I saw a urologist last week and he has siggested going back to self cathing through my urethra but I did tell him this was extremely painful when I did it and made my urethra so sore and also I have a spine problem that makes it extremely difficult to reach that area down there as I have to bend so far to reach it.
Why has this urologist only suggested exactly the same thing as before that it still not going to be effective?
Is there any other options that are better than urethral cathing?
I have heard of the mitronoff (sorry not sure if that's how you spell it) but he has not bothered discussing anything else except going back to urethral self cathing...
I feel he is wrong and is not looking after my interests and well being. Should I get a second opinion as I am not happy with him?
Niad... My 9 year old daughter has the Mitrofinoff, and I would highly recommend talking to your urologist (or another urologist if your not happy with your current one) about this surgery to see if it's possbily something that would help you in your lifetime if you are faced with lifelong catheterization. It's so easy to cath her, and painfree, which is a huge thing to someone who is forced to catheterize daily.
The Mitrofinoff surgery is very lenghty, and I found it to be a longer healing process than alot of other surgeries. It would consist of fasting for three days prior to admittance to the hospital, being admitted the day before surgery to prep for surgery, and my daughter was in the hospital for 8 days after the surgery. Going home, your Mitrofinoff line would be capped off, which comes out of the belly button, and you would need to flush it once a day until it is ready for use. You would have another catheter coming out of your groin area that would collect the pee in a bag hanging from your leg (they do give you a leg strap) and this goes on for a couple weeks until the Mitrofinoff is healed and ready for use. After that though, the quality of life it gives a person forced to self-cath is amazing. And in the future if you don't need to catheterize anymore, the Mitrofinoff is perfectly safe to live with...it's not neccassarily a life-sentence, unless like my daughter, your bladder is dysfunctional and your kidney function isn't great.
And it's not noticable to anyone who happens to look at your bellybutton, all they see is a normal bellybutton, which truely is something huge for anyone faced with this reality.
It truely is a secret channel, as my daughter's urologist had told us it would be.
Would I get a second opinion if I were you??? Definitely. You shouldn't walk out of your doctors office feeling like you are right now, if you feel he is not looking out for your best interests or isn't showing you all your options... move on. There's hundereds of urologists out there that will show you all your options.
Is the Mitrofinoff right for you?? Find a new urologist and find out... for my daughter it has been heaven sent.
Good luck with everything and I really hope you find the answers your looking for.
I have been told by this urologist that I will have to catheterise 4 times a day and I do not know how I am going to cope with that as he wants me to do it through my urethra and mine is very sensitive.
He did not offer me any other options, only self cathing through my urethra (again). I do not understand why he did not offer me other solutions as there has got to be other ones.
I feel that I am not happy or comfortable with this surgeon as he did not show any empathy or any sort of helpful answer to what other ways I could catheterise other than urethral. I am not even sure if he even knows a mitranoff exists.
I have to say it would be a breath of fresh air if I could get a consultant that is willing to listen to me and to help me not suffer cathing in such a sensitive area which is also extremely difficult for me to reach. I get acute severe flare-ups of back pain which goes all the way down my legs and disables me temporarely to a point where I cannot even stand up or it up. My dad had to lift me up onto my bed as I could not walk or do anything at all and honestly do not know how I am going to cope with this difficult place to cath.
I would certainly be willing to accept the surgery and it's recovery aspects if it would give me a better quality of life than self cathing through the urethra.
I have heard and read that sometimes the urethra may leak if I get a mitranoff and this is something that would concern me as I do not want to have to wear absorbent stuff or get another problem.
I agree with you, but finding the right urologist who cares and is there for the patients' best interests is maybe going to take some time as I have no idea on recommended ones in the UK. Another consultant referred me to this one...
It's nice to hear that people do get their symptoms under control and get the treatment that is right for them but I do feel I'm a long long way from this.
Hope your daughter continues to enjoy the benefits of her mitranoff.
Many thanks for sharing you and your daughter's experience.
I understand what you mean exactly, finding the "right" doctor who actually listens to you isn't always the easiest feat. But now that you know alittle more about what you want, and what may help you in your lifetime maybe it won't be so hard to get somewhere. Dealing with the medical profession can be exhausting and very disappointing.
In reguards to your concerns with leaking if you do decide to get the Mitrofinoff, I don't really believe that to be a problem. My daughter had that problem prior to her surgery, due to the poor function of her bladder, but now is completely dry throughout her days, which is heaven sent for her. Wetness is no longer an issue for her. Not to mention, for nine years she was forced to wear goodnights to sleep because she wetted herself in her sleep... that too is no longer an issue for her. She now sleeps through the night without wetting herself. She was also on a medication for leakage called Doxasin, since the surgery she hasn't been on that pill and still no leaking.
I have heard from her urologist though that it could affect "bladder urges" for some people (after the Mitrofinoff surgery) they are forced to rely more on the mitrofinoff to tell them when it's time "to go" compared to actually feeling the urge to pee until the urge is real strong. So far that has not been an issue for my daughter.
We catheterize her every 3-4 hours to completely empty her bladder, and yes, she does pee naturally throughout the day also, but her quality of life since the surgery is amazing in itself.
I hope this helps you further in making any decisions.
I have to say, I have always stated to them what I would prefer and what treatments when they suggested them that I was not happy about but they actually do not like this and got angry because they seem to think they know everything and that patients should not speak out or know what they know. I have had some terrible and depressing experiences with doctors that I really do not know whether I should bother sometimes as they never listen. They do not know the meaning of suffering, unless they truly have suffered themselves. I know this sounds horrible but unfortunately it is how I feel.
The leaking was just something I had heard of but was not sure if it was common or not. Pleased to hear your daughter has had great results and has an improved life.
As regards the 'urges' when you say they are more reliant on the mitranoff to know when to go, in what way would they know from their mitranoff when to go? What signals would it give?
I did actually wonder if after having a mitranoff if people could still go naturally as I have chronic incomplete retention and could go naturally just that I would not be able to empty all the way so felt that I had not finished but could not get any more out even when I strained or tried other techniques and did wonder if it would allow me to still go naturally and then after if I felt I had not emptied all the way, use the mitranoff to empty any residual left. You have answered this question. Thanks as that was one of the questions I was going to ask.
I feel it would totally be worth the lengthy recovery and surgery just to allow me a more independant life than is afforded by self cathing urethrally as I can only do it lying down and still struggle even to reach the area and when out it is extremely inconvenient as I have not much space to lay everything out and feel it is certainly not really a long-term suitable treatment for me.
Out of interest. If you do not mind (you do not have to tell me if you do not want to) did your daughter have to self cath urethrally to start with and if she did did she find this difficult like I did?
Many thanks. It has helped me further in making decisions.