Sphincterotomy

[Army_Baby1]

Hope things went well for you... Will keep my fingers crossed for you,, And if you show up over here I have a spare diaper ready for you...

[Bettypooh]

Today is Baby Brian's big day so everyone be thinking of him and sending positive spiritual energy his way

[Baby Brian]

Today is Baby Brian's big day so everyone be thinking of him and sending positive spiritual energy his way

[rh1979]

Brian - I hope all goes well today and wishing for no complications!

[Baby Brian]

Brian - I hope all goes well today and wishing for no complications!

[Guest YoungZeppelin]

Congrats... I hope everything goes well in the future for ya.

[Army_Baby1]

congrats......speedy healing and best wishes

[blitz1027]

Congrats Brian. Hope everything goes well and there no further complications

[Craisler]

I hope the operation works out for you.

[rh1979]

Hey Brian, I hope the pain is starting to subside. I can only image what you're feeling right now!

[Baby Brian]

Well the pain around where my sphincter used to be has just about gone away already. However, due to my urethra being sensitive to catheters, the tip of my penis is constantly sore. I'm using the lidocane gel to manage that though, so it doesn't get too bad.

Still dripping a bit of blood, but like I said before that is expected to continue for a while more. No other real problems or side effects to report- for now.

As a side note though. I am already sleeping like a rock, and completely through the night. Having this energy is great! However, since I'm not constantly waking up and shifting around, my back has been getting quite sore. My tempurpedic mattress is about 10 years old though, so I'm guessing I just need to get a new one that's more comfortable. As usual, the decent ones of a good quality will cost well over a grand, so that's a big unexpected cost I'll have to live with.

[XyXy]

Brian -

[Baby Brian]

Brian -

I have talked with you over the years, about this, so I'm just curious. Did they give you an external sphincterotomy? From my memory, and our dialogues, I had the intuition that your problem was more with your internal sphincter. I had very similar problems after my injury, and botox injections to the external sphincter also did not help me very much. In the end, they had to cut both my sphincters. Just curious as to what exact procedure was performed. I'm also curious as to what exactly is your voiding pattern now? If you wouldn't mind elaborating, I'm sure many others would like to know as well. Hope you are healing up well!

My urologist only did the external sphincterotomy. This is the one that has been giving me the problems and blockage, which I had been able to infer from catheterizing and from the botox injection to my external sphincter. I do not believe it's my internal sphincter or a bladder neck narrowing (though I could be wrong).

I am still catheterized for now though, so I won't know how well the surgery worked for a little while to come. Obviously my voiding patterns haven't been established yet, other than emptying a bag when ever I need to.

My urologist also didn't want to do both of my sphincters at the same time since he was concerned about me possibly bleeding too much, especially since he did a full radial cut to completely remove the sphincter, instead of three smaller cuts to just open me up some.

I have a follow up with my urologist on the 11th of september. We had both agreed that if I was still having problems by then, that he would then consider doing my internal sphincter as well. For now it's just waiting for me to heal and see if it was enough. I know I hate the wait and see game, but at least something is finally getting done.

I am continuing to slowly heal, and my bleeding has been slowly getting less and less. Normally my pee is a clear yellow, but after my morning stretches it has some blood in it. I try to be careful, but have to stretch as I have been getting really sore and tight lately. I have also been very tired lately too, often getting home from work, eating, taking a two hour nap, stay up for half an hour, then going back to bed till morning. Lather, Rinse, repeat...

[Bettypooh]

Surgery and anesthesia can 'knock you down' for awhile but it will pass, usually after a few days. I appreciate your explanation of the "radial" procedure, It didn't sink in to my sometimes-thick skull that it was a method of removal, it makes sense now and I can see where it would be better than simply cutting it where it might regrow back together We're all hwere cheering you on and we appreciate your sharing with us. I have never encountered as complete a story about this procedure anywhere else and I know it will do the next person who undergoes it lots of good

[Baby Brian]

Bettypooh, thanks. I figured if I'm going to be posting my experiences on here I might as well do it in earnest. Too much info might be a bad thing, but too little definitely is.

As for the surgery and anesthesia. I've literally had dozens of them. The anesthesia shouldn't really have any lasing effect after 24 hours. The surgery is what tires me out, especially when I have blood loss with it. It's also worth noting I have an increased appetite too. That's the case for me this time at least. My blood loss, though expected, has been markable so my body is working over time to replace it.

Even though I'm not peeing in my diaper right now, I've still needed to change them 2-3 times a day as the blood is dripping around the catheter and from my penis. Enough so, that it warrants my still needing a change. Overall I'm not worried about it all, mostly because I was prepared and expecting this to happen. Oh, I am also taking anti-biotics, and drinking lots and lots of cranberry juice as per my doctors orders. I have not felt sick at all, and still seem to be healing nicely (if not slowly).

[XyXy]

Hey Brian,

[Baby Brian]

Wow, I'm already at day four and I'm not even sure I will completely stop bleeding tomorrow. Was your surgery the linear cuts (one, two, or three), or was it a complete radial cut like mine was?

Definitely taking care of it either way though.

[lynnlander]

Hello Brian,

[Baby Brian]

Hello Brian,

I only wish you well, I have so many of the same problems, and my urologist told me my next step and the ultimate, is mitrofanoff I really need your advise too

Lynn

If you're a fan of catheters and absolutely hate diapers then I'd say go for it. My urologist wanted to do this to me before trying the sphincterotomy, but I refused. You didn't mention any of your symptoms, but here's why I went the route I did.

A mitrofanoff appendicovesicostomy will effectively use your appendix to create another pee hole at your belly button. You will then need to catheterize this hole a minimum 4 times a day for you to empty your bladder. I also have (hopefully had) painful urges, so in order to avoid those I would have had to stay catheterized 24/7. You're not supposed to feel this though, but you would still need a belly bag if this is the same effect you'd be going for. I also questioned why my doc wanted me to undergo the more dramatic surgery, when a less evasive sphincterotomy would net the same result.

Personally I did not want to go his route as I already like wearing diapers and would be WAY more comfortable using a diaper than a catheter & bag via a new hole. I also went as far as telling him I've been wearing diapers for 18 years already, was already comfortable wearing them, and pointed out that the sphincterotomy would not cause me to become permanently incontinent since I already am. As you know he eventually relented, but only because I stood firm in my choice and pushed him to go this route.

Ultimately the route you choose is yours, not your doctors. However, I would ask you to research both surgeries simply by googling them. Also include your searches for complications and problems. You will find a few extreme results, but be warned that is always a possibility for either of them. Mostly though you'll just want to get fully versed with both procedures so you can come to the conclusion of which one you'll want to go with.

Either way, good luck in getting your issues resolved- sooner rather than later.

[Baby Brian]

Another update everyone.

Saturday evening I had a bunch of clotted blood break loose. It was a bit gross, several inches long, dark red and had the consistency of jello. (sorry tmi, I know). The pee in my urine bag also turned a dark cherry red.

I was a bit freaked out by it, and called the nurse I was supposed to from after my surgery and for any problems. Well, this counted so I talked to her. She said this was not to be unexpected, and does happen. She was a little surprised it didn't block me from peeing, and was glad when I told her I had already started to clear up and didn't have as much blood in my pee.

Overall I don't have as much pain any more either. So I am on the mend, even if it is still happening so slowly.

I was also going to take out my catheter this evening after work (one full week), but the nurse I talked to recommended I do it in the morning so I can monitor my pee throughout the day, and if needed I could talk to someone about it again, and even my doctor would actually be available during the day if I needed to consult with him.

I'll let everyone know how the removal goes tomorrow. Fyi, I was told to expect more blood again after I remove it. Increased pain too, but I have pills for that. Cheers all.

[lynnlander]

If you're a fan of catheters and absolutely hate diapers then I'd say go for it. My urologist wanted to do this to me before trying the sphincterotomy, but I refused. You didn't mention any of your symptoms, but here's why I went the route I did.

A mitrofanoff appendicovesicostomy will effectively use your appendix to create another pee hole at your belly button. You will then need to catheterize this hole a minimum 4 times a day for you to empty your bladder. I also have (hopefully had) painful urges, so in order to avoid those I would have had to stay catheterized 24/7. You're not supposed to feel this though, but you would still need a belly bag if this is the same effect you'd be going for. I also questioned why my doc wanted me to undergo the more dramatic surgery, when a less evasive sphincterotomy would net the same result.

Personally I did not want to go his route as I already like wearing diapers and would be WAY more comfortable using a diaper than a catheter & bag via a new hole. I also went as far as telling him I've been wearing diapers for 18 years already, was already comfortable wearing them, and pointed out that the sphincterotomy would not cause me to become permanently incontinent since I already am. As you know he eventually relented, but only because I stood firm in my choice and pushed him to go this route.

Ultimately the route you choose is yours, not your doctors. However, I would ask you to research both surgeries simply by googling them. Also include your searches for complications and problems. You will find a few extreme results, but be warned that is always a possibility for either of them. Mostly though you'll just want to get fully versed with both procedures so you can come to the conclusion of which one you'll want to go with.

Either way, good luck in getting your issues resolved- sooner rather than later.

Hello Brian,

First, thank you for your reply. I have probably learn more from you then researching my issues online.

[Baby Brian]

Lynn,

[Baby Brian]

A couple more updates everyone.

First, I removed my catheter this morning. I noted there was 50cc of water in my catheters balloon, yet I never realized there was that much in me. Just a little weird since I was knocked out when they put it in me. I made sure to remove it slowly since I know when you deflate those large balloons they tend to wrinkle. Those folds can actually do damage if you wank it out too fast.

There was some coagulated blood and a little bleeding after removing it, but not as much as I was actually expecting. Whew. As expected though, I was also instantly sore, so I quickly took a pain pill.

At first I wasn't peeing at all so I was a bit concerned my sphincter still had enough muscle left to have actually closed back up again. I gave it some time, and during my late morning bowel movement I checked the bowl to surprisingly find I had peed (with a little blood), but had not felt it. I can only hope this keeps happening!

Second, Lynn and I are private messaging each other now. He is not a DL, so I'm doing what I can (in my opinion) to help him come to terms with everything, including that I still believe a sphincterotomy is right for him too. (because a mitrofanoff??, seriously not). I'm sure most of us here can understand wanting to keep something like this fairly private, be please feel free to use this thread to send him your best wishes.

As for me, the only wishing I think I need at this point is that my sphincterotomy continues to work as great as it seems to be, and that this in not a dream.

[lynnlander]

I couldn't agree more Brian, I don't want to ever have a Mitrofanoff, and to think of it, after they are done with you, and still in the hospital they bring in a shrink to talk to you, yes your body has really changed.

[lynnlander]

One more note on your comment of not feeling when you peed, but I have that now, I don't feel and I must look when I'm sitting down (the only way I can pee) to see if I'm going. This is another sign of neurogenic my Urologist mentioned