Latest Blog Article: Interstitial cystitis is more of an injury to the bladder
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  1. #1
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    Bladder bypass surgery

    I am 51 year old male with severe IC. Diagnosed 2 years ago. Have tried many cures, including Argonet,DMSO treatments,Elmaron,diet change and Herbs,accupunture,nerve stem, a total failure, having leads removed from my nerves in 2 days. My health has been in study decline, severe pain many days. My next step in treatment has been recomended to have bladder bypass surgery. This is a BIG a somewhat scary step. I have been given several options to consider from having a bag to making another bladder out of my large intestines. I am now considering one of these options to be done very soon. My question is, who out there in IC land has had this procedure done or is thinking of having it done, and what your experciences have been. Any input would be very helpful.

    Thanks, Carl

  2. #2
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    Bladder BYPASS SURGERY

    Hi Carl, my Name is Larry I first had a SUPRA PUBIC TUBE INSERTION FOR NEUROGENIC BLADDER ,THEN I had MITRO STOMA ,that is were a tube goes from my belly button through my appedix and into my Bladder and I have to catheter myself from my bellybutton and it goes into my Bladder ,My DR. told me there is a valve inside my bladder and the only way it would have any urine come out is when the catheter ,how wrong he was ,my Bladder has spasms and leaks out my bellbutton all the time 2-4 times a day . Now I'm only 49 and have to do this the rest of my life , and I told the Dr. I can't live like this , that operation was a 5 hour operation ,and a 12 day stay at the hospital , so now we have tried 4 or 5 medications to try to stop the spasms with no luck. I've had 7 back operations and all the nerve damage is my problem ,it's cuasing my bladder not to work right, I have a spinal stimulator which helps with my lower back pain , then this DR. tried a Bladder stimulator with no luck after a 2 week trial period then they removed that both operations for that were 2 1/2 hours long . So now the Dr. said the next step would be a Bladder Bypass, and i too am trying to find out more about this ,the Dr. told me it was a very long and serious operation , longer than that mitro stoma operation was. But I got hurt in 1985 , a convayor fell on me at work since then I've had 22 operations and right now I'm on 14 medications ,but I can't live my life like it is now so I will have that operation no matter what the chances are . My Dr. is at the Lahey Clinic Hospital in Burlington MA. and that hospital is one of the best in the country ,so Carl Kepp in touch you can EMAIL me at LBUSH47@YAHOO.COM and we can keep in touch I have some other information for you so send me a email Bye for now LBUSH49 Oh ya Carl I also had 15 BOTOX injections and that didn't work either
    Last edited by LBUSH49; 01-21-2006 at 06:30 AM.

  3. #3
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    Hi Carl, I had my bladder out 19 years ago, and am very glad it is gone. I intially had the ileal conduit- whre you wear an external pouch, but then had it converted to an internal one 13 years ago and love it. I am 49. I would be happy to answer any questions you may have. Judith

  4. #4
    Guest emilyrose197377's Avatar
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    Lb i also have neurogenic bladder I had to self cath 4 x a day. But since I had the interstim surgery I can urinate on my own . I don't have to cath anymore.

  5. #5
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    Hi Carl! I just had to read your post because I have an uncle named Carl Marshall! I have heard that when they try to recreate a bladder with intestines that the IC comes back. I hope someone else can give you more info on it because that's all I know. I really wish you the best with whatever you decide.

    Larry, your story breaks my heart. I really feel for you. My bladder spasms don't seem so bad now. I'm so sorry.

    Hang in there, guys!
    ,
    Karma



    Dream with the feathers of angels stuffed beneath your head - Clutch

    IC, PFD, IBS, Fibromyalgia, MPS, Migraines, Allergies, Scoliosis, Bi-polar, Vulvodynia......

  6. #6
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    Larry,

    Have you studied the neurogenic bladder problems from the stand point of diabetes? A lot of diabetic patients get neurogenic bladder from autonomic neuropathy. Early in the game, I thought that might be my problems and I went to a few reknown autonomic neuropathy docs. Have you guys heard of Dr. Shlomo Raz, M.D. at UCLA. He is a brilliant doctor and although he is listed as a felmale urologist he sees male patients. http://www.healthcare.ucla.edu/insti...sonnel_id=8055
    I saw him in 2001 and he was right about my correct. diagnosis long before others. He has been know to respond to e-mails and he is doing very interesting research on IC/pelvic pain

    Carl, have your tried physcial therapy? If not I have been all over the country to some of the best. Sometimes they can even help those who have had invasive procedures that didn't work. If you are interested please private male me.

    Sorry you guys are suffering so bad. I hope you find an answer for relief soon.

    ads
    (sorry female)
    Last edited by ads; 01-21-2006 at 06:19 PM.

  7. #7
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    Carl, my name is Carlin (Carly), and I had my bladder removed Nov. 1. I have the external bag. It was a long operation and a long recovery, but I am glad I did it. I would not recommend the surgery where they make a neo-bladder that you have to cath. I had a lot of urethra pain, so that was not an option for me. They took my bladder, ovaries, and urethra. Good luck, if you have any questions, please email me at carlinjo@yahoo.com Take care!
    carly

  8. #8
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    Larry,
    I currently see Dr. Raz, he is phenomenal man and doctor. Please PM me if you need any info--I am having an Indiana pouch done in February.

    HUgs,
    Barb
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  9. #9
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    Unhappy

    Quote Originally Posted by Carl Marshall
    I am 51 year old male with severe IC. Diagnosed 2 years ago. Have tried many cures, including Argonet,DMSO treatments,Elmaron,diet change and Herbs,accupunture,nerve stem, a total failure, having leads removed from my nerves in 2 days. My health has been in study decline, severe pain many days. My next step in treatment has been recomended to have bladder bypass surgery. This is a BIG a somewhat scary step. I have been given several options to consider from having a bag to making another bladder out of my large intestines. I am now considering one of these options to be done very soon. My question is, who out there in IC land has had this procedure done or is thinking of having it done, and what your experciences have been. Any input would be very helpful.

    Thanks, Carl
    oh man oh man oh man.
    i don't know what to say.
    i also have it severe but my doctor is afraid to do any surgeries on me because of how young i am.
    that gave me anxiety just reading it [but nowadays anything gives me anxiety].
    PLEASE tell me how this goes later on step-by-step.
    this way i know if its something i might want to go ahead and try.
    I have been battling IC since I was 5 years of age. I was finally officially diagnosed with IC when I was 17 years of age. I am currently attend East Tennessee State University in order to become an Epidemiologist. I would love to assist with finding the cure for this painful disease.

  10. #10
    ICN Member ICLori's Avatar
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    Just wanted to wish you luck. I was on my way to bladder removal (like you, none of the traditional treatments worked for me, and my doctors recommended bladder removal for me because of my severe IC symptoms, chronic untreated pain, and severe scarring of the bladder with reduced capacity under anesthesia.)

    I was a bit afraid of the idea of surgery, though. There were two very experimental treatments I read about - small studies had been done on them that looked very promising, although you really can't tell much from a small study. Still, I thought, why not try these - if they don't work, I can always go on with the bladder removal.

    The studies I gave my doctor were about Cyclosporine-A and Cytotec. If you use the search function (at the top of the board, you can click on it) and type in "prostaglandins" it will bring up about a hundred or so posts on Cytotec. If you search for Cyclosporin and Cyclosporine-A (it was misspelled in some posts) you can read about that, and studies done on that.

    My doctor let me try the cytotec and I'm so glad he did, I'm in remission now. The study that was done showed it was effective for 87% of the IC'ers with severe IC who could tolerate it. The studies on Cyclosporine-A show an even greater remission rate (somewhere in the 90% range or higher.)

    My doctor had never heard of these studies before, but there are some doctors who are using Cyclosporine-A for IC (it's commonly used to treat Crohn's, and some researchers feel IC is kind of like Crohn's of the bladder I guess.) Not sure how many doctors are prescribing Cytotec for IC. It's commonly used to help stomach ulcers, so it's being prescribed for that, but it's not usually prescribed for IC.

    Anyway, I was lucky that my doctor was willing to let me try the Cytotec, and even the Cyclosporine-A if the Cytotec had failed, because he agreed the studies looked very promising and it was worth a shot. He felt that the bladder removal was a fairly major surgery and not reversible once done. So he agreed that we should try everything humanly possible first before resorting to the surgery.

    There's nothing wrong with bladder removal surgery - every IC'er I've heard about who had it done said they would do it again in a heartbeat, that it was much easier than living with the constant pain and symptoms of IC - but I thought I would tell my story just so that you can read about those treatments if you are interested.

    Blessings,
    Lori

  11. #11
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    Bladder ByPass

    This DR. I'm seeing now at the Lahey clinic says I don't have I.C. he says I have a NEUROGENIC bLADDER from all the back operations (7) and it has caused servre nerve damage and that is why my Bladder is not functioningly right ,I've tried every thing and I'm going crazy tring to get this matter fixed , he really doesn't want to do a Bladder BYPASS but we are running out of options and to top it off I can't get rid of this infection E COLI I've been on levaquin 500 mg but I can tell when I cath , I can tell by the smell , I'm beginning to wonder if I need IV antibiotics I see him monday the #rd in stead of FEB. the 23rd ,bbut he thinks all my back operations is what has caused my problems ,one DR. said I have I.C. but this is the 4th DR. and 3 of them said I don't I'm at the endof my nerves right now , not knowing what to do , this Dr. came highly recomended by a couple of DR.'s including my primary DR. so I am cathing now 8-10 times a day it's getting to the point I don't want to drink because I am leaking out of my Stoma which is in my Bellybutton , and I am really frustrated at this point my Mitro stoma operation was a 5 hour operation and right now I wish I never had it done thanks for listening LBUSH47@yahoo.com

  12. #12
    Guest emilyrose197377's Avatar
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    I am so sorry for what you are going through. I know what it is like to self cath and get uti after uti from it. If you need to talk I am here . I also have neurogenic bladder and have Ic also. my neurogenic bladder is controlled with the interstim I can urinate on my own. But I still have pain from my ic. Again if you need to talk I am here. emily197377. yahoo.com.

    Ic Meds: Detrol la, elavil, atarax,pyruiduim, marshmallow root and lortab, lidocaine gel.

  13. #13
    ICN Member Silverfox's Avatar
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    Hi Carl, Larry, Judith, Emily, Karma, Ads, Carly, Barb, Ashley, Lori, and all,

    Great thread, I do want to add on that another metabolic disease called Hypothyroidism can cause neurological damage to the peripheral sensory nerves in the bladder, urethra and that general area. These are some of the distal nerves in the body. Some other distal nerve damage is in the hands and feet. Hypothyroidism does cause a really big list of related problems and conditions, and no two patients are exactly the same. The treatment for hypothyroidism is to take daily a dose of thyroid hormones, of which there are several to try. Important, If one thyroid med. does not help, it's good to try other types of thyroid hormones.

    Hypothyroidism has been called the "pretender disease". For some it can be tricky to diagnose, and for me it was over 35 years in finding the cause. My Drs. have told me that I have some nerve damage throughout my entire body (peripheral nerves are those outside the brain and spinal cord, I have both autonomic and sensory nerve damage) and because I went so many years without treatment they cannot tell me how much nerve recovery is possible for me. I do know someone close to me that was a milder case of shorter time, and with treatment they recovered fully without any further bladder symptoms. Several in my family also have hypothyroidism and we have four females who suffer with the same bladder symptoms.

    Throughout the years, I did search nationwide and across the ocean to find the underlying cause. I also endured many painful expensive treatments only to learn that I was afflicted with a simple, common and safe to treat thyroid disease. Today some think this disease is epidemic and goes untreated, because about 1973 they ceased to train Drs. in how to recognize signs and symptoms of hypothyroid disease. Today, millions suffer with undiagnosed and undertreated hypothyroidism. For some hard to explain reasons, the current blood tests do fail to diagnose and many like myself fall through the cracks.

    My current urologist, recently admitted to me that he knows nothing about thyroid disease. At least I now understand why I was never able to receive any help from all those top Drs. I saw. Patients need to take part in their own healthcare and remember Drs. do not know it all. I do think they all need to be trained to recognized the common disease of hypothyroidism, as thyroid does affect all cells, and tissues in the body.

    Anyone that might want information on thyroid can look at these good sites that might help somebody else out there.

    www.tpa-uk.org.uk
    www.thyroideducation.com
    www.thyroid.about.com
    www.armourthyroid.com

    I AM VERY SORRY THAT YOU ALL HAVE SUFFERED, I WILL PRAY THAT THE DRS. ARE ABLE TO HELP ALL OF YOU

    Thanks to all for the excellent information here, Sheila

  14. #14
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    Red face

    Quote Originally Posted by ICLori
    Just wanted to wish you luck. I was on my way to bladder removal (like you, none of the traditional treatments worked for me, and my doctors recommended bladder removal for me because of my severe IC symptoms, chronic untreated pain, and severe scarring of the bladder with reduced capacity under anesthesia.)

    I was a bit afraid of the idea of surgery, though. There were two very experimental treatments I read about - small studies had been done on them that looked very promising, although you really can't tell much from a small study. Still, I thought, why not try these - if they don't work, I can always go on with the bladder removal.

    The studies I gave my doctor were about Cyclosporine-A and Cytotec. If you use the search function (at the top of the board, you can click on it) and type in "prostaglandins" it will bring up about a hundred or so posts on Cytotec. If you search for Cyclosporin and Cyclosporine-A (it was misspelled in some posts) you can read about that, and studies done on that.

    My doctor let me try the cytotec and I'm so glad he did, I'm in remission now. The study that was done showed it was effective for 87% of the IC'ers with severe IC who could tolerate it. The studies on Cyclosporine-A show an even greater remission rate (somewhere in the 90% range or higher.)

    My doctor had never heard of these studies before, but there are some doctors who are using Cyclosporine-A for IC (it's commonly used to treat Crohn's, and some researchers feel IC is kind of like Crohn's of the bladder I guess.) Not sure how many doctors are prescribing Cytotec for IC. It's commonly used to help stomach ulcers, so it's being prescribed for that, but it's not usually prescribed for IC.

    Anyway, I was lucky that my doctor was willing to let me try the Cytotec, and even the Cyclosporine-A if the Cytotec had failed, because he agreed the studies looked very promising and it was worth a shot. He felt that the bladder removal was a fairly major surgery and not reversible once done. So he agreed that we should try everything humanly possible first before resorting to the surgery.

    There's nothing wrong with bladder removal surgery - every IC'er I've heard about who had it done said they would do it again in a heartbeat, that it was much easier than living with the constant pain and symptoms of IC - but I thought I would tell my story just so that you can read about those treatments if you are interested.

    Blessings,
    Lori
    i will definitely research all of that and bring it up to my doctor.
    i want to avoid bladder removal.
    i just feel that i am too young to have to have something so serious happen to me like having something removed.
    the thought makes my heart race.
    thanks for all of the information though. :]
    I have been battling IC since I was 5 years of age. I was finally officially diagnosed with IC when I was 17 years of age. I am currently attend East Tennessee State University in order to become an Epidemiologist. I would love to assist with finding the cure for this painful disease.

  15. #15
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    Bladder BYPASS

    My Dr. that I am seeing now says I don't have I.C. that I have a NEUROGENIC BLADDER they did the MITRO stoma operation where I have to put a CATHETER inside my belly button and that goes trough my stoma (that goes from my bellybutton through my appendix and into my Bladder) but my problem is I get these Bladder spasms that make me leak urine out of my bellybutton I wish I never had this operation but he's tried 4 different medications 15 BOTOX injections a BLADDER STIMULATOR for a trial that he ended up removing ,my problem is I have a oversized Bladder and all the nerve damage doesn't tell my brain thatis is full and when I did go before the operation my Bladder didn't empty all the way and I was getting alot of U.T.I.'s ,like right now I have a bladder infection E-COLI and I've been on LEAQUIN 500 MG and it's not helpingbut the first DR. I went to said I had I.C. but the next 3 said I didn't so now I'm looking at some type of BLADDER BYPASS operation I'LL find out more on MONDAY the 30th when I go see my DR. but my problem really isn't goiny to much it's leaking through my STOMA

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