Had Cystectomy And Nothing Has Changed. - Interstitial Cystitis Network Support Forum

mum43 · 01-12-2007, 05:20 AM

Hi,
I am in a rutt!!
I had my bladder removed last November 06, and it feels like it's all been a waste of time.
And I am left with the scar to prove it.
Nothing has changed, I still pee for England, the pain is still there but worse than ever.
My Mitrofanoff is very sore where I cath every 2-3 hours which bleeds everytime I do it, and my belly constantly hurts.
I have spoken to my surgeon in London UK and have to go back for another appointment next wedsnesday.
He has decided he may have to block the urether and the nerves because the incontinence is really bad and I have no control at all.
If I can't get to a loo it's too late urine just gushes out, even if I wear a leg bag to go out it happens.
So I have just been through major surgery which hasn't made a difference as yet.
I have a huge scar and no belly button and my husband thinks it's discusting, and does' his best to avoid me.
I hope this second op works or I will be a single parent with no bladder and no life!
Has anyone else had these problems I am having?
I'm pretty sure that it will all work out in the end, it just feels like all the odds are against me at the moment.

all the best everyone
mum xxx

dancemomof2 · 01-12-2007, 05:57 AM

Just wanted to send you a great big hug and hope things get better with the second op. Keep your chin up we are all here for you.

**Kara29** · 01-12-2007, 06:20 AM

Dear Mum,

I understand that this is an incredibly hard time for you and your family. I am going to be as honest and as informative as I can be at this time.

I am going to try to answer some of your questions and also let the other people who have had cystectomies tell you about their experiences with regards to recovery. Judith is great at explaining most of this as she has gone through so much. She has come out on the other side of it and I pray that you will eventually.

Bladder removal is a process. You don't go and have it removed and are perfect the next week. It's not like having your appendix or gall bladder removed. It's a MAJOR OPERATION as you now know. It can take up and over a year to see any good changes.

First, I want to ask you. Have they screened you for an infection, by doing a urine culture, not just a urinalysis? That is number one. If you have an infection, you will have pain and possibly incontinence. If you possibly have an infection, catherizing can be painful.

Catheterizing with the correct catheter size can also determine why it may feel irritated. What size catheter does he have you using, do you know? If it is too large, you may want to ask him if you can possibly try a smaller one for awhile to see if it helps with the inflamation.

Yes you have been through MAJOR SURGERY just in November. 3 months is NOT an indication of how you will do in the long run. Like I mentioned before the recovery period can take up to 6-12 months or longer. Please know that it may take some time. You have ONLY JUST begun to heal. I know its hard but you need to make room for some patience with this. This is good news, it means that you may get better with time and that is a good thing! I would like to give you some encouragement before you see your Doctor on Wed. There are possibly some fixable reasons why you are still in pain and leaking other than its just the beginning of your healing process.

The scar will always be with you. It's part of you. The changes to the body with this surgery can be very difficult to handle. You may want to seek out a counselor to help you through it as well as your Husband. I am sorry he feels it is disgusting. I see is as a badge of the courage and strength you had to endure that HUGE operation. You made it through! Some people are not so lucky and have it much worse.

With respect to what I have gone through with these surgeries, I have not had trouble with leaking. I do have some pain where the urethra used to be but we think that it has been there all 8 years and because it has not changed one bit since the my Surgery in May. It's the same exact pain that I went into before the surgery. I am going through a diagnostic process to see which nerve could be causing this pain. They have procedures and medications to help this sort of pain. It basically feels like I have to pee (Urgency) if you will. It's worse when I am sitting. Is your pain different than when you went into the surgery or has it changed? One procedure that your doctor may do is called Denervation. They will find the nerve that they think is causing you to have these problems and cut it so that it will no longer supply pain messages to that part of the body. Sometimes they do a Nerve Ablation where they kill the nerve via Radiofrequency signals that send of f heat to burn the nerve so it won't function anymore. I had this done but in all honesty, it didn't work. They can also inject the nerve with an agent that kills that nerve off. It would be best if you ask your doctor what he plans on doing for you with regard to the nerve issue. I just want you to know that it's not over yet and there are still options medication wise and surgery wise that could make you much better. As far as the Denervation goes, I am going through that process now, so I can help you with information and my experiences. Judith has also gone through it.

Judith has a wonderful section on here at the very top of the page on this board that goes through MANY of the complications people can face after this sort of operation. You may want to read it. It's honest and informative.

If your doctor can't help you get better, then would it be possible for you to see a Chronic Pelvic Pain Specialist? Maybe your doctor can help you find one.

PM me if you wish. If it makes you feel better, I can think of lots of things that could be tried. I can help you with a list of concerns and questions you can take to your doctor on Wednesday. I am going through a rough time too but I have to believe that I will get better like Judith and Lesa did over time. They give me strength and hope to carry on.

If I can think of anything more, I will come back and let you know. I didn't want your post to be go unanswered. I know at a time like this, you need someone to reach out to you! I know you want to hear that is will be ok. I can't promise that you be 100% better now, but I can say that you are NOT alone. We are with you during this challenging time! We are marching with you in this.

I am sending you a HUGE HUG!

I would like you to try and give yourself a big, strong, hug each day. I hope you can learn be proud of yourself for making it this far! I feel that you have made it through the hardest part! Bless you for going through it!

Sincerely,

Kara

* Bladder Removal/Ostomy 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.

**Judith56** · 01-12-2007, 05:46 PM

Mum, as others have said it is still very early in your recovery.Many people have leaking issues for the first year and then things settle down- I know I did and my ET nurse told me this tends to the case for lots of folks. You just need to be patient. How much does your pouch hold now? Are still on a cathing schedule? My uro had me put in a foley catheter for several weeks whenever I was having troubles to give the stoma a rest. Maybe you can ask your uro about this when you see him on Wed. As for the bleeding are you using lots of lubricant when you cath? One of the reasons you may be bleeding is because the stoma has mnay blood vessels close to the surface so if they get brushed against they bleed easily. It is not something to worry about unless the bleeding does not stop within a reasonable amount of time. Also with time your scar will fade and not be so noticeable. Mine is now a very thin white/silver line that pretty much blends in with my skin. I am so sorry your husband is having a hard time with this- would he be willing to get counseling with you? It may help. A far as pain, I was still having some pain from the surgery for at least several months after- mostly in the area of the stoma as well as my stomach. The surgery does not always get rid of IC pain and some pepole need to be on long term pain management, so if after seeing the urologist and having more surgery, it may be wise to see a pain specialist if needed. Do you still have your urethra? Some people find that once the urethra is out the pain is gone. PLease let us know what happens at your doctor appointment,okay? Hugs, Judith

Trishann · 01-12-2007, 07:53 PM

Mum, I am so sorry you are feeling bad right now.
Just want to send you hugs, and hope you start feeling better and better each day.

Many hugs, Trishann

mum43 · 01-14-2007, 11:22 AM

Thankyou ladie's for the well needed advice.
I have a pain management doctor, he has got me on Fentonol and Morphine and the pain is still pretty bad at the moment.
I'm not sleeping to well either.
My neobladder is only holding a very small amount at the moment around 150-200mls at a time.
At the moment I am using a men's 14inch cath, the nurse gave me a few smaller sizes to try but they still hurt when they go in the Mitrofanoff.
My urine has already been checked for any underlining problems.
As for the ureter pain it's at it's worse today, even more so when I sit down, I was up all night in agony.
Everything hurt from the top of the scar to the bottom, and all around it.
As far as I know I am having a KUB scan done weds to check for any inner problems, the thing is I have no control at all and won't be able to hold urine for more than 10 mins at a time.
The scan requires a full bladder or pouch for a hour before it's done.
I am not looking forward to that at all.
When I get the urge to go, if I don't cath it just pours out on it's own.
I'll shall take a spare set of clothes with me when I go to London just incase.
As for hubby he said that the hospital should have left the operation and tried something else instead.
Believe me, they did try everything they could and the decision to have the op was thought through very long and hard.
He knew I would have this done and was told by the surgeon how things would be afterwards.
He didn't expect it to be true, he thought the surgeon was exaggerating a little.
All the trips to and from the hospital have been costly and there are alot more to come which helps very little.
I am unsure as to how things will turn out in our marriage status at the moment and to honest I really can't be bothered to fight with him over this.
I am just going to see my surgeon weds and see what happens, and recover from the op.
I know it's a slow progress but like you all say I WILL get there in the end.

I would be at a total loss if I didn't have all of you to give me advice,you are all so understanding and kind to me and you don't even know me.
A great big THANKYOU to all of you for being there for me.
I get so much more support from you all on this site than I get from my own family.
love to all stay well
love jill xxx

**Kara29** · 01-14-2007, 11:35 AM

Jill,

I am wishing you better days ahead! I hope you get some answers on Wednesday! I will be thinking of you. If you need anything from us, just ask.

HUGS!

Kara

ICLori · 01-14-2007, 01:22 PM

Sending you hugs and wishes for better days ahead.

Blessings,
Lori

mum43 · 01-15-2007, 10:20 AM

Thankyou Lori and Kara,
I will let you know how I get on weds.ing everything does' work out in the end.
look after yourselves.
love jill xx

**Judith56** · 01-15-2007, 11:44 AM

Jill, in the beginning for me I was leaking all the time, if that is at all helpful. I was told I could wear an external pouch over the stoma, which was not something I wanted to do, but it is an option. I chose to cath more frequently as well as put up with changing my clothes if need be. In time it got better. I think because of where your stoma is placed it can be more of an issue. In the States they do not do as many in the bellybutton as they do in the UK where you live. I also remember that you had some really rough things happen during your surgery that were unexpected and they may be contributing to some of this as far as the healing is going. Do ask the doctor about using an indwelling catheter for awhile to see if it helps ccalm things down. Are you using lots of lubricant? I am also sending you a PM. Hang in there- I am keeping you in my thoughts. Judith

Trishann · 01-15-2007, 01:12 PM

Jill, just thinking about you again. I just hoping things will get better for you soon. I think these ladies need to become home assistance. I don't think we would be so afraid then, just knowing someone been through it and understands all the ups and downs of it.

Once again, just want you to know you are in my thoughts and prayers.
Sending hugs, Trishann

**Kara29** · 01-15-2007, 01:31 PM

Jill,

To add to everyone else, I just thought of one more thing. I don't know if your doctor has you on an irrigation routine with saline. If not, it could be that there is a large amount of sediment or mucous that is sitting at the bottom of the bladder and possibly accumulating and taking up room so that there is no room for any urine.

The reason I mention this is because two weeks ago, I ran out of saline and as a woman that happens to build up a lot of sediment, I need to irrigate with saline at least once a week if not more. What happend was I ran out of saline and got too lazy to make the "homeade" saline. So I went several weeks with no irrigation. When I got back home I made the homeade saline. I have the recipe that my Doctor gave to me. I irrigated and pulled out 500 cc's of nothing but sediment and mucous. After that I was all clear. No infection was present. I did have leakage during the time of no irrigation. Now I know why, there was no room for the urine to sit in there.

Another thing to ask you Doctor about on Wed.

Just a thought!

Judith? Have you had anything like that happen to you?

Rama K. · 01-16-2007, 12:27 PM

Hi Jill/Mum
I read your agony with regards to the surgery and recovery. My heart goes out to you. My Uro had suggested this as the only option last Dec. I was not ready for it yet. I felt I needed to know that all other options were done before I opted for this.
Wishing you all the best and lots of hugs to you.....You are in my thoughts and prayers.
Rama - IC with Hunners since 1999....

**Judith56** · 01-17-2007, 05:55 PM

Kara, in answer to your question, I have never had that happen to me. I have leaked for other reasons. I have had sediment, but not so much that it filled up my pouch to the extent that you experienced.

mum43 · 01-18-2007, 06:41 AM

Hi everyone,
Thankyou so much for your replies.
I hope you are all well.
Just to let you know that I saw the surgeon's(3 of them, lucky me.) yesterday.

They are very pleased with my new bladder and mitrofanoff.
I have been put on another course of tablets and had a scan of my bladder done.
It is healing well but on the outside there is alot of redness so I have to have a KUB scan and a bladder x-ray done as soon as I can get the appointments arranged.
The surgeon also wants me to have some Urodynamics tests done again to check why I leak so much.
He is a little concerned about the soreness and pain inside my beely and say's it could be IBS so I have another lot of tablets for that too.
He did suggest further correctional surgery in the near future if the scans show any problems.
However, I won't be having anything done for a few months because I am still recovering from the major op and will need more time to recover before they do another op.
To spite all the upset with my husband,I am getting the help I need from my doctor, nurse and surgeons, they are doing everything they can to make me well again.

I am in quite alot of pain today, thern again I expected I would be, as due to my husband refusing to take me by car, because I keep needing the loo and the costs of travelling, I was unable to travel by car, so I got the train to london and a taxi to the hospital.

I am now suffering but, atleast I could use the loo on the train.
I totally refuse to be beaten on this,I can travel on my own as long as I wear my medic Alert pendant.
I have taken aboard everything you have all advised and will do extra washouts.
Thankyou all of you for being here !!