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Click here to post your Urostomy Story
| 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 |
| 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? |
| 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. |
| 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 |
| 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! |
| 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. |
| 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. |
| 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 |
| 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 |
| 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. |
| 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. |
| 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! |
| 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 |
| 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. |
| 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 |
| 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. |
| 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! |
| 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! |
| 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! |
| 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, |
| 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. |
| 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. |
| 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? |
| 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 |
| 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 |
| 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. |
| 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. |
| 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 |
| 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. |
| 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. |
| 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. |
| 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. |
| Your name: | Roslyn |
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| Country: | Australia |
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