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  • Experienced w/ bladder stones and/or fistula ?

    Posted by Melodie on October 16, 2009 at 4:47 pm

    Fellor warriors – Lend me your ear! Maybe someone has experience in either stones or fistula and can help better educate me.

    I am scheduled for surgery just prior to Thanksgiving for stone removal…endoscopic. July 08 my doc spent 2.5 hours removing stones via my stoma…Oct. 08, another stone turned up and that one removed; now since last April, the 3 I had have tripled in size, to 1 cm. and a fourth one has joined the party. :angry: These guys won’t give up.

    So, of course I’m not anxious to go back in for surgery; suppose to be 2-3 hrs and an over night stay since they will be creating a new opening into the CUR.

    But, what if I didn’t have insurance…I would be like many others who probably have them but don’t know it or haven’t the funds to have them removed. So what happens if I leave them alone? Yes, they might get larger which would mean if they continued to grow, they would have to make a larger hole later on…maybe. But, they aren’t bothering me; like I have no symptoms except for some nasty food particles, debris, whatever we want to call it, that comes out the shoot when I empty. I know that no one really has the answers to my personal concerns but perhaps someone has some experience that I can benefit from in some way. ????

    Then, I have this fiscula, which complicates things. If I had not been a smarty pants and brought in the seeds to show the good doc, he most likely would not have even known about the posibility of a fiscula. Now that he knows, of course, he feels obligated to do something. So now I have to get another CT scan and wait for his comments. :S

    So, has anyone had a similiar fiscula? I wonder if this is something that can be ignored for awhile? It is not a problem to me except for the fact that it may be the reason I continue to produce stones???? If I ever produced stones when I had my God given bladder, I never was aware of it and I think I would have been.

    I guess the idea of going back into surgery again and the not knowing what might happen in regard to thihs fistula has my mind going off in all kinds of directions. I’m not scared but very perplexed and frustrated. My doc told me to try a low residue diet (simply awful) no fruits, veggies, etc….which I love so much and if this keeps up, I won’t be having regular bowel activity. :( Plus, my bladder seems to be off kilter; there is certainly much less debris but my dear Rosebud, my stoma, is bleeding all the time now. :huh:

    Well, I’ve been on the new diet only a week; probably lost a few lbs. which is good for me but I’m starving. I’m going to have a salad for lunch today and that’s that! Signed: Frustrated and Hungry in Seattle :side:


    Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
    Melodie replied 15 years, 3 months ago 7 Members · 17 Replies
  • 17 Replies
  • melodie's avatar

    melodie

    Member
    November 2, 2009 at 1:51 am

    Pat,

    I’ll be just fine. It must be a very small hole if they couldn’t get a good photo of it, and I’ve had no infection of any kind. And I’m trying again to get Ms. Rosebud adjusted to fresh lemon in her daily diet. I took one of the stones that I had saved (from last surgery) and placed it in a container with lemon juice and sure enough, that little rascal totally disintergrated. :) So I think the lemons will really help if I can just get this lovely urinary system to adapt.

    My doctor says there is alot of debate in regard to the subject of fistulas…and he would tend to take a conservative approach and do nothing as long as I’m not having any problems.
    We can’t expect them to fix or repair something they can’t even get a good photo on…and maybe I’ll get lucky and it will repair itself. Thanks for your concern. Right now, I just want you to focus on yourself, and get to SK. Hugs,


    Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
  • 's avatar

    Guest
    October 30, 2009 at 11:46 pm

    uuuuuuuuuuh……..MELODIE…what about the fistula? Is he going to wait until it just gets larger so he can find it or you can get a massive infection from your intestines emptying into your pouch? I’m in search of a doctor for you and you will go.
    :woohoo: Pat

  • melodie's avatar

    melodie

    Member
    October 30, 2009 at 6:29 pm

    Mike,

    Well, I didn’t show him my stoma…he probably would have thought I was reaching for a gun. Just this week we had an officer shoot a drunk in the back, 8 times, for no good reason. The officer with him, couldn’t believe it. Besides which, Rosebud, is very particular about who she allows to view her. I’m sure if I had started talking to him about an Indy pouch, he would have been clueless…probably would not have believed there is such a thing as BC.

    Anyway…good news in regard to the stone surgery. The stone expert, who was to partner with my doctor, is gone all Thanksgiving week….hence, no surgery now on schedule for me. My doctor told me that when I was ready, to let him know.
    :laugh: Well, I’m thinking that will be a good while. If they predict I will continue to produce stones, I would much rather go in every other year and have larger stones removed, than to have it done every year, removing smaller ones. ;)


    Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
  • mmc's avatar

    mmc

    Member
    October 29, 2009 at 1:30 am

    I don’t know…. If I was a cop (which I’m not) and pulled somebody over for speeding and they showed me the ileal conduit bag, I’d have to say something along the lines of: “I guess you get a double ticket, since you obviously don’t have an urgent need to go to the bathroom! It’s going in the bag.” :D

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • 's avatar

    Guest
    October 28, 2009 at 5:32 pm

    Good luck with your surgery Melodie! I’m so glad you have not been troubled with infections through all of this.

    Betsy Mae

  • InTransition's avatar

    InTransition

    Member
    October 28, 2009 at 5:13 pm

    Seriously, though, Melodie, I am sorry you have hit this rough patch. You’ll have my healing thoughts directed toward you between now and your post surgery.


    Diagnosed Stage 3 March 09.
    RC August 09 at MD Anderson, TX
    Ileal Conduit (Bag Lady)
    Age 52
  • InTransition's avatar

    InTransition

    Member
    October 28, 2009 at 5:05 pm

    Here is one situation where an ilial conduit beats the Indiana pouch! Exposing my bag (especially on a ten week post surgery belly) would have been a MUCH more effective visual. :D


    Diagnosed Stage 3 March 09.
    RC August 09 at MD Anderson, TX
    Ileal Conduit (Bag Lady)
    Age 52
  • 's avatar

    Guest
    October 28, 2009 at 3:38 am

    Melodie…you should have whipped out your catheter and explained that Rosebud was about to burst and it was a medical emergency. At any rate you could certainly put on a show for the Judge. I’d love to be a fly on the wall for that!!:laugh:
    Pat

  • melodie's avatar

    melodie

    Member
    October 28, 2009 at 2:54 am

    Just to make my life more interesting, the poor bladder was distressed following the contrast, etc. and so I was focused on finding a private location to pull off the road to check out the situation….when lo and behold, one of our finest ? pulled me over and presented me with a speeding ticket…said I was going 45 in a 35 zone…back country road with no homes and a straight away…Since I was focused on the bladder I may have been going over the limit as I wasn’t looking at the speedometer.

    Oh joy! He didn’t ask me a question and didn’t want to hear anything I had to say. So looks like I will be going to court to contest it. I have never been given a ticket and so felt like I could have been given a warning. Of course this ticket has nothing to do with the fact that the local police department has over-run their budget for the year and needs cash. They are banking on the fact that most people will just mail in the money rather than take time off from work to appea. Not me. I’ve watched enough Judge Judy and I’m going in prepared. After all, I am a warrior! :angry:


    Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
  • julie's avatar

    julie

    Member
    October 27, 2009 at 3:52 am

    Surgery two days before Thanksgiving, you definitely don’t want to be providing the holiday meal. I hope your feeling well enough to have some turkey and trimmings.

    I can just imagine the words you had with the radiology especially since you checked first. I hope you never have to have this procedure again. Heres to no more surprises from your pouch. (((Hugs))) Julie


    Volunteer Coordinator
    ABLSC
  • mmc's avatar

    mmc

    Member
    October 26, 2009 at 7:39 pm

    My guess would be that they don’t tell anyone about the back door contrast because nobody was showing up for their appointments. :)

    It certainly sounds like surgical correction is necessary if a muffin can make it’s way into your IP!

    Hope they get this fixed for you quickly. I didn’t realize one could even get a fistula from this type of surgery until I read your comments before.

    Best of luck for a speedy recovery and no more mystery bits in your pouch!:S

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • melodie's avatar

    melodie

    Member
    October 26, 2009 at 6:17 pm

    OK gang…for anyone interested….thought I would provide an update. Last Thursday I went back for another scan – FUN! FUN! FUN!…not really! They wanted to contrast the bladder, the colon and rectum. Well, I purposely called and asked the radiology folks exactly how this would happen as I don’t like surprises…at least not medical ones. They told me it would be the ordinary drink the magic potion, wait an hour and get zapped, etc. They did NOT tell me they would also put a gallon of contrast up where the sun don’t shine. :( Well, I gave the technicians an ear full cause I expected to be there only 90 mins. and was there 3 hours.

    Prior to getting the scan, I had stopped by my doctor’s office with a “Trick or Treat” bag of chocolates treats for my doctor and staff. I just left it with the receptionist and went on to get the scan. After the scan, I would say I’m the one who got the “tricks” :S

    Anyway, the scan doesn’t give us much more than we knew before in regard to the fistula…just as I figured. The only reason I went thru with it was because a week or so ago, I had a chocolate muffin for B’fast; 7 hours later when I emptied, you would have thought someone had taken a handful of black potting soil and tossed it in the toilet. There lay the remains of my muffin. :silly:

    So, that episode did make me more curious about exactly what is going on. Anyway, the good doc wants to do surgery on 11/24 with overnight stay at hospital…so that gives me an easy way to duck out from having to prep the holiday mean. :) There has to be a blessing in this somewhere!


    Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
  • melodie's avatar

    melodie

    Member
    October 19, 2009 at 5:51 pm

    Dear Pat,

    Thanks, as always, for looking out for me. I am forwarding this article to my doctor. It doesn’t look particularly good for me, does it? Sounds like I will need to stay on a low residue diet. You would think that at least I could lose weight but that isn’t happening so far. :angry:

    And what a great time to think about a special diet…just before the holidays. Oh, well, if I go in for the stone removal just prior to Thanksgiving, someone else will have to do the turkey. :)


    Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
  • sandymc's avatar

    sandymc

    Member
    October 17, 2009 at 1:50 pm

    Hi, Melodie! I’m afraid I really have no words of wisdom here either but just wanted to wish you a very successful surgery and a speedy recovery! It would be wonderful if they could just take care of what is obviously an ongoing problem.

    Take good care!
    Sandy

  • leigh's avatar

    leigh

    Member
    October 17, 2009 at 9:43 am

    Dear Melodie,

    I have no experience with fistula’s…but wanted to say that I hope this is quickly resolved for you.

    I did have a stone that luckily broke down itself. I remember my Urologist saying that they need to come out asap. As larger stones require more invasive surgery.

    I agree with Mike…the fistula may be producing the stones on this rapid scale….Of course I am no doctor.

    Good luck is being sent your way…

    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
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