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Your name: Rajeswari.b
E-mail address: balraj_hanuman@hotmail.com
Country: India
Comment or story: My father underwent urostomy operation on Sept. 1,2008.A full course of radiation was given after that. The after effects of radiation is affecting him very badly like intestinal constriction which leads to food getting clogged near the constricted intestines. Till the food is brought out by inducing vomit he refuses to take food. Continuous loose stools prevails at times. He refuses to take food as he become tired after 20-30 times of purging. Doctors say that the villi of the cells have been mutated by radiation and no absorption takes place. He is severely emaciated and weighs only 33 kgs. Can somebody suggest or help me out in increasing his cell count so that some absorption takes place and he regains normalcy.
Please advice.
Rajeswari
Thursday, May 27th 2010 - 11:44:24 AM
Your name: Michael Collett
E-mail address: michael.collett@laposte.net
Country: English, living in France
Comment or story: In reply to V.Krier.
I have a urostomy (since May 2009). I use Hollister one piece pouches and a Hollister night bag, the tube of which which clips very firmly to the "valve" of the pouch. Unfortunately, I have twice forgotten to close the outlet valve of the night bag BUT I have always put that bag into a large, flat bottomed, plastic box on the floor to cope with such emergencies or leaks - luckily. To be doubly safe, I place the night bag in the plastic box and then pass its tube through the carrying handle of the box before attaching it to the pouch, so that whatever my night time movement, the bag cannot come out of the box. Does that help?
Wednesday, May 26th 2010 - 01:23:22 PM
 
Your name: Cheryl
E-mail address: broughton4@cox.net
Country: USA
Comment or story: My dad, who is 79 has had a urostomy for 2 years now due to having his bladder removed because of bladder cancer. He is cancer free but keeps getting Urinary tract infections and ends up in the hospital about every 3 months or so. His Doctor is thinking that it could be due to mucous from the intestine blocking the urine. They suggested he go to the stoma clinic and have them flush out the loop and teach him how to do it. We did go, but they said they haven't heard of this. Just curious if anyone has ever had this done. Any suggestions would sure be appreciated.
Wednesday, April 21st 2010 - 07:28:20 PM
Your name: Kym
E-mail address: kymcal@hotmail.com
Country: Ontario,Canada
Comment or story: Hi There, I happen to be reading a few of these posts and realized, that I might be able to help someone. I suffered terribly with what I thought was Interstitial cysytis for 2 years until they found that I did have Bladder Cancer Insitu. Fortunatley for me, I had my bladder removed in September 2007 and continue to get my CT scans every 6 months. They seemed to have gotten every bit of my Cancer, though in doing so has left me with severe nerve damage.. (gut me like a fish, as the Dr. says) but I'll take it...It is not easy, but I got a second chance...I just want to say, for anyone with Ic or cancer, I feel your pain and if I can ever be of any help to anyone, or to share my story, please do not hesitate to drop me a line. I have been very fortunate to have a wonderfully supportive family, which has no doubt helped in my positive and "Dorky" outlook on my second chance! I have always been a very positive person in the face of adversity, and I would be very honoured if I could help someone else to keep positive and to laugh at life. Take Good Care of Yourself, Kym
Wednesday, April 14th 2010 - 11:31:25 PM
Your name: Charlene
E-mail address: Pvtlady@live.com
Country: USA
Comment or story: Hi there! I've had a ileal conduit ostomy since 1984 due to removal of my bladder. I've had my ups and downs with my ostomy... my main concern is the placement of my stoma. It is placed where my "belly roll" is and it is very hard to get supplies that work. My stoma doesn't protrude much so I can't wear anything without convex, but the convex cuts into my stomach. I've had an open ulcer sore where the "hard ring" rubs and cuts into my skin. I don't have insurance so I can't afford to try this and that.. hoping someone knows where I can get help with this matter.?
Also, I'd be more then excited to have a penpal!!
I'm 40, married, kids, grandkids (I'm raising), a Great Dane and a cat!
Wednesday, April 14th 2010 - 05:24:28 AM
Your name: Dewayne
E-mail address: keithsnipes67@yahoo.com
Country: Clackamas
Comment or story: we have recently had urostomy surgery and have tried many different things to get the bag to adhere we have found out that using a hair dryer to help the adhesive adhere works quite well also under wet and moist conditions like swimming hot tubing or sweating the belt works quite well also the Hollister two piece bags are working quite well for me but use what works well for you. my wife helps me center the bag over the stoma. I also shower and shave at the same time before changing my pouch. Having the area clean and well shaven helps us. we hope this helps you.
Friday, March 26th 2010 - 11:05:07 AM
Your name: Yaima Barnes
E-mail address: yaima.barnes@yahoo.com
Country: USA
Comment or story: Hi I'm 23 and in Nov 2009 I was diagnose with Familiar polyposis over 400 of them. Its been a long proses and in Feb 2010 I had my whole colon and part of my small intestine remove now I have a ostomy pouch. Its been hard getting use to it but thanks to GOD my husband and family have been very supportive. Not long ago I had to run to the emergency room. My intestine was twisted and with it came allot of complications. I had kidney failure and my longs started to get full of water but on top of that I created on top of a blood vessel and lost allot of blood which I had to have a blood transfusion. I been home for a week now after 15 days in the hospital and been getting this bad pains where I have the ostomy is. It worries me because the DR. said you are not suppose to have feeling in the stoma. Can someone please help me.
Tuesday, March 23rd 2010 - 07:32:45 PM
Your name: Barbara
E-mail address: hardhead131@yahoo.com
Country: USA
Comment or story: My sister is having a horrible time with her bag leaking and is at her wits end. She wears the Hollister Flextend one piece pre cut bag. I am so worried about her and the depression this is causing. Any suggestions you could give me to try and help her would be greatly appreciated. Thank you so much, Barbara
Friday, March 19th 2010 - 03:40:30 PM
Your name: Phil Esgate
E-mail address: philesgate@talktalk.net
Country: England UK
Comment or story: Firstly thanks for this open forum. I've had my Ileal Conduit Urostomy since Spetember 2007, Bladder Diversion. I've still got the remnants of my old bladder sat in my pelvic floor attached to my prostate (for what its worth). In December 2005 I went into Hospital in Wigan Lancashire UK to have a badly bleeding heamorrhoid operation after which I was catheterised due to urinary retention. During this act I was infected with MRSA. 21 months later and a lot of scratching of heads by incompetent urologists who admitted that they "didn't know what to do for the best", I was referred to a brilliant Urologist in Salford Royal Hospital, Manchester, UK, who took me under his wing and performed my Urostomy. Lawyers were reluctant to take the case of MRSA infection on as they said that the proof of exact causation was difficult, so I lost out on any claim. However more importantly my life was saved by an extremely efficient Urologist who I found through my own investigation in Manchester. He performed my Urostomy which has at least got me out of a wheelchair. I improved considerably over time and was able to return to work with limited duties. Unfortunately, over the last 6 months or so I have deteriorated quite a bit, in part due to a road traffic accident where the seat belt cut across my stoma, but also due to continuous infections of the two important unrelated areas in my abdomen. The first one being the remnants of my bladder, prostate and urethra. The second one being my kidneys, ureters, conduit and stoma. I have constant infections in both areas. Stinging pain and spasms in my urethra and aching in my kidneys and around my stoma. I have been given cefalexin, ciprofloxacin, co-amoxiclav, trimethoprim, amoxicillin, on a rotational basin for over 6 months now. None of them work. I use paracetamol and amitriptiline and occasionally tramadol for pain relief. The main problem with all of those is trying to stay awake, as you can imagine. I suffer from depression as a result and take citalopram 40mg per day for that too. Zopiclone to sleep with at night and because I have diverticular disease of the colon I take other medication too. I can't believe that from being a fit and healthy 45 year old, I am now a 51 year old disabled grumpy old man and can just about get around with a walking aid. I feel so sorry for my kids as they have to see me like this all the time. There is never any break from being poorly. Yes I know I'm lucky to be alive and thank God for that, but my quality of life has been taken away from me through no fault of my own. I suppose I'm bitter about the whole thing, but with these type of forums I am grateful to be able to unload some of my feelings. A problem shared and all that. We are a rare breed us Urostomates and I know, like me, many people with a urostomy think that they are the only one. I personally only know a couple of others and that was through Facebook. Thanks you for reading this and I wish you all many years of good health and happiness if that's possible. If anyone wants to email me, please feel free. Phil x
Tuesday, March 16th 2010 - 05:56:05 AM
Your name: Bob
E-mail address: bobandjudy5@verizon.net
Country: usa
Comment or story: I was recovering in the hospital from having my bladder, prostate and nodes removed on my 63d birthday. I've tries numerous pouches and have ended with a hollister i piece. I have found that the most important thing to do to prevent leaks is make sure the area around the stoma is dry. I use the paper towels that come off the rolls in half sheets and fold them three times and then roll it up so its about the size of 25 cent piece and put a rubber band around it. after I wash the area, I hold the rolled up towel on my stoma and use a small hand held battery operated fan to help the drying process. It is a kids toy, came with candy in the handle. when its dry, I use Smith and Nephew "skin-prep", #420400. I make sure I let that dry about a minute, using the fan. Sometimes it takes a couple of the towel rolls. I then use derma-rite skin prep/protectant #00237. Make sure that dries before puting on the pouch. Hopefully thats not when the stoma decides to spit. If it is, just dry it off and try the pouch again.I find that holding my hand on the pouch/stoma for a minute helps. Another problem I had was using precut stoma size pouches. My stoma is more oval than round and need to cut the holes. I hope this helps someone. I just had a loop o gram done and found that my stoma is leaking into my colon, and obviously leaking in reverse. Go see the Dr next week.
Thursday, February 25th 2010 - 02:31:37 PM
Your name: Sonja
E-mail address: pinkpanda54@hotmail.com
Country: usa
Comment or story: i have formed urine crystals around my stoma. ive had them for 6 months. they are so painful i cant get rid of them. ive done everything the dr and ostomy nurse has told me to do. ive tried the vinagar treatment ive changed pouches ive done it all. someone please help me.
Tuesday, February 23rd 2010 - 08:11:07 AM
Your name: V. Krier
E-mail address: mvrkrier@ncn.net
Country: usa
Comment or story: My husband 74yrs Was diagnosed with invasive bladder cancer 4-2009. Underwent 4 rounds of chemo then surgery 11-2009 with bladder lymph nodes and prostate removed. Has ileal-conduit. Presently getting radiation for 30 treatments. He uses the ConvaTec 2 piece system and so far is satisfied with it His night time drainage system is the JUG. It might be more convenient to use a night time drainage BAG. ConvaTec does not make that.
In your E mail you mention using a night drainage bag. If I may ask, what brand of night time drainage bag do you use? Also must one use the Universal hookups provided by ConvaTec?
The reasons we are looking to use a BAG not the JUG is because he is restless during the night and does not want to unhook or tote around the jug. Other reason being we must travel overnight for his follow up Dr. Appointments. It would be easier to pack and tote a bag. If you or any one has some advise or thoughts on this it would be appreciated. Thank you!
Monday, January 18th 2010 - 02:50:18 PM
Your name: Dee
E-mail address: alleycatmwife@hotmail.com
Country: Australia
Comment or story: I am a 41 year old. I have had my urostomy since Dec 2009. It is all new to me an my husband. We are learning so much its all mind boggling. Does anyone a easy way to cutting the base plates. If anybody would like to chat with me please get in touch
Thursday, January 7th 2010 - 12:29:52 AM
Your name: Jan
E-mail address: lar...@shaw.ca
Country: Canada
Comment or story: I don't know if I quite qualify for this site yet, because I don't have an ostomy - YET. I have Interstitial Cystitis and I have just given up living with the pain and the frequency. I have asked my Urologist to remove my bladder and he is reluctant saying we should keep trying with different procedures to treat the IC. I have just given up on anymore procedures because nothing works. I just need to hear some feedback from people who have had the surgery done because of IC. Unlike people with cancer who have to have the surgery, I have a choice and I don't know what to do. Can anyone out there please help me.
Sunday, November 15th 2009 - 05:27:05 PM
Your name: Dick Weems
E-mail address: dwee...@live.com
Country: usa
Comment or story: just wanted to let all know about a great new system ive found. its made by Cymed. its totally flexible and sometimes i forget i even have it on. no hard rings. wish the bag was larger and the tail a little bit longer, but after trying most products out there have really come to appreciate this one. hope this helps. tx
Friday, October 30th 2009 - 03:05:53 PM
Your name: Wiley
E-mail address: wile...@yahoo.com
Country: USA
Comment or story: I have urostomy since April 2001 been doing ok. but now have hernia and they don't seem to want to operate to fix it. said just watch it until emergency comes up. also have purple and red circle all around stoma no broken skin but does any one have any comment about this? I also wear a four inch wide hernia belt for the hernia the nurse doesn't seem to know what to do that would help the redness. I have tried powder and the wipe.
Tuesday, October 13th 2009 - 10:29:02 AM
Your name: Fran P - LV
E-mail address: fpop...@yahoo.com
Country: USA
Comment or story: I keept telling my Dr. all of 2007 that I felt something was not right. In late 2007, early 2008, I was having intermitant UTI's. GP kept giving me anti-biotics to treat, and it would come back. So another anti-biotic would be Rx'd. Finally New Years 2008 - I had 4 diff. Rx's and none helped. On the 4th one, I started bleeding. So of course, now the GP says - go see the urologist. I go to the 1st one. Get the X-rays - Find out by myself by a faxed HIPAA violation - to a dept fax machine that I have a bladder tumor, on top of them giving a copy of the report to my daughter, without my permission.

Of course when I found out, I broke down... went to GP, who Rx'd something for stress - yeah right - like that helped and charged me for a walk in visit!

Went back to 1st Uro's office to another physician because the one who had the x-rays done was out on vacation. He decided to do Cystoscope - of course I was uncomfortable and my system was not very cooperative. He repremanded me for that. Nice guy! Then he has the nerve to tell me he's doing my surgery - which I said to hubby on exit "NO WAY". This guy did not give me the warm fuzzy's and I wasn't that sure about him. So consulted some medical experts for the name of a urologist who would do right by me. The Dr called me 1/2 hr after I talked to the experts about my problem. Went to see him on a Thursday 12noonish - by 5pm I was in Same Day Surgery - I had a tumor that was 3Cm x 4 CM. He didn't even understand why the 1st one did the scope with the description of the size right in the Rad report.

One week later, I went back to the news that my tumor had invaded the bladder wall. The Dr. cried with me and my husband, but had already called UCLA since our town's Surgeons do not do urostomys often enough to do locally. Two days later I was in LA seeing the surgeon.

23 Days later - in for surgery - and THANK YOU GOD.... the cancer had not gotten to the other organs they'd taken to test. It had stayed within the bladder wall.

So now I go for my quarterly CT's and the option to live without Chemo and be here for the new gift from God - our Grandson - I'm extremely grateful! Life is different, but different is better than DEAD!
Wednesday, September 30th 2009 - 08:37:18 PM
Your name: Joe
E-mail address: ves...@telus.net
Country: Canada
Comment or story: Cancer was discovered in my right kidney and it was removed Jan. 2,2007. During the rest of the year it was found cancer cells had migrated downstream into my bladder and various treatments and scrapings failed to stop its spread.
Dec. 19, 2007 my bladder and prostate were removed and a pouch attached to my right side. The procedure is called a "urinary diversion via an ileal conduit" and uses a section of my small intestine to channel the urine into the external pouch.
Works excellently and I've never had a problem. A series of x-rays and a CT scan this past week show no sign whatever of cancer cells. Should be good for another six months or 6,000 miles!
Tuesday, September 22nd 2009 - 05:00:53 PM
Your name: Anne-Marie
E-mail address: maxwood@shaw.ca
Country: Canada
Comment or story: I was diagnosed with Intertistial Cystitis in 2002 and by that time my bladder was the size of a walnut. I had my urostomy surgery in 2003 and have had severe urine infections ever since then -- about every 6 weeks. I suffer with chronic pain on a daily basis and am on narcotics to help me through the day. There is no cure for IC therefore my days are often unbearable. I am 60 years old, retired because of my condition and suffer from depression. Is there someone out there who also have IC and had to have bladder removed because of this condition. My left kidney is functioning very low and now the right kidney is also affected. I wonder about my future!
Thursday, August 27th 2009 - 01:00:40 PM
Your name: Judy
E-mail address: jwjones45@yahoo.com
Country: USA
Comment or story: Nine years ago I had bladder cancer and had surgery to remove the bladder and had an internal bag made of part of my intestine. Thirteen days after my surgery I had emergency surgery to remove my spleen. I have been on diuretics since due to congestive heart failure. I was supposed to be able to self catheter but because of diuretics and number of times I needed to urinate I had to leave the catheter in. We assumed from my having to leave catheter in that was the reason for the uti's. This year my inner pouch started rejecting the catheters and had lost some elasticity so I am now using urostomy bags but still am having infections. I no sooner finish one round of antibiotics that I have to start over usually with a different antibiotic. I have several medical issues and would love to be able to at least fix this. I only have one operating kidney. Can anyone help or if they have gone thru something similar to please contact me. Thanks,
Thursday, July 16th 2009 - 03:42:04 PM
Your name: Amy
E-mail address: bubblybubble1@hotmail.co.uk
Country: uk
Comment or story: Hi,
I had my urostomy at the of 19, I'm now 26. I am disabled due to severe scarring, permanent infection (the antibiotics rarely work) and low function in my left kidney. I get severe pain daily and sometimes can't walk at all. I get blood and blood clots in my bag most days due to infection. I don't let it get me down it would just be interesting if anyone else experiences these problems. I am blessed with 2 children and have a great husband who is also my career.
Tuesday, June 9th 2009 - 04:04:17 PM
Your name: Fran
E-mail address: fransan1230@yahoo.com
Country: USA
Comment or story: Bladder Cancer: Was loosing blood in my urine. Family doctor sent me to a Urologist. Urologist said it was just from some irritation. Continued to lose quite a bit of blood in urine. Was sent to the hospital emergency to be checked on and was sent back to Urologist. Because we moved from one suburb to another, we asked about local Urologists. Wife said it was time to get someone else so we set up appointment with another Urologist nearby. The Urologist did one or two tests (he had no bedside manner) but he found the tumor right away that the other Urologist did not find (always good to get another opinion or two). After a few consultations and tests it was found the tumor in my bladder, which actually was growing outside my bladder, was malignant. Went through chemo and radiation (chemo was Cisplatin). Had some great doctors at the cancer center which was affiliated with the hospital. After several sessions with those treatments I had the surgery done. Took the bladder, nodes, prostrate and was set up with a stoma. The Urologist who did the surgery was really very good and was no nonsense. The outlook was not good for me. I did lose 40 lbs. and had to have injections to boost my red blood cell count including a few transfusions. It has been 5 years and I am doing great and so far, no other cancer has been found. I had faith in the beginning, but most of this is attitude and accepting this new way of life. The doctor said the stoma would become my good friend. I have adjusted well, play golf, keep busy, and really not distracted much by my situation. I have learned a number of things wearing the appliance, from the possible rashes to leaking. I go for checkups with the specialists and will do so for several years. I am thankful for just being able to get up each day and being with my family and enjoying any blessings that come my way.
Sunday, June 7th 2009 - 03:18:19 PM
Your name: val
E-mail address: valsmith4850@hotmail.co.uk
Country: England
Comment or story: Hi I had my urostomy on 2004 have had quite a few kidney infections recently saw my consultant this week and felt like I was dismissed as he says he will do another loop-a-gram and if that shows no blockage there is not much that can be done. Does this mean I'm going to have to be on antibiotics and pain killers from here on in? Has anyone else had these problems is there any solutions?
Wednesday, May 27th 2009 - 02:10:58 PM
Your name: Kenneth Sumners
E-mail address: kennethsumners@yahoo.com
Country: United States
Comment or story: I found out that I had bladder cancer in 2008 and had a urostomy. I had great people to talk to and have not had a lot of problems. I guess that I found what works for me and stuck with it. E mail me if you wish and we can exchange ideas about what does and does not work
Saturday, May 16th 2009 - 12:47:02 PM
Your name: Nicola Ramsay
E-mail address: nicolaramsay5@googlemail.com
Country: Wigtownshire, UK
Comment or story: hi there I'm a 37 year old female I've had a urostomy for over 31 years and in Oct 2006 i had my bladder removed due to a cancerous tumor, if anybody would like to chat with me please get in touch thanks
Friday, April 17th 2009 - 05:35:46 PM
Your name: Jack Bothwell
E-mail address: bothwellcamaro@gmail.com
Country: USA
Comment or story: I had bladder cancer in 1993 and had my urostomy surgery. I have been wearing pouches since that time and I believe that I have used most of what ever is is on the market and I had found that it was hard to find all of the different brands that were out there have been doing good with my present brand and the people there have been a great help to me. Its nice to feel secure when you decide to go out or go swimming I play a lot of golf in the summer and while most of the time I don't have any problems, like most they still come up but not like they had in the past. I hope every one out there can find the correct pouch for themselves as there are lots of vendors who will gladly send you samples so you can find the one that will work for you.
Sunday, April 5th 2009 - 06:45:05 PM
Your name: Dick Weems
E-mail address: dweems1@live.com
Country: usa
Comment or story: was diagnosed with bladder cancer 10/09 and had the bladder removed 11/09 with urostomy. have had no complications so far anyway. I use ConvaTec 2 piece system and get at least 1 week use out of each flange and bag. definitely use a night bag. what a relief. have used the same one 4 months now with no problems. the cancer was outside the bladder so prostate lymph nodes nerves and anything else the surgeon could see was removed. as a preventive measure have received 4 rounds of chemo. am truly blessed as have had very little side effects. am 63 years old and am doing fine. if i can be of help to anyone please feel free to contact me. may god bless.
Friday, March 27th 2009 - 12:01:03 PM
Your name: Helen
E-mail address: bubs_twin@yahoo.com
Country: USA
Comment or story: I have an ileostomy and an Urostomy. Am trying to find others that have problems still with their bladder/kidneys
Tuesday, March 24th 2009 - 11:54:21 AM
Your name: Tricia
E-mail address: triciaarr5@yahoo.com
Country: USA
Comment or story: I have had an ileo conduit since I ws 19 and I am 59 now. Sometimes I forget that I have it. I have had the normal leakages and everything else that go wrong, but basically I just learned to live with it. I had 5 children after the surgery in 14 years and am happily married for the last 27 years to a great man. I am a corporate nurse and have met patient's with a lot worse wrong with them, which makes me grateful. I have learned over the years and tried to teach my children that attitude is everything. Most people don't even know I have it and those that do like me anyway. I thought at 19 with this that my life was over, but I have lived a great life even with the ostomy. It never stopped me from doing anything at all and believe me I did a lot. I wish you all a great life.
Wednesday, February 18th 2009 - 07:43:40 PM
Your name: Laurie
E-mail address: Swtpchnga34@aol.com
Country: United States
Comment or story: I am 40 years old. Was born with Spina Bifida. At the age of 4 yrs. my kidneys started to fail and so they had to go in and remove my bladder and put in its place an ileo bladder. I have had many problems with infections and kidney stones over the years. Recently have had a lot trouble with infection and stones. After going through ct scans, a nuclear scan, and an ultra sound, the doctor has told me that my right kidney is only at 18% viability and at some point will stop functioning at all. He is hoping that medications will dissolve the stones, going back to him in 6 wks. Eventually, he said I would have to have the kidney removed. Very nervous and worried because I dont know what the outcome would be for someone in my case with no bladder then only having one kidney.
Saturday, February 7th 2009 - 04:15:09 PM
Your name: Cheryl
E-mail address: jeffersc23@yahoo.com
Country: USA
Comment or story: Hi,
I have had a urostomy for 16yrs due to interstitial cystitis. Had a hysterectomy then and have been on HRT since. In October of 08 I had a mild stroke at the age of 55. Since the stroke I was taken off HRT. Since then have had the feeling that I have to urinate constantly and burning in vaginal area. Just wondered if anyone else that is post menopausal and not on hormone therapy has these symptoms. If so what to do to relieve them.
Wednesday, February 4th 2009 - 01:30:42 PM
Your name: Pamela Mann
E-mail address: pmannrn@yahoo.com
Country: USA
Comment or story: Aug of 2007 my mother was diagnosed with bladder cancer. Nov of 2007 she underwent bladder removal with ileo conduit. We were told by the oncologist that without 4-6 more months of chemo there would be a 60% chance of cancer reocurrance. The surgery went well and without any complications. She was weak after the surgery but within 4 weeks we started chemo again and after the 2nd dose she was incredibly weak and getting weaker. She had no appetite for anything. She would lie in bed and sleep. After about two weeks of this the oncologist put her in the hospital, ran all kinds of tests and decided that there was nothing that should be keeping her from getting better. At the time of being admitted to the hospital she was also very confused and not eating at all. That was 9 days ago. She is better but far from well. No one seems to be able to tell me the cause. Now she barely eats is more lucid but still can't move much she is still so weak. I am trying to figure out what is the cause and what I can do to help her. She is 67 years old with a lot of life yet to live. I am trying to research ileo conduits after bladder cancer and need help for resources. I don't know who to turn to the Urologist/ Surgeon only seems interested in his handy work "the surgery" and seems fine. We did a CT scan and all looks well. She was dehydrated and bacteria did show up in her urine. The oncologist said he isn't convinced it was a UTI. He says there will always be bacteria in the urine because it has been rerouted through the colon. He did put her on an antibiotic and they still have her own IV amino acids for nutrition and we are starting some physical therapy. There seems to be so much urine. Much more than what is considered normal by the nurses. I am wondering if it is normal for an ileo conduit. I need help.
Sunday, February 1st 2009 - 12:18:47 PM
Your name: Roslyn
E-mail address:
Country: Australia
Comment or story:
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
Thursday, November 6th 2008 - 12:38:43 PM
Your name: Diane
E-mail address:
Country: New Zealand
Comment or story:
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
Sunday, October 26th 2008 - 12:38:43 PM
Your name: Sue
E-mail address:
Country: USA
Comment or story:
I have a ureter ostomy, and am wondering if anyone takes a maintenance antibiotic.
Sunday, October 26th 2008 - 12:38:43 PM
Your name: Derek
E-mail address:
Country: Wales, UK
Comment or story:
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
Monday, October 13th 2008 - 12:38:43 PM
Your name: DeeDee
E-mail address:
Country: USA
Comment or story:
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..
Monday, October 13th 2008 - 12:38:43 PM
Your name: Cheryl
E-mail address:
Country: USA
Comment or story:
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.
Monday, October 13th 2008 - 12:38:43 PM
Your name: Garry
E-mail address:
Country: USA
Comment or story:
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
Monday, October 13th 2008 - 12:38:43 PM
Your name: Laurie
E-mail address:
Country: USA
Comment or story:
    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
Tuesday, May 20th 2008 - 12:38:43 PM
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.
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