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    Hi everyone I have only been on this sight a few times. I have been reading the surgery notes and i would like people to tell me how surgery was for them the after effects. We all know the peliminary effects with IC. I have had IC for several years and have tried all the medications and none have worked. I read karas postings on what life is like for her. I do not have alot of pain yet but, i go about 60 to 75 times per day. Ive done the diet. doesn't work. I feel for all of us IC patients its a awful thing. My badder has shrunk down to 38cc and my kidneys are starting to take a major hit from not releasing enough and are backing up. My ur has talked to me about surgery for IC is now a health risk for me. They are afraid to extend again due to the fact that the bladder will collaps. My uretha is so scared from all the cathader treatments. i cannot handle that pain. My worry for all IC people. we keep trying all these medications for our bladders hoping this will be it this will work. I get so upset when i go through all the pain and discomfort and I am worse than when I started. In the process of these treatments our other organs kidneys, liver, heart are the ones to pay in the long run. I am not scared or worried about surgery I guess i look at it as my final cure. I have three boys that I dont want to keep seeing me sick. I want to live my life and enjoy the wonderful part of being a mother. I am sorry for draging on like this. I am thankful for this sight and have told my ur that I do not want augumentaion . I trust your oppions more than the doctors you have all lived it. Any information on recovery and different surgery opptions would help.

  • #2
    I don't have any suggestions for you, just wanted you to know that whatever you decide, we will be behind you 100%. I've found for myself that if I listen to that little voice inside of myself I'm usually okay. It's when I don't listen that I get into trouble......

    sending prayers and gentle hugs~
    Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


    • #3
      hijodii; i mean this in a nice way. i am glad that you are not in all that much pain,but your uretha is all scarred up.what you read in kara's story pretty much is the same for most of us with ic.she isgetting a surgery i am sure she will fill you in about.we are all behind her and i pray for herit all goes's almost like waiting for a baby ha!i had my bladder an my uretha removed a year and a half ago.first of all i am 49 yr. old so it didn't matter to me as far as having a bag.andthe other surgery(before anyone jumps me again please listen i said idid not want to cath. q 2hrs because i was talking about me,and yes i was going to have to] don't panic they imformed me it is longer.kara can fill you in sheis usually here every day. mine you will hear alot of women have infections,kidney is important you drinkalot of water but ive been clear for one and anhalf yr.and i drink some water but not 8 glasses i drink d/c soda tea also the one good thing about getting my bladder out is now i can drink or eat any thing. the pain to your dr about both surgeries.write down questions to ask.get a sec.oppion.i have to tellyou this ask your dr where yoir stoma that is where your bag in or out will be .i was inicu 3 days but was awake alert painfree that also could be just me.he made me stay untill they removed the nasalgastrol tube.i was up an walkinghalls my 4th day went home 7th day.almost every women ive talked to that has had my surgery including me had upset stomaches.i was on compazine but it didn.t help alo. when i went home i was was xmas my daugghter was home from the air force i haven't seen in 2 yrs so i wasn't drinking like i should and i always felt sick so i hardly was being a med tech should have known. i deh/ i was urinating pure blood,i lost 25 lb in15 days .so no matter, what you choose to do i just want to try to help you know what can happen .i hope the best for you.i am sure kara will be here some time.heres a welcome hug deedee
      dx'd i.c in 96,too many treatments and meds to remember before badder removed in 2000.pain returned..has since been on roller coster of narcs ad other things..3 suicial att..went into hosp to withdrawl from sooo many narcs and wt. got down to 85lbs....came out eating small amounts ad keeping them down..the only pain med was ultram 50mg q 6 hrs..and gabapintien sorry..can spell..600 mg q 6 2003..nowin 2006-ive had mesh pulled from myvaginal walls 3 timesso pain is severe again but also in rectum now..had to add hydro/app q 4 hrs.!!!but i still pray there is hope..i just need o find it.


      • #4
        ps jodi i feel like a dummy. thats ok alot of people like me that way.i re,readyour post after i sent mine in ans noticed where you said you told your uro you don't want an augumentaion.i am sorry i took up your time.i guess i am just too tired to be writting. deedee
        dx'd i.c in 96,too many treatments and meds to remember before badder removed in 2000.pain returned..has since been on roller coster of narcs ad other things..3 suicial att..went into hosp to withdrawl from sooo many narcs and wt. got down to 85lbs....came out eating small amounts ad keeping them down..the only pain med was ultram 50mg q 6 hrs..and gabapintien sorry..can spell..600 mg q 6 2003..nowin 2006-ive had mesh pulled from myvaginal walls 3 timesso pain is severe again but also in rectum now..had to add hydro/app q 4 hrs.!!!but i still pray there is hope..i just need o find it.


        • #5
          Hello everyone,
          Thanks for the information. I just wanted you to know i have had 3 oppions and am going in on the 20th of june for the fourth. That is if my bladder lets me for the fourth. the 3rd ur i met with did not belive IC even excisted (well i thought he was a quack) so that did not help. I am trying to make sure that i have covered all the bases with IC. I have read on the different surgerys and wanted input on what has worked best for others. I am trying to make the best dession for me. Yvonne if you read this i feel for you and have read your postings and wish it was not so bad for you. I just want you to know my heart goes out to you. Kara when are you going to have your surgery? Thank you all for the information i will fill you all in when i find out more.
          thanks again


          • #6
            HI Jodiii, I have had all the surgeries. I started off with a bladder aumentation, whixh did not work as the IC spread to the newly augmented section within an 8 month period. I then an ileal conduit done which I had for 6 and then 10 years ago I had it converted to a continent pouch. I am very happy with what I now have. I have a very tiny stoma which is located just above my pubic hair on the right side of my abdomen. I sleep through the night and during the day I cath myself betweeen 4-6 times. If you do decide to have that surgery,just be aware that in the beginning you will need to cath more frequently till the pouch is trained to hold increasing amounts of urine. I keep my stoma covered with gauze and tape. Please feel free to ask me any questions. Judith


            • #7
              Hi Jodiii,

              Thank-you for thinking of me, I read your post and hope I can help you just a bit. I had IC for many, many years before it was finally diagnosed, my symtoms started when I was a teenager. I had numerous urethral dilatations and was sent home to live with the pain. This carried on for many, many years of going to different doctors. FINALLY when I moved to Kelowna I got diagnosed BUT it was to late, my bladder was so diseased and shrunk BUT still had to go through all of the medications, installations, procedures-marcaine into the trigone of the bladder X 2, see a IC doctor in Vancouver who wanted me to have the ileo conduit but the doctor here wanted me to try the augmentation. Just being a patient and not having anyone to turn to I had it done. A MONTH later the new bladder rotted and I was retaining 1500 cc's of urine and had to catheterize every two hours. Nine months later I had the ileo conduit done, my main symtom was frequency and immense pain. WELL unfortunately I was one patient who the surgery didn't help and now the IC is in my urethra which wasn't taken out with the bladder. For me knowing all of this now I WOULD never have gone through all of this surgery, now I have surgery soon to get the urethra out. Please feel free to e-mail me if you want to discuss more as I am very experienced with the happenings of surgery for IC and maybe can offer a hint or two.

              Good-luck with all of your doctoring and decision-making. God Bless.


              • #8
                Hello again
                Thank you all for the information it has been a great deal of help. i meet with my ur on weds 24 to go over in more detail wich surgery is best for me. we have discussed that the time has come and we are trying to plan the best. yvonne and judith. please email me at [email protected] i do have some more questions for you if you dont mind. thanks again everyone for the advise. i will let you know what will be next. best wishes to all of you!


                • #9
                  Bladder Bypass Surgery

                  I am going to have a Bladder Bypass operation on May 26 th and , I was wondering how long is the operation ,I've heard it is 10 hours long ,but if anyone has had it please send me a email , and how long is the recovery period ? Please respond to [email protected] thank you all Larry


                  • #10
                    Hi Jodii...I had my bladder and urethra removed in Dec...I have absolutely NO I.C. pain, pressure, urgency, frequency...I have an internal pouch that I cath 6 - 7 times in a day. I have had some post op troubles but that pales in comparision with 40 years of I.C. ... Would I do the surgery again? ABSOLUTELY.....I have a life outside of the bladder doesn't run my life...I can eat and drink whatever I is no longer painful. I saw a wonderful urosurgeon in L.A...PM me if you would like more info.....Imustpee.....Lesa
                    After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!


                    • #11
                      Bladder Bypass Surgery

                      My name is Larry ,in May of 1985 , I got hurt at work when a convayor fell on me , since then I've had 7 back operations and a total of 22 operations different parts of my body 3 on my Bladder alone , one Dr. told me I had IC. I went for a 2nd and 3rd opinion and they both said I had a Neurogenic Bladder , so after many tests they put in a Supra Pubic tube they said I had a oversized Bladder all due to all the back operations , that damaged the nerves so my Bladder wouldn't empty all the way ,so then the DR. put in A mitro Stoma and I have had all kinds of problems with it leaking before I could cath ,they tried 4 different medications to stop the Bladder spasms , thats what the Dr. said was causing my leaking no luck ,then they tried 15 injections of BoTox again no luck ,then they put me on a 2 piece system made by ConvaTec to catch anything that leaked out nothing was leaking , but when I open the bag to cath before I could Cath I would leak all over the bathroom floor , so the DR. put in a balloon type catheter and that would fill up the bag and I would drain it ,but as the bag collected urine the area where the scars are would leak , back to square one ,they removed the supra Pubic tube ,andtried a bladder Stimulator for a 14 day trial , still leaking and getting U.T.I.'s everyother week this went on for months my Mitro Stoma was put in in Aug 2005 and everyother week I would have a U.T.I. , and was leaking 2x's a week , so now the DR. is going to do a Bladder Bypass operation using part of my intestines and using that to bypass my bladder ,I've heard this was about a 10 hour operation , I know the Mitro Stoma operation was 5 1/2 hpours long and I was in the hospital for 12 days , now I'm trying to find out how long this operation is and how long is the recovery period , the DR. tells me it varies from patient to patient and right now I take 16 different medications a day , I'm just trying to get a better quality of life ,I'm only 49 and most of the time now I have to hook up to a foley bag so I don't leak , but that makes me have to stay home all the time and it gets very depressing ,so if anyone out there can give me any information please send it to [email protected] thank you all ,Larry


                      • #12
                        Hi Larry, sorry things have not gotten better for you. Your doctor is right about how long it will take- it does vary from patient to patient. If he told you 10 hours then plan on it being at least that or maybe more. The length is not at important as the outcome. I am trying to understand what exactly you will be left with arter wards. Will you have an internal system that you catheterize or will you wearing an external pouch?


                        • #13
                          Larry Here's my story so far. It may help....

                          Larry and Jodiii ,

                          Maybe some of what I have just gone through could help answer some questions. My operation was 9.5 hours long but it all depends on the surgery, the anatomy of yourself, possibly your age and overall general health, and your surgeon. The healing time varies. My first bladder removal took about 6 months to recover from. This reconstruction that I just had, I was told could take 6 months to a year to heal. It's individual and varies depending on a lot of variables.

                          Kara Lynn
                          Last edited by Kara29; 05-18-2006, 10:40 AM.
                          Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                          "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                          I also have some journals of my journeys, past and some present at:

                          Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.


                          • #14
                            Bladder Bypass

                            I don't believe he's removing my Bladder but not quite sure and I believe I will have an external Bag I know when I had the Mitro Stoma , that operation was 5 1/2 hours and that took about 9 months to heal but I still have leaking problems that's why he 's doing this operation he's tried everything else and had no luck as far as my health not to good ,in the past I've had problems with blood clots , after a mylogram I shot a blood clot in each lung ,and after my 5 back operation I shot one down my left leg this operation will be my 23rd since I got hurt in 1985 ,and I take 16 medications a day so I think I will have a long and slow recovery and I'm only 49 ,but I just take one day at a time now so I will keep up at that pace , LBUSH


                            • #15
                              Jodi posted these questions back in 2002 and I dont know when she last was here or what happened with her.