I had a cystoscopy with hydrodistension and biopsies for my interstitial cystitis today. I’ve had two accidents this evening, and both times there’s been a lot of blood in my urine. My urologist warned me to expect that since she took more biopsies than she usually does during a hydro, but it’s still disconcerting to see all that blood when I change.
I’ll get more Botox in a few weeks, and combined with the hydro I may get to be continent for a few months. Even if the incontinence continues, the hydro and Botox both help to reduce the amount of pain I’m in.
The blood has let up. I still had some blood this morning, but I cathed a little while ago and there were just a few clots stuck in the catheter eyelets. There’s probably more clotted blood in there, but it’ll work it’s way out.
Now I just need to wait for the pain relief to kick in. In the meantime, I quit taking the naltrexone that helps with itching from my liver problems, because it also blocks opioid pain meds. I’ll put up with more itching to be able to take Norco for my bladder pain for a few days. I’m still hung over from the anesthesia, and my throat is sore from the breathing tube, but that’ll clear up in a couple of days.
I was in a surgery suite at the hospital for the cysto/hydro, when the doctor snipped little bits of my bladder lining to send for pathology. If it’s something worse than interstitial cystitis, I’ll find out soon enough.
I’m thinking about taking to my urologist about bladder removal. I’m so tired of the pain, the incontinence, and the constant feeling of needing to pee. I think the odds are well over 50% that I’ll need to have my large intestine removed, so I’ll end up with a permanent ileostomy. There’s not that much difference between one ostomy and two, and the logistics of a urostomy bag can’t be any worse than the logistics of diapers.
But that’s a ways down the road. I won’t know for a few months if I’m going to lose my colon, so it’s a little early to start planning for it.
The bleeding has stopped. My bladder is still extremely sore (and so is my throat, from the breathing tube they put in when I was anesthetized) but it’ll get better over the next couple of weeks. On two previous occasions when I’ve had this procedure done, I’ve ended up hospitalized overnight because of pain and inability to pee at all. This time the pain want as intense as some of the earlier times, and I routinely self cath so not being able to pee is no longer an issue.
We’ll see what the future holds. I’ll find out in September or October whether I’ll need surgery for my UC, and I can have the conversation with my urologist about whether to keep my bladder then.
I feel like an old car whose owner is stripping off all the parts that are broken but that won’t keep the car from driving. In the fall I might lose my exhaust pipe and my coolant overflow tank. :ROFLMAO:
Just to be clear, this is a fairly normal aftereffect of the procedure I had. If it hasn’t quit, I probably would have gone to the emergency room, but it’s quit now. It still hurts, but it’s getting better.
Mostly it’s just gross and unpleasant to pull off a wet diaper and unexpectedly find a bunch of blood-tinged pee in it.
Okay, but please make sure to keep the Doctor’s up to date on this. I don’t want you to lose your life to something like this. While they could clone your body, they can’t clone your soul. You are irreplaceable. While we could find someone else that is like you, it’s only going to be that. Like you, they aren’t going to be you. There can only be one you. And you are Awesome. So please be sure to keep taking your medications, and keep your doctors up to date and go to ALL of the follow-up appointments that you get. Also would help if you get a chart made up so that you could track the progress and share it with your doctor as it will help them out with ensuring that you get the proper help that you need.
they give me the chills