Ileostomy Contact List - Page 5

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2 Sept 2001
Name: Tanya
Email: smile_bok@yahoo.com
Age: 31
Country: Canada
Surgery: Ileostomy
IBD: UC
More Info: Hi everyone. Hope you are all doing well. I had Ulcerative Colitis for about six years and now have had ileostomy surgery. I'm doing pretty good right now. If anyone feels alone with having had this surgery, or just needs a shoulder... please don't hesitate to email me. Take care for now.

Name: Americus Fields
Email: gloriafields@charter.net
Age: 55
Country: Glen Carbon, Illinois, USA
Surgery: Ileostomy
IBD: Cancer

Name: Varsha
Email: VarshaMakvana@aol.com.uk
Age: 39
Country: North Beckton, London, UK
Surgery: Ileostomy
IBD: UC
More Info: Had my surgery in September 2000 following UC for since 1989. I also have a Budds Chiari Syndrome (Tendency to Blood Clotting which requires lifetime treatment on Warfarin - anticoagulation therapy). This doesn't help my stoma if I have a very thin blood as stoma bleeds badly externally.
Anyone out there got Budds Chiari?

Name: Becki
Email: Beckik1221646016@aol.com
Age: 49
Country: Tennessee, USA
Surgery: Ileostomy
IBD: Lymphocytic Colitis
More Info: Hey everyone, just want to say hello & would love a penpal to chat with. My stoma is "Oscar the Pouch" & he was born on 16 April, 2001. Still trying to adjust to him, had a few problems. Can't really give any advice now but would love to hear from anyone willing to chat as I am home all day.

Name: Matt
Email: mattkw@hotmail.com
Age: 27
Country: Christchurch, New Zealand
Surgery: Ileostomy
IBD: CD
More Info: Hello fellow ostomates, my name is Matt. I am 27 years old and have had my ileostomy for 3 years (due to crohns). I am very keen to meet and chat with others who have and continue to share similar experiences to me.
I enjoy snow and water skiing, touch rugby, indoor cricket and netball, travelling, and walking my 3 year old golden retriever 'Ollie'.
So if you are keen to make a new friend, share advice and support, email me! Stay happy, Matt :) (New Zealand)

Name: Joan Brown
Email: ELAINEJENKINSON@AOL.com
Age: 63
Country: Middlesbrough, England
Surgery: Ileostomy
IBD: Cancer
More Info: I am writing on behalf of my mum, she had cancer 7 years ago. After a partial colectomy she developed an vaginal fistula and had to have an ileostomy created. Due to the scarring and adhesions this had then to be a permanent. She also had a mucus fistula created 4yrs. She now suffers from severe rectal pain, uncontrolled by painkillers, we have tried TENS, magnets, pain management clinics to no avail. There isn't much info on phantom pains or rectal pain after operation so I would appreciate some advice, tips, etc from anyone who has experience of this as my Mum is at the end of her tether with it all. Thanks.

Name: Sue
Email: sue.oz@btinternet.com
Age: 33
Country: Yorkshire, England
Surgery: Ileostomy
IBD: UC
More Info: In June I developed Ulcerative Colitis and ended up having to have an ileostomy. Would love to hear from other people who have been through the same thing.

Name: Kenneth Fryer
Email: fenixtoo@tnni.net
Age: 58
Country: Sebring, Florida, USA
Surgery: Ileostomy
IBD: Crohns Colitis
More Info: Hi! I am 6'1" and 160lbs. My last surgery was in 1983, and I have been doing very well. I would like to communicate with a woman with an ileostomy, who is doing well, also, and would like a relationship. I am able to relocate.

Name: Debbie Riggs
Email: debbieriggs@iwon.com
Age: 40
Country: Thomasville, Georgia, USA
Surgery: Ileostomy
IBD: UC
More Info: 40 years old, had ileostomy for 22 years. I am a recent widow. Im a nurse and back at college working on my BS degree. I am a Christian. I live in a small town (no ostomy club). I don't know anyone else with an illy and have just made it on my own thru trial and error the past 22 years. Would like to help anyone and encourage anyone who needs it or just talk if that's what you need. It would be nice to talk to people who know what I have been going thru. Widow for past 2 years and don't have anyone to share ups and downs of the ostomy life with. Would love to hear from anyone.

Name: Alistair Sinclair
Email: AllygSinclair@aol.com
Age: 41
Country: Perth, Scotland
Surgery: Ileostomy
IBD: CD
More Info: Had surgery on the 3/8/2001 operation was not finished have to go back in for another operation. Received Ileostomy but started to lose to much blood so operation stopped. Have to go back in 5 to 6 weeks time to have rectum removed.

Name: Ross Game
Email: ragame@hotkey.net.au
Age: 35
Country: Sale, Victoria, Australia
Surgery: Ileostomy
IBD: UC

Name: Christopher MacGregor
Email: chrismacgregor@btopenworld.com
Age: 34
Country: Shetland Isles, Great Britain
Surgery: Ileostomy
IBD: Familial Polyps
More Info: Hi, I'm Chris from Shetland. I had my surgery within 2 months of being diagnosed with having FAP back in 1998.
Before my op, I was worried things wouldn't be the same but they are. I feel a lot healthier and put a bit of weight on (no more cramps).
I'm happily married with 4 children. I work for a scaffolding company as a forklift driver and volunteer firefighter. Having an ileostomy has never been a problem with either job (from day 1 I've had a positive attitude and that helps a lot).
I've never had contact with any other ostomy wearer so look forward to hearing from you.

Name: Beckyjean
Email: becky1boys4@yahoo.com
Age: 45
Country: New Mexico, United States
Surgery: Ileostomy
IBD: UC, CD and Cancer
More Info: Had UC for 18 years, then they found precancer, when I had surgery for a permanent Ileostomy they found cancer - good thing they took it when they did. Anyway the next year I was diagnosed with Crohns in what I have left.

Name: Jennie
Email: rjhill@microed.com.au
Age: 45
Country: Brisbane, Australia
ICQ: 104062129
Surgery: Ileostomy
IBD: UC
More Info: I am 45 y/o female, married with 2 girls aged 9 and 10. Had my ileostomy 25 years ago and have never had any problems at all during this time except it took me 13 years to get pregnant and then finally 2 girls in 12 months.
Had no problems with being pregnant or having the babies. Both were caesarians.
I am fit and well and work in a very physical job and my life goes on as normal and I hardly ever think about my bag until it needs changing.
I have a wonderful husband who is a paramedic and my life is wonderful. Hope I can help someone else who may wish to chat

Name: Debbie Bennink
Email: dbennink@nisa.net
Age: 39
Country: Nanaimo, B.C. Canada
Surgery: Ileostomy
IBD: Crohns Colitis
More Info: I am interested to talk with others that have had their illnesses come back after ostomy surgery and also, if there are others who have had bladder disfunction since surgery.

Name: Anne
Email: asleone@hotmail.com
Age: 32
Country: Rochester, New York, USA
Surgery: Ileostomy and Colostomy
IBD: Cancer
More Info: I was first diagnoses with a uterine sarcoma at age 18 months. Since it can be very rare I was treated at Children's hospital in Boston. At the time my family was living in CT. Anyway I had a round of chemo, some surgery and the removal of my uterus. It worked for a number of years, but at age 23 I passed a clot, not normal, went back the dr. and was diagnosised with bladder cancer. More chemo, more surgery and finally the removal of my pelvic organs, bladder, vagina, and anus.
I have both a colostomy and Ileostomy.
Would love to chat with anyone with both.

Name: Dianne Kraemer
Email: iodine35@aol.com
Age: 66
Country: Ettrick, Wisconsin, USA
ICQ: 6085257585
Surgery: Ileostomy
IBD: UC
More Info: I was operated on Oct 23, 2000. My anus has still not healed. I have had to have two surgeries since my original surgery to open up the anus again to supposedly heal properly, and I have still not healed properly. My last surgery was in May 2001 and was just recently told by my physician that I may never heal. Has anyone had this experience and have eventually healed? Please contact me if you can help. Sincerely Dianne.

Name: Jennifer
Email: mjjcase@cs.com
Age: 33
Country: Washington, USA
Surgery: Ileostomy
IBD: UC
More Info: HI, I had Ulcerative Colitis form age 11-20.I then had no choice but to have the Ileostomy surgery.It saved my life,that was 13 years ago and It has gone very well.I have been married for ten years,and we have a 4 year old child.If there is anything I can help with dating, pregnancy, etc, please email me. Thanks, Jennifer.

Name: Mike
Email: newtexas80@hotmail.com
Age: 39
Country: Dallas, Texas, USA
Surgery: Ileostomy
IBD: Unknown
More Info: I'll try to make a very long story short. I went to the emergency room at Parkland hospital at least a dozen times until they decided to do a colonoscopy. After the procedure, I was released. I then proceded to pass out in the restroom as they had blown my colon apart. Needless to say I was admitted and they did emergency surgery which left me with a colostomy. 6 months later I was to be reconnected which was a total disaster. My remaining healthy colon was removed by accident. I was speechless to say the least. I now will have to live with a Doctors carelessness for the rest of my life.

Name: Sue Dittmar
Email: azgreyhound2@cs.com
Age: 57
Country: Phoenix, Arizona, USA
Surgery: Ileostomy
IBD: UC

Name: Annie
Email: annie5263@hotmail.com
Age: 38
Country: Australia
Surgery: Resection
IBD: Severe form of Endometriosis
More Info: I have just had a Total Abdominal Clearance which included having 1.5 feet of my large Bowel Removed. Three days post-op I was told they need to take me back to theatre for a Total Colectomy and formation of Ileostomy. It is now 8 weeks post-op and I can't find the courage to do it. I am totally housebound due to incontinence. Any-one got any words of wisdom? When first diagnosised the surgeons kept saying try anything to avoid a stoma. Now they say there is no choice. Is it that bad? What are the negatives?

Name: Becki Hill Kirk
Email: BeckiK1221646016@aol.com
Age: 49
Country: East Tennessee, USA
IBD: Lymphocitic Colitis
Surgery: Ileostomy
More Info: Hi everyone, it has taken me awhile to get on this new forum. Hope you remember me Shaz. I had my ileostomy on April 16th and still having some problems. I procrastinate alot, especially when it comes to going back to my surgeon. Anyway, glad to be here again.

Name: Cherie
Email: zodiacgrrl@hotmail.com
Age: 25
Country: Virginia, USA
IBD: CD
Surgery: Ileostomy
More Info: Wow, it's so wonderful to hear from others with ostomies! We have a support group here for ostomates through the United Ostomy Association, but I was the youngest member! Haven't been to the meetings for awhile, staying busy :)
I was first diagnosed with Crohn's 2 months before I turned 13, after many misdiagnoses of stomach flu, etc. Mom knew something wasn't right. Doctor's said it was the worst case they had seen, and I was the youngest patient they had seen with it. Now I see many people hear the same thing. Anyways, that was May, in December I about died that year. January of 1989 I had my first resection. Since then, had 4 or 5 more surgeries for resections, blockages, etc. Got staph infection once and almost died.
Thank God for my ostomy! I got it in June of 1997 and I wonder why I didn't get it earlier. I was worried about my self-image, etc but I am fine now. No problems with dating and intimacy. It's given me some heck - when I had my first leakage I did curse it, but I know it saved my life so I got past it. Knock-on-wood, I have been in complete remission since my surgery. If anyone would like to chat please feel free to contact me! I would also love to hear from women that have been pregnant with an ostomy as I am looking forward to having children so I can leave the hospital with a baby instead of leaving parts behind! ;)

Name: keith
Email: knaylor@esn.net
Age: 41
Country: USA
IBD: Crohns Colitis
Surgery: Ileostomy

Name: Teralyn Fleming
Email: teralyn.fleming@fl.cslegal.com
Age: 31
Country: Tampa, Florida, USA
IBD: Hirschsprungs Disease
Surgery: Ileostomy
More Info: I am the mother of a 7yr old with hirschsprungs disease. doctors really don't know a lot about it so I'm kinda lost. My son wasn't diagonsed with this disease until he was four. He's had numerous problems, internal bleeding, blood transfusions and right now he's suffering with lymphoid hyperplasia. I'm not sure what that is, but I'm wondering if someone could give me a little more information about the disease like if it's fatal or the long term affects and prognosis.

Name: Bill Hayles
Email: billnot@billnot.com
Age: 52
Country: Benitachell, Alicante, Spain
IBD: UC
Surgery: Ileostomy
More Info: I live on the Costa Blanca, which is a major tourist area, and would be happy to help and advise anybody thinking of holidaying here about facilities for ostomates, relieve their fears, and above all, encourage them to come!

Name: Dave
Email: davesuzuki600@aol.com
Age: 41
Country: United Kingdom
IBD: UC
Surgery: Ileostomy
More Info: Hiya. Hope you are all feeling as good as I do. Post op 18 years now. UC was as chronic as it can be. Just like to say for the people having problems coming to terms with a stoma, that I've just signed on the sick for the first time in 4 years. lol, noooooo broke me foot in work!
Right my life (mini version): full time dad of one. He's 10. My self, 41 and have a physical job. We have a very fast suzuki bike which we have just been across France on 1600 miles in 6 days, and women, mmmmmmmmmmm love women, have fantastic friends and have no probs pulling them. I also go to bike rallies and get totaly wrecked. Bugger going the loo in the dark, just sorry my surgeon waited so long to give me my life back. Feel free to drop me a line.

Name: Nicole
Email: BrownEyedGirLiN@aol.com
Age: 35
Country: Indiana, USA
IBD: FAP
Surgery: Ileostomy
More Info: Hello, my name is Nicole. I've had my Ileostomy now for 3 yrs. I have had so many problems in these three years too. I had my first surgery in Oct. of 1998. It was a total abdominal colectomy with Ileo/anal pull through. From the time I woke up from the surgery, until what little bowel I had left ruptured in Feb. of 1999, I was miserable. I had a temporary Ileostomy in Feb. but it was made permanent in Nov. of 1999. I've had many "procedures" and minor day surgeries along the way too. The past 3 years of my life have changed me, changed the way i think of myself and the way I live. I don't work anymore, and rarely leave my house I am depressed and mad at the same time. My attitude changes from being greatful to be alive to being mad at the world for the way I am now. I haven't talked to many people about this, or how I feel about it either. I'd like to meet other people who have gone through this, and maybe have a better attitude than I do... lol

Name: Dale Snellbaker
Email: Dpssnellbaker@cs.com
Age: 59
Country: Egg Harbor, New Jersey, USA
IBD: CD
Surgery: Ileostomy
More Info: Date of surgery June 6, 2001. I am a carpenter by trade and work in a hotel/casino.

Name: Maggie Carter
Email: planitmag@cs.com
Age: 28
Country: St Louis, Missouri, USA
IBD: Crohns Colitis
Surgery: Ileostomy
More Info: I had my surgery done in 1987 and I can tell you it was the best thing that has ever happened to me! Before my ostomy, I was one of the worst cases of Crohn's/Colitis my doc had ever seen. (I was diagnosed with Crohn's/Colitis when I was 7, and I'm 28 now.) I'm happy to say that my quality of life for the past 14 years has been wonderful. If anyone is contemplating surgery I would be honored to chat with them about any questions they might have. One question of my own...how is it to be pregnant with an ostomy??

Name: Suzi Whiting
Email: s-r-qtrpnt@gbis.com
Age: 49
Country: Lovelock, Nevada, USA
IBD: UC
Surgery: Ileostomy
More Info: I had an emergency Ileostomy and had no chance to learn anything about it. I have read everything and devoured everything I could get my hands on. I understand new ileostomates worries and concerns. I had undiagnosed UC. Can you imagine that!!!!!

Name: Mary
Email: cmchmela@earthlink.net
Age: 42
Country: New York, USA
IBD: Spina Bifida
Surgery: Ileostomy
More Info: My ileostomy was given to me when I was 6 weeks old (with 3 or 4 revisions over the years). I've had several kidney stones/surgeries. I have a teaching degree from NYU and have taught music for many years. I have also been a performer - wrote songs and sang in clubs with my own band and have acted in movies and on a several soap operas. I have been married for 11 years. I have always had many problems and inconveniences (leakage, infections, getting it wet in shower or pool) which I have, quite honestly, never brought up with anyone. Right now I use Convatec brand - any comments or suggestions? Please feel free to contact soon! Thanks

Name: Tina
Email: trillian@utanet.at
Age: 42
Country: Vienna, Austria
IBD: CD
Surgery: Ileostomy
More Info: Crohn's since 1977, Ileostomy since 1996 because of fistulas, rectal stump left.

Name: Renee Edwards
Email: naynay66414@hotmail.com OR rbabysitter66414@aol.com
Age: 37
Country: Kansas, USA
IBD: UC
Surgery: Ileostomy
More Info: I've had an Ileostomy for about 5 years now and I've never been happier....Its great not being sick anymore, I have my life back again. Anyone who wants to chat, just e-mail me I do not mind talking about my experiences at all.

Name: Baxter
Email: Bearp@earthlink.net
Age: 32
Country: Canoga Park, California, USA
IBD: UC
Surgery: Ileostomy
More Info: Hello Everyone....I am a 32 year old male and I have had my Ileostomy for 17 years. I have been doing fine with it. I would love to hear from all you exciting women ostomates out there! E-mail me and I will send you my picture.

Name: Maureen
Email: maureenaz@hotmail.com
Age: 49
Country: Fareham, England
IBD: Crohns Colitis
Surgery: Ileostomy
More Info: I would just like different experiences from you people.

Name: Alana
Email: KiKiCat_Baby@hotmail.com
Age: 21
Country: Grove City, PA, USA
IBD: Crohns Colitis
Surgery: Ileostomy
More Info: I've had Crohns for 6 years. I also have acid reflux and GERD. 2 surgeries for crohns in Dec 2000, 1 surgery for my gallbladder in Feb 2001. My Bowel resection failed and had to get an ileostomy in Dec 2000. I spent a total of 55+ days in the hospital in Dec, Jan and Feb. Got a horrible infection and didn't almost make it. My doctors plan to eventually re-attach me! I'm getting better now and can finally eat and hoping that when I have my reversal surgery it will work! I know what all you are going through. It is very difficult to live like this. It has been very hard on me and my family. It has been very hard living with this disease and finding people that really understand what goes on. Please write me! I would love to hear from you!!!!!!!!!!!!!!

Name: Ronda Stafford
Email: rwhite4@midsouth.rr.com
Age: 38
Country: Horn Lake, Mississippi, USA
IBD: CD
Surgery: Ileostomy
More Info: I had Crohn's disease since 1981. I had an ileostomy in 1992. I have 2 children, 17yrs and 12 yrs old. My twin sister also had the same surgery 3 years after me for the same reason. I was divorced 6 yrs ago and have remarried. I was afraid no one would want me because of my ileostomy but I was wrong. My husband is wonderful and probably minds it less than I do. There is hope for everyone.

Name: Sheryl Waudby
Email: sherylwaudby@home.com
Age: 31
Country: Vancouver, WA, USA
IBD: Crohns Colitis
Surgery: Ileostomy
More Info: I've had my ileostomy since I was 18 years old due to a quick downhill battle (four months) with Crohns Disease that almost cost my life. So for 12 years I've lived with my ostomy and have never had contact with another living ostomate! I would love to talk with anyone that wants to share stories, feelings or whatever is on your mind. I think it's about time I found out how others survive with this crazy bag of ours! Happiness to everyone!

Name: Perry Latham
Email: perrylatham@yahoo.com
Age: 63
Country: Burnsville, MN, USA
IBD: UC
Surgery: Ileostomy
More Info: Have had an Ileostomy for 5 years.Had some trouble accepting,would probably be dead with out the operation.Lead an active life,several sailing trips ,Blue water,Play golf ,dance alot ,working full time though am retired.Have some lady friends but no intimacy since operation.Would be nice to meet some one with similar situation.Grateful to be alive would talk to any one who is having trouble accepting the operation.Nice to be alive!!

Name: Rafael L. Garcia
Email: veloz11@yahoo.com
Age: 33
Country: Mexico
IBD: UC
Surgery: Ileostomy
More Info: Had surgery in 82 in Chicago´s Children´s Memorial Hosp. and attended 3 youth rallies Boulder 83, Washington, D.C. 84 and San Diego 85. Currently living in Mexico.

Name: Vicki Caracci
Email: caraccifaith8@aol.com
Age: 67
Country: Arizona, USA
IBD: Cancer
Surgery: Ileostomy Reversal
More Info: Trying to get information for my husband ,just had ileostomy reversal March 5,2001, would like information concerning bowel habits. Please help, if any people out-there are experiencing same. Thank you

Name: Lena Damrau
Email: damrau@milwpc.com
Age: 42
Country: Brownsville, Wisconsin, USA
IBD: UC
Surgery: Ileostomy
More Info: I had my ostomy surgery in November of 2000. I had been sick for one year with ulcerative colitis and I was unable to get off of the prednisone, so my doctor encouraged me to have surgery.

Name: Amy
Email: crabhab@intercom.net
Age: 25
Country: USA
IBD: Familial Polyps
Surgery: Ileostomy
More Info: Colon removed at age 12 due to Gardner Syndrome (type of FP). Pull-thru surgery done, and lasted until age 23. Ileostomy in December of 1998. Doing great, I have my life back. Now considering pregnancy, but 50% chance of passing on Gardner Syndrome gene. Husband is leery of chance. Please give advise or personal experience. I would also like to give support who is down about their ostomy.