so
much,so friday gone the 3rd oct i went to see me consultant,he told
me why im hurting so much is becos they had to remove a lot of scar
tisssue wat caused the parastomial hernia,i have been nearly 6 months
on the mend,but he said it may take another 6 mmonths,i feel awful
complaining, and my back is hurting bad too.the consultant sed it
happens sometimes after stomache surgery.so hes wrote to me doc,im on
tramadol 1 in the mornin an 1 in the night.the surgeon said that he
hopes that it wont happen again as im a unluky person who develops a
lot of scar tissue,after the last opperation 5 yrs ago.an part of my
illenium had started to die an caused the parastomial hernia as the
ilenium was in the scar tissue.but i still am verry sore,my wound
completly opend after may stapels wer taken out 9 days after opp,so
had district nurse for 3 months.im glad theres this msg board as it
helps people with bowel problems.in my case iv had gangerene
twice.but yer i feel realy down i have 2 young children age 10 an
5 ,an feel i cant do wat i done with my 4 older children,but ma be 1
day il feel better just waiting for the day to arrive.ok bye for now
an ur msg helped me realise i was up and down like you are .good luk
for the future.christine from from liverpool uk.
>
> Hi fellow friends/ostomates!
>
> I wrote back in June - due to complications my surgery was rushed
fwd. I saw
> my surgeon for the first time and was admitted to hosp. 3 days
later. So
> there wasn't much preparation time.
>
> I had my op on Friday 20th June at night and was quite sick for a
few days
> after. Not sure if it was the morphine or the stoma not working or
both but
> I quit the morphine and the stoma started working and then I was
fine. :) I
> stayed an extra 24 hrs and went home on the 26th.
>
> I'm recovering very well physically. I didn't prepare for recovery!
I'm very
> independent so it was slow to start with but then I seemed to reach
a
> turning point and all of a sudden I could walk stood up straight
(and lose
> my duck waddle LOL) and was off painkillers very quickly, altho' I
hate
> taking meds for anything and so after 20 months of UC and meds it's
nice to
> not have to take any pills at all! My wound/scar split in 3 places
but is
> healed over now. I'm managing well with my ileostomy. I'm using a 2-
piece
> drainable that I only have to change twice a week and those are my
most
> anxious days as then I have to look at my stoma but it's shrunk
twice and so
> it's not half as bad now. :) I suppose it will take a while to get
used to.
> I have had the post-op blues and been quite withdrawn at times and
seem to
> have these yo-yo highs and lows but I suppose that is normal.
>
> You know, I had been ill for so long and running on low-to-empty
that I
> think I had forgotten what it was like to be/feel well and have
energy. It's
> wonderful! Honestly, I find myself getting excited over the thought
of being
> able to do the simplest of things again and have a new-found
appreciation
> for life! I was merely "existing" with the UC and battling thru' to
the end
> of each day. I'm not sure I want to risk what I have now by going
for the
> J-Pouch surgery. I know I will have to have at least one more op to
remove
> what's left if I don't.  I think I still have some UC there which
adds a bit
> of a twist to it all but I'll be seeing my surgeon again in Oct. to
discuss
> what's next.
>
> I guess I'm bound to have my ups & downs with this. Like sometimes
I'm
> excited to be getting back to "normal" and then it hits me that no,
my body
> is different now and won't ever be the same. Sometimes that makes
me sad for
> a moment but it passes quickly as I think of how much better I feel
and of
> all the life that the UC was robbing me of that I can have back
now. And it
> s still early days so I'm not up & running yet but I am up &
walking and
> that's an improvement on before. So far, there's more ups than
downs and
> when I count my blessings I have so much to be thankful & grateful
for. :)
> Rather than think that the UC has gone and taken a part of my body
with it,
> I prefer to think that a small part of my body was sacrificed to
save the
> rest of me. For that is what it comes down to.
>
> "Thank you" to everyone who responded to my original post. You've
all been a
> great help and support to me and I thank you sincerely. Love to
all. :)
>
>    Warmly,
>    Vanessa
>
>
> "You must be the change you want to see in the world."
>

There have been recent changes to the IA logo and web site. I have
posted the new web address in the links section. If you have an
ileostomy or an internal pouch and live in the UK I would consider
being a member. There is a quarterl magazine full of useful info and
usually each group has regular meetings.
If you require contact info regarding your local group please contact
me via this website and I'll be glad to help.
Stew AKA Globey

Hi Jo,
sorry that your Crohn's has returned so soon. :(

Have a look at:
D.L.A. advice specifically for people with IBD
http://www.scottwd1.pwp.blueyonder.co.uk/dla.htm

and then:
http://www.ostomylinks.co.uk/disability.html

I can't vouch for the reliability of the advice, but it seems good to me.

Also, we've found Welfare Rights extremely helpful and supportive -
they might be a good place to start if you have a local branch.
Google "Welfare Rights" plus your own home town.

They should know which benefits apply to you and help you fill in the
forms. I'd strongly advise you to get help with this as it's a matter
of knowing how the system works.

Good luck,
Kathy

--- In ukostomysupport@yahoogroups.com, "joannehayward26"
<joannehayward26@...> wrote:
>
> Hi, i am new to the group i had a total colectomy last august and am
> now left with an ileostomy.
> I suffered from chron's disease for 15yrs, i hoped this would keep it
> at bay for several years but i think it has returned.
> I wondered if anyone knows if i am entitled to any benefits?
> Or if there's a website i can use to find out.
> Many thanks hope everyones feeling ok jo
>

Hi, i am new to the group i had a total colectomy last august and am
now left with an ileostomy.
I suffered from chron's disease for 15yrs, i hoped this would keep it
at bay for several years but i think it has returned.
I wondered if anyone knows if i am entitled to any benefits?
Or if there's a website i can use to find out.
Many thanks hope everyones feeling ok jo

--- In ukostomysupport@yahoogroups.com, "♥ Vanessa ♥ "
<kismetz_angel@...> wrote:
>Hi Vanessa Iam so pleased to hear from you and know that you are
doing so well after your op. You sound great. Of course you will have
your down days I am sure it is only natural, but every day now you
will feel stronger and have less down and more up days, Keep going I
think you are well on the mend. lots of hugs. It's my turn now I am
going in for a Mitrofanoff procedure on the 17th August. Will be glad
when it is over, so hearing how well you have done has really helped
me thanks.
> Hi fellow friends/ostomates!
>
> I wrote back in June - due to complications my surgery was rushed
fwd. I saw
> my surgeon for the first time and was admitted to hosp. 3 days
later. So
> there wasn't much preparation time.
>
> I had my op on Friday 20th June at night and was quite sick for a
few days
> after. Not sure if it was the morphine or the stoma not working or
both but
> I quit the morphine and the stoma started working and then I was
fine. :) I
> stayed an extra 24 hrs and went home on the 26th.
>
> I'm recovering very well physically. I didn't prepare for recovery!
I'm very
> independent so it was slow to start with but then I seemed to reach
a
> turning point and all of a sudden I could walk stood up straight
(and lose
> my duck waddle LOL) and was off painkillers very quickly, altho' I
hate
> taking meds for anything and so after 20 months of UC and meds it's
nice to
> not have to take any pills at all! My wound/scar split in 3 places
but is
> healed over now. I'm managing well with my ileostomy. I'm using a 2-
piece
> drainable that I only have to change twice a week and those are my
most
> anxious days as then I have to look at my stoma but it's shrunk
twice and so
> it's not half as bad now. :) I suppose it will take a while to get
used to.
> I have had the post-op blues and been quite withdrawn at times and
seem to
> have these yo-yo highs and lows but I suppose that is normal.
>
> You know, I had been ill for so long and running on low-to-empty
that I
> think I had forgotten what it was like to be/feel well and have
energy. It's
> wonderful! Honestly, I find myself getting excited over the thought
of being
> able to do the simplest of things again and have a new-found
appreciation
> for life! I was merely "existing" with the UC and battling thru' to
the end
> of each day. I'm not sure I want to risk what I have now by going
for the
> J-Pouch surgery. I know I will have to have at least one more op to
remove
> what's left if I don't.  I think I still have some UC there which
adds a bit
> of a twist to it all but I'll be seeing my surgeon again in Oct. to
discuss
> what's next.
>
> I guess I'm bound to have my ups & downs with this. Like sometimes
I'm
> excited to be getting back to "normal" and then it hits me that no,
my body
> is different now and won't ever be the same. Sometimes that makes
me sad for
> a moment but it passes quickly as I think of how much better I feel
and of
> all the life that the UC was robbing me of that I can have back
now. And it
> s still early days so I'm not up & running yet but I am up &
walking and
> that's an improvement on before. So far, there's more ups than
downs and
> when I count my blessings I have so much to be thankful & grateful
for. :)
> Rather than think that the UC has gone and taken a part of my body
with it,
> I prefer to think that a small part of my body was sacrificed to
save the
> rest of me. For that is what it comes down to.
>
> "Thank you" to everyone who responded to my original post. You've
all been a
> great help and support to me and I thank you sincerely. Love to
all. :)
>
>    Warmly,
>    Vanessa
>
>
> "You must be the change you want to see in the world."
>

I've just got back (an hour ago) from a trip to Puerto Rico via Newark
in New Jersey. Heathrow to Newark was 7 hours, a 4 hour lay over then
another 4 hour flight to Puerto Rico. I found security were great,
very discreet and professional. I've had my colostomy since 1975 so
I'm pretty used to it but this was my most daring solo trip. I did
pre-book my plane seats so as to have tho loo handy. Trust me it's a
lot easier than on a Russian train!

If you want any more info, please feel free to ask.

Dave

On 02/07/2008, phsonksen@... <phsonksen@...> wrote:
> No problem!
>
> Best  wishes
>
> Peter
>
> Peter C4/5  incomplete - just walking short distances with Rollator
> 72 skiing accdent in  Utah 27/12/2002. Urostomy for bladder cancer 5/2004.
> Retired physician,  Winchester UK.
>
>
>
>
>
>

hi

i have a colostomy and a hurnia around the site so there is a bigish
lump there

will i have any problems geting thru securaty at the airport in the uk
and in usa ?

will there be any problems flying ?

also i see the surgon this week to see if it can be repaired i think it
my be best leaving it alone till i get back from my hoilday if i have
an op i wont be able to fly for a bit

thanks
mick

If you are having this done in the UK then I wish you all the luck in
the world and then some........

Andre
--- In ukostomysupport@yahoogroups.com, "rachel622650" <newton646@...>
wrote:
>
> Hi nessa I dont have an ostomy but my husband does.  Please if your
> son would like to talk to someone in the same position as himself
> may be I can help . There must be all sorts of questions he would
> like to ask but is too afraid to ask you so you are not upset . I
> know its a bit late to answer and you probably wont get this until
> youre home but I hope all goes well for you
>  Rach
>
> --
> - In ukostomysupport@yahoogroups.com, "♥ Vanessa ♥ "
> <kismetz_angel@> wrote:
> >
> >
> >
> >        
> > My name's Vanessa altho' I answer to all variations of it - Ness,
> Nessa,
> > Nessie etc. :) I live in the UK.
> >
> > I was told a couple of months ago that surgery would be my only
> option. I
> > have had UC (pancolitis) for 18 months and am, unfortunately,
> > steroid-dependant. I chose not to take steroids while I waited for
> surgery.
> > I'm still taking 125 mgs Imuran and 3 grams Pentasa daily.
> Originally I had
> > an appt. to see a surgeon next month but it was brought fwd
> suddenly to
> > Monday (yesterday) and now I am being admitted to hosp. on
> Thursday and
> > having the op. sometime this weekend. Due to complications, and
> specifically
> > risk of a blood clot (which I had one in Dec - both lungs - that
> possibly
> > travelled from my leg), the surgeon told me I'm in "that grey
> area" between
> > elective surgery and emergency surgery. Initially I had thought to
> try for
> > the J-Pouch surgery if offered but I'm too ill, there is a 4 month
> waiting
> > list and my surgeon and Dr's are sure I would have a clot by then
> and not
> > last w/out needing an emergency op. However, this can still be an
> option for
> > me in the future but for now I will have the ileostomy and might
> even opt to
> > keep it permanently. We'll see! I was told the surgeon usually
> does this
> > surgery "keyhole" but that since he didn't mention it to me, I
> have to
> > assume I'm too ill for that and will have the full cut so he can
> uh, well,
> > go in, get it and get out" I suppose. (That's how I grocery shop!
> *G*) The
> > stoma nurse made him sound like Zorro with a scalpel. :)
> >
> > I'm quite positive. I'm wearing a "baggy" around the house today
> and feel
> > fortunate to have some say in where my stoma will be positioned.
> Truth is,
> > there is only one place it feels right in so I guess that's the
> spot!
> >
> > Well that's my rambling intro. I guess I will be back post-
> surgery. I am
> > supposed to be having root canal work on my tooth (due to steroid
> damage)
> > tomorrow but guess it will be a temp. filling now. I also have a
> head cold
> > and so I'm like that saying - "I only have one other speed and
> it's slower".
> > But I'm too tired to be anything other than calm and calm is good.
> Naturally
> >  I'm not worried about leaving my teenage son in charge of our
> home... I
> > mean, I will have morphine, right? =oP
> >
> > Hope you are all safe and well. See you online soon/soonish. :)
> >
> >    ~Hugs~
> >    Vanessa
> >
>

Hi nessa I dont have an ostomy but my husband does.  Please if your
son would like to talk to someone in the same position as himself
may be I can help . There must be all sorts of questions he would
like to ask but is too afraid to ask you so you are not upset . I
know its a bit late to answer and you probably wont get this until
youre home but I hope all goes well for you
  Rach

--
- In ukostomysupport@yahoogroups.com, "♥ Vanessa ♥ "
<kismetz_angel@...> wrote:
>
>
>
>        
> My name's Vanessa altho' I answer to all variations of it - Ness,
Nessa,
> Nessie etc. :) I live in the UK.
>
> I was told a couple of months ago that surgery would be my only
option. I
> have had UC (pancolitis) for 18 months and am, unfortunately,
> steroid-dependant. I chose not to take steroids while I waited for
surgery.
> I'm still taking 125 mgs Imuran and 3 grams Pentasa daily.
Originally I had
> an appt. to see a surgeon next month but it was brought fwd
suddenly to
> Monday (yesterday) and now I am being admitted to hosp. on
Thursday and
> having the op. sometime this weekend. Due to complications, and
specifically
> risk of a blood clot (which I had one in Dec - both lungs - that
possibly
> travelled from my leg), the surgeon told me I'm in "that grey
area" between
> elective surgery and emergency surgery. Initially I had thought to
try for
> the J-Pouch surgery if offered but I'm too ill, there is a 4 month
waiting
> list and my surgeon and Dr's are sure I would have a clot by then
and not
> last w/out needing an emergency op. However, this can still be an
option for
> me in the future but for now I will have the ileostomy and might
even opt to
> keep it permanently. We'll see! I was told the surgeon usually
does this
> surgery "keyhole" but that since he didn't mention it to me, I
have to
> assume I'm too ill for that and will have the full cut so he can
uh, well,
> go in, get it and get out" I suppose. (That's how I grocery shop!
*G*) The
> stoma nurse made him sound like Zorro with a scalpel. :)
>
> I'm quite positive. I'm wearing a "baggy" around the house today
and feel
> fortunate to have some say in where my stoma will be positioned.
Truth is,
> there is only one place it feels right in so I guess that's the
spot!
>
> Well that's my rambling intro. I guess I will be back post-
surgery. I am
> supposed to be having root canal work on my tooth (due to steroid
damage)
> tomorrow but guess it will be a temp. filling now. I also have a
head cold
> and so I'm like that saying - "I only have one other speed and
it's slower".
> But I'm too tired to be anything other than calm and calm is good.
Naturally
>  I'm not worried about leaving my teenage son in charge of our
home... I
> mean, I will have morphine, right? =oP
>
> Hope you are all safe and well. See you online soon/soonish. :)
>
>    ~Hugs~
>    Vanessa
>