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  • Judith56
    replied
    Jill, I know since you have the NIH things are different over there than they are from here. When it comes to dealing medical problems when the doctor screwed up what can they do for you and what if anything happens to the doctor who made the mistakes? Now it all makes sense why you are having all those problems! I know that initally I had most of my bladder removed, they just left the base of it in and rebuilt my bladder using intestine and hooked it all up to my urethra. They called it an augmentation cystoplasty and for me I never did get relief, I had to cath as I was in permanent retention. The IC then spread to the entire new section they made, so 8 months after having that big surgey I ended up getting everything taken out and was given an ileal conduit- where you wear and external pouch. As oon as everything was out I felt so much better, granted I needed to recover from the big surgery, but I think because all the IC affected areas were out of me I recovered fairly fast, relatively speaking. I truly believe as it seems your doctors do to that once all the areas are out of you that have been affected you will do so much better!. Do they have a date for you yet? Thank God they came clean about what happened so at least now you know it is not all in your head! Take care, hugs, Judith

    Trishann,
    I haven't ad a chance to go to the site, but I do know that because Jill is in the UK, they do not always do the same things there that they do here. Some of thier procedures are different, as well as some of the meds they use.

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  • Trishann
    replied
    Jill there is a long discussion about surgery on this particular site. I think maybe you might learn alot from it.

    Go to Search on the top of the page in the blue section, and click on search.
    Then type in "runnng out options". I know running was spelled wrong but that is how you have to type it in. It is a very long sections but it has alot of information about surgery and different kinds.

    I hope this can help you about what is going on and what to expected.

    Sending hugs, Trishann

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  • Trishann
    replied
    Jill before doctors thought leaving in the trigone in the bladder that connects the ureters inside would be a good thing but now some knows it is not. Some even thought that leaving in part of the bladder that looks good would be ok to stay in but again it is not.

    Jill I am so sorry this happen to you. Jill you can do this and start asking questions about it all. Don't just let them do the surgery but ask exactly what they will do. Now I am writing this Kara had a website about the different ones, if I can find it I will send it to you. I know there is somehow you can find it here but I am not for sure how. I will try and see.

    Sending hugs, Trishann

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  • mum43
    replied
    Christine!!
    The surgeon never told me anything about my op,in fact I have only seen him once for about 10 mins a few months ago, his unstudy saw me after the op and said that as far as he knew everything went well.I have not spoken to the surgeon at my visits I always get someone else.
    Once I had come round properley and woken up I spoke to another doctor who said I had a emergency hysterectomy also, but my ovaries had been left in and my cervix was a little shorter than before, not once did any of them mention the fact that they never done the op properly.
    I am glad my lady surgeon came back from maternity leave or I would still be in the dark.
    She showed me all the pictures from the op and the scans and explained it all.
    This figures why I have been so ill since last november.
    The part of the bladder he left in was the part that was supposed to come out.
    It has been causing me huge problems.
    At the meeting they are having tomorrow my lady surgeon is going to mention about the stress this has caused me and my family.
    Not to mention that the op that wasn't done before has got to be done anyway.

    hugs xxx

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  • GriffsMommy
    replied
    OMG Mum, I was completely shocked and disgusted while reading your latest post. I can not believe that you were told that your whole bladder would be removed and it wasn't. Did the dr who did the surgery actually tell you that your whole bladder was removed? If so that dr needs to be fired, sued and whatever else they can do to him. They can't do whatever they want and tell you they did what you requested. I am so sorry that you have to go through this. I hope your second surgery goes smoothly and you start to feel better soon

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  • mum43
    replied
    Hi ladie's !!


    Sorry I never replied sooner, I had some news I didn't want to hear yesterday.
    It turns out that the surgeon who did my op never did the job properley, and now I have to have it all redone because he did what he wanted to do and not what my lady surgeon asked him to do.
    She went on maternity leave and asked a college to do my op, he done a clam cysoplasty instead of a total cystectomy.
    He used half of my old disceased bladder and left it connected to the urethra,
    This is why I am having all of these problems.She told me that this has caused my bladder to be over active too.
    I am going back in for it to all come out and be redone and the urethra to be removed.
    Why was I not told I asked, she replied that she only went back to the hospital on monday and didn't know until she read my file and looked at the scan pics.
    I will be having Botox in my bladder first to settle done the spasms and help with the pain while I wait for a date for the big op.
    There is going to be a meeting tomorrow at the hospital to discuss my case, and my real surgeon will phone me and let me know what was discussed and what the plan of action is to be.
    I left the hospital in tears, I cannot believe that I was told I had all my bladder removed and it wasn't.
    I have been through all of the stress and pain etc for it all to be done again.
    My husband knew I would be having surgery but is shocked that the surgeon messed up and now another one has to put it all right.
    Back to square one it is then.
    Take care all xxx

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  • Trishann
    replied
    Judith, Debbie and Jill, just want to say Good morning and hope you all have a nice day.

    Sending hugs, Trishann

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  • Judith56
    replied
    Jill, thats good that you have joined a Mitrofanoff group in the UK, it is not as common here, so I am sure you will get some answers to some the issues you are having. It would be nice if one person on there lived close to you. I am not familiar with the type of dressing you are using- they do not have that here in the US. I mostly use 2x2 inch gauze squares and tape over mine. I just peel it half off when I cath and then I can restick it back on when I am done. Hope things went well at the doctors today! Judith

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  • DebbieD
    replied
    Jill a Bag is not bad. I have had a Bag since My first Bladder Removal 22 Years ago. Compared to what I was going through I wil Glady wear my mine with Pride..You are in my Prayers. Take Care.
    DebbieD

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  • Trishann
    replied
    Jill that is wonderful that you don't have to pay for your medical stuff. What a relief it is to know that you don't have to put out money for that too. I hope you do start feeling better and that you and the doctor can find a way to help with your bladder problems.

    Justing sending hugs, Trishann

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  • DebbieD
    replied
    Hey Mums Do me a favor Forse that Water like Crazy. The Mucos will stop up things.. Hope you Feel Better.

    Hugs

    Ileo-conduit-22 Years
    4 revisions
    Right Kidney removal
    Hysterectomy

    DebbieD

    Leave a comment:


  • mum43
    replied
    Hi ladie's !!

    Trishann,
    I have got used to all the travelling to and fro London.
    It's part of my life now and will alway's be.
    Sometime's I wish I could go to my local hospital for the follow up treatment, but that won't happen.
    I don't have to pay for my medical stuff, Because I am classed as incapacitated, it's paid for me so I don't need insurance.
    I am glad you are feeling better, make sure you rest ok.
    Judith !!
    I use Cosmopore E self adhering dressings.They are not very good so I put a cotton wool pad inside with it , I use them to remove makeup, so they are flat and square and fit perfectly.
    I am still cathing alot of times during the day and night.
    I am going to ask about some stronger pain relief, as the ones Iam on at the moment are not helping me much.
    I have also joined a Mitrofanoff website (uk) and chat to a lot of people who have had this op, and have been given advice of other things the surgeon can do instead of major surgery.
    It all depends on if I am a candidate for these procedures, we will find out in the morning.
    The kittens are so sweet, we have 3 chocolate colored tabbys (triplets) and 1 all black.
    We haven't checked to see what sex they are yet, best not to touch them for a while.

    I will let you now how it goes' in London tomorrow as soon as I can ok.

    hugs xxxx

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  • Trishann
    replied
    Hi Jill
    I don't know how you do it. It must be really hard to make this trip to the doctor's office. I hope whatever the doctor decide to do that he/she will do it.
    I get nervous just going on a trip wondering all those questions about can I do it, but it does help to be familiar with where I am going. It does put the mind at ease but still worry about it. I just wish there was an easier way for you but I do know you have to do what you got to do.

    It is a wonder how animals take care of their young. It's awesome just to sit and watch to see what they will do next.

    Jill, I am doing somewhat better. Better than what I have been doing. Thanks for asking, but I think I will be ok, just taking time to get there.

    I sure hope you have insurance but I do know the co-pay can be expensive too. I hope you can get those medical stuff you need soon.

    Jill just thinking about you and hoping thing will turn out well for you.
    Sending hugs, Trishann

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  • Judith56
    replied
    Hi Jill, sorry I have not responded more frequently. Congrats on the new kitties. What do they look like? I am curious what type of dressing you are using. Maybe this way I could understand better why you have to change it so often, though I do know you said that you are cathing many,many times a day. I hope this nightmare for you will be over soon. Judith

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  • mum43
    replied
    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

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