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Melodie is stoned
Hi all, Just another bump in the road… :)
Went in for routine surveillance CTscan….no word back yet on my labs but via the scan all looks good except for a small stone resting in my dear bladder which needs to be removed…doctor said I could wait 2 or 3 months but we don’t want it to grow too big…what fun! The doc tells me that drinking some lemon juice daily (the real stuff) should help out in that area and that 30% of BC patients get stones. I asked the doctor if it could just be left alone and he said, no, they can cause infections. He tells me it’s only a 45 minute procedure once I’m asleep. Rosebud isn’t thrilled about anyone but me messin’ with her but she’ll adjust to the idea…she’s a good girl. ;) Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright19 Replies-
Dear Melodie,
Thanks for your positive attitude and humour and good luck with your op for the stone removal…
Thinking of you….
Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum
And be sure to ask if they’ll save the stone….put it on a necklace, and you can have a reallyexpensive piece of jewelry!
Stephany in Iowa
Yes, in the beginning I tried the “granny” pants…and never could get used to them. I was using sanitary pads at that time but never tried the Pose product. I still wear bikini undies but the ones that are fuller in coverage and then usually a T-shirt that I can tuck down inside my pants which also helps hold my dressing in place. I use those wonderful stoma dressings made in Finland because I am too alergic to any other kind of adhesive. Those dressings are a bit pricey but are also very absorbant, like baby diapers are. Sometimes it isn’t a matter that the bladder is full but that the mucus irritates the stoma enough to get my attention so that if I just replace the dressing with a clean one, things calm down and I can go back to whatever I was doing. I am hoping I can learn something that I can change in my diet so I won’t continue to produce stones. I have faith that my doctor can do a good job in that area but I don’t want to repeat the procedure. :)
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightI really don’t have a problem with any leakage but i also have a latex allergy and even the non-latex tapes bother my skin…..I know people who have a lower stoma (mine is at the navel) who use a poise pad stuck to their underwear over the stoma but that doesn’t work for me unless i wear granny pants!!
Pat
Thanks for explaining that, and it worked fine for me, no leakage problems or repercussions from the surgery, to tell you the truth I think my pouch leaked less because I think the stones irritated it a bit. On another note, I have found that the Poise pads for people with incontinence are amazing if one is worried about leakage. I just discovered them and sometimes if I know I am going to be at a place where I will not have easy washroom access I use them. I buy the most absorbent poise pad they have and then cut the pads in 3 and then use that white medical tape in the 2 inch or bigger size to tape them over the stoma and to tape it onto my skin so it does not leak out below, and if I have had a leak and just press the pad it soaks it up perfectly and also has an odour absorber in the pad and it works like a charm. It has been fabulous for me, I just discovered them and I had tried regular sanitary pads a few times but they did not work, but these are amazing, not that I leak all the time but sometimes with my job I am out with clients for 3 or 4 hours and there is not easy washroom access and I don’t want to feel nervous. Also in the car on car trips since I find sitting for long periods of time can kind of squish the bladder and that can cause a leak. So if you are ever worried about a leak try the poise pads with the white tape over them and you will see how great they are.
Yep you’re right Melodie…one is thru the stoma .. the other through the skin…..
This study was done to determine whether minimally invasive endourologic management of calculi in continent reservoirs can be done effectively without compromise of urinary continence. Four patients with continent urinary diversions (1 Indiana pouch and 3 Kock pouches) were managed with trans-stomal pouchoscopic ultrasonic lithotripsy (n = 2), prone position extracorporeal shock wave lithotripsy (n = 1), or a “sandwich” combination of these (n = 1) for stone burdens up to 20 cm2. Total hospital stay ranged from one to four (mean = 2.6) days. All 4 patients were initially rendered stone free, and, with follow-up as long as twenty-five months, only 1 has had a recurrence. No patient experienced stomal leakage or other complications. This study suggests that minimally invasive endourologic management of calculi in continent urinary reservoirs can be done safely and effectively to obviate the need for more invasive percutaneous approaches or open surgery, even for some patients with large stone burdens.
So thats one study…i have a feeling it might depend on where and who you go to?
Heres one with the percutaneous surgical approach…
http://cat.inist.fr/?aModele=afficheN&cpsidt=4887008
Not that that makes it any clearer..doh…….i’m guessing that its probably a good idea to keep using the saline solution no matter how far out of surgery you are..I’m definately guilty of not doing that. Two CT scans ago they saw urinary calculi building up on the staples…last CT scan no mention of it??? Here we go again…Pat
I think trans stomal means they use a catheter and go in thru the stoma whereas if the stones are too large,(my doctor thinks 2 cm is large, mine are about 1 cm.) when too large they can’t go in via the stoma without damaging the stoma and so they then have to puncture the abdomen in another way to get at them….that is what I think, but since Pat put the info. on here, maybe she will simplify things for us. Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Trans-stomal management of calculi in the Indiana pouch is time consuming and may compromise the continence mechanism. A percutaneous surgical approach is therefore generally performed for removal of calculi in Indiana pouches
what does this mean trans stomal and percutaneous? just so I know for the future.
thanks
Hi Melodie
I had my RC and Indiana Pouch in July 2003 and have gone in for surgery 3 times to have stones removed from my pouch. It is literally a 10 minute procedure but they did put me out for it each time. The doctor left a catheter in and had me wear a leg bag for 24 hours as there was some blood and stuff and things are a bit swollen up when they mess around and he did not want me to be blocked up. He also put me on an antibiotic after each surgery as a precaution. The stones can also form around foreign bodies, my last ones were all clustered around a staple that was in the pouch. It was simple to have the surgery and get over it and I agree you want to have it done fairly soon because they do grow, my doctor had just removed one from another patient of his who had moved to our area and was referred to him, the patient had not been getting regular follow up and apparently his stone was humongous, the doctor was blown away by how big it was. They go in through the stoma and then according to him break it up in the pouch and then suck it out. You will do great, no worries.
Thanks for the responses….no, Rosebud doesn’t like the name “Bud” as she considers herself a primadonna of sorts…I’m always telling her she is the most beautiful stoma in the entire universe, so how can she bear the name of “Bud” with such a title of high esteem. Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Y’all are a RIOT! ;D
I never thought of naming mine, but did have fun telling people at our National Sales Meeting last year who complimented my dress that they should see the $100,000 bladder… it was an even better job of tailoring than the dress was.
It took me a little while to figure out that my “little buddy” has quite a strong opinion about spicy foods. Well, a little extra saline and more fluid intake seems to adjust his attitute.
Good luck with the stone, Melodie. You’ll have to let us know how that goes since according to the statistics, it seems pretty common.
Thanks so much for the laugh, too!
Christine
Christine Springfield
T3/G3 – Squamous Cell/Transitional Cell Carcinomas
RC w/Studer Pouch 4/25/07OH there ya go…i think i have it figured out…its a personal matter between your husband and Rosebud…….I’m sure she just does not appreciate “Bud” at all and this is her way of rebelling! :D
XXoo Pat
Patricia,
I feel very blessed to have the doctor I have…he actually was/is the assitant doctor to Dr. Lange who was the head of Urology at UW…Dr. Lange was the doctor I first saw about the surgery but he was always so busy and never had the time for the personal attention that I need plus he is past retirement age, so I opted to have Dr. Wright for my follow-up care.
Dr. Wright’s schedule is also always in a scrunch but he slows down enough for the more personal care…he is younger and wants compassion to be part of his relationship with patients. Anyway, Dr. Wright has all the qualities I seek in a good doctor, but when I was in last time, learned that he will be working in research for a year and so could only keep something like 15% of his patient load and will only be seeing patients on Tuesday. Anyway, I was on his list of patients to keep and I am very thankful. I think we both have things to learn from each other. :) And I think he feels the same way.
As for the lemon juice…well, my spouse is always telling me, “tell Bud to get over it”….so maybe I should try the warm water idea…I can handle oranges just fine. Maybe if I start with very tiny amounts and ease into it. Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightOK Melodie…its time to have a serious talk with Rosebud…explain that the lemon juice not only good for the bladder but really great for the liver and detoxifing it…drink it in warm water…maybe you can fake her out and make her think its tea?
I do understand however as Hal and I have certainly had our go-arounds especially on the subject of icecream….sorry Hal..but just get used to it!!…Stand your ground!!
Glad you got to see the actual scan and your doc so thorough in pointing it out…you have to realize that i encounter DRs. Curly , Larry and Moe around here so i have to be a bit more pro-active.
Hugs……..Pat
Dear Pat & Hal,
I don’t think I need a second opinion…my doctor showed me the CTscan and pointed out the various body parts and finally the bladder and the small white spot which he said was a stone…it was definitely something that I saw with my own eyes so unless they mixed up the scans, I have to trust the doctor knows what he is talking about. Of course I’m not anxious nor is Rosebud to have anyone messin’ with us, but if it has to be, it’s maybe better sooner while it’s still 1 centimeter in size.
I drank lemon juice, a small amount in water on both Saturday and Sunday as suggested by the doctor. Bad idea! Rosebud, that rascal, did not appreciate it, nor the bladder, and they responded by being literally “pissed off”. It has been quite awhile since I have had any leaking so I was surprised but I should have known better. Rosebud runs the show and I should know that by now. ::) Melodie
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