Hi,

I have had my Urostomy done since the year 2000. The reason for it was, after being diagnosed with Cancer and having Radiation therapy, they discovered that they had severely burnt all my insides leaving me with Radiation Enteritis.

Of course I was shattered and must admit that even though I have gotten used to it, I still am having a hard time accepting it and feeling good about myself.

My 10 year relationship broke up over it and I feel that I will never find anyone who will except me this way. Common sense tells me this is wrong but my feelings outweigh my commonsense.

I was so glad to find this site as I have never had anyone to talk to about these things with, as no one else really understands. I hope someone out there would like to get in touch and let me know how they have coped and if anyone has had the same experience as me.

Anyway Take care,
Ros

I am 45 years old and was born with an ectopic bladder/bladder extrophy (bladder outside the body) and other congenital pelvic abnormalities. I was five years old when I was re-plumbed with a ureterosigmoidostomy which means that everything (faeces and urine) went out the back passage. I started getting some pretty serious urinary and kidney infections in my 30's and got in contact with a urologist who indicated a continent diversion could help prevent cancers and other associated problems. A continent diversion is where the surgeon resects a part of sigmoid colon and uses this as the new bladder. It is attached to the ureters from the kidney and a stoma is formed on the anterior abdominal wall. A leg bag is used in the healing process before catheterising can commence. I spent 17 hideous days in hospital and two months off work. However, apart from a redo when the stoma stenosed (tightened to the point a catheter would pass through) and the odd infection it's been the best thing for me. I can eat and drink what I like without too many problems. The only thing I have to remember is to have catheters on hand - a spare at work, in my handbag, in the car etc. I have travelled overseas many times post the operation with no problems. However, I am prone to bladder stones and will probably have another op next year to remove more stones. I have a container of nine rather impressive stones from my last op. If anyone wants to discuss continent diversions and bladder extrophy I'd be happy to chat. Cheers Di

I have a ureter ostomy, and am wondering if anyone takes a maintenance antibiotic.

Hello all, I have a urostomy since 2005, I had my bladder removed due to cancer, I have only just found this site and wish I had done before, as I felt like the only one. Does any one know if it is possible to get a folding night stand, that is small enough to take out, just in case you didn't make it home ? I think it would give a lot of freedom of choice. Many thanks Derek

I am a 56 yr old female, married. I had my bladder removed in 2000 due to having Interstitial Cystitis. an extremely painful disease. it helped but i still have pain 24/7 at least I have a lot more good days now than bad. I am a disabled nurse, and would love to write other urostomy friends..

Hi,
I have had a urostomy for 15 yrs due to IC. I was put on Cipro 250mg one a day to prevent uti. I never had a problem until 9 mo ago and I have had a antibiotic resistant kidney infection 4 times. I have had to have IV antibiotic treatment for 10 days 2 times in 6 mo. If anyone has had a problem with antibiotic resistant infections I would love to hear from you to see what they have done for you.

I had my bladder and prostate removed in 1986. I was retired medically from the US Navy after having my surgery.

During my service career I worked with tolulene, nuclear weapons, chemical weapons and exposed constantly to radiation from high powered antennas used aboard aircraft carriers.

I use to have at least 4 urinary tract infections per month, and had to have my pouch redone surgically once to allow better drainage.

I have went through several types of pouches, however I have found that the Convatec, :
"ActiveLife convex" one piece pouch is the only one that seems to work for me.

My infections have diminished considerablly since going from a two piece sytem to the one piece system.

My only problem is, that when I travel or go to a warmer climate I might go through 2-5 pouches in one day. I have tried the prep wipe, which is a complete waste of time and money as it does not assist at all in holding the patch on.

I have also used the paste which is also a worthless attempt to stop leakage as it oozes out almost instantly after putting on a new pouch.

I have found that if I use "Coast" soap when I shower the patch stays on from 4 -6 days and peals right off with no skin irritation.

I do not use a leg bag, or night bag as it seem to make me feel like a slave to these appliances.

It also seems like 1 or 2 pouch leak in every other box or so, sometimes at the seams, which is suspicious when they cost over $10 each.

I have a great Urologist, he now checks me once a year, doing blood work, urine samples and an Ultrasound of my urinary track.

I am 68 years old, lead a perfectly normal life and most of the time forget that I have a urostomy pouch on my side.

I wife and I travel extensively, so I always carry as many pouches as I can. Caution do not put them in your checked luggage, it seems when I did this before the temperature change in the cargo hold of some aircraft seemed to deteriate them. I always have them in my carry one bag and have never been questioned at any airport regarding what they were for.

Sincerely,
Garry

    Hi I am writing in regards to my mom she was diagnosed a year ago May 07 with bladder cancer they went in and removed as much of the tumor as they could and she went through 3 months of chemotherapy unfortunately the chemo didn't help her so they told her they had to remove the bladder well they went in to remove the bladder and found that the cancer had spread to her vaginal wall.. not only did they remove her bladder they removed a large portion of her vaginal wall and gave her a complete hysterectomy she had the surgery on February 11 2008 she seems to be doing fantastic she is adjusting to the bag quite well like most of you we had problems with leaking etc she uses ConvaTec supplies they seem to be working well she is right now in the process of radiation she has one week left and then she will go through chemotherapy again we pray they tell us those to letter CF which stands for cancer free.. I wish you all the best of luck that your lives continue on a positive note mom has been very strong through it all and has kept a very positive attitude I am writing about her because i have been taking care of her for the past year with MD's surgeries etc

    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,

    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.

     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.

     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!

     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

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?