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AnnaS Mine stopped me from going crazy :-)
Candyfloss if u will be such a bully!
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Shaz roflmsuao
judith11 What?
Shaz roflmsuao - rolling on floor laughing my sewn up a____ off
AnnaS But why not a continent pouch?
maureneN Couldn't travel without it Shaz
Candyfloss Difficult to change perspective-- book Shaz and I recommend by Barabara Dorr Mullenn taklks about the 'Its only temp' feeling
Shaz absolutely - that book is my "ostomy bible"
Candyfloss its good - got updated edition..
AnnaS Where can I find that book?
judith11 What book u talking about?
Shaz Kezz, will be back soon
Candyfloss shaz can help - also AMAZON
Candyfloss amazons on the net
Shaz it's a book called "The Ostomy Book - Living comfortably with Colostomies, Ileostomies and Urostomies" by Barbara Dorr Mullen and Kerry Anne McGinn
Shaz it explains everything in everyday English including the emotional side of things
Candyfloss She wrote book a while ago and since died (of old age?)
Shaz I think so Candy
Candyfloss its easy to read
AnnaS Sounds like a book to get hold on!
Candyfloss her daughter (Msginn) is a nurse
Shaz Anna, (here's a bit of advertising) go to http://ostomy.50megs.com/links/books.html You can order it from there
Candyfloss Mullen had colostomy due to cancer
judith11 When I first got mine I read another book called I think the Ostomy Book, but aman wrote it
Shaz I will earn a whole 60c commission from it bringing my total to about $6.50 in the past 6 months - I'm gonna be rich lol
AnnaS Ill think about it and come back when my boss gives me my money!
Shaz do you remember who Judith?
Candyfloss the next internet Millionare
Candyfloss its paperback so not that expensive
AnnaS I will begin on Feb 1....
Candyfloss begin what?
judith11 No, Sorry but its in the library in my town and I'ii tell you next week or I'll e-mail it to you
maureneN I'm off now will try to catch this chat earlier next week Keep well everyone
Shaz ok, cool
Candyfloss seeya maureen
judith11 Bye
Shaz cya Maurene - stay well
AnnaS My new job in a Pharmacy! Im very happy about it.
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Shaz Anna, that is so great!
Candyfloss am off too - let me have info on visit as soon as you know shaz :-))
AnnaS Bye MaureenN
judith11 What will u be doing?
Shaz cya Candy, I will
Candyfloss be well all - bye
judith11 Bye Candy
Shaz H U G S §®¤º° Candyfloss °º¤®§ H U G Si
Shaz H U G S §®¤º° Candyfloss °º¤®§ H U G S
Shaz H U G S §®¤º° Candyfloss °º¤®§ H U G S
Shaz H U G S §®¤º° Candyfloss °º¤®§ H U G S
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AnnaS Hmm, cant explain in English, havent got the right words :-(
judith11 Oh well thats ok
AnnaS Help people with minor problems, right headache pill to take, hand out medicines etc.
judith11 I do have somethoing I need to talk about
Shaz I went to the pharmacy last week to get my ears pierced again. The girl did the first one and then the second one....
Kezz back
AnnaS And....?
Shaz then whilst holding the piercing gun to my ear called for the pharmacist...meanwhile I'm standing there wondering... lol seems like the back hadn't connected with the front of the earring
judith11 I get a lot of infections and go in the hospital because of my urostomy
Shaz everything was ok but she was sssooo apologetic
Shaz wb Kezz
Shaz infections in the bladder Judith?
Kezz ta Shaz
judith11 Well what I ahev now is a continent pouch
judith11 Anyway i was in this past week thats why I didnt join in last chat
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Shaz Judith, I've just got Karen from California's video on urostomates so I understand a little of what you're saying - it mentions how urostomates have to be careful about infections
Shaz is there anyway of preventing the infections?
AnnaS Ill hopefully chat again next week, see you all! Bye!
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judith11 I am very frustrated because the nurses keep asking why nothing is done as far as getting more surgery to fix the problem
Shaz bye anna - good luck with the new job
judith11 As far as prevention I am doing all that can be done
Shaz what sort of surgery would it take?
judith11 I have talked to my surgeon who said a revision might make me lose continence and it might not change things
Shaz i really hate it when there's no guarantee of an outcome
judith11 I dont want to go back to wearing a pouch
Shaz would losing the continence be a big problem for you?
judith11 YES!!!!
judith11 How wuold you respond to these people/
Shaz it must be a very hard decision to make then.....I guess you'd have to weigh up how much the infections cut into your quality of life vs the pouch - I don't envy you
Shaz are the infections making a big impact on your life right now?
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Shaz wb Karen
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Kezz wb Sara2
judith11 Today at work a nurse came in and I told her the surgery is a major thing with no garuntees and that when I had a pouch-external I had real body image problems that made me somewhat anorexic
Shaz the body image thing is a biggie!
Sara2 hi I'm back I've come in through BTclic this time so hopefully I'm here to stay
judith11 Right now I go in the hospital about every 6-8 weeks for anywhere form 4-7 days
Shaz and u sure don't want to go back to the anorexic thing
Shaz lol Karen, the java client can be a bit iffy at times :-)
judith11 No though it was fun to in a store and be able to wear everything
Sara2 Your telling me and I'm a novice
Shaz the only thing I can't wear is very tight dresses - but then I don't have the figure for things like that anyway
Kezz i always wear big clothes still think ppl can see my pouch
Sara2 jake ended up in floods of tears because we couldn't get back through. He's happy again now though
Shaz lol...hi Jake :-)
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Sara2 Hi Shaz
Sara2 That was from Jake
Shaz :-)
Sara2 Jake - Do you all have lots of friends even though you have this problem
Shaz Have you ever worn a pouch Judith?
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Shaz Jake, i have tons of friends - lots with ostomies and lots without - they all understand - and if they don't - then they weren't really friends to begin with
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Shaz Judith, are you still with us?
Sara2 Jake- Thats what my Mum says, she says there not real friends if they don't want to know you just because your a little different
Sara2 May Judith is with Freeserve lol
Sara2 Sorry I meant maybe
Shaz exactly. most of my friends ask a few questions which is ok and I answer them as honestly as I can and they seem to be ok with that
Shaz lol
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* Shaz glues judith to the chair so she can't leave
Sara2 Jake- I find that I don't get asked back to friends houses when I have only been there once
judith111 Sorry I keep getting cut off
Shaz I know it's hard but try not to worry too much about them - they either don't understand or they're not really friends anyway
Sara2 Jake - My mum says as I get older people will be accepting of my problem as they understand what is wrong with me
judith111 I agree with you Shaz
Shaz judith, you may not have got that last question: have you ever had to wear a pouch?
judith111 Yes I wore one for 6 years
Sara2 Jake - Has anyone worn pads, as I am not keen in case people can see them
Shaz exactly, older people tend to understand a lot more than younger people - I had the same problem as I was growing up. But you know what? the friends that did stick by me are the best friends that anyone could ever have :-)
judith111 Jake how old are you?
Shaz judith - did you have problems with wearing different types of clothes when you had your pouch?
Sara2 Jake - I am 10 years old
judith111 Not really, I hust felt unattractive to my husband
Shaz Jake, I've know people who have had to wear pads and nappies - but no, you couldn't see them through their clothing - people don't tend to look for that type of thing anyway
Sara2 Jake - I am on here with my Mum Judith
judith111 Jake things will get better
Shaz judith, that's a biggie - did your husband ever comment on it?
Sara2 jake - Thank you are very kind
judith111 No though things were alittle different after the surgery at first if u know what I mean
Shaz and if it helps you by not having you mess up your clothes, i would give it a try - try them at home first and see if anyone can tell Jake
Sara2 jake - I have just had a new bedroom and my own bathroom built so I don't have to share with my brother I used to find this a bit embarrasing especially when he had friends round
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Sara2 jake - the disabillity people built it for me
Kezz when i found out my operation went wrong and now had a pouch for life i was so upset hubby was great he made me laugh said he married one bag now he has two
Shaz judith, I do know - but I guess that was only natural as you both got used to the surgery. one of things I've found out is that ostomates tend to worry more about their ostomies during certain times than their partners do
judith111 LOL
judith111 Thats certainly true
Shaz roflmsuao
Shaz Jake, you have your own bathroom - boy! i could sure have used one of my own as I was growing up lol
Sara2 Jake - Judith how old were you when you first had a problem
Shaz Kezz, it certainly sounds as though your hubby has a sense of humour :-)
judith111 I had my disease from the time I was youngf but was not diagnosed till i was 22
Kezz yes he is great
Shaz I call myself the Baglady from Downunder :-)
Sara2 Jake- Judith how did you first know you had something wrong
judith111 I wish that that there had been pads available back when I still had a bladder
Shaz Jake, we only had one bathroom in the house I grew up in - my family used to have to try and hold on forever until I was finished in there lol
Kezz ive been married now for 22 years and hubby is great he has had to go with out sex a lot he even went without it for 2 years straigh because i was so sick and living in hosp but we still together
judith111 I think Jake is gone
Shaz Kerry, he sounds like a keeper - I know so many ostomates who think that they will never find partners because of their ostomy
Sara2 Jake - My mum got onto Social Services in our area and asked if we could have a grant for a bathroom, and when they came round they said I could have a bedroom too
Shaz Jake, a new bedroom AND a bathroom - wow! that is so nice of them
judith111 My husband is actually glad I have an ostomy now we have to stop for him to use the bathroom
Sara2 You have a great partner Kezz
Shaz lol..my only regret is that now i have no excuse to get all my reading done whilst on the loo
Kezz thanx Sara2
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Kezz lol Shaz
Sara2 Do you know up until I came onto this chat room tonight I worried for jake's future but you are all so possitive about life I think its brilliant
Shaz aahhhh, the first birds of the morning are starting to sing
judith111 So Shaz how do u think I should respond when people get on my case about not going for more surgery?
Shaz I'm so glad we could help Karen
Shaz well, I think you should let them know that the ultimate decision is up to you Judith - not them
Shaz they're not the ones who have to live with it
judith111 I think they are tired of seeing me sick in the hospital
Kezz i wish i could get over this thing ive got thinking other ppl at the shops can see my iloestomy
Shaz Karen, if the sphincter thing that Jase talked about doesn't work out and a colostomy is in Jake's future, then don't worry, the Queen Mum, Cliff Richard, Bob Hope and others all have ostomies
judith111 When I wore a pouch
Kezz i didnt know that Shaz
Sara2 Cliff Richard wow I didn't know
Shaz That is hard on friends and relatives Karen - but as I say ultimately the decision is up to you.
judith111 Hit wrong button sorry
Shaz Kerry, try not to worry about it - truth is most people don't have a clue what an ostomy is and they're not looking for it anyway
Sara2 Woops Jake's picca sulphate is kicking in now, be back in a minute, he's grabbed his Football Mag and ran
Kezz my doctor once told me a good friend of mine had a pouch he couldnt tell me who but to this day have no clue who it is
judith111 That is so true! Most people are really surprized when I tell them I have one
Shaz lets see, Barbara Barrie (the nana in "Suddenly Susan") has one, ronald Reagan, Fred Astaire, Petula Clarke...and the list goes on
Shaz ok
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judith111 President bush' son has one
Shaz I've even heard Napolean had an ostomy - truth is I think that's why his hand was in his shirt all the time - he was feeling whether his bag was full lol
Shaz Jude, that's right - Marvin Bush has one
Kezz got a question what do you do shaz when your with friends who dont know you have a pouch or eating out and the pouch makes so much noise ?
Shaz an ET even told me Barbra Streisand has one - that's why she always wears a scarf down her right side and is photographed from her left
Sara2 Back again on my own I'm afraid Jake is stuck to the loo, he takes it all in his stride at this time of night
Shaz Kerry, all I can do is put a hand over my stoma and try and muffle the noise - happens mostly for me in meetings when there is deathly silence. or else I make the excuse that i'm hungry - the noise comes from my stomach region anyway so people don't know the difference
Shaz Karen, it's amazing what kids can put up with :-)
Shaz one day, someone will make a "stoma muffler" Kerry and make millions of dollars lol
Kezz i now tend not to eat befor i go out or if with a friend
Sara2 I know, sometimes he wont even admit hes had an accident, when his brothers and sister are saying Jake I think you need the loo, but at this time of night he seems to deal with it it OK
Kezz be great Shaz
Shaz oh, and rolf Benirschke (an american Football player) played 2 seasons with his ileostomy
judith111 I met him
Shaz I've never worried about the not eating part Kerry - I find that not eating tends to cause more gas in me than normal, hence more noise
Shaz Judith, I have his book - what was he like?
Sara2 Shaz do you get many children around Jake's age on here?
judith111 Man talk about good looking and very nice
Shaz not usually Karen. Last week Kimmy came on cos she ICQ'd me and I invited her on here but usually it's just older people
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Shaz lol...he is very good looking on the cover of his book :-)
Sara2 Are there any chat rooms you know of for kids to discuss this kind of thing
Shaz you can actually ask him questions at the convatec site I think
Sara2 Wheres that Shaz
Shaz Karen, I know of a site called "IBD Sucks" where there is an active kids group - you might have to monitor him on there tho - there's a lot of adult discussion folders there too.
judith111 Here in the states there are groups of parents of young ostomates
Shaz hang on a sec, I'll get the URL for both
Sara2 Thanks
Shaz there's also a great site for parents of IBD kids
Shaz ok, for Rolf Benirschke the URL is http://www.greatcomebacks.com/back.htm - that's the site at convatec relating about his Great Comeback award. I know Mike - the winner of the 1998 Comeback award. if you go to that site, you should be able to find the link to ask Rolf questions
Sara2 Shaz do you know if this runs in families, I only ask as I suffer from severe IBS and my husband had Ulcer Colitus very bad last year he had 6 months off of work, He had the Camera and all that
judith111 I think the tendency for it to run in families is not uncommon
Sara2 My husband had to take steroids and anti sickness drugs
judith111 How is he doing now?
Sara2 Needless to say his weight went up 3 stone
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Shaz it's debatable Karen - I know of no one in my family on either side with IBD yet with others they seem to have some relatives with the disease
Shaz ok, parents of IBD kids is http://www.InsideTheWeb.com/messageboard/mbs.cgi/mb150278
Sara2 He's doing find now it rears its ugly head now and then
Kezz what is IBD?
judith111 Thats good it can be fairly controlled
Sara2 Thanks Shaz
Shaz IBD = Inflammatory Bowel Disease
Kezz ok ta
Sara2 does anyone also have trouble with their kidneys as well as bowels?
Shaz IBD Sux is http://qurlyjoe.bu.edu/webx? but anyone with any type of continence problem can join - it's free and they're a great bunch of people - a parent's section there too
Kezz yes ive got kidney trouble
Sara2 So does Jake at one point they were talking of a transplant that was when he was 4 years old, but they decided that he could manage for the time being as the damage wasn't too bad
Shaz Karen, my weight went up to - but more to the fact I could eat anything I wanted to after surgery rather than meds :-)
Sara2 What is your kidney problem Kezz
Sara2 I actually suffered with kidney problems myself as a child spent weeks in hospital
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Kezz ive now got left kidney damage due to blockagers ive had my uthers re inplanted to try to help things
Kezz ive alwasy got kidney pain
judith111 I have kidney pain too but for different reason
Sara2 Mine is my left kidney as well, when pregnant I have to go on drugs straight away as I get recurrent infections, if I didn't take the drugs my kidneys would have packed up!
Sara2 My kidneys are fine when not pregnant, but pregnancy seems to blow things up again
judith111 I was healthiest pregnant
Sara2 It seems strange that I have kidney problems, jake does, I have IBS and Jake has bowel problems, I'm sure there must be some connection somewhere
Sara2 How many children to you have Judith?
Kezz my dau now also has kidney troubles
judith111 I have 2 sons ages 17 &19
*** Kosky is on IRC
judith111 My baby days are over
Sara2 I have four children, dont cringe, 13, 10, 7, and 4
»»»» +------------- WHOIS | kosky | Ended -------------+
Kezz both my kids also have gardners syndrome
Sara2 Thats what I said after my third, ha ha
Kezz ive got a girl 18 boy 20
Sara2 What is gardners syndrome
judith111 I miss not haveing little ones
Kezz Sara2 go to this url http://member.aol.com/sanddude/index.html
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judith111 Kezz are they out of the house?
Sara2 What is it Kezz?
Kezz dau isnt at home now but son still here
Kezz Sara2 another name for GS is ... Familial Adenomatous Polyposis ... or "FAP".
judith111 Mine are both still home
Kezz ive also got ostoma's my son has desmoid tumors
Sara2 What is it Kezz
Sara2 What are desmoid tumors?
Kezz Sara2 pls go to this url it tells you http://member.aol.com/sanddude/index.html
Sara2 Ok I'll look it up
Sara2 Shaz is Jason gone for good or is he back on?
Kezz brb
Shaz Kezz, do your kids look as tho they'll end up with ostomies?
Shaz Karen, i think he's gone for good tonight - he's not well and can't ever stay too long on here :-(
Shaz Judith, have your kids inherited your disease?
Shaz Jase is in constant pain - doctors butchered him right up
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judith111 No i have something called Interstitial Cystitis that affects the bladder
Sara2 Did they make a mistake then?
Sara2 I know he has pain caused by nerves
Shaz i always worry about any kids i eventually have inheriting my UC - but then as I say, no one else in my family has ever had any problems - oh, except my mum - but she has the opposite - she gets constipated all the time
Kezz back
judith111 I worried before IO had kids if I could pass it on , but my urologist said no
Kezz Shaz not so far they ok they both have had a j pouch done
Shaz I'm not too sure Karen, all i know his that they must have done some nerve damage when they did his colostomy - and this was by a top surgeon in England apparently - the same guy who operated on Queen mum and Cliff Richard
Sara2 Jake - night night everyone thanks for talking to me, Mum says it is late and I have to go to bed now I'm off the loo
Shaz that's good to hear Judith
Shaz good night Jake - sweet dreams
judith111 Good night Jake
Shaz hope you're feeling better soon
Shaz Kezz, how's their j pouches working out - any problems?
Sara2 Thank you Shaz good night
Shaz i was going to have a j pouch but in the end my rectum was too diseased to be of any use so I was left with an ileostomy
Kezz yes dau is good son has to take tabs to slow his bowel
Kezz think i will go now also need to lie down bye all and thanks for the chat
Shaz and i guess they're liable to pass it on to their kids too - this all sucks!
judith111 Good night
Shaz not a problem Kerry - feel better soon
Kezz yes they will pass it onto there kids
Kezz bye Shaz
*** Kezz has quit IRC (Face what you think you believe and you will be surprised)
Sara2 You've all lifted my spirits tonight thanks guys I'll speak to you next week if your all on Goodnight Kezz
judith111 Take care till then
Shaz I should be - after that I'll be galavanting around the world for 6 weeks so i'm not sure
Shaz good night Karen
Shaz H U G S §®¤º° Sara2 °º¤®§ H U G Si
Shaz H U G S §®¤º° Sara2 °º¤®§ H U G S
Shaz H U G S §®¤º° Sara2 °º¤®§ H U G S
Shaz H U G S §®¤º° Sara2 °º¤®§ H U G S
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judith111 Hey shaz u can call me when u get to New Hampshire
Shaz New Hampshire is approx 12th March
Sara2 Is that code Shaz I"M confussed!!!!!!!!!!
Shaz lol...sorry, i forgot you were on the java chat - looks better on IRC
judith111 I will be home
Shaz basically its says hugs to you :-)
Sara2 Before I go how do I get onto IRC, Jason has tried to explain but I think I must be a bit thick!!!!!!!!!!!!!!!!
Shaz you have to go to the mIRC homepage and download the IRC programme - do a search on mIRC and it should be easy to find. that will give you access to the chat channels - heaps easier than the java chat.
Sara2 Does it make a difference if I am on java chat or IRC?
Shaz not really - just can do more things on IRC - like that popup i did before - looks awesome
Sara2 I did that but I'm new to all of this I'll have to get my mate Scott round to sort thing out, thanks again goodnight
Shaz I'll be going to Jaffrey in NH Judith - do you know where that is?
Shaz lol.. not a prob - catch ya next week
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judith111 Yes it is maybe a 40 min drive from my house
Shaz cool! not that far then - at this stage I'll be there a week so surely we'll be able to meet up at some stage
judith111 How long will u be there
judith111 That would be a lot of fun
Shaz Tina in NH (she has an ileostomy) would love to meet you too I'm sure
judith111 I can make u sugar on snow
Shaz what's that?
judith111 It very sinful
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Shaz lol...I think I'm going to like it then
Shaz is it snowing in NH?
judith111 u take maple syrup and boil it down till its thick and pour over fresh snow and eat with a donut and a pickle
judith111 we just got about 8 inches last week
Shaz sounds yummy - except for the pickle lol
judith111 Beleive me u need it to cut the sweetness
Shaz cool! let's hope it's still snowing when i get there
* Shaz doesn't like pickles :-(
judith111 I asm sure it will be
Shaz anyway, it's 6.20am here - about time I got some beauty sleep :-)
judith111 if not we will make some for u
Shaz you'd better :-)
judith111 Its 5:20 here at night- time for dinner
judith111 Well talk next week
Shaz yep, not a prob - have a great evening
Shaz øHugsø,¸¸,ø¤°`° judith111 `°¤ø,¸¸,øHugsø,¸¸,ø¤°`° judith111 `°¤ø,¸¸,ø¤°`° judith111 `°¤ø,¸¸,ø¤°
judith111 You too, night now
