Cystoscopy with hydrodistention TOMORROW - HELP

[Chubby_BB]

Hi all,
I'm having my first hydrodistention tomorrow and I'm so incredibly scared. I've been put under before, so I know I'll handle the anethesia pretty well, But I'm terrified about the pain afterwards...

Can anyone who has had this procedure done before tell me how bad the pain is after surgery and what the recovery is like? Is there bruising from the expansion of the bladder? Did you notice any weight gain after? What type of pain management should I ask for? I just don't know what to expect. I scheduled for a Thursday so that I would have a nice long weekend to lay low and recover.

HELP! Any feedback would be tremendously appreciated!!!
BB
:help:

[Mrs. Peel]

Hi, Chubbs

Sorry I have nothing to tell you except that I'm with you. Mine's Friday and I'm not terrified but I will definitely be watching this thread!

Karin

[c2miracle]

Hello Chubby bb, I had a hydro distention last year. I'll be completely honest with you, when I woke up I had the most excruciating pain. It took the nurse 2 doses of pain killer thru IV and finally a B&O suppository did the trick.
Even though I had that painful experience, it is well worth it. I took a weeks vacation from work to give me time to heal. I was able to function a few days later, with lots of rest for the first two days. The doctor asked me what I wanted for pain, I said Oxycontin and that did the trick.
Don't over do it and give your body some TLC.
I had no bruising, and I'm one to bruise very easily. No difference in my weight. I have actually lost alot of weight since being diagnosed.
You will do just fine, no worries :) Keep us posted and think positive :grouphug:

[dg2901]

Other than a couple of painful voids afterwards, I had no problems with this procedure (cysto/hydro/biopsy). Came home afterwards and slept off the anesthesia then went to dinner with the family and resumed normal activity.

Hope your experience is uneventful!
Diana

[SharonA]

:welcome: to the ICN...:):):)

For me, it was much the same as Diana described. It did burn a bit the first couple of times I peed after I came home, but I did not have any other type of pain. I was given a pain med while still at the surgery center and an antibiotic plus was sent home with a prescription for both. I had them filled, took the entire amount of the antibiotics but did not have to take another pain pill. I rested in bed until late afternoon, got up and made myself a bowl of oatmeal and watched TV with Hubby until bedtime. I took it easy the next day just because I thought that was what I should do and resumed my normal schedule the next day.

[KarenAnne]

Chubby bb: I had the cysto/hydro/bladder biopsy before I found this website, so you will be more prepared, thank God. I awoke from anesthesia with minimal pain & the first void was incomfortable. The nurse said I might have some blood in my urine from the biopsy, which I did. I really did not feel that bad but developed a bladder infection from the procedure. I was not given antibiotics or pain meds like Sharon was. I would ask for them if your urologist does not offer them. But I did ok with just pyridium. My procedure was on a friday & I was fine by monday. Please let us know how you make out. I'll keep you in my prayers tomorrow, Karen

[Chubby_BB]

Ugh...I really hope that I'm more like Sharon and Diana and less like c2miracle. I guess everyone's different. I'm just glad to hear from other people who are going through the same thing as me. Sometimes it feels like NO ONE knows what I'm going through with this...

I've never taken oxycotin. My friend told me to ask for percocet, but I've never taken that either. I've only had lortab :(

It hurts when I pee now, so how is the recovery voiding any different from regular voiding? Is it worse? Is there blood? I just keep wondering if I'm doing the right thing. Usually if I take my enablex, prosed ds and prelief I can keep the pain liveable. I asked my urologist what he thought of the Elmiron and he said, "Well, we can use that as a back-up plan, but you don't want to be taking medication for the rest of your life, do you?"

[vm]

Everyone is so different with the procedure... When I woke up and peed the first two times it felt like peeing glass - I won't lie. There was blood. I tell you this so when it happens it won't scare the you know what out of you! LOL But really only the first few voids were uncomfortable.

I think I was given 3 days' worth of Vicodin and that made a big difference. It really helped calm things down. Mostly afterwards I just felt like I was in a bad flare - which I was used to!

I'd do it again in a heartbeat if I had to for some reason. You might also make sure you are given an antibiotic afterward. It is not uncommon at all to get an infection afterward - anytime we are catheterized the risk goes up.

I think I layed around the first couple of days to recover - that was probably more about the anesthesia, though.

I really just felt like I was in a bad flare after. No excruciating pain at ALL for me.

[vm]

What does your uro mean when he says Elmiron will be your "back up plan"? Back up for what?

[c2miracle]

Oh Chubby bb, I didn't mean to scare you. I wanted to be honest and not sugar-coat. Just a reminder of what I wrote, I only had that excruciating pain when I first woke from the anesthesia.
After that settled down I did have a hard time voiding. They would not let me go until I did. You will be just fine and hopefully you will have a experience like the other ICers. We are ALL different :) Think Positive :)

[Mrs. Peel]

I'll be thinking of you, Chubby. Please give us an update as soon as you feel well enough.

[maryla]

I just had one this past Monday. I've had probably over 10 in the past 5 yrs. The last one I had in DEc. was horrible, pain forever, this one however, wasn't that bad. I have a severe case of IC and my bladder always bleeds. I think what helps alot is that my uro, instills a b&o sup after he gets done and gives me a shot of demerol while i'm waking up. Yes, it does hurt to pee that day anyway for me. My hubby and I went through the drive through ate in our car, I came home and went to bed and slept through the night, except for peeing that is.....

Just make sure you have pain meds and maybe preideium(sp)(damn fibro)

Keep us posted.

Hugs and blessings,

[L. Thomas]

What does your uro mean when he says Elmiron will be your "back up plan"? Back up for what?

I think he was probably thinking of a second treatment to help with the IC. Elmiron is prescribed for IC. It is a pill but it can also be added to instillations.

[vm]

I still don't understand - is he saying the hydro is the "first line" treatment? I don't understand what Elmiron is the back-up *for*. I know it's used for IC - I am on it. :) It sounded like he was proposing an alternative, but I wasn't clear what the alternative was/is.

He was saying "you don't want to be taking medication for the rest of your life, do you?" - referring to Elmiron. Is he saying there is another treatment that is not going to be for the rest of your life?

[Mrs. Peel]

From what I've heard, there is a very wide range of IC severity. I'm thinking some people can get by without Elmiron. Apparently, several people on this forum do not take it.

If it's a very mild case, Elmiron, its side effects (Like possible hair loss) and inconvenience (doesn't go with several medications, has to be taken an hour before eating), may not look as good as diet modification and alternate treatments.

This is all speculation on my part, just my two cents.

[L. Thomas]

I am not sure what he is trying to tell you either. There are no treatments that will cure IC. I wonder when he said "didn't want to be on meds the rest of your life" if he was talking about doing instillations. I can see where he could consider instills as not "taking" meds but "using" meds.

Instillation is only treatment I have used. It worked for me from the first treatment. When there was a heparin shortage I did substitute Elmiron in the instill. Elmiron did not help me when it was in the instill and my symptoms did return.

I sure was happy when I could get heparin again.

[vm]

Oh, I know many ICers do not take Elmiron and/or are not helped by Elmiron. It just sounded like he was implying that there was something that could be done to avoid ongoing treatment/medication (like L. Thomas was saying above.) Even alternative treatments or instillations are typically a lifelong, ongoing thing with IC.

It just sounded like he was saying there was a one time thing available - or a temporary thing as opposed to letting her try Elmiron. Most of us will need *something* ongoing. It may not be Elmiron, but we usually need something else.

[bigred]

I hope you feel better soon. Get alot of rest. I am seeing this in my near future soon as I will give myself me time.