BagItAway Ostomy Supplies

Ostomy With Confidence Inc.

UOA Logo

Evansville Ostomy News
 

Urostomy Pen Pals
Ostomy Pen Pals
 Post your Urostomy Story


Your name: Minh Phuc
E-mail address:
Country: Vietnam
Comment or story:
    Dear all of you, I am a Doctor of medicine in Vietnam. I had scholarship of International Ford Foundation Program studied the masters degree at Hawaii University in Honolulu 2003. I diagnosed prostate sarcoma. And then to treat for this cancer I had to remove prostate and bladder. I had urostomy since 5/2006. After one month for operation I came back home in Bac Lieu Vietnam. Now I am looking for urostomy two pieces pouch of new image Hollister in Vietnam but NO see it. I haven't condition and facilities to buy this pouch with the all of cost two pieces about 12.7 dollars. Please help me to buy this pouch with cheapest cost. Thank you so so much. I am well with meditation for everyday about 40 minutes. I am helping everybody who gets cancer and HIV in my country. I would like to share my experiences with you. Warm heart to all of you,
Tuesday, April 29th 2008 - 12:38:43 PM
Your name: Bud R.
E-mail address:
Country: USA
Comment or story:
    I'm a newbie to the urostomy scene....a few months now.  I'm using Hollister equipment and find no problems....just emptying the bag much more often than I urinated before the surgery. I can't imagine changing a bag 6 or 7 times during one day - my bags go three or four days before changing. best wishes to all of the urostomates.
Friday, April 25th 2008 - 12:38:43 PM
Your name: Cheryl
E-mail address:
Country: USA
Comment or story:
     Hi, I am 54 yrs old and have had a urostomy for 15yrs due to severe Interstitual cystitis. I have poor drainage from the L kidney and the L kidney has shrunk in size due to this. The last few weeks I have experienced severe L side back pain below rib gage. My urologist states there is no blockage and he cannot explain this pain. I am living on vicodin and had to take a leave of absence from my work and I feel I,m not fit to be around my family and friends because I,m so irritable because of the pain. I feel hopeless and feel like my urologist has given up on me. I just wondered if anyone else had these symptoms and what they did.
Tuesday, March 11th 2008 - 12:38:43 PM
Your name: Lauren
E-mail address:
Country: England
Comment or story:
     Hi I'm 23 years old and have had a urostomy since I was 4, from reading other peoples stories I vary slightly as I don't have a bag, I'm lucky as I just put the catheter in and when drainage is finished I take it out and go on my way! Its not without trouble though, I regularly suffer from infections which usually end up with hospitalization. have had 22 operations so my stomachs a mess! would love to have a pen pal to talk to as i know as much as you think you have adjusted to it there are days when you get down and don't want to be the same person especially if you constantly feel ill. however i would not have survived if I had not had had this operation so I'm grateful to be here!
Tuesday, March 11th 2008 - 12:38:43 PM
Your name: Kendra
E-mail address:
Country: USA
Comment or story:
     I have a urostomy, Have had one for 10 years now. some days I feel like crying all day. I do not mean to feel sorry for my self, but i just have so many problems with it. It leaks all the time and I am on medicare so the bags cost so much and I can only get 20 a month, they changed my paste and my bags do not stick. Some days I have to wear a towel all day cause i have changed my bags 6 or 7 times that day and I am out of bags till next month. I wear Cymed. I guess i just needed some one to cry to sorry, Kendra
Monday, January 29th 2008 - 12:38:43 PM
Your name: Bill Jones
E-mail address:
Country: England
Comment or story:
my name is Bill Jones, 58 years old, and i live in a market town called Ormskirk in Lancashire, 15 miles from Liverpool, in the OK, i have been a urostomate for 15 years due to continually having urinary problems,,, resulting in a paralitic bladder,,,,,,and major problems that this incurs,,,,,,,i had my urostomy done and it changed my life,,,,and the freedom it gave me instead of moving from toilet to toilet was immense,,,,,,,5 years ago i developed an ulcer near the stoma site,,,,,,,and after almost a year of trying to clear the problem,,,,,using every conceivable concoction it was decided to re-site the stoma (even then the old site took another year to clear up),,,,,,,,however from the outset the new site has proved most problematical with the stoma both retracting and decreasing in size (it is now down to to 11mm in width) and whilst it will never close up it is proving a great problem with leaks due to the retraction,,,,,,and the fact that the hole is right up against the normal skin wall with resultant leaks,,,,,,,,my stoma nurse and i have exhausted all avenues of ideas to combat leaks,,,,,and the problem has been exacerbated by the fact that i i have a parastomal hernia around the present site.........in addition,,,,,,late last year i  developed a severe precancerous condition in my eosophagus which necessitated the removal of my eosophagus ,,,,,,,,,,and this has resulted in me losing 5 and a half stone in weight which has more than highlighted the hernia,,,,,,,,,,i have been referred to a designated senior specialist urologist who says that the stoma/hernia is a mess and says that the only option is to re-site the stoma somewhere else and also try and sort out the hernia,I know this all sounds like a category of disasters but do other people with parastomal hernias work through their problems?
Monday, January 22nd 2008 - 12:38:43 PM
Your name: Sonja
E-mail address:
Country: USA
Comment or story: I have a Colostomy since 1994. I also have had a Urostomy since 1967.  I am 53 years old and I would love to have some Pen pals to write to and/or talk to.
Sunday, January 13th 2008 - 12:38:43 PM
Your name: Henry P.
E-mail address:
Country: USA
Comment or story:      I had cancerous bladder, cancerous prostate removed 09/2005 resulting in urostomy.  08/2007 cancerous lesions in urethra cauterized.  Current problem is two (sometimes bleeding) peristomal ulcers (about size of nickel).  21(weekly or bi-weekly) visits to wound center began 06/2007 with no improvement at all - cauterization using silver nitrate was occasional treatment.  Ostomy nurses are present.  I am desperate to talk with anyone who has had this situation.
Sunday, January 13th 2008 - 12:38:43 PM
Your name: Rebecca M.
E-mail address:
Country: USA
Comment or story:      Ok, I have a question because I have a concern about my urostomy.  I have a black and blue like circle around my stoma.  It looks like a bruise. It is completely around the stoma.  Should I be concerned or is that normal?
Friday, January 4th 2008 - 12:38:43 PM
Your name: Keith
E-mail address:
Country: USA
Comment or story:      I have urostomy and I did not want to keep empting it ever 1/2 hour or , so I hooked up a drainage bag to the pouch and strap it to my leg. I only empty it when it gets full which could be hours not minutes. Any one else have the same idea ?
Tuesday, December 4th 2007 - 12:38:43 PM
Your name: Holly S.
E-mail address:
Country: USA
Comment or story:      Hello,
Next week I will be undergoing a surgery to either enlarge my existing neo-bladder or remove it.  Which brought me to this website, to get an idea of what life is really like with a stoma and collection bag.  How active can you be with a urostomy?  I love to lift weights, swim, go in the Jacuzzi and ride a bicycle.  Are any of these pastimes hindered by wearing a bag?  My neo-bladder of 8 years (due to bladder cancer) is plaguing me with incontinence, frequency, infections (I have to cath), and the need to watch what I eat so as not to irritate it, (no acidic foods such as tomatoes, vinegar, coffee, soda, etc).  Please let me know how it has been for you overall.  My surgeon is allowing me to make the decision. May God bless each and everyone one. He is my strength and comfort through it all.  Thanks,  Holly S. 
Tuesday, December 4th 2007 - 12:38:43 PM
Your name: Becky
E-mail address:
Country: USA
Comment or story:      I had cancer in my bladder in Dec 2005.  We had no chose but to take out the bladder and have a Urostomy.  Well that was better than cancer.  My problem is they had to take some of the vaginal area out due to the fact that the bladder is hooked to the vaginal area.  For about a year now it hurts so bad when my husband and I have intercourse.  I have been to GYN, 2 Urologist, 2 Surgeons.  But no one can help me.  Can someone help me please.
Oh! By the way "I love this site." 
Tuesday, November 13th 2007 - 12:38:43 PM
Your name: Kris Matthews
E-mail address:
Country: England
Comment or story:      Hi,
I've posted my story on this neat site back in 2005 when I have my urostomy due to severe and chronic IC. I have an ileal conduit with external appliance.for the first year I was happy and grateful to have my quality of life back....however, for the last year or so, frank blood and blood clots, ranging from small to large, are a common and frequent occurrence coming from my stoma - about 2 weeks a month this happens (on average),  sometimes more,  sometimes less.  I endure pressure pain around the kidney region,  but is nothing specific.  No kidney stones or damage appear on tests they perform,  except they noted there is a slight kink in the right ureter where it joins onto the stoma and the ureter appears more full...so possibility of a bit of back pressure.  But my urostomy won't investigate it further.  He is very indifferent to my plight and concern that so much gross blood and clots fill my pouch!  I've asked him to look into it,  but he just says he doesn't know why it happens and there's not much he can do about my kidney region pain....I am gutted because it's like he's wiped his hands of me.  Does anyone else have this bleeding problem?  
Thursday, November 1st 2007 - 12:38:43 PM
Your name: Sue Lewis
E-mail address:
Country: England
Comment or story:      I was diagnosed with bladder cancer in December 2006 and had mt bladder and all surrounding bits taken away in January 2007.  Everything went well except my left uretha was damaged during the operation and I have to have a stent which is changed every 10 weeks is there anybody else had a similar problem.  Other than that I am fine at back at work, coping well with my stoma.   
Saturday, September 1st 2007 - 12:38:43 PM
Your name: Cheryl
E-mail address:
Country: USA
Comment or story:      My Dad who just turned 77 years old found out he had bladder cancer and had his bladder removed. He's had his urostomy now for 3 months.  He's already had 2 kidney infections. He is trying to drink a lot of water. Has anyone else had this problem and if so, what can he do to help prevent this.  He also says he is very sore where the ostomy pouch fastens to him but there isn't a rash. I sure could use some advice since we are pretty new to this whole ostomy thing!   
Friday, August 31st 2007 - 12:38:43 PM
Your name: Jane O'Toole
E-mail address:
Country: USA
Comment or story: I have a urostomy as a result of bladder cancer in 2005 so I'm heading around the corner of three years with it.  Cancer is always a scare but I've adapted very well to the urostomy and actually have found some benefits and humor in it -- hiking for example -- I never get my shoes now when I have to tinkle! The urostomy is not tops on my list but being alive and well is and I'm very grateful for the skill and support I have received to allow me to live this wonderful life.  
Tuesday, August 28th 2007 - 12:38:43 PM
Your name: Debby
E-mail address:
Country: USA
Comment or story:      I had a urostomy since 2/04 due to radical radiation because of uterine cancer .  i had soo much trouble in the beginning the doctor had to revise the stoma and move it to another location.  still had some problems but found a wondeful e.t. nurs that never gave up and tried every bag out there.  we finally found the new hope bag and after several adjustments - finally found one that lasted more than a day.  i have since gained alot of weight (due mainly to depresion) and am thinking of having the lap band surgery done.  has anhyone out there had any weight reduction surgery done and if so how did you make out? would love to hear from anyone.  
Tuesday, August 21st 2007 - 12:38:43 PM
Your name: Peter
E-mail address:
Country: Sweden
Comment or story: I'm a 53 years old male from Sweden (sorry for my bad spelling). I have had bladder cancer.
Are there anyone out there with experience of extra high doses of cytostatica. I was fit and I´m pretty strong so they overdosed 13 Percent over the maximal dose.  I'm still tired over 2 years after the treatment. Still strong but can only walk or do anything for less than 3 minutes.
They took the bladder and a lot of lympf nodes, so today I have urostomy and to get a hard on I use injections direct into my penis.
Would love to hear from others with the same problems and compare solutions.  
Wednesday, August 8th 2007 - 12:38:43 PM
Your name: Keith
E-mail address:
Country: USA
Comment or story:      I wear a leg bag off of my pouch so I don't have to empty my it so offing. I also have put a leg on when I wear shorts . I wear the bag under my underwear with straps that comes with the leg bag . Put the straps through the leg opening and around the waist band.
 How many others have same problem wearing shorts ?.  
Tuesday, August 7th 2007 - 12:38:43 PM
Your name: Debbie D.
E-mail address:
Country: USA
Comment or story:      I has Serve IC from 2nd Grade through High School and Did not Tell my MOM. Went to Duke University Hospital and Found a Great Uro. We did 8 Surgeries Before I had my Bladder removed and then I had 4 revisions Made of my Ileo-Conduit. In September of 2004 I had my Right Kidney removed Cause it was dying.  I love the Outdoors. We go Camping Hiking, and to NASCAR Races. I still have to go to the Hospital and have the Stent Changed in my Left Kidney which is Blocked now.   But I Look to God to get me through my Hard days and thank him for the Good days.  I am 48 years old. Been married for 23 Years. I could not have Children , But I love them so Much.   I love the Beach. I was born and raised only 4 Miles from Carolina dn Wrightsville Beach in Wilmington, NC.  
Monday, August 6th 2007 - 12:38:43 PM
Your name: Arnold W.
E-mail address:
Country: USA
Comment or story:      Years ago I had an accident and tore my left ureter off the bladder. I had surgery and it looked as thought I was ok - but I was not. My left kidney shrank and it's output is down to 25%. To make a long story short, my right kidney acted up. My bladder got involved and it's output was greatly reduced. I had some stents and became incontinent. I was forced to wear a McGuirre (Sp) urinal. The condition of my bladder worsened. Kept on shrinking. To save my kidneys I was advised to have the bladder removed to be replaced by a urostomy. I had some counselling and agreed to have that procedure. as I remember, preop was terrible - compared to that surgery itself was nothing. When I came to I noticed that I had a red tomato on my lower right side. Some catheters were dangling out of it.  After a few days the cathts were removed and I was fit with a plastic bag. My urine came drop by drop from what the nurse called stoma.  The doc told me that this stoma will shrink and that I have to adjust the wafers and bags accordingly. He also talked to me about the bag and stressed that the bag is my friend - without I would be in real trouble. That has made a lot of sense. And thanks to my friend I can move about - travel and do many things. I use the ConvaTec appliance. 2 pieces. When I apply the wafer I use stomahesive that closes round about the stoma and makes a perfect seal. I wear the wafer for close to 2 weeks and the bag - although I don't need to - for 7 days.  I feel real well and have to remember that the bag is there. For the night I attach a leg bag to the uro bag.  I have made a note of all the washrooms so that I won't be stuck. When I take a car trip I use ConvaTec's night bottle.  
Saturday, August 4th 2007 - 12:38:43 PM
Your name: Larry Trapp
E-mail address:
Country: Evansville, Indiana, USA
Comment or story: As creator of "Ostomy Pen Pals", I apologize for any inconvenience that the "Spammers" have caused the innocent participants of this website.  Meanwhile, I have made necessary security arrangements to see that potential "spammers" will be rendered ineffective at any further Email harvesting attempts.

Let us please continue our mission in helping fellow ostomates by exchanging Email messages.  I certainly appreciate your trust and confidence in our mission to help fellow ostomates.

Sincerely,
Larry Trapp    

Wednesday, July 25th 2007 - 12:38:43 PM
Your name: Peggy
E-mail address:
Country: USA
Comment or story:      I use the Bard nighttime urine drainage bag.  My ET nurse says we can use the same bag for a month.  What can be used to deodorize the bag and tube?  I rise out every morning with water but that does not help with oder.
[ Sign the Ostomates Comparing Notes - Urostomates | Back to Evansville Indiana Ostomy Chapter ]
Main Areas

Homepage | Monthly Newsletters | Ostomy Forum | Links
Comparing Notes | Monthly Meetings | Cartoonsville
Bi-weekly Bulletin | Hints & Tips | Contacts | Membership | Guestbook
Glossary of Terms | Miscellaneous | Search
Disclaimer