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Name: Michelle
Email: brown_eyed_girl_34_uk@yahoo.com
Age: 34
Country: Southampton, England
Surgery: Ileostomy
IBD: CD
More Info:

Name: Daryl Jenkin
Email: missjenkin@hotmail.com
Age: 55
Country: Australia
Surgery: Ileostomy
IBD: Familial Polyps
More Info: Hello my name is Danielle and I'm writing this on behalf of my Dad who had an ileostomy about twelve months ago.
Dad doesn't know how to type and certainly doesn't know how to use the internet, but he is certainly in need of some information and is more than happy to give information for those that he might be able to help.
Dad has a lot of trouble with his bag because it leaks all the time (everyday). The longest he has ever been able to wear a bag is 48 hours, but that is after doing repairs on the current bag. Because he has to change the bag so much, his skin is constanly irritated, as is he because he is so limited in what he can do.
Dad's main problem is that every afternoon between 1/2 and 1 litre of yellow bile fills his bag. This makes the bag fill very quickly and because of its fluid consistency leaks. He is really in need of some advice and help.
Believe me this is one whole family that would really appreciate some help with this one, as we want our Dad to be as pain free and as happy as possible.
Any responses will be greatly appreciated.

Name: Traci Banks
Email: BTEARDROP2@AOL.COM
Age: 35
Country: Oregon, USA
Surgery: Ileostomy
IBD: Crohns/Colitis
More Info: Hi, I have had my ostomy for about 8 years. It's been a rough road. I thought it was going to be the end of the world. To my surprise, It wasn't. Im still here! I feel this great need to talk to others with ostomies. So, if you need a friend, or have any questions, please feel free to write me.

Name: Gail
Email: psam@telus.net
Age: 38
Country: Canada, bc
Surgery: Ileostomy
IBD: Crohns/Colitis
More Info: I have had crohn's since I was 17, I went through many surgery's. The last one I had was nine years ago, that's when I ended up with an ileostomy. I am so grateful that there was a procedure where you can live a productive life, without my ileostomy I couldn't live a normal life. I was running to the bathroom all the time, traveling was out of the question, had to stop at every gas station, it is so nice to be able to go to the forum and this site to talk to people who have the same problems. It is comforting to know there are so many people out there with the same problems. Thank you Shaz for coming up with this site. Anybody who wants to contact me may do so.

Name: Jill
Email: JillQ@nj.rr.com
Age: 31
Country: New Jersey, USA
Surgery: Ileostomy
IBD: UC
More Info: Had ileostomy surgery 1/5/2000....Learning to deal with new lifestyle....Still have hard times...But love the new independent life away from the bathroom...Feel free to write anytime

You know what they say "What does not kill you makes you stronger!"

Name: Mike
Email: zmcoogs@aol.com
Age: 40
Country: Dorchester, UK
Surgery: Ileostomy
IBD: cancer
More Info: I have bowel cancer (2nd time since '97)Colostomy and reversal in '97; ileostomy Dec '99. Tumour inoperable. Still getting used to the idea. Seems we're all more or less in the same boat. Glad to meet you all on this great website.

Name: Sabine
Email: Conor2003@aol.com
Age: 35
Country: Austria
Surgery: Ileostomy
IBD: UC
More Info: I have got an Ileostomy since Sept.99 and I am doing fine. I will get the rest of my colon removed in autumn and my surgeon offered me a J pouch. Should I do it???

Name: Jen Cohen
Email: jencohen@smileyface.com
Age: 13
Country: Canada
ICQ: 25414358
Surgery: Ileostomy
IBD: UC
More Info: Adhesions removed- March 2000,. Now have a J Pouch.

Email: lisettepaloczi@juno.com
Age: 55
Country: Ashford, ct
Surgery: Ileostomy
IBD: collagenous & lymphocytic colitis
More Info: Now have Kock's Pouch.

Name: Diona Dickerson
Email: ddmontana@aol.com
Age: 31
Country: Mobile, Alabama, USA
Surgery: Ileostomy
IBD: UC

Name: Michael Thompson
Email: larcanus@hotmail.com
Age: 17
Country: Pennsylvania, USA
Surgery: Ileostomy
IBD: UC
More Info: Had surgery on April 1st, 1999.

Name: dawn ferguson
Email: ebarmani@aol.com
Age: 23
Country: white lake,MI
Surgery: Ileostomy
IBD: Familial Polyps

Name: Joel Robins
Email: J2MRobins@aol.com
Age: 41
Country: Twinsburg, Ohio USA
Surgery: Ileostomy
IBD: CD

Name: Donna Miller
Email: dgm4444@yahoo.com
Age: 60
Country: Minneapolis, MN
Surgery: Ileostomy
IBD: CD
More Info: Hi! I've had my ileostomy for almost 10 years and, except for one thing, I am just fine. The one thing is....3 times I've had a sudden output of fluid that has landed me in the hospital with severe dehydration. I'm wondering if anyone else has experienced this.

Name: Cecelia Reid
Email: sunshine@effectnet.com
Age: 53
Country: Portland, OR
Surgery: Ileostomy
IBD: Crohns/Colitis
More Info: Was diagnosed with Crohn's/Colitis in '96. Had surgery:removal of large colon,rectum and anus in June'99. Feel great. Surgery has given me another chance at life. I enjoy doing things that before surgery was next to impossible to do. I no longer take things or people for granted and if someone asks me about my surgery I have no problems telling them (short version). No one seems to be offended and no one treats me any differently. I won't say that it wasn't hard adjusting, it was... but over time and with the love and support from my family I am doing fine. Sometimes I feel down, but I think that's natural and I try not to let it get to me. If any one wants to e-mail me, please do. God Bless us all!

Name: Nino
Email: ninico@hotmail.com
Age: 24
Country: Barcelona (Spain)
Surgery: Ileostomy
IBD: UC
More Info: Hello, first of all, sorry because my level of english is not very good (now I´m trying to solve this problem in a language school).
I have discovered this place on internet today and I´m very surprised and happy because reading your letters I can see part of my live reflected on them. I have my ileostomy since I was 14 y.o. At first I was very sad because I thought that I couldn´t make the same things never more, but.... never says never more! Since then, I have been learning to love my bag and missing it; here in Spain there is a group of music called "Jarabe de Palo" that sing in one of them songs: -He aprendido a quererte cada día un poco más, he aprendido a olvidarte cada día un poco más. I think that this is the "secret" for live with the bag trying to be every day a little more happy.
Please, if someone wants to know more about the "secret" or if someone wants only to talk, contact with e-mail.(I don´t have internet at home, but once a week I go to the computer class of my Uni- versity)

Name: Kerrie
Email: kezz@beyond.net.au
Age: 45
Country: Australia
ICQ: 54466165
Surgery: Ileostomy
IBD: Familial Polyps, Gardners Syndrome
More Info: I've had my ileostomy now for about 9 years and hate it would love to hear from other ppl who have this.

Name: Mandy
Email: rickpoz@netrover.com
Age: 24
Country: Canada
Surgery: Ileostomy
IBD: Indeterminate Colitis
More Info: I was diagnosed with colitis (they're 99% sure it was colitis and not crohns) almost 2 years ago. After trying every drug available and many alternative treatments I was at a loss over what to do. I was in so much pain and could not leave my house due to having to go to the bathroom so many times. I couldn't teach or do much of anything. I was sick all of the time, lost a lot of weight and was having side effects from steroids and immunosuppressant drugs. I had my ileostomy surgery in November and have felt amazing ever since. I'm now doing everything I had missed out on in the last 2 years. I've adjusted extremely well and would be glad to share any info with others. All the best, Mandy

Name: Angel
Email: angelzscentblair@netscape.net
Age: 31
Country: USA
ICQ: 47989995
Surgery: Ileostomy
IBD: UC/Cancer
More Info: I have a S pouch but have experienced pancratitis, infection, obstruction, dehydration, etc. throughout my ostomy experience.

Name: Chris Morgan
Email: chris@pmorgan.co.uk
Age: 29
Country: Glasgow
Surgery: Ileostomy
IBD: UC
More Info: I would be keen for someone to contact me as there are many issues I would like to discuss although please be patient for a reply as I may not go on line every day.

Name: Andrew
Email: PSkeletonman@aol.com
Age: 28
Country: Australia
Surgery: Ileostomy
IBD: UC
More Info: First diaognosed with crohns when I was 16. Went through HELL trying to control it with medication until in '94 when I had a resection. Everything was going great for about 6 months, then the crohns came back with a vengence. Back to the old routine, until finally in June '99 an ileostomy. I've accepted the fact that it has saved me, but I still have not come to terms with it. I hate it/me. But I will get used to it eventually, especially now I've found others like me.

Name: Jane Levine
Email: greathound@hotmail.com
Age: 47
Country: near Gainesville, FL
Surgery: Ileostomy
IBD: Crohns/Colitis
More Info: This is my first time visiting your site. I'd like to know more about it. Thanks!

Name: Barb
Email: Barb_24@hotmail.com
Age: 23
Country: Australia
Surgery: Ileostomy
IBD: UC
More Info: I was diagnosed with Ulcerative Colitis when I was 3 and had my first ileostomy when I was 7.

A J-Pouch was also made but when I had the reversal of the ileostomy the pouch failed to work and I got adhesions. They tried this a second time a few years down the track, but it still failed. Over the years I've had 5 stomas and 9 operations. One of these being a Liver transplant in April 1999. I had this because I had the diseases Cirrhosis and Sclerosing Cholangitis. Apparently 1 in 10 people with Ulcerative Colitis get liver disease as well. I was one of these people. The initial operation I had when I was 7 was supposed to stop the liver disease getting worse, but it didn't.

Anyway, I'm going well now and would be happy to talk to anyone who wants a chat.

Name: Marsha
Email: marira@dellnet.com
Age: 54
Country: NYC/USA
Surgery: Ileostomy
IBD: UC
More Info: Thinking about J-pouch surgery. Have hernia now. Hair is falling out and I'm a woman, when does this stop?

Name: Mary-Anne Yost (Yostie)
Email: yostiem@yahoo.com
Age: 44
Country: Hants.UK
Surgery: Ileostomy and Urostomy
IBD: Neurogenic Bowel and Bladder
More Info: I am an Australian, but I am living and working in the UK. I worked as a Paediatric Stomal Therapy Nurse in Australia, but not over here. I've had my Ileostomy for 4 years and my Ileal Conduit 8 yrs.

Name: Pamela Young
Email: pamy6336@yahoo.com
Age: 37
Country: Vernon Hill, Virginia
Surgery: Ileostomy
IBD: CD
More Info: I have had Crohn's diease since I was 15 years old. I have had surgery nine times since June of 1993. One colostomy and two ileostomies. The second one perment...I really hate it. But, I am dealing with it...I live in a very small town and most people I have come into contact with have never heard of Crohn's diease or any othe IBM related dieases. I have three girls and this past year in Feburary my sixteen year old was told she also had Crohn's diease....we cried the whole day. With God's help we know it will be alright...
I'm looking for people like myself for support for we don't have any types of support groups where I live....
Thank you for taking out the time to read this...

Name: Lori
Email: tomswife@midsouth.rr.com
Age: 25
Country: USA
Surgery: Ileostomy
IBD: UC
More Info: I have had an ileostomy for 10 years now, and life is great!! I have had problems off and on, but no biggie.. you know, day at a time... I am married, no children, 2 bassett hounds. I have a BS in Dental Hygeine, but due to a latex allergy, I have chosen to stay home and be a wife!! :) I discovered the internet in July and life has not been the same since!! I spend a lot of time chatting away with all sorts of people, and would love to talk to YOU too!! :)

Name: Sam
Email: ferrier@1earth.net
Age: 23
Country: Wollongong, Australia
ICQ: 47009447
Surgery: Ileostomy
IBD: CD

Name: Kevan Hughes
Email: Kevan.Hughes@talk21.com
Age: 38
Country: Manchester, England
Surgery: Ileostomy
IBD: none, emergency op. due to massive internal bleeding.
More Info: No IBD, massive internal bleeding (congenital, vascular condition). No previous illness, 100% fit & healthy.
Ileostomy carried out 19/9/99. Am out of hospital and trying to pick up the pieces. Physically good - due to high levels of fitness, mentally v. bad - body image, pschosexual problems. Help required.
Single Gay Guy.

Name: Sal Finney
Email: sallie69@juno.com
Age: 18
Country: US
ICQ: 7492331
Surgery: Grandfather has Ileostomy
IBD: ????
More Info: I am doing this for my grandfather who is 78 years old.He had an ileostomy about 6 years or so ago and is recently having problems and was looking for people in the same situation that might be willing to corospond with him and offer hints and support. I am also looking for a good chat room related to the subject. So if anyone could help me out it would be greatly appreciated!

Name: Sandy
Email: sjnuc@localnet.net
Age: 48
Country: Rochester, NY USA
Surgery: Ileostomy
IBD: Crohns/Colitis
More Info: I was diagnosed with UC in '82 and my reaction was..."AT LEAST IT'S NOT CROHNS". I was hospitalized for at least a month on TPN and steroids (I'm allergic to all sulpha drugs) twice with minor flare-ups in between until '90 when I was in for a month and home for a month on TPN and a drug cocktail of cyclosporine, 6-MP and God knows what else, to cure a fistula....which was OK as long as they didn't give me..."A BAG TO MATCH MY SHOES". In March of '99 while in Florida on vacation I had another flare-up. I was in hospital for a month but the usual treatment didn't work and after two transfusions I was begging for the surgery. All good things come to those who wait. I feel so fabulous. It bugged me for about..a minute.. until I realized... I'M STILL ALIVE.....I have a great supportive husband and a new grandchild whose diaper changes can be much worse than mine ;-) Feel free to write to me and "Stella the Stoma"!!

Name: Michelle
Email: michelle.pike@ns.sympatico.ca
Age: 27
Country: Cape Breton, NS.
Surgery: Ileostomy
IBD: UC/CD
More Info: Total Colectomy and still having pain and bleeding all the time

Name: Lisa
Email: NitaPepsi@aol.com
Age: 34
Country: California
Surgery: Son has Ileostomy
IBD: Son has Hirschsprungs Disease
More Info: I am the mother of a son with Total Colonic Hirschsprung's Disease. He is now 8 months and doing great with his ileosotmy. At this time we are undecided if we are going to have a pullthrough surgery done.

Name: Ann Sharman
Email: anniesharman@yahoo.com
Age: 26
Country: Canada
Surgery: Ileostomy
IBD: CD
More Info: I've just learned that I will be having a permanent ileostomy. If there are any other young people out there that have had this surgery or are about to have this surgery, I would love to hear from you! I'm a little nervous and fear I'll be viewed as "different" after I've had it done. I'd really like to talk with someone about this.

Name: Pamela Coyle
Email: pacori@earthlink.net
Age: 50
Country: Coventry, Rhode Island
Surgery: Ileostomy
IBD: CD
More Info: It's nice to have a place to go to contact other people about problems we have with our ileostomies. I have had mine since 1985. Pam

Name: Elizabeth
Email: phillipe@dre.nw.uovs.ac.za
Age: 51
Country: South Africa
Surgery: Ileostomy
IBD: surgery related
More Info: I am a very angry ostomate. About twelve years ago I noticed some vaginal bleeding (had a hysterectomy), after two years of failed treatment the ulcers were surgically removed, and a vaginal skin graft was done with tissue taken from the labia. All this was to no avail as the ulcers started in another section. The drs. didn`t want to accept my explanation that I thought it was my Porphyria acting up, needless to say I had quite a few more ops., as they thought it was some kind of exotic cancer. I was in agony with all the pain after all the procedures, went for pain treatment for 4yrs, with no relief. As a last resort the neurosurgeon did a Rhysotomy where they severed some of the spinal nerves in an effort to control the pain. Do I have to add that it didn`t help? The end of this long story is that I ended up with an Ileostomy as I`ve lost some nerve and muscle control of my lower body. First to go was my colon,with a J Pouch, after a few more operations, and as a ! last resort I had this Ileostomy. It was supposed to be for only 6mths, but I am going for 16mths now. I can`t take any medication because of the porphyria, and the doctors can`t guarantee a successful reversal. So here I am, grateful to be alive, but hating every moment of wearing this BAG!!!I don`t know any other ostomates and would appreciate any support!