Urostomates Since 1984: Looking to Connect with Others

I am an urostomate since 1984. Till now I have,nt had the chance to talk with someone of my kind.I had bladder trauma in 1983..due to wrong dye administered in bladder during an X-Ray (cystoscopy).Complete bladder,urethra & left ureter were affected due to the chemical.I had my urostomy in 1984 and now I am comfortable in it.



I am very glad that this forum has come .

Hello I am a Male Urostomate-- I had a Bladder Cancer Tumour , It was removed but the Cancer was invasive so they removed my Bladder along with my lymph nodes & Prostate. This was about 22 months ago. I took early retirement so I dont work, but I have got used  to my problem & carry on as nomal as possible...Its not perfect but there are people out there who are far worse off than I am....

Hi Vulcan,

Good to see someone who is of my category.True ! we are much well of than someone out there ,and thank God for that.Since when are you an urostomate ?Good to have a forum where we can discuss such things and help each other.

Hi Vulcan,

Good to see someone who is of my category.True ! we are much well of than someone out there ,and thank God for that.I have been with the stoma since the age of 13 and I am 39 now.I am so used to my stoma that , I dont remember the natural way ...how I was before.Good to have a forum where we can discuss such things and help each other.

Dont worry about not being perfect...we are beautiful in our own way

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keep smiling .

Hi, Tis nice to meet you both. I had a urostomy for nearly 3 years due to bowel cancer (i have a colostomy also), i had the Uro transformed into an indiana pouch in march of last year.



Any quetions just ask.x

Words of Encouragement from Ostomy Advocates I Hollister

Hi Sweede,

Good to know you.By the way ,what is an Indiana Pouch ?Please explain ,I am very curious to know.

No worries lass, thats quite a common question, an Indiana Pouch is an internal continent resovior for urine, the pouch was made from a section of my colon, drainable every 4-7 hrs from a small stoma, down next to my pubic bone.



I never heard of one until i saw a newsflash about an experiment about growing neo-bladders from stem cells on petri-dishes for transplant, so i decided to investigate more, and it was then that i realised i could be a possible candidate to have one fashioned from my colon.



I had the op in March '08 and apart from the odd leak i get when i forget to drain in time and a 2 minor urine infections...alls good.



So yeh good to meet you n if you got any questions, please ask.x

Thanks for the explanation.Thats quite interesting as I am hearing it for the first time.Anyhow I will check with my Doc if it is done in this part of the Globe (India).Take care..bye

hi..i am new here and was so glad to see there are others on here with urostomies..i am 56 and had my surgery in 03 due to i.c. too long to spell out..ha..sure glad to meet you..and the others on here..

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Hi Friends ,



                I am Sreeram From India(Chennai). I am also an urostomate.I am very happy to see people like me who r having urostoma. I am 26 now . i am having urostoma from 1986 . ok By the grace of god everything is going ok. i am doing my job as a software engineer. some times it is very tuff to sit more than 8 hours. any way we need  to work in order to survive .



For Urostoma people  cool weather will matches good. i have one experience with india( chennai) where it is so much hot and humidity in summer. there i suffered for somedays due to hotweather .It is better to drink more water everyday .





If you know anything advanced about Urostomy Please Update the Forum.



Thanks

Sreeram

Hi,

Sreeram,

Good to find some one in India in this Forum.Are you in Chennai Now ?I am in Pondicherry.I too am an urostomate since 1984.Where did you have your surgery done ? I had mine in CMC Vellore by Gr.Ganesh Gopalakrishnan.

I too am working for a computer manufacturer...Lenovo .I am in the GSC as a Buyer.This Forum is very Good.We can help each other and other urostomates in this Forum.

Hi Sunitha ,



             I am in Chennai ,working as software engineer   .My Surgery also had done in Vellore CMC. but i dont know the doctor's name but they had done a very good job. i have gone through three operations in my childhood . i think in 3 years old .





Actually I am from Andra Pradesh . from the last couple of months i am staying in Chennai .



Thanks

Sreeram

Hi,

  I had my surgery when I was 12 yrs old. My bladder was damaged during an Xray procedure -internal Chemical burns during Cystoscopy. What was wrong with your bladder ?Where do u get ur supplies from?

Hi

  

   For me due to some bladder problems i got urostoma.

I Usually get all my appliances/Material from Vyalikaval,Bangalore . But recently i came to know that even in chennai also all the material/supplies will avalable @ Ramana Clinic, T Nagar , chennai .





Thanks

Sreeram

Thats gud news.I am getting my supplies from Mumbai till now.I would be glad if I can get it from Chennai.if you get the address please let me know.Do you use imported or Indian material?I get both imported & Indian appliances from Mumbai.

By the way do you do a regular check up ? Where do you do it?

Hi Sunitha ,



       Right now which i am using are all local made that means they will make them in Bangalore Only. and of course some material are from other countries also  .



FYI.



Bangalore Address:

--------------------------------

Karnataka Cancer Society,

No. 1038,

11th B Cross Road,

Vyalikaval, Bangalore.

------------------------------------

This is chennai Address:

-----------------------------------

Sri Ramana Surgical Clinic

#18

Hindi Prachar Sabha Street

T. Nagar

Chennai-600017

Landmark: Near Bharat Petrol Bunk



Thanks

Sreeram

Hi Sunitha ,



                I will do my regular checkups everything @ Bangalore only .

From the last three years i am staying in bangalore . for some project work purpose I came to chennai .





Thanks

SreeRam .

Hi Sunitha ,



                       How are you ? How is your life going on ? are you in any vacation for long time  y because there no replies from you . ok then Takecare Bye.







Thanks

Sreeram

Hi seeram. nice to meet you, i am a urostomate, or was rather, i had an internal pouch made last year.  It's nice to see more urostomates popping up.



I am intersted in how you get your supplies, i never knew india made ostomy supplies, but i guess that is me being nieve.  What is the situation for getting ostomy supplies in India, i mean do you have to pay for them, and can they be easily sourced.



the whole issue of obtaining ostomy supplies worlwide interests me, for example if you have to pay for them, what of the people who cant afford to pay, is there government help for such circumstances.



Id be interested in all you have to offer on the subject.



I hope this find you well.x

Hi Sweede ,





                   Sorry for the late reply . I too really very happy to see more urostomy people on this forum .actually  in India we get ostomy products In Mumbai ,Bangalore ,hyderbad and chennai and different states in india.





I am from Bangalore. Here the Uropouch manfacturing company is there . here we get the products for reasonble rates like one pouch = 50 indian rupees.



some products like Alcare Paste and Adheshive Sheet will be get from Japan.



I think belt , belt rings and stickers ...r made  in bangalore Only .



Here govt is not involved in supplying all these products . some rehabilitaion centres or some private people r doing this business.





Very rarely pouches will leak that r made in Bangalore .. remaining they always work fine without any leakage.







Thanks

Sreeram

hey urostomates - interesting chat - how long can you wear a bag if it is made in banglore? (I am from scotland) - interesting

Hi, I'm Julie from Australia. I've had a  urostomy for 1 year, due to bladder cancer. I teach and bike ride.

hi cokacoil ,



                   I will  get quality uropouches but some times very rare  i got some leakage uropouches also.



i will use the uropouch more than 15 days .



How about you cokacoil? where you get the products and how it varies from india ?











Thanks

Sreeram

i get mine from fittleworth to deliver but I use a microskin pouch from oakmed it is very comfortable & releasesa blue dye if its getting near to needing changing.  A sign that i have noticed when it is needing changing is that my skin gets itchy, I also notice that when i am emptying my pouch it gives off a stronger smell when it gets near to changing (I think it smells like smoked ham!) - all in all I would only wear mine for 4-5 days before changing.  I live in scotland (UK) so we get our supplies free on the NHS ( as it is lifelong condition - not everyone in th UK gets their medications for other illnesses free) I also use a night time drain bag which holds up to 2 litres so a good nights sleep !  Want to hear more about your miracle 15 day uropuches & side effects if any & where can we get them !

Hi

cokacoil,





       In India ,especially in Bangalore the weather is cool in all most all the seasons, this type of wheather is good for Urostoma People.so this is also one reason , the pouches can be used for more than two weeks.



In order to avoid Smell in the urine we need to take as much water as we can every day .





Why because i stayed in Another State Chennai in india where too much heat and humidity so BioPlast(gum on the Pouch) will melt like any thing and even we will get itchy around the stoma.

In summer due to heat and humidity we will get more sweating so thats why we will loss our water and energy through sweating.



In india from March to May is  summer season  ....so we Should drink more and more water .



How about scotland weather in a year Cokacoil ? .



Thanks

Sreeram.SPAN onmousedown="if(editor_type=='1'){WriteHTML('','editor');}else{WriteTEXT('

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ah the weather in scotland... they say we can get four seasons in one day & we can. rain sunshine, wind, cold, heat.  I suppose our weather is very changeable.  Winter is from about Nov - Feb (last snow was late February.  Its beginning to heat up now we are about 7 degrees at the moment! we are entering spring all the flowers bloom, lambs are born etc our country is very green with mountains, it is very beautiful.  Yesterday, as I am on the east coast of scotland at the North Sea it got very warm (15) and a haar (mist /fog) comes off the sea.  we don't get a lot of very warm days of sunshine in our summer then it into autumn & the leaves turn beautiful colours of golds,reds,browns,oranges & fall off the trees.  Our wildlife is things like deer, foxes, squirrels, rabbits etc. what about any wildlife in Bangalore?

[quote="sounitha"]Thats gud news.I am getting my supplies from Mumbai till now.I would be glad if I can get it from Chennai.if you get the address please let me know.Do you use imported or Indian material?I get both imported & Indian appliances from Mumbai.



[roberto/quote] hi sounitha, appears that I am a junior to you as far as being an UROSTOMATE. I used to be a heavy cigarette smoker resulting in a CA Bladder. I underwent surgery @ TMCH and the urobladder was removed as a life saving measure, to prevent malignancy. A stoma was created for discharging liquid wastes from the body. I accepted this physical change & the future ahead of me, with an external uropouch.

I learnt the skills of post surgery management of the new system and was forced to change to suitable garments to suit my dressing style. Procuring skin barries faceplates & reusable pouches was never a problem in the last 18 years. The two piece system which I am accustomed to is indigenious pouches made @ our Rehab Center & the Skin Barrier is Japanese origin.  

For assistance call; Sr. Anjali Patwardan, The Ist Indian ET @ TMCH, Parle, MUMBAI, & Sr Saroja Snr. ET & Dr. Trivardhanan's Clinic, Egmore Chennai, will assist for your needs.

I was very much involved in the Post Surgery Rehab Center of Cancer Ostamy Survivors, as PRO & Treasurer & Counsellor, of a NGO Local Chapter. We took care of members of known types of Cancer Ostomy Survivors.  Best of LUCK.

Hi . i had a urostomy in 1992 after having a motor bike crash involving a car that hit me head on. Apart from broken bones tha main damage was to my bladder and ureatha.The mussels were destroyed at the bladder neck and there was a lot of nerve damage.I had an artificial sphincter fitted in 1990. It was a Brantley Scott and was a cuff type (like a bagel) .It went around the urethra to restrict the flow of urine near the bladder neck and was operated by squeezing a little valve in the scrotum. Unfortunately I had bad blood supply in the urethra and the B/S caused narcosis in the urethra and was removed in 1992.

I was given the chance of an internel pouch (which was still at the experimental stage at the time) but i refused as I had already had about 20 operations and had had enough and just wanted to get on with my life without wetting myself 24hrs a day. It took me about 10yrs to accept the urostomy and now i have no problems apart from a constant urine infection that wont go away.In the 19yrs I have never met anyone else who has a urostomy i was wandering what percentage of ostomates have urostomys?

Glenn