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  • Is This Normal???


    Hi everyone,
    I need some urgent advice, I have been unable to contact my continence nurse and the urologist on call isn't answering the phone.
    I have been in a huge amount of pain since I had my bladder removed 5 months ago.
    I still go to the toilet 20-30 times a day too.
    I have a Mitrofanoff, and internal pouch made from bowel.
    Just noticed a bit of the Mitro is poking out of my belly button, it has been bleeding a lot latley and has been leaking quite a bit too.
    It also hurts to cath.Is there a serious problem here?
    I am so worried about this and cannot contact my surgeon or his team.
    I went to my local hospital and they said they can't help me because I had my op done in LONDON and not in KENT where I live.
    This is so silly, it was my local hospital who referred me to LONDON in the first place.
    Please can anyone who has had the same op advise me ?
    I have been in tear's over this.

    Thankyou
    I have had IC and PBS for 20+ years.
    Tried every medication I can think off.
    Had a Clam Cystoplasty with Mitrofanoff in November 2006.
    Had a Total Cystectomy, with a neobladder, Urethradectomy and Mitrofanoff review, also had a peristomal hernia repaired.
    4th october 2007.

    Check out my profile on www.myspace.com/surreychick.
    if you want to know more about me.

  • #2
    Mums I don't understand why the hospital still can not help you to figure out if something major is wrong or not or if you have an infection or something. I don't know what to tell you but I know when Judith or Kara see this thread they will able to tell you what is going on or maybe able to give you good advice. I hope they see this soon.

    I am so sorry I can't help you but I do want you to know I do care and hope this will get resolve soon.

    Sending hugs, Trishann

    Comment


    • #3
      Hi Mum,
      Here I am. First off, I ma ondering why you are cathing so often. When you first got the pouch did they set you with a schedule to follow? When was the last time you talked to the surgeon or the nurse? Is there a home care nurse that may possibly be of help? Did someone come to the house after you came home? If so call them! I have a feeling that it is the stoma that is coming out and not the internal pouch itself. The other question I have is where is the pain located? It is not unusual to continue to have some pain even 5 month aftwerwards. It really takes a good year for body to totally get back to normal. As for seeing blood, that is also normal as the bowel that they use has blood vessles close to the surface and it can bleed very easily,especially when you cath yourself. When it comes to bleeding as long as it stops fairly quickly I would not be concerned,but if the bleeding does not stop and it is a lot of blood, then you do need to seen right away. You may need to use more lubricant when you cath to help with the pain and bleeding. Ask your doctor if a prescription for lidocaine gel to use on the catheter as a lubricant might help. I wish you lived across the pond, then I could talk to you on the phone! As for the local hospital not knowing how to deal with it, that is why they sent you to London to get it done, they do not do that there, so therefore they do not have knowledge about it. I knowq how frustrating it can be- that is how it was for me! It is 2 hours away from where I had my surgery done to where I live., I was lucky though in that I ended up training my local doctors and nurses about my pouch so that now they know what to do when I go in. My doctor took it upon himself to learn about it from my surgeon. Hopefully by now the on call doctor has finally answered his phone! My knowledge of geography about England is terrible so this is probably a stupid question, but how far is Kent from Nottingham? The reason I ask is because I know 2 there with urostomies. Please do let me know what happens. Judith

      Comment


      • #4
        Hi Ladie's,
        I still have not been able to get a reply from the Dr, so I have left another answerphone message for him to contact me, I suspect he is in theatre or something.I last saw him last week.
        I had a nurse come to see me for 10 day's when I came home, but do not have one here anymore, my continence nurse is in London.However, I did call the nurse who used to come to me, and she has looked at the mitro and has said that it may be too short and may need further surgery to make it longer.
        The pain is in the bladder itself and the mitro.Sometime's I have pain in my back too.OOPS!! My phone is ringing, be right back.
        That was my surgeon on the phone, he said that they may redo the cystectomy,
        or the other option is that they could take out the urethra and cut the nerve's and or move the mitro to a more suitable area.
        He has made me a appointment for a Video cystogramme for next week and a appointment to see him tomorrow morning.
        He said this is far from good new's !! He said that only a few people have these problem's and he will do what he can to help me, I will need more surgery, he just does' not know which he will do yet??
        He said I have to ask my DR for stronger pain killers, and to use more gel when I cath, like Judith said to, he said that sometimes cathing can catch on the mitro and cause bleeding.He will have a scan done of my mitro.
        He is not happy with my local hospital at all and said he will be speaking to the director today about their lack of support.
        And he said he will send some info to my surgery about my op and aftercare too.
        I won't know what will be done for a few weeks, but really do appreciate everything you have all done for me
        Meanwhile I have to get plenty of rest and not do anything at all, Doctor's order's.
        A nurse will visit me evry other day from today until I have the scan's done.
        Last edited by mum43; 04-16-2007, 05:49 AM.
        I have had IC and PBS for 20+ years.
        Tried every medication I can think off.
        Had a Clam Cystoplasty with Mitrofanoff in November 2006.
        Had a Total Cystectomy, with a neobladder, Urethradectomy and Mitrofanoff review, also had a peristomal hernia repaired.
        4th october 2007.

        Check out my profile on www.myspace.com/surreychick.
        if you want to know more about me.

        Comment


        • #5
          Sorry Judith, I forgot to add, that I do not have a clue where Nottingham is.
          To be honest I can't travel anywhere other than London and Kent.
          Also, my surgeon said that the reason I have to cath so often is because my urethra is sensitive and my bladder is over active, so this is triggering off a nerve which is telling me that I need to pee.
          He told me to cath as often as I can because mucus builds up and won't come out urethrally.
          I have to do wash out's everyday until I see him again.
          He said he will put this right, and that I am one of the unlucky few who do end up needing corrective surgery after a bladder removal.

          all the best

          jill xx
          Last edited by mum43; 04-16-2007, 02:15 AM.
          I have had IC and PBS for 20+ years.
          Tried every medication I can think off.
          Had a Clam Cystoplasty with Mitrofanoff in November 2006.
          Had a Total Cystectomy, with a neobladder, Urethradectomy and Mitrofanoff review, also had a peristomal hernia repaired.
          4th october 2007.

          Check out my profile on www.myspace.com/surreychick.
          if you want to know more about me.

          Comment


          • #6
            Jill, I am glad he FINALLY called you back! While it is not good that you need more surgery, at least he will take care of it! I do hope he will take out your urethra and cut the nerves along with any other surgery he does, because from my experience in talking to people this seems to be a big help. I also hope that the surgery happens very soon so you can begin to feel better. What good news that a nurse will be seing you every other day and also that teh surgeon is going to follow up wiht your local hospital and set them straight. You should not have to travel to London every time you have a problem if it can be taken care of locally. I have a good friend in Nottingham that I thought if it was close enough maybe you speak by phone or she could go visit you, so you would have some closer to you to give you support if you were interested in that. Anyway- I am keeping you in my thoughts. Lots of hugs, Judith

            Comment


            • #7
              Jill I am so happy for you that you finally will be getting help. I am glad that your surgeon is going to talk with your local hospital about things, I think it was a disgrace that they never try to help you more or even try to get someone that can.
              That is great that a nurse will visit you until you see the doctor. I am deeply sorry that you will have to go through surgery again but I am hoping this will straighten things out and you can begin to feel better.

              Sending many hugs and hope you start feeling better,
              Hugs, Trishann

              Comment


              • #8
                I am so sorry to hear that you are having problems and that you will need another surgery. I agree with the others....it is terrible that your local Drs and hospitals have not been more helpful. I am so glad that your surgeon called you back and has a plan. I am also happy to know that he plans on calling the Director to try to get you some help locally and that a nurse will be visiting you to help too. Thank God that help is coming!

                Hang in there, it wont be much longer now! I hope that this surgery will bring you the relief you have been needing desparately. Hopefully, it will be over with soon and you will be able to go out and enjoy your summer without pain and urgency.

                Sending hugs,
                Amy

                Comment


                • #9
                  I had to have a revision done in May of my Origianl Neobladder. They did this to take out my urethra and build an Indiana Pouch. The only trouble is that I still feel like I have to pee often because they did not cut the nerves that supply the urethral area. I have something called Pudendal Nerve Entrapment which can make you feel like you have to pee even when everything has been removed. The Pudendal Nerve Supplies the urethral area also. There are a lot of nerves down there that I had no idea would contribute to urgency. I hope your cystogram offers your surgeron a look at where to go next.

                  Kara
                  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:
                  http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

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

                  Comment


                  • #10
                    Jill just thinking about you. Hope you are doing alittle better today. I hope the nurse is able to help you out alot and find ways to get some comfort.

                    Sending hugs, Trishann

                    Comment


                    • #11
                      good news !!!

                      Hi everyone,
                      First of all I want to say a big thankyou for all the help you have given me.
                      I am privilaged to have you all to talk to.
                      I had to go to London twice this week, I went on tuesday then was asked to go for tests yesterday.
                      A superpubic catheter was put in again because of the mitofanoff blocking up with mucus, the nurse washed my bladder out but it still blocked up again and bled quite a bit.
                      So we done a urine culture test too, I will get the results in the morning.
                      GOOD NEWS !! I just have to tell you, my Neobladder is working fine,:woohoo: The problem is my Mitrofanoff is too short and will be made longer and wider, and the Urethra and nerves are being removed.
                      I still have to have the Video gram done next thursday, then I will be seeing my surgeon the following tuesday for the results and will be given a date for the surgery to take place.
                      This means that I DON'T need another Cystectomy
                      I am so pleased about that, I was so scared at the thought of going through all of this again.This is a huge relief to myself and my family.
                      My surgeon said that he will just do the above ops and hopefully I will not need any further ops.
                      But he also said that no-one knows how things will go in the future, and that if these ops fail then he will have to put a stoma in.
                      There is no reason why these ops won't work, infact he's pretty sure they will do the trick.
                      As for the local hospital,I have not heard any thing from them yet.I am still not getting the support I need from them or the continence nurse over here.
                      The nurse said she see's no point in coming out to see me when I am seeing the surgeon in London, and she said she prefer's not come and see me if I don't need her, the reply she got back was that if I don't need her then I won't call her.I thought she was very rude to me and have spoken to my GP about it.
                      I am very tired today, as like I said I have travelled to London twice this week and am sore and uncomfortable and can't sleep.
                      Does' anyone know if the removal of the Urethra and nerves, and the lenghening and widening of the Mitrofanoff is a big op? I mean is it a major op?
                      It's not been properly explained to me yet.
                      I would like to get some idea of how long I will be in hospital and what to expect.

                      All the best
                      love jill xxx
                      I have had IC and PBS for 20+ years.
                      Tried every medication I can think off.
                      Had a Clam Cystoplasty with Mitrofanoff in November 2006.
                      Had a Total Cystectomy, with a neobladder, Urethradectomy and Mitrofanoff review, also had a peristomal hernia repaired.
                      4th october 2007.

                      Check out my profile on www.myspace.com/surreychick.
                      if you want to know more about me.

                      Comment


                      • #12
                        Oh Jill I am so happy for you I can cry. I am so happy that your neobladder is working fine and you won't need to have other cystectomy. I know you and your family much be very relief to hear this good news.

                        I am happy that at least you are getting help with the doctor in London, and glad to hear that the doctor thinks it can be corrected. I am so sorry you have to go through all of this but it is a site of relief that it can be corrected.

                        I am so sorry that your local hospital have not been much help at all. Having to face people that is rude is so hard when you are dealing with so much. I hope your doctor will call this hospital and find out what is up with all of this.

                        Jill I truly hope the best for you, praying it will turn out fine.

                        Sending plenty of hugs, Trishann

                        Comment


                        • #13
                          Mum,
                          I dont think we have met, but I have been following your post.. I am so glad you know whats wrong now and the doctors can do something about it. You sound like a very brave and strong woman.. I will keep you in my prayers and hope eveything goes good for you...God Bless You!
                          Last edited by leelee88; 04-19-2007, 09:17 AM.
                          Hugs
                          Ronda

                          ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                          Link to Patient Handbook:
                          http://www.ic-network.com/handbook/

                          Diet Reference Sheet:
                          http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                          Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                          Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                          Meds I have Tried:
                          Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                          Lexapro< Bad reaction to this med!
                          Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                          Dx With IC in Nov 2006 with Hydro/Cysto
                          Hydro/Cysto Caused Bladder to Rupture.

                          Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                          ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                          Comment


                          • #14
                            Thankyou ladie's

                            Thankyou for your posts.
                            My husband is pleased about the bladder working ok, but not too pleased about the fact I need further surgery.
                            He worrie's too much about me and is a little over protective at time's.
                            I have told him that he need's to give me a bit of thinking time to my self, so I can get my head around all of this.
                            The way I look at it is that if I need this done, then I will have it done.
                            I still have a huge amount of pain amongst the other problems and these issue's need to be sorted out don't they?
                            My surgeon said once I have had the video gram done of my bladder activity, then he can arrange a date for me to go in to hospital and have this done.


                            all the everyone

                            love jill xxx
                            I have had IC and PBS for 20+ years.
                            Tried every medication I can think off.
                            Had a Clam Cystoplasty with Mitrofanoff in November 2006.
                            Had a Total Cystectomy, with a neobladder, Urethradectomy and Mitrofanoff review, also had a peristomal hernia repaired.
                            4th october 2007.

                            Check out my profile on www.myspace.com/surreychick.
                            if you want to know more about me.

                            Comment


                            • #15
                              Jill,

                              My Revision was 9.5 hours. I had a my urethra removed (urethrectomy) and my Neobladder turned into an Indiana Pouch. I was in ICU for 2 days and in the hospital for a week. Your Surgeon will have a better idea of how long it will take for your operations. Having a full and thorough explanation of what surgeries he is performing will help you understand how your new bladder is supposed to work. I hope he answers your questions and concerns in a timely fashion.

                              Good Luck to You!

                              Kara
                              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:
                              http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

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

                              Comment

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