Urostomy Contact List - Page 1

I know of no one that has had this surgery before, this web site should really help me out. I would love to hear from anyone out there that can give me advice, support and maybe link me with a buddy to communicate with so I can share my feelings, worrys and accomplishments. Every day it seems like there is somehting new to think about. This silly bag keeps leaking, bought glue, now it gets clogged up, and I am tired of waiting for the nurse to visit to get my questions answered. Thankyou for all your help in advance. :) Mary Lou.

11 April 2002
Name: Leslie
Email: Heartlv2@aol.com
Age: 38
Country: San Jose, California, USA
Surgery: Urostomy
IBD: Birth Problem with Bladder
More Info: Please ANYONE. Feel free to contact me with any questions or problems you may have with ostomyies. I have had mine for 20 years now. And I am soon going to have surgery to get rid of it. It's causing me problems with my bladder. It's gonna be so weird urinating sitting down after all these years. But I will learn how I'm sure. God keep you all safe and know YOU'RE NOT ALONE.

12 April 2002
Name: Lee
Email: Wmirilee@aol.com
Age: 46
Country: High Falls, Georgia, USA
Surgery: Urostomy
IBD: Bladder TCC
More Info: I am scheduled for surgery May 2, '02 losing my bladder and one kidney. I have been having problems for a little over one year. Can't wait to be cancer free again. I love this site it was just what I needed! Great info and great humor thank you.

17 March 2002
Name: Jacq
Email: jqfowlerfowler@earthlink.net
Country: Ohio, USA
MSN Messenger: jacq6200
Yahoo Messenger: jacq6200
Surgery: Urostomy
IBD: Spina Bifida
More Info: I had my surgery at the age of 10 due to being born with SB (Spina Bifida) which left my bladder in a severe weak state, meaning no muscle control. I was constantly running to the bathroom. I had constant bladder infections which use to end me up in the hospital every couple of months and the pain was so intense that I would rock in my bed just to focus on something else other than my side and back hurting so bad. I rocked so hard at times that my bed would end up on the other side of the room. I've always been independent, so much that after I had my surgery, when the ET Nurse came to show me how to apply and take care of my appliances, I wouldn't let her touch me. I told her all she had to do was tell me what to do and I would do the rest. I even went as far as telling her what color pouches I wanted. I was a very happy ten year old, I thought to myself, I would never have pain again or have to sprint for the bathroom and I really thought I was something when I discovered that I was the only girl who wore a pink ostomy pouch. I've had my ostomy for over 26 years now and most times I forget I have it until it's time to empty or change it. I am also in a wheelchair due to my disability, but I don't let anything stop me from doing what ever I want. I have a very wonderful active life and I keep busy with my work, family and friends, because without them, I wouldn't have made it this far.
I would love to chat if anyone would care to, just send me an e-mail or catch me on line.

18 Oct 2001
Name: Gerald
Email: gedbee@lycos.co.uk
Age: 54
Country: Swinton, Manchester, England
Surgery: Ileostomy & Urostomy
IBD: UC
More Info: First op in October 1993, sent to ITU back to theatre due to masive internal bleed, over the years five further ops and due for Urostomy in November due to nerve damage.
Update:I had my Urostomy surgery on the 28th November and am doing fine now.

28 November 2001

Name: Bobbie Minshull
Email: bobbieminshull@hotmail.com
Age: 45
Country: High Wycombe, England
Disease:Radiotheraphy damage to bladder cancer
Surgery: Urostomy
More Info: I am 45 years old with two children and two grandchildren. I have had my urostomy since 1991. I had it formed due to severe damage to my bladder during radiotheraphy treatment for cancer of the cervix in 1985. I also have lymphoedema of one leg. I think that causes me more grief than the urostomy. I try to keep fit but have to limit what I can do. I try to play badminton (badly) and I ski (wearing odd size boots). I am always willing to help anyone who wants to talk.

15 November 2001

Name: Lynne Bagnall
Email: pab9454@hotmail.com
Age: 43
Country: Cheshire, England
Surgery: due to have a Urostomy
More Info: I am due to have an Urostomy early next year after having repeated water infections, some made worse by having catheters inserted. Have had Supapubic Catheter inserted for the last 18 months. But have had nothing but problems. Finally got my Doctor to agree to do an Urostomy.
I am also in a Wheelchair, due to Spinal problems, so if there is anyone else in my situation I would be grateful for any information.

13 November 2001

Name: Maranda
Email: Purplem01@aol.com
Age: 19
Country: West Virginia, USA
Surgery: Urostomy and Ileostomy
IBD: Not sure
More Info: Hi, my name is Maranda. I have a colostomy and an Ileostomy. I have had both bags since I was 3 months old, now I am 19. Everyday I ask myself why can't the doctors find a way to get rid of them, but i have always got the same answer... it's impossible. I have a boyfriend now and he loves me so much, but I get scared to be with him sometimes. I think I really need someone to talk to.

Name: Hope Howe
Email: howed12@msn.com
Age: 26
Country: Davisburg, USA
Surgery: Urostomy and Ileostomy
IBD: Birth Defects
More Info: I love to meet people with ostomies.

Name:David
Email: paparomeo@supernet.com
Age: 50
Country: London UK
Surgery: Urostomy
IBD: Bladder Cancer
More Info: I have just had surgery for bladder cancer and I have a urostomy. I would like to exchange e-mail with other people with the same problem so we can exchange experiences.

Name:Cheryl
Email: cheryltaylor4@home.com
Age: 48
Country: Virginia Beach VA, USA
Surgery: Urostomy and Colostomy
IBD: Colo Rectal Cancer and recurrent cervical cancer
More Info: Miami Pouch urinary diversion. Recurrent cervical cancer in which treatment included in addition to a radical hysterectomy, the removal of my bladder, most of my colon and some other various parts. I now have a Miami Pouch which I catheterize 5 times a day in addition to a colostomy bag which needs to be emptied but I survived the cancer!

Name:Jamie
Email: LAGEROMAN@aol.com
Age: 44
Country: United States
Surgery: Urostomy
IBD: Interstitial Cystitus
More Info: Had Urostomy done 10 years ago.

Name:Jackie Ryan
Email: snookumsxoxo@hotmail.com
Age: 36
Country: Australia
Surgery: Urostomy
IBD: Cancer
More Info: I lived with a neurogenic bladder all my life and had many surgeries to try and help the situation,including a reconstruction about 9 years ago.In 1996 I was diagnosed with bladder cancer and after 18 months of trying other treatments it was decided to remove my bladder.I have been fortunate that I have not had too many problems since my surgery and life is much improved.

Name:Tracy Menhinick
Email: TRACY_20_US@Yahoo.com
Age: 28
Country: Aberdeen, SCOTLAND
Surgery: Urostomy & Ileostomy
More Info:I have had alot of surgery in the past 6years, first i had an ileocystoplasty which did not work, so I then had an ileostomy and urostomy but they left my bladder in. Then 2 years later they had to do a total cystectomy. I have been left with an eating disorder since then. I have also had 2 repairs to my ileostomy and a small hernia removed. I hope i can help someone who is going through any of that problems or anything similar..

Name: Judith
Email: jkthomas@sover.net
Age: 44
Country: U.S.A.
IBD: interstitial cystitis
Surgery: Urostomy
More Info:I have been an ostomate for 14 years. I currently have a continent urostomy, but I originally had an ileal conduit for 6 years.

Name: Mike Sanders
Email: msand@isbe.accessus.net
Age: 45
IBD: bladder cancer
Surgery: Urostomy
More Info

Name: Mary-Anne Yost (Yostie)
Email: yostiem@yahoo.com
Age: 44
Country:Hants.UK
IBD: Neurogenic Bowel and Bladder
Surgery: Urostomy and Ileostomy
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: Shona Clews
Email: CLEWS.Wayne-Shona@xtra.co.nz
Age: 43
Country: New Zealand
ICQ: 43811498
IBD: Bladder Cancer
Surgery: Urostomy
More Info: Hi finally I have found somewhere to talk. Had a hysterectomy in March this year.
Had further problems which led me to a Urologist in July. He discovered a tumour in my bladder. He decided I had no choice but to have the bladder removed which he did in July. So far I have handled things Ok but because a secondary cancer was found in a lymph node surrounding the bladder muscle I am now on a wait and see program of a CT Scan every 4 mths (next one in Nov). I am also having problems with absorbtion of vital vitamins etc ie iron, B12 etc.
To top things off they discovered an embolism had travelled to my lungs, so am on Warfrin.
To top things off I live in an area of young people a minimum of 1&1/2 hrs from any specialists, help, support. I have just gone back to work full time and seem to get so tired.
I am happily married and my husband has been an awesome support to me. I would be grateful to talk with others in same/similar position.

Name: Karen Olson
Email: K4VIDEO@aol.com
Surgery: Kock Pouch due to bladder cancer
Age: 40
Country: California, USA
More Info: I am producing a video for new ostomates...urostomy first and later a colostomy tape. They are not like the depressing medical videos I have seen. I would love to hear real facts about dealing with a pouch-internal or external- for my scripts. Thanks - lovely page...first contacts I have ever had with other folks in the same boat and I have had my pouch since '84!

Name: Patty
Email: pfinch@netzone.com
Surgery: Contemplating Urostomy
More Info: I've had interstitial cystitis (inflamed bladder wall) for 15 years. So I can live without the operation. But I have feelings of extreme frequency anytime much urine at all is in my bladder. I eat a VERY restricted diet (only 2 or 3 kinds of fruit are allowed, for example) to keep the urine non-acidic. I go to the bathroom every 15 minutes for an hour or so if I dare drink a glass of water. I have problems from not drinking enough water. I get up 5 to 8 times a night, plus it is difficult to get to sleep with my bladder screaming at me.

I can do better if I take prescribed drugs to knock me out but I don't like the side effects plus I still get up at least 2 or 3 times. I've had to give up long hikes, biking, etc....lots of things that were important to me. It also restricts what jobs I can do. Might like to do elem. teaching again, but can't right now. I have tried every possible cure and some experimental ones. I'm one of the unlucky ones who nothing helps much.

So I guess you all would say GET IT OUT, right? I know it is stupid but I'm really concerned that the bags seem crinkly. Are there some that don't make noise? I know that seems like a little thing to be worried about but I am!

Name: Terry Fonger
Email: tfonger@sisna.com
More Info: I have a stoma on the right side. Urine runs out of it in to a bag. Maybe some one could tell me what I have.I have to dilate the stoma once a week Dr. orders. This is where I insert a steel rod into my stoma about 6 to 8 inches, it really hurts. I would like to talk to some one about this. If any one knows about this or anyone has any other comment it surely would be welcome.

Name: Lee Haunschild
Email: winthawk@PLD.COM
Country: Kansas, America
Surgery: Will be having a Urostomy
More Info: Looking for info on urostomy care, (no ET nurse for 150 miles).

Trying to find out if I can work with out pain after the operation. I work in the refrigeration industry, work on AC units, furnaces, and cooling for groceries. I do very lot of bending, twisting, crawling across attics, crawling under homes, lifting of weights up to 100 lbs, moving compressors over 300 lbs, climbing ladders, welding copper line sets.

I've been fighting, and losing, more lately on the pain levels and spasms. Trying to out guess if I continue to keep my bladder versus having a cystoprostectomy with an ileo-conduit urostomy. Will I still have the pain?

Please send any info on what to expect from the time I awaken to the care of the stoma.

Thanks in advance

Name: Reta
Email: RETALOU@AOL.COM
Age: 36
Surgery: Urostomy
More Info: Hey! I have had my ostomy for 26 years, definitely a pro. Single mom of two wonderful kids. Love to chat with anyone male or female.

Name: Chiew Buay, Tay
Email: realtypark_tay@pacific.net.sg
Country: Singapore
Surgery: Urostomy
More Info: This is the first time I am revealing my condition to someone on the net.
I had an urostomy done when I was 11 years old.I have a medical condition called spina bifida The nerves around my bladder are not functioning normally, thus unable to control bladder function.

Name: Debbie Durham
Email: ldurham@mindspring.com
Surgery: Urostomy
More Info: I would love to talk to anyone. Just e-mail me. Love your site.