Folks, my PC is still out of commission & I'm am writing this from
Kinko's. I'm going to have to go no email for a while. Hope to see you
all soon.

Wayne

kindest regards christine

kindest regards christine

Hi Michele,

I had my pouch formed in July 2003 and the ileotomy closed last May. I had
ulcerative colitis so cannot comment on Crohns disease.

It won't be easy to begin with. Sometimes I found it difficult and
uncomfortable to go, sore I and didn't have good control, needing to find
the bathroom quickly or having accidents. Sometimes I began to wish I hadn't
had the reversal done at all. However, it is important to realise that
things need time to settle down and for you to get used to the new plumbing.
If you persevere it will get better.

I can control things very well now and rarely need to find the bathroom
quickly (I've only had two minor accidents in the last six months). I feel
confident going out for the day and have plenty of time to find a toilet
when I want to go. One thing I've noticed is if the output gets too acidic
then things are more difficult to control. I've found that including some
fibre, wheat bran, in my diet helps a lot.

Frequency is still slightly worse than when I had an ileostomy, but I don't
think that is the important issue (after all, how many times do you have to
urinate in a day?), as long as it is controllable.

But remember that everyone is different, so talk to as many people as you
can.

Finally, sometimes you hear horror stories about reversals that have gone
wrong. It's like watching the news on TV, most of it is bad news, anything
good rarely gets a mention. I think most reversals work quite well (they
will never be as good as before you lost your colon) and their owners are
happy with the result.

Good luck,
Mike King


>    Date: Fri, 17 Jun 2005 16:08:10 -0000
>    From: "hydra_girl_101" <hydra_girl_101@...>
> Subject: Ileostomy Reversal
>
> Hi all.  I've had my ileostomy for 3 years now, it was due to
> CD and I had all of my colon and a very small section of my
> small intestine removed, but my rectum and bowel are still in
> place if I ever wished to have a reversal.  I always thought
> about having it done after 5 years of remission from CD and
> now I've just gone past 3 years I thought I'd do some
> research on it.  I'd like to know from your experiences, when
> you have the reversal done, roughly how often are you having
> to empty your bowels a day? Do you have much control over
> them, or is it a case of you have to always find a bathroom
> immediatly. Are the chances of CD returning higher if I have
> the reversal done? Roughly how long is it to recover from the
> reversal operation?  If after having the reversal I did get
> CD back again, how easy is it to have the stoma re-reversed?
>
> Sorry for so many questions but I'd like to get an idea of
> peoples personal experiences with this.....
>
> Thanks
> Michele

Hi all.  I've had my ileostomy for 3 years now, it was due to CD and I
had all of my colon and a very small section of my small intestine
removed, but my rectum and bowel are still in place if I ever wished
to have a reversal.  I always thought about having it done after 5
years of remission from CD and now I've just gone past 3 years I
thought I'd do some research on it.  I'd like to know from your
experiences, when you have the reversal done, roughly how often are
you having to empty your bowels a day? Do you have much control over
them, or is it a case of you have to always find a bathroom
immediatly. Are the chances of CD returning higher if I have the
reversal done? Roughly how long is it to recover from the reversal
operation?  If after having the reversal I did get CD back again, how
easy is it to have the stoma re-reversed?

Sorry for so many questions but I'd like to get an idea of peoples
personal experiences with this.....

Thanks
Michele

kindest regards christine

__________________________________________________
Do You Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

Cathryn

There is a connection between UC and Arthritis. I has UC and a couple other
diseases of the area and now have arthritis. I went to a Rheumatologist, but
he couldn't be sure that my arthritis was affiliated with the UC.

The arthritis began in my hands and R knee.  I now have arthritis in
bilateral knees (R is worse), ankles/toes, hands/wrists, shoulders (R is
worse) and lower back.  I am taking Lexapro 10 mg (1 x a day) plus Voltaren
(can't remember the dosage 2 X a day).  It works for me - my pain is minimal
as long as I don't miss a dose.  I was on Bextra until they removed it from
the market.  I tried Celebrex and Relafen first and after 4 days with each
one, was in so much pain, I cried all the time.  My doctor said it's a
matter of chance what will work, but not to give up.  He said after a week
on any one medication, you will know if it's working or not. I got lucky on
the third try!.

Good luck and write if you'd like to chat.

Angel hugs

Tina



----- Original Message -----
From: "sassy_brat83" <cathibreau02@...>
To: <ukostomysupport@yahoogroups.com>
Sent: Friday, June 10, 2005 9:19 AM
Subject: [UK Ostomy Support ] Arthritis and Ulcerative Colitis


> Hi all:
>
> Has anyone any information on Arthritis being associated with having
> Ulcerative Colitis in the past...or any of the IBD's?I had UC for two
> years before my Ileostoty...this was from ages 16-18...and in 1952.
> So, there you have it...I am an oldie with regard to an Ileostomy.
> Now, arthritis is VERY BAD. Just curious.
>
> Cathryn
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>

Stew,

It would be awful if the group were to close, I remember how muchhelp I got
when I first found it. Many members - some sadly no longer with us, but
loads of positive advice - from you as well!!! I notice a lot of the 'old'
names no longer - but new peoples should be coming on. I would love to help
more, but am not computer literate enough. It will be a sad day if this
group should close - it saved my life in the early days of my 'ostomy'.
Surely there must be someone out there?
Hope you are well - still biking?
Love Tiggyxxx




@yahoogroups.com
>To: ukostomysupport@yahoogroups.com
>Subject: [UK Ostomy Support ] The Group
>Date: Fri, 10 Jun 2005 09:45:15 -0000
>
>Looks like no one is interested,so unless anyone comes forward I have
>it in mind to delete the group on June 31st.
>  It would be a shame for it to end this way after all the good work
>members have done over the years.
>If anyone has any comments please post them.
>Stew/Globey
>
>
>

Hiya, yes Clactons only about 3/4 hour drive from me, I used to go
there a few times as a kid on family holidays, haven't been in years
though.....

Michele

--- In ukostomysupport@yahoogroups.com, "Cushway family" <floyd@m...>
wrote:
> My husband, who had the colostomy was from England (now Australia)
our son
> has been in Clacton to sell an Aunt's house for us just last month.
He is
> now in Isle of Skye.

Hi Dave, it's good to know that there are other ileostomates in my
local area, there are probably loads, we just don't know it :)

Michele

Hi

I was hoping to get some advice or information.

Two years ago (I am 38) I had a colostomy, following an operation to
remove a tumour and sacram (lower back)which has worked out well and
causes no problems at all. However, I may need to consider if I wish
to have a urostomy or a maopothy (I am not sure of this spelling,
its were an artificial ureatha is created, that exits trough the
belly button. Which will allow me to use SICs and hopefully not need
abag).

My consultant is not keen on the 2nd choice (I wish I knew the
spelling)-as he feels that there is often a danger of reversal  but,
if anyone knows what I mean, I would be really grateful for advice
or information on how others have found this option.

Also , if I do end up having to have a urostomy (and a 2nd bag on my
tummy) would I also need to use a night bag at night-I am not keen
on the idea on being hooked up to a tube but would welcome feedback
on how others have found it.

Thanks

Kay

Me too....I have had my ostomy for 52 years....and there was no support
then...I am sure the new ostomates need this Group.   What can we do?



Cathryn




From: bernie brennan <bernie609@...>
Reply-To: ukostomysupport@yahoogroups.com
To: ukostomysupport@yahoogroups.com
Subject: Re: [UK Ostomy Support ] The Group
Date: Sat, 11 Jun 2005 03:17:57 +0100 (BST)

Hi Stewart
So sorry to hear that the group may be disbanded. I had my iliostomy in 2001
and only for this group I don't know what I would have done. Any questions
I had were always answered for me and any information that I learnt for
myself was passed on either in the chat room or by email. It would be such a
pity for the simple reason because there is very little help out there apart
from the iliostomy nurse who is so busy and for me it means travelling a
good distance. Loosing this group would be like loosing close friends.
When i had my iliostomy i felt so alone and could not express how I felt to
anyone especially my loved ones but everyone here understood because they
have all been through the same thing.
I don't know what it would take to keep this group on but I would be willing
to help in any way i can.

Regards,
Bernie
bernie609@...


Stewart <globetrotteruk@...> wrote:
Looks like no one is interested,so unless anyone comes forward I have
it in mind to delete the group on June 31st.
It would be a shame for it to end this way after all the good work
members have done over the years.
If anyone has any comments please post them.
Stew/Globey







Yahoo! Groups Links









---------------------------------
How much free photo storage do you get? Store your holiday snaps for FREE
with Yahoo! Photos. Get Yahoo! Photos

kindest regards christine

kindest regards christine

Hi Stew

It is a shame.

It seems not so long ago when this group generated so much valuable support
and activity.

I am sorry that I do not have the time to commit to becoming involved, so
understand your decision. I thank you for everything you have done lo look
after and promote the group.

Every best wish to you and all .......... RALPH

>From: "Stewart" <globetrotteruk@...>
>Reply-To: ukostomysupport@yahoogroups.com
>To: ukostomysupport@yahoogroups.com
>Subject: [UK Ostomy Support ] The Group
>Date: Fri, 10 Jun 2005 09:45:15 -0000
>
>Looks like no one is interested,so unless anyone comes forward I have
>it in mind to delete the group on June 31st.
>  It would be a shame for it to end this way after all the good work
>members have done over the years.
>If anyone has any comments please post them.
>Stew/Globey
>
>
>

_________________________________________________________________
Express yourself instantly with MSN Messenger! Download today it's FREE!
http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

-----Original Message-----
From: ukostomysupport@yahoogroups.com [mailto:ukostomysupport@yahoogroups.com]On Behalf Of hydra_girl_101
Sent: Saturday, 11 June 2005 1:14 AM
To: ukostomysupport@yahoogroups.com
Subject: [UK Ostomy Support ] I'd like to introduce myself........

Hi all, my names Michele and I'm 28 years old and come from Essex,
UK.  I had an ileostomy operation just over 3 years ago due to CD,
obviously having a stoma isn't the ideal situation, but I'm alive,
I'm
healthy, and I'm happy.  It hasn't always been like that though, it
took me quite a while to get used the stoma and all it's little
habits
and I did have a lot of self image problems to start with, but as
time
has gone on I've grown in confidence and feel I can do anything I set
my heart on.

Michele

> Hi all, my names Michele and I'm 28 years old and come from Essex,
> UK.  I had an ileostomy operation just over 3 years ago due to CD,

Hi Michele, I'm also an Essex resident; I've had my ileostomy a bit longer
than you, 12 years in fact :-) for UC when I was 21.

Wow, it's hard to imagine that this group would be disbanded. I've only been a
member for about 6 months, but have received lots of help, that wasn't
available elsewhere. Just went to the UOA site (United Ostomy Association) and
they are DISBANDING their entire organization! Between both sites...all of the
resources available in the libraries, etc. it's a darn shame. What would it
take to keep THIS site going? Not sure if I can help, but I'd like to get an
idea before it all disappears before our eyes. Feel free to email me
(rnceus@... or barb@...) to let me know what's involved.....Barb
from Arizona

ukostomysupport@yahoogroups.com wrote:

>
> There are 6 messages in this issue.
>
> Topics in this digest:
>
>       1. The Group
>            From: "Stewart" <globetrotteruk@...>
>       2. RE: The Group
>            From: "Cushway family" <floyd@...>
>       3. Arthritis and Ulcerative Colitis
>            From: "sassy_brat83" <cathibreau02@...>
>       4. Re: Arthritis and Ulcerative Colitis
>            From: Dave 'Gizmo' Gymer <micra.geo@...>
>       5. I'd like to introduce myself........
>            From: "hydra_girl_101" <hydra_girl_101@...>
>       6. Saturday/Weekend Ostomy IRC Chat
>            From: "Kathy" <Kathy_ya@...>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Fri, 10 Jun 2005 09:45:15 -0000
>    From: "Stewart" <globetrotteruk@...>
> Subject: The Group
>
> Looks like no one is interested,so unless anyone comes forward I have
> it in mind to delete the group on June 31st.
>  It would be a shame for it to end this way after all the good work
> members have done over the years.
> If anyone has any comments please post them.
> Stew/Globey
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 2
>    Date: Fri, 10 Jun 2005 22:18:05 +0930
>    From: "Cushway family" <floyd@...>
> Subject: RE: The Group
>
> We have appreciated the information we have received in the past 6 months,
> but we sleep while you play and vice versa here in Australia.
>   -----Original Message-----
>   From: ukostomysupport@yahoogroups.com
> [mailto:ukostomysupport@yahoogroups.com]On Behalf Of Stewart
>   Sent: Friday, 10 June 2005 7:15 PM
>   To: ukostomysupport@yahoogroups.com
>   Subject: [UK Ostomy Support ] The Group
>
>   Looks like no one is interested,so unless anyone comes forward I have
>   it in mind to delete the group on June 31st.
>   It would be a shame for it to end this way after all the good work
>   members have done over the years.
>   If anyone has any comments please post them.
>   Stew/Globey
>
> ----------------------------------------------------------------------------
> --
>   Yahoo! Groups Links
>
>     a.. To visit your group on the web, go to:
>     http://groups.yahoo.com/group/ukostomysupport/
>
>     b.. To unsubscribe from this group, send an email to:
>     ukostomysupport-unsubscribe@yahoogroups.com
>
>     c.. Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
>
> [This message contained attachments]
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 3
>    Date: Fri, 10 Jun 2005 14:19:26 -0000
>    From: "sassy_brat83" <cathibreau02@...>
> Subject: Arthritis and Ulcerative Colitis
>
> Hi all:
>
> Has anyone any information on Arthritis being associated with having
> Ulcerative Colitis in the past...or any of the IBD's?I had UC for two
> years before my Ileostoty...this was from ages 16-18...and in 1952.
> So, there you have it...I am an oldie with regard to an Ileostomy.
> Now, arthritis is VERY BAD. Just curious.
>
> Cathryn
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 4
>    Date: Fri, 10 Jun 2005 15:37:38 +0100 (BST)
>    From: Dave 'Gizmo' Gymer <micra.geo@...>
> Subject: Re: Arthritis and Ulcerative Colitis
>
> I've had occaisional problems with arthritis, especially in my right knee,
> ever since I was about 4. :-o Whether there is a relationship of any sort
> with my short-lived UC is an interesting and unanswered question...
> Certainly, because my one and only attack of UC in 1993 I had moderate
> back ache for 3-4 weeks which with hindsight was clearly related.
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 5
>    Date: Fri, 10 Jun 2005 15:44:22 -0000
>    From: "hydra_girl_101" <hydra_girl_101@...>
> Subject: I'd like to introduce myself........
>
> Hi all, my names Michele and I'm 28 years old and come from Essex,
> UK.  I had an ileostomy operation just over 3 years ago due to CD,
> obviously having a stoma isn't the ideal situation, but I'm alive,
> I'm
> healthy, and I'm happy.  It hasn't always been like that though, it
> took me quite a while to get used the stoma and all it's little
> habits
> and I did have a lot of self image problems to start with, but as
> time
> has gone on I've grown in confidence and feel I can do anything I set
> my heart on.
>
> Michele
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 6
>    Date: Fri, 10 Jun 2005 15:53:04 -0000
>    From: "Kathy" <Kathy_ya@...>
> Subject: Saturday/Weekend Ostomy IRC Chat
>
> Main Chat is 8pm UK Time which is 3pm EST ish.
>
> All ostomists welcome, whatever the condition, whatever the age.
> Maybe you face a possible ostomy in the future? Or simply want more
> information? All are welcome.
>
> Want to chat another time? The rooms are open 24/7 and are becoming
> increasingly busy throughout the weekend. Drop by and see if anyone
> is there.
>
> =========
>
> To join Ostomyland via java go to:
> http://www.ostomysupport.info/chat.html (Jason's page)
>
> Or http://www.autoimmunity.co.uk/chat/ostomyland.html (Kathy's page)
>
> and join us in the ostomyland chat room from there. A free-to-use
> Java Client is embedded into the page that is dead easy to use.
> Nothing to download.
>
> =========
>
> If you use mIRC, or Besirc or some other IRC Chat Client, here's the
> server details you need to connect to Ostomyland:
>
> Server: irc.zirc.org
> Port: 6667
> Channel: #ostomyland
>
> If you prefer a specially configured version of mIRC is now available
> which will take people directly to the new channel on the new server.
> Full details and the download link can be found at
> http://www.ostomysupport.info/mirc.html
> (This is my favourite - mIRC can do so much more!)
>
> WebTV Users, you need to use your own TV based software to join us -
> included free as part of the WebTV browser software. Use the server
> and port and channel
> info when requested by your software to join.
>
> =========
>
> We often have members who have never been in a chatroom before.
> Please don't be nervous. These pages will show you exactly what to
> expect and what to do. If you're still unsure after you've looked at
> them, email me for help.
>
> http://www.ostomysupport.info/cgi-bin/yabb/YaBB.pl?
> board=techsupport;action=display;num=1098295095
>
> =========
>
> The channels are open 24/7 for general chit chat or ostomy talk
> during the week, and are becoming increasingly busy. If you drop by
> and it's quiet, stay a while - someone else may join the room soon.
>
> =========
>
> Look forward to seeing you in the meeting Saturday night, the weekend
> or later on
> in the week.
>
> Kathy :)
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> ------------------------------------------------------------------------
> Yahoo! Groups Links
>
>
>
>
> ------------------------------------------------------------------------

Hi,

Would just like to say I would be willing to help out.  As I'm on
maternity leave it would give me something to do.  If you could run
me through what I need to do I'll gladly take it on.

Let me know.

Ruth

--- In ukostomysupport@yahoogroups.com, "Stewart"
<globetrotteruk@y...> wrote:
> As you may have noticed the group activity has fallen to almost
zero
> over the last few months.I must take much of the blame for this
having
> become involved in charity work and having less time to devote to
the
> group.
> What I'd like to propose is that a couple of members come forward
to
> organise the running of the group and try to get things moving
again.
> The group has been through a number of changes over the years,but
the
> changes with Yahoo have been the worst.Mainly the change in the
chat
> programme making it difficult to use.
> So is there anyone out here,preferably two one being from the UK
who
> can get things moving again.
> I feel the alternative is to close the club.
>
>
> Stew/Globey

Hi all, my names Michele and I'm 28 years old and come from Essex,
UK.  I had an ileostomy operation just over 3 years ago due to CD,
obviously having a stoma isn't the ideal situation, but I'm alive,
I'm
healthy, and I'm happy.  It hasn't always been like that though, it
took me quite a while to get used the stoma and all it's little
habits
and I did have a lot of self image problems to start with, but as
time
has gone on I've grown in confidence and feel I can do anything I set
my heart on.

Michele

I've had occaisional problems with arthritis, especially in my right knee,
ever since I was about 4. :-o Whether there is a relationship of any sort
with my short-lived UC is an interesting and unanswered question...
Certainly, because my one and only attack of UC in 1993 I had moderate
back ache for 3-4 weeks which with hindsight was clearly related.

Hi all:

Has anyone any information on Arthritis being associated with having
Ulcerative Colitis in the past...or any of the IBD's?I had UC for two
years before my Ileostoty...this was from ages 16-18...and in 1952.
So, there you have it...I am an oldie with regard to an Ileostomy.
Now, arthritis is VERY BAD. Just curious.

Cathryn

-----Original Message-----
From: ukostomysupport@yahoogroups.com [mailto:ukostomysupport@yahoogroups.com]On Behalf Of Stewart
Sent: Friday, 10 June 2005 7:15 PM
To: ukostomysupport@yahoogroups.com
Subject: [UK Ostomy Support ] The Group

Looks like no one is interested,so unless anyone comes forward I have
it in mind to delete the group on June 31st.
It would be a shame for it to end this way after all the good work
members have done over the years.
If anyone has any comments please post them.
Stew/Globey

Looks like no one is interested,so unless anyone comes forward I have
it in mind to delete the group on June 31st.
  It would be a shame for it to end this way after all the good work
members have done over the years.
If anyone has any comments please post them.
Stew/Globey

As you may have noticed the group activity has fallen to almost zero
over the last few months.I must take much of the blame for this having
become involved in charity work and having less time to devote to the
group.
What I'd like to propose is that a couple of members come forward to
organise the running of the group and try to get things moving again.
The group has been through a number of changes over the years,but the
changes with Yahoo have been the worst.Mainly the change in the chat
programme making it difficult to use.
So is there anyone out here,preferably two one being from the UK who
can get things moving again.
I feel the alternative is to close the club.


Stew/Globey

Below are a few links about irrigating. Also, you can
put "irrigating colostomy" in the search engine and see what comes
up. Everybodys body is different, but it does make life a lot easier
for some people. Until you make a decision, you might also try
flushable liners  (http://www.colostomymajic.com/) for your bag.
That makes life easier also. Good luck!

http://www.ostomates.org/irrigation.html


http://p207.ezboard.com/fostomyforum66946frm9.showMessage?
topicID=1.topic


http://www.utmb.edu/policy/nursing/search/07-06-
03.pdf#search='irrigating%20colostomy'





--- In ukostomysupport@yahoogroups.com, "Cushway family"
<floyd@m...> wrote:
> Hi, everyone.  We don't contribute much but have been learning
from what we
> read.  More about irrigation please.  I would like to know what is
involved
> about doing the irrigation (like how etc).  Does everyone do the
same etc
> and what is used.  We live in Australia (Adelaide) but my husband,
who has
> had the colostomy since Christmas, comes from London.
>
> Our son is in Scotland at the moment as he went to the UK to try
and sell a
> house that was left to us in Clacton-on-Sea.
>
> My husband (Alan) seems to have trouble in the evenings, emptying
several
> times during the night.  He is working so at least it helps during
the day.
> Any suggestions would be great.
>
> Judy and Alan