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  • #16
    Jill, when I had my ileal conudit, the opening/stoma closed off, so I had to go get it revised. They ended up pulling it up and out and making it larger. I forget how long the surgery took, but I was in the hospital for about week- ten days. It was a long time ago- about 17 years and I do not really remember. I did not have to be in the ICU. We are all different, and each surgery is different so really it is best to get your surgeon's opinion as to how long you will be in. As far as it being a major op, again, I think, ask your surgeon if he considers it to be one. I am very pleased to hear how quickly they are trying to get this done for you. Let us know what the culture shows- in a way I hope that it is positve because if it is and you go on antibiotics, then maybe you will feel a bit better. Take care, hugs, Judith

    Comment


    • #17
      Hey Jill your husband sounds like a very caring person. My husband would respond the same way. I know how you feel like you have alot to sort out and that really is so understandable. I am so sorry you are still in alot of pain. I wish they could speed of the process and give you something that can help with this issue.

      I can understand your husband being upset about you having to have a second surgery now, but I thank God they can do something for you.

      My thoughts and prayers are with you,
      Sending hugs, Trishann

      Comment


      • #18
        Thankyou ladies

        Hi Kara, Judith and Trishann,
        Thankyou for your replies, my surgeon said this morning that the culture results are not in yet and he will call me when he has them.
        I asked him if this op is classed as major and he said yes it is, but it is not as major as the cystectomy.
        He said not to forget that I had a hysterectomy too, and that was major on it's own.
        Hopefully I will come out of this one without all the problems I had with the last one.
        I am being treated for reflux and heartburn, It Is driving me crazy and is causing me worry, because I had a stomach ulcer which burst in theatre and nearly lost me my life.
        My husband is a wonderful man and has put up with a lot while I have been having tests etc, and the poor love has to go through it all again bless him.
        He said this morning that he could not bare to be without me in his life and would be in theatre if they would allow it, so he could make sure I am ok.
        He said if he could have this op for me he would.It upsets him a lot to see me like this after going through so much.
        I knew I had picked the right man to spend my life with when I was 15 yrs old, and 29 yrs on we are still together and as strong as ever.
        My surgeon will go through everything about the op and the possibilties of any thing else being done on the 2nd may.
        I really do not want the stoma on the outside unless I have to when all else fails.
        My surgeon said it is not on the cards but may have to be a option in the future.
        Who knows he might have another solution to my problem yet.
        I wish I could give you all a great big hug for being so wonderful to me.
        It feel like I know you all so well.
        You are like sister's to me.
        Hugs all round

        thankyou
        love Jill xxx
        Last edited by mum43; 04-20-2007, 02:45 AM. Reason: spelling mistakes
        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


        • #19
          Hey Jill I definitely can understand about the husband being nervous. When my doctor talked about bladder removal and we did research on it my husband was so worry. He is afraid of losing me to because once he almost did. I know he is just heartbroken about all of it and hoping a miracle or something else would come up. My bladder is severe damage and nothing can be done. My doctor told me eventually the bladder will not hold nothing, at this point it is very little. Through all the things I can't do and all the soreness and pain I go through he is still madly in love with me. I wish I could take his pain away too. He is so afraid and sometimes I am too but sometimes I am not, I just want to feel better.

          You are really blessed that your husband loves you so much and he cares. I think this is all worthy fighting for to get better. My husband and I prayed for you last night and we will continuing to do so. I hope this surgery is the beginning to have a full recovery. I know because all the ? it can become mind bothering, but I know you need something done and I thank God your doctor will do his best to make that possible.

          That is good your doctor is giving your something for the reflux and the heartburn. That is very painful also, the medicine should help you. It does me and in between if I start getting bad I take rolaid or something which helps calm it down. Some of the medicine suppose to help with the stomach too.


          Sending many hugs, Trishann

          Comment


          • #20
            Hi Trishann,
            Thankyou to you both for your kind thoughts and the prayers, I could do with this right now.
            I am very unwell at the moment, and have to go to London again in a couple
            of days.
            I nearly died twice, once in theatre during the op.
            The other time was when the terroist's bombed London, I was on that bus that went up.July 7th 2005, I was with my heavily pregnant daughter, so it would have been three of us.
            The reason we never died was because we got off at the stop before so I could look at a handbag in a shop window up the road from the stop.
            This is why my husband is so very nervous, he said that all bad things come in three's.
            He's also nervous about the op, because he think's so negative all the time.
            I never though of thing's this way before, but now he has got me thinking.
            I am going to get cabs from the train station to the hopital in the future and the same coming back too.
            I am very lucky to be here and ill not be giving up on life just yet!!

            Take care.
            I hope you are well.
            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


            • #21
              Wow, Jill! You really have been thru alot! No wonder your poor husband is so nervous! I hate that you have been thru so much and more than that, I hate that you are still going thru so much.

              I wish I knew how to help or what to say, but unfortunately, I dont. But, I do want you to know that I am thinking of you and wishing you well.

              Hugs,
              Amy

              Comment


              • #22
                Hugs Amy!!

                Aww Amy,
                That's ok you are here for me, you all are.
                I'll be ok, just a little worried about some family problem's we are having at the moment.
                The prospect of having another major op is a little scary.
                My husband and I talk all the time about the treatment, and just said that maybe the Surgeon will come up with another way of solving my over active bladder and urethra problem.
                Who know's he may be right!!
                I am so pleased that I have you guy's over the water to talk to, I think I would go a bit crazy if I didn't.
                I hope you and your family are well and We send our Hugs back to you :angel

                Take care HUGS xxxx jill xxxx
                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


                • #23
                  Hi Jill, I am so sorry you are not feeling to well today. You do know that saying is just a old wise tale. My mother-in-law always said it to but it don't make it true. I am hoping too that these doctors can make things easier on you and something can be done. I know it can get very discouraging but hang in there, and let us know what your doctor said.

                  Jill you escape death twice ,and if things comes in three, doesn't it mean that you will escape it again. Now that is a positive thing. I know it must have been horrifing for you to go through this awlful situation but you are here today, you are alive.

                  I haven't been feeling well also. Not for sure what is going on and hoping it will pass but if not, yep back to the doctor and hoping that he can figure it out.

                  I sure do hope you are feeling alittle better.
                  Sending hugs, Trishann

                  Comment


                  • #24
                    How are you feeling?

                    Hi Trishann
                    Sorry I never replied sooner, had to go to London for tests.
                    It looks very much like the urethra and mitrofanoff are the min causes of my problems.
                    I am seeing my surgeon next week to find out what will be done to put this right.
                    Anyway, are you feeling better today?
                    I have a niggly tummy ache and my IBS is flaring up again.

                    Take care
                    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


                    • #25
                      Jill I am glad they were able to figure it out what was going on. Hopefully now they can help you and make things more comfortable for you.

                      As for me, I thought maybe I was trying to get alittle better with the body aches and low behold I fell yesterday. As long as I am moving around it is not that bad but when I sit or sleep I get so stiff it is so painful. I was doing this before the fall and the fall just added to it. I have my moments where I think I am getting better if I quit tripping over things and falling.

                      I hope you hear some good news at your next appointment. The waiting is so hard.

                      Sending hugs, Trishann

                      Comment


                      • #26
                        Oh my !! you must be in a lot of pain!!

                        Trishann !!! are you ok?
                        I'm doing fine right now, just a little tired still from yesterday.The morphine certainly helps right now !!
                        I hope you are getting some rest.I saw the surgeon yesterday and had a video cystogram done, which has concluded that the mitrofanoff is too short and needs to be made longer.
                        It confirmed that the neo bladder is working ok and that the urethra and urethral nerves are causing the main problems.
                        So I think they will come out.I have said that I do not want the urostomy bag, unless I have to have it.
                        Which ever happens I am having another big op.
                        I had a problem getting there yesterday, there was a chemical fire near the train station so the train was diverted, and this made my journey 1 + longer.
                        It was all over the BBC news, but I had already boarded the train so I didn't know until it was too late !!
                        I had to walk right to the end of the very long train to use the toilet, so I could cath, the other one was blocked.
                        It was a long day.
                        I have to go back to London next weds to find out what is going to be done for sure.
                        And hopefully get a date for the surgery too !!
                        My surgeon said he does' not want to re-do the bladder removal unless he has to and would prefer to make his decision after he has spoken to the rest of his team.

                        Take it easy ok !!
                        Thankyou for thinking of me thats really nice to know someone is.

                        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


                        • #27
                          Oh Jill I am so sorry to hear about your day. I can't even imagine how bad that day was for you, it must have been horrible. I would have been totally exhausted too. I hope you was able to relax after you came home.
                          That is good that the neo bladder is working right, hopefully another bladder removal won't be necessary. I hope when they solve the urethra and nerve problems, you will start doing better.

                          Jill, I know this is still a very big op. I would be scared too, but hopefully it will improve your health better. I wish there was another way for you to get to London. Hopefully your next appointment the traveling will be better, sure do hope so.

                          Just sending hugs, Trishann

                          Comment


                          • #28
                            Hugs !!!

                            Trishann,
                            I did manage to get some rest thankyou!!!
                            But early hours this morning, my cat had 4 kittens so I was keeping a close eye on things for a while.
                            The continence nurse telephoned me to ask how I am today.
                            That was really good of her to be thinking about me on a saturday.
                            She said there is no reason why this second op won't work for me, and if it does' fail then the surgeon will try another way of sorting everything out.
                            We do own a car, but it costs a lot of money to get there and we have to pay a charge to drive through london, and ontop of it all we have to pay loads for parking too.
                            So the journey costs us around £65 in the end, whilst on the train it only costs £22.
                            Thankyou for thinking about me!!

                            Lots of hugs Jill xx
                            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


                            • #29
                              Jill, I am so glad you got some rest. I can't believe the difference in the amount of cost for you to get to the doctors. I can understand why you don't want to take the car, but that stinks that you have to make that choice.

                              It is good to hear that the doctors and other thinks they can help you, praying that they can.

                              Having little kitten, they are so cute when they are little. Hope you enjoy them.

                              Sending hugs, Trishann

                              Comment


                              • #30
                                Hi YA !!!

                                Hi Trishann,
                                Thankyou for being here for me hun!! How are you feeling today?
                                The journey to London can take up to 3+ hours so you can be sure I will need the toilet at some stage during the trip.
                                In London we are not allowed to just pull over and park just anywhere, if we did we would get clamped.
                                So I have several reasons to go by train.
                                My continence nurse said that she understands where I'm coming from and would do the same herself.
                                My surgeon is not too pleased about it , but aid it's ok if I wear my medic alert pendant.
                                I wear it all the time and carry a card.
                                I'm having trouble getting the dressings I need from my Doctor, she only gives me 25 at a time, I use most of them in 1 day.
                                I will have to ask my surgeon to fax my Doctor and tell her I need more of them.
                                They are very costly to buy.
                                The kittens are doing well sleeping and eating and being washed non-stop by their mum. she fusss all the time and is eating all the cat food.
                                I'm hoping that the surgeon will think of somethin else instead of surgery, I don't suppose he will but I can sit here and hope can't I?

                                Take care 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

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