More cautionary advice for Dr Santucci / Crane Center patients… SP cath / fistula repair
First of all, I have to preface this by saying DO NOT ATTACK ME IN THE COMMENTS. I have tried to share my direct experience before and try to offer others advice, based on it, on here before and all I got was negativity and sometimes nonsensical, uncalled for hate. I will just continue to block and delete everything. I know my own experience, I do not have to try to put it out here for anyone else. Take what you like from it and just leave the rest, if you don’t need it or don’t care.
** Also, I am not a doctor or medical professional. I am a patient. But I am also old enough and intelligent enough to make some pretty good educated guesses/risks. Again, take from that what you like.
Most recent advice:
— IF you are having Stage 1 (especially ALT) OR needing any major fistula repair:
I would NOT remove your SP catheter ANY SOONER than 6 weeks. They have repeatedly told me to take it out at 3 weeks and that “research has not been proven that longer time in helps.” But I have followed their advice twice now (against my own intuition/feelings about my own body) and both times I had zero problems until I tried to pee on my own a second or third time and I felt something burst mid urine steam both times (8 months in between surgeries). 3 weeks is NOT enough time to heal. I will not be doing that again. The catheter fucking sucks. But, I would rather wait a few more weeks with it in than have to wait another 8 months for a fistula repair surgery. Also, any doctor can remove an SP catheter for you, if you don’t want to stay in TX longer or have to do it yourself. I took mine out myself and was fine both times. But you do not have to do it yourself.
— IF you are having major fistula repair surgery:
1) I would NOT combine any other type of surgery with it (other than any liposuction you might need), EVEN IF THEY TELL YOU THAT YOU CAN. Do not do it. The failure rate of fistula repair is too high. I have been told that the rate of every kind of complication is 20%. That is bs. No way that is the same percent across the board, for every kind of complication.
IF you are given number statistics, take them with a grain of salt. If that.
- Sort of an additional reason to not do #1 also - Do NOT let them “double up” on incisions. Especially, on a fistula repair. For example, using the same incision for both implants and to repair the fistula. Again, a major fistula is too difficult a fix. That makes no sense to me to make it even more vulnerable in the healing by sharing it with another area of surgical trauma body response.
*Additional note that you may be told is not the surgeons problem but is one of those parts of many of our experiences that doctors do not many times consider, at all;
after going through every we do to get through surgery (some of us with no positive support at all) - to finally be able to stand to pee 1 or 2 times and then have to wait another 8 months for just the possibility to do it again (twice!) is fucking crushing. It is not “no big deal” to just wait another 8 months to try again. It is a big deal. It’s a real big fucking deal. It needs to be the top priority in fistula repair.
There’s a lot more I could add. But that’s all for now.
Good luck out there, men (or whatever you’d rather call yourself, if something else). Consider what others say but always trust yourself.
