Bladder Problems

[andy271160]

Hi all

Is bladder problems common with the majority of you guys??

If so is anyone familiar with a SUPRAPUBIC CATHETER??

I am asking because on the 5th November I am seeing the urologist with a view to having one fitted, I am interested to here from anyone who knows about these things, do they hurt? do you get infections? does the tube come out in bed? etc etc.

Please share your experiences

Andy

[E Soskis]

I've never had a suprapubic catheter but, I am familiar with them as I have been in nursing for most of my life. Usually, suprapubic catheters are placed because there is some type of damage to the normal physiology of urination. I work specifically with trauma so, usually it is for a traumatic reason. The catheter is placed through the wall of the lower abdomen by-passing the genitalia. They are either sutured in place or locked in place with an external sticky-tape lock. I have never seen one simply fall out on its own - if you snag it on something or accidentally tug on it, it could possibly be displaced. Once you have had it awhile, the body heals in around it and it is pretty snugly secure. Is this a long-term placement? - if it is, you will want to discuss with your physician the proper techniques to handle it and prevent infections. Your MD should have detailed instructions and a "FAQ" sheet to assist you. Be sure you have discussed all possible options with your physician as to alternatives - I don't know your situation but, you should at least have an idea of the various types of bladder draining treatments and an honest discussion as to which ones work the best in your case. As for pain, I again have never had one but, have worn a foley catheter for weeks at a time - it is something you get used to after awhile - just like all the other things we have to get used to!

[andy271160]

Hi Thanks for your input.

The catheter is required due to loss of control in that area, plus almost total lack of mobility. I have gone through pads, nappies (for want of a better word) condom cathter. and traditional indwelling catheter's.

I am only 52 so this is quite daunting for me, I have discussed lots of options with my urology nurse and she feels this is the correct solution for me, all things considered.

One of the considerations for me is intimacy with my wife something that has been absent for a few years mainly due to this condition that has rendered me all but useless in that department but between us we want to revive what we can while we can and so this type of catheter seemed to be the least ofputting and trustworthy of all the options, the condom type was unsuccesful as it would come off at night, whic to me was highly embarrassing.

You would think that after five years of this stuff that my dignity would have become immune but I have always been a private person and I still try and protect my dignity as far as I can.

Strangely it is easier for me to be open on here than with my doctors, so thanks to you all for that.

Andy

[E Soskis]

I understand about the dignity issues - since I work with lots of doctors and nurses, it can be embarrassing to have certain procedures performed by my co-workers and colleagues. I have to say, they have all been very nice and only teased me a little! - they have always attempted to preserve my modesty and I appreciate their efforts.

I guess one of the most frustrating aspects of dysautonomia is the bladder and genitourinary dysfunctions. I have had to periodically self-cath and have battled urinary infections off and on for years. I hope the suprapubic cath is the answer for you - I know you are frustrated and "over" it all by now!

[Rachel Cox]

Hi Andy. I hope the SPC will bring you some of the freedoms you are hoping for!

I have had an SPC. It wasn't ideal for me and it was removed. I am now using intermittent self catheterising. For me this is better, but the male anatomy is a different situation... it sounds like you really have tried everything before this. I also want to applaud you for working towards your goal with your wife. What a beautiful thing to strive for. I sincerely hope the SPC helps you.
For me the SPC was a mixed bag (pardon the pun!). It was awesome to be able to see exactly what was going on, and measure easily. It didn't fall out and was tolerably comfortable. But I did have infection problems. The infection problems weren't within the bladder but at the site. We tried lots of different ways around it but it kept getting worse until it was removed. My cousin's husband is a quad and he has an SPC, has for years. His longer term issues have been with bladder infections and blocked caths... he is a big fan of having silicone catheters only; he uses a syringe flush when he needs to. I think the key to any indwelling catheter is management. If you are on to the management you can make anything work, the urologist and nurse will be able to give you the best advice and training. I also recommend increasing your fluid intake if you are using an SPC. All the best and let us know how you get on! Keep your eye on the prize, Andy!

[andy271160]

Thank you Rachel

Your words are very kind, I suspect your experience in life helps you say very sensible and caring words, it is only three weeks since i have got a formal diagnosis (dysautonomia axonal small fiber neuropathy) alledgedly extremely rare with only one other person in the uk with it. It has taken five years of being dragged through the system by a half hearted neurologist who was **** bent on having me admitted into a six month program for phsycological re-programming. If it wasn't for the fact that the current diagnosis is terminal I would be over the moon. My wife has been my world and continues to be my life, we are facing this together and have sorted out all the nasty stuff like my funeral etc so we are free to enjoy every moment (except of course all the hospital appointments) Tommorrow we see the urologist who will be doing the procedure so i will try and get all the answers i need. Thanks for your mention of infection.

I will of course let you know how things go.

Thanks again, take care of each other.

Andy