Is This Normal???

[mum43]

:hmm: :help:
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.:toilet:
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:headbang:

[Trishann]

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

[Judith56]

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

[mum43]

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.

[mum43]

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

[Judith56]

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

[Trishann]

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

[ihurttoo]

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

[Kara29]

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

[Trishann]

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

[mum43]

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:pray:
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:grouphug: :flower: :grouphug:

[Trishann]

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

[leelee88]

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!:angel:

[mum43]

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:smile tee

[Kara29]

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

[Judith56]

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

[Trishann]

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

[mum43]

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:grouphug:

[Trishann]

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

[mum43]

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:pray:

[ihurttoo]

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

[mum43]

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

[Trishann]

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

[mum43]

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

[Trishann]

Jill :hi: 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. :bonk:

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

Sending hugs, Trishann

[mum43]

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.:toilet:
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:angel:

[Trishann]

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

[mum43]

Trishann,:hi:
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:smile tee

[Trishann]

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

[mum43]

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:cat: 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?:pray:

Take care xxx

[Judith56]

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

[Trishann]

Hi Jill :hi:
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 :pray:

[mum43]

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

[DebbieD]

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

[Trishann]

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

[DebbieD]

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

[Judith56]

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

[Trishann]

Judith, Debbie and Jill, just want to say Good morning :hi: and hope you all have a nice day.

Sending hugs, Trishann

[mum43]

:hi:
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.:cussing:
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

[GriffsMommy]

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 :grouphug:

[mum43]

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

[Trishann]

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

[Trishann]

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

[Judith56]

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.