Sphincterotomy

[Baby Brian]

I was only in the hospital for the day of the surgery (actually wasn't even a half day). At no point did I have to talk to a psychiatrist (before or after the surgery). I went back to work in my office the very next day. Granted I was still in a bit of pain, but it's not like my office job is that much more physically demanding that sitting around the house all day. The only exception was that I had to do it with a catheter and leg bag on at the same time (not a big deal- nobody even realize it), and that by the end of the day I was mentally wiped.

Per my doctors instructions, and my own added care, I removed the catheter at home. This was probably better than having a nurse rip it out of me like they usually want to do (so it hurts less I'm told- yeah right). I'm also pretty sure it was a 50cc balloon (standard size), they just didn't fill it up all the way. My own catheters are normally a 5cc balloon. After all, once it's inflated enough to prevent the catheter from migrating out what's the point of inflating it more?

[Baby Brian]

Another quick update.

Twice today I have had an urge hit me. Both times I've had to concentrate and push just a little for me to pee. This doesn't make much sense as my diaper is already way more wet than just the twice I've consciously had to pee.

I've also felt my sphincter spazing out just a little a few times today. I'm guessing my sphincter was so tight before, that what's left is still enough for it to try and close back up again. Maybe I'll get lucky and like a rubber band that's been cut it will snap back open- permanently.

I wish I had the conscious control to just keep it relaxed down there, but oh well. The worst case I can see is having to get the surgery repeated. It's still to soon to tell for sure right now though, but I think I'll flow up with my doctors nurse and see what she thinks.

[XyXy]

Hey Brian,

[lynnlander]

I was only in the hospital for the day of the surgery (actually wasn't even a half day). At no point did I have to talk to a psychiatrist (before or after the surgery). I went back to work in my office the very next day. Granted I was still in a bit of pain, but it's not like my office job is that much more physically demanding that sitting around the house all day. The only exception was that I had to do it with a catheter and leg bag on at the same time (not a big deal- nobody even realize it), and that by the end of the day I was mentally wiped.

Per my doctors instructions, and my own added care, I removed the catheter at home. This was probably better than having a nurse rip it out of me like they usually want to do (so it hurts less I'm told- yeah right). I'm also pretty sure it was a 50cc balloon (standard size), they just didn't fill it up all the way. My own catheters are normally a 5cc balloon. After all, once it's inflated enough to prevent the catheter from migrating out what's the point of inflating it more?

Hi Brian,

When I talked about them bringing in a shrink, it was what I read they do if you have a Mitrofanoff, I havent had that as mentioned, but he wrote it was the ultimate for me.

Lynn

[Bettypooh]

Whenever someone pushes something really hard, I get suspicious. And when someone is trying to tell me that something is the "best", I ask them to please relate to me your personal experience which brought you to this conclusion- not someone else's experiences, just your own Without fail they stammer a bit then tell me they have no personal experience but- and I cut them off right there with "SO if you have no personal experience but are so highly convinced by things you don't know that well, why should I place any faith in anything you say? You're obviously easily convinced of things you don't know and I cannot see the point in trusting someone like that with my (fill-in-the-blank)" After a few moments of tense silence, they agree that their reasons may not be quite as solid as they initially stated, as they then realize that this last statement is essentially saying "I am not to be trusted in this matter"

[Baby Brian]

Hey Brian,

[Baby Brian]

Just talked to my urologist. He thinks the surgery did work as per the effect I had immediately following when I removed the catheter. The reason I am once again retaining is supposedly do to inflammation that has swollen me shut again, and irritation as is evident to my sphincter spasms.

My urologist believes it should go away anywhere from one day to a week. After that I should start unconsciously/ automatically peeing again. He did mention that if I start having serious problems with retaining again that I should temporarily self cath again, as needed. I am able to empty my bladder though, so hopefully things will only get better from here.

As a side note, my dripping blood is still slowly getting better. At this rate I would expect to be blood free in one or two weeks. The pain is also subsiding and is nothing more than a general soreness at this point.

[Diapered Dave]

Hey Brian,

Any updates on your recovery? Has the swelling gone down? Is your bladder starting to empty without control yet?

[Baby Brian]

Hey Brian,

Any updates on your recovery? Has the swelling gone down? Is your bladder starting to empty without control yet?

Unfortunately no. I am still unable to pee without straining some. The amount I strain is significantly less than before though, but still enough to keep me blocked up and get those darn urges. I can't say when I would expect the swelling to go down all the way either (if this all this is).

I'm hoping this will resolve it's self, but if not I may likely need to get it done again. Maybe my urologist didn't remove enough, and my sphincter was so tight before, that it has just closed back up again. I don't know.

Other than that I am still dripping blood and still sore down there. I'm back to my old interrupted sleep again too. I can't believe I was used to this. I have felt so exhausted these last few days, which honestly may be the worst part.

[lynnlander]

Hoping things are improving Brian, I haven't been on much, kinda dealing with some anxiety here too.

[Craisler]

Given my experience with the kidney stone surgery, I'd say give it some time.

[XyXy]

Brian, from knowing your history, I still think that there is a high chance that you have an obstructed bladder neck =) Just my two cents. Our history is very nearly the same, though I didn't get the external sphincterotomy, I did get 3 botox injections in the sphincter. Wasn't until I got the bladder neck that I saw any great improvement.

[Baby Brian]

Brian, from knowing your history, I still think that there is a high chance that you have an obstructed bladder neck =) Just my two cents. Our history is very nearly the same, though I didn't get the external sphincterotomy, I did get 3 botox injections in the sphincter. Wasn't until I got the bladder neck that I saw any great improvement.

There is a good probability you may be right, though I have been told by several urologists that my urethra looks normal and is not obstructed. Of course looks can be deceiving, and my symptoms do fit.

Still, I can very clearly feel my external sphincter even now, exactly where it is, and how tightly clamped down it is (even after my surgery). No doctor or other person can tell whats going on with my body better than I can, even if I don't fully understand it all or what may need to be done to fix it.

That said, I can feel my sphincter is still clamping down. I could feel it when the muscle was spasing after my surgery. I can often feel the urine and ejaculation fluid back up to my sphincter, and sometimes when this happens just concentrating on relaxing will get me to pee (though I still usually have to strain to get things going). Also, when inserting a catheter I can feel the resistance down in me as I try and push it in past my sphincter. I sometimes will even start peeing before I get to my internal sphincter (which I can also feel, though not as clearly so).

There are also a few other indications I've had that all point to my problem being my sphincter, as well as somewhat ruling out a narrowing of my urethra. I still feel the sphincterotomy was simply not successful, and did not "destroyed" it quite as well as my urologist expected it would.

For now, I still don't have my follow up appt with my urologist until the 11th. I intend to hold back on making this actual judgement until I have a chance to talk to him again. I certainly intend to get a cystoscopy to see what's going on down in there, and will probably have the sphincterotomy done again too. Maybe I can get the bladder neck incisions at the same time, since I know it wouldn't hurt any ways, and could only help.

[rh1979]

Brian, I'm sorry that it appears the procedure didn't work. Are you still having the same pain as before? Are you still having to self-cath regularly? I hope these questions aren't getting too personal. Just ignore if they are.

-Ray

[Baby Brian]

Brian, I'm sorry that it appears the procedure didn't work. Are you still having the same pain as before? Are you still having to self-cath regularly? I hope these questions aren't getting too personal. Just ignore if they are.

-Ray

Ray, I don't have any problem posting on here, especially if it could help someone later.

I probably should be self catheterizing, but have just been straining instead. Since the surgery I do not have to stain as hard at least, so it certainly has helped even if it didn't do what was expected.

I am still getting my same urges as before, however, they are not as bad. You may not know this, but when an urge hits You've really got to go really bad, however, since I couldn't, my urges would only get more intense for every second I delayed peeing. Since it's a little easier for me to pee now, my urges do not get as intense, and as such not as painful. They are still occurring though.

[Baby Brian]

Finally some slightly better news.

[Bettypooh]

Well there's still hope- things haven't fully healed yet and there may still be some inflamation reducing the size of the opening which might go away in time. With the radial procedure removing the sphincter entirely I can't see how it could be causing a restriction now as long as the procedure was done well enough. If it's a case of the restriction being elsewhere that will make itself known in time At worst you've positively eliminated one possible cause of your problems so it's progress in the right direction As to your feeling what's going on down there, the nerves are still intact so they are still sending signals to your brain which cannot tell it the 'data' it's getting is correct or not, similar to what's called "phantom pain" in amputees. The feeling is real even though the sphincter no longer exists; in time that may or may not go away and I don't think anyone can make any predictiions of that.

[babykeiff]

Baby Brian,

[Baby Brian]

Bettypooh and BabyKeiff, the radial sphincterotomy did not actually remove my entire sphincter. It only removed an inside layer of it. As my sphincter was so incredibly tight all the time, I wouldn't be surprised if it was enlarged just as any other muscle you work out would be. As such, it would totally make sense that my muscle is still intact. At least this is how it feels.

Like I mentioned before, I can still actually relax my muscle and pee sometimes. This would be impossible to do if my external sphincter had truly been completely removed. I truly can feel my sphincter is still intact though, in fact, I did again this morning right as I was finishing up a bowel movement. Like so many times before my surgery, after concentrating to pee, my sphincter would spasm and close back up really tightly. I had gotten used to this feeling as well as feeling exactly where in my body it occurs. This happened yet again this morning, expect now not only did it cut off my remaining flow of pee, but it also hurt really bad since the muscle has also been shaved some. Of course this also led to more bleeding again, but that's no big deal at this point.

I'm sorry to rebut (he he..but), what you're trying to explain so much, however, I know my own body quite well and know what I feel. Yes, a bladder neck obstruction and swelling could be a very relevant factor, but I do know my sphincter still is too. This is not phantom pain or just misfiring/disconnected neurons (I have experienced this before so I know it isn't that), it is the muscle that is still intact.

Try thinking of my sphincter like one of those really thick rubber bands. No imagine it is so tight that the rubber band can't stretch open very good (at least not without great effort). Just as with my surgery, now try cutting the inside portion of it all the way around- but only part way through. The band would still be intact, and since it was so tight to begin with, it still has just enough tension to close back up again. Although not as tight as before, it is still intact and still closed up.

This is exactly how it feels for me now. Even after my knee surgeries and steel rod in my left leg, the swelling I had from them was manageable after just one week, and nearly gone in two. My sphincterotomy was done even longer ago than that now. Some swelling may be present, but it would be too light to be still blocking my urethra.

Again with nearly loosing my left leg, the nerves were very much severed and I shouldn't have been able to feel my foot. As best to describe it, it was still ghostly there (and thankfully it actually was too). Given this experience, I can say my sphincter does not produce this same feeling.

I admit I could always be wrong about anything, but given my experiences and ability to feel what is going on with my own body, I have been able to come to the logical conclusion of ruling out swelling or phantom limb syndrome. I am most likely inclined to believe my sphincter is still intact, and will likely need to have the surgery redone. Well see though when I talk to my doctor again next week.

[babykeiff]

Baby Brian,

[XyXy]

Not trying to beat a dead horse, but the way you describe it was exactly how it was for me. I had 3 fluoroscopy's, and about 8 scopes, and it wasn't until 2 years of such madness that one doctor said, "oh, your internal sphincter is extremely narrowed." It was literally my 6th urologist who figured this out. Every prior one had me convinced that it was my external sphincter. However 3 rounds of botox did very little, even though on the last injection they used double the recommended amount. Urologists are used to seeing spinal cord injuries, and often the problem for them centers around the external sphincter. I had 5 of them tell me that was my problem, when in fact it never was. Urologists are not geniuses. I have gone back over all my studies, and even a layman such as myself could deduce that the external sphincter was not contracting when the bladder was. In fact, my external sphincter doesn't even work very well at all. I believe that the nerves to it was damaged during my injury, and over time the internal sphincter over-compensated by narrowing, and the bladder hypertrophied something fierce. So for me at least, it was a battle between the bladder and internal, trying to both be the strongest, which ultimately was destroying my kidneys. Before the BN resection, I was able to void about .5 ml per second, and after it went up to over 27 ml per second. Talk about a big difference! But I guess the point I'm making is don't rely on urologists to get it right. I went through years of misdiagnoses.

[Baby Brian]

BabyKeiff, that does make complete sense. I certainly hope you're right as my continued problems would then resolve them selves. I do have the mentality of expecting the worst though. I get let down and depressed a lot less, and am presently surprised when something does go for the best. As such, I won't be holding out for it being simple swelling, but thanks a bunch for the support. Everyone else too.

Just keep in mind that my external sphincter hasn't been listening to what I'm telling it to do for some time (which I believe is a wiring problem, not a brain signaling problem). Over the years I've done enough to atrophy my muscle 10 times over, yet those errant signals keep coming any ways. Even 7 months of straight catheter use didn't make a dent.

On a side note, I did read one journal that mentioned doing both the sphincterotomy and botox at the same time. It's quite a new approach, and is definitely worth bringing up to my doctor if indeed I do end up getting the surgery again.

[Diapered Dave]

From the details you've given, it almost seems like the catheter should have been left in longer, so the remaining bit of sphincter would heal in the "open" position.

[Baby Brian]

From the details you've given, it almost seems like the catheter should have been left in longer, so the remaining bit of sphincter would heal in the "open" position.

[Baby Brian]

Not trying to beat a dead horse, but the way you describe it was exactly how it was for me. I had 3 fluoroscopy's, and about 8 scopes, and it wasn't until 2 years of such madness that one doctor said, "oh, your internal sphincter is extremely narrowed." It was literally my 6th urologist who figured this out. Every prior one had me convinced that it was my external sphincter. However 3 rounds of botox did very little, even though on the last injection they used double the recommended amount. Urologists are used to seeing spinal cord injuries, and often the problem for them centers around the external sphincter. I had 5 of them tell me that was my problem, when in fact it never was. Urologists are not geniuses. I have gone back over all my studies, and even a layman such as myself could deduce that the external sphincter was not contracting when the bladder was. In fact, my external sphincter doesn't even work very well at all. I believe that the nerves to it was damaged during my injury, and over time the internal sphincter over-compensated by narrowing, and the bladder hypertrophied something fierce. So for me at least, it was a battle between the bladder and internal, trying to both be the strongest, which ultimately was destroying my kidneys. Before the BN resection, I was able to void about .5 ml per second, and after it went up to over 27 ml per second. Talk about a big difference! But I guess the point I'm making is don't rely on urologists to get it right. I went through years of misdiagnoses.