I'm alive, but have questions.....

[YankeeCandle224]

I had the cysto/hydro yesterday with biopsys. Afterward the doctor went out to tell the hubby what he saw, but needless to say, hubby knows nothing, asked nothing, and left me with no info. The nurses said he was dictating the surgical report so they didnt know anything either except that the doctor told my hubby that I should have very little pain. LMAO.........hes crazy. I hurt so bad, and I found out why. He did TWO hydros stretching me to 900 cc's then the 5 biopsys, and the cysto..

The nurses in recovery told me they hardly ever do 2 hydros, and I'm wondering why????

Also, he sent me home, even though the pain doctor wanted me to stay. I'm in misery, feel like I have been through the ringer, and have stayed nauseated from the anesthesia. That whole experience was so odd.......I kept laying on the OR table thinking, "Hmmmmm, I'm not asleep yet" and looked up at the anesthesiologist and told him "it takes a lot to knock me out"...LOL...I'd already had some versed so I was a lil loopy. He said something to the effect that I WOULD be out real quick, and thats the last I remember with that mask over my face.

Then the nurses in recovery saying SANDY, BREATHE, YOU NEED TO BREATHE........over and over. I was in the recovery room 4 1/2 hours, apparently a long time because I couldnt come outta the drugs.

So, I came home, in absolute agony, and I'm not trying to scare anyone, I have fibromyalgia, and a ton of other autoimmune disorders, and I hurt so much more from being twisted and positioned, the diaphragm hurts, everything hurts, and my bladder is unreal. I am taking double my normal pain meds plus urised and pyridium, and macrobid, and do feel a tiny bit better today.

I just had to tell y'all this story as even tho I'm a nurse, being a patient is so much different, and nobody in the hospital preop told me I would hurt so bad, except for the recovery nurses and said I could expect to hurt for a while with what he did....

Anywho, have any of y'all had two hydros done at the same time? Also he said my bladder "shrunk" from my last hospital stay......which I also found odd.

Everyone that wrote me private messages, bless y'all's heart. I will write more when I can, I am giving out now, but will come check the board later.

Thanks to all of you for telling me how it is, what to expect, etc. You all are such valuable resourses and friends and I'm lucky I found you all.....oh, and the dx of IC is definate now, all he went on before was my sx, now its final.....sigh

Hugs to you alllllllllll. Love Sandy :love:

[ICNDonna]

When I have a hydro, my bladder is expanded twice. I have spinal anesthesia so I can be aware of what's going on. It may be at least partially the biopsies causing the biggest portion of your pain --- it can depend on where the biopsies were taken.

I hope you feel better very soon.

Sending gentle hugs,
Donna

[YankeeCandle224]

Thanks Donna, I didnt know if that was the norm or not. I just am shocked at the pain. I know you have your procedure tomorrow and I know you've been thru it so many times, but I can imagine it still gives you anxiety. Take care and I'll be thinking of you.

Hugs, Sandy

[Flore]

Hi Sandy!!, I can understan you, because in my case, the hydros are very painful. In fact in the last time, my dr left me in the hospital for 2 nights, and I was the happiest woman in the world!!
I know that when you have the cysto/hydro, the dr has to fill twice, because in the first they check the capacity and the pintpoint bleeding
I have in my support group 3 patients that going with the same dr, well, he does the hydro every 3 months, doesn´t matter if the patient are in relief or doesn´t. All of them NEVER have pain after the hydro, or bleeding, they leave the hospital PERFECT and ready to assist to a party or a restaurant. Everytime that one of them tell me about this I wonder if this dr is a GREAT dr or doesn´t know anything about IC

Is anyone outhere without pain after this procedure??

[YankeeCandle224]

Thanks Flore. I appreciate your input too, and it makes me feel a bit better to know the reason he did two hydros, and that I'm normal to have this pain. The odd thing is that it doesnt hurt my urethra to pee, but my bladder spasms so much it leaves me breathless. As for that doctor, I dont know, I'm new to this IC stuff but if those ladies leave the hospital in such great shape you gotta wonder what he's really doing down there........I sure am glad for them, but wonder, ya know? I dont think I'll ever have this done again, even if it DOES help me.......Its too painful.

Speaking of pain I gotta lay down, but hugs to you for writing.

Love, Sandy

[YankeeCandle224]

PS..........900 ccs is a lot for capacity especially under anesthesia isnt it? I dont know how or why, but if my bladder "shrunk" in a couple months, how much would it have held before? Sure never seemed like it held that much when I would pee up to 30 times a day some days........I'm just scratching my head over the whole thing.....

[Babs RN]

Sandy,
I hope you're doing better. I know that it is much harder for us to be patients, especially when it's chronic as well. My uro distends me twice as well. My functional bladder capacity dropped between Jan and May(functionally) from 1000cc to 150. So much for that nurse's bladder eh? Please PM me or e-mail if you need to unload.

Hugs,
Barb

[dyno]

Sandy,
Just wanted to send you hugs and hope you are feeling better soon.

[Flore]

Sandy:

Belive me, is a very painful procedure, but no everybody understands this, in fact, my insurance, in the begining doesn´t want to pay for an anesthesiolgyst or for 1 night at the hospital. Thanks God now I don´t have problem if my dr wants to leave me 2 nights

I have my hydro 3 weeks ago, and my dr puts 500 cc into my bladder, but after 1 week, in his office, he measured 350 cc, and belive me, is alot of urine for me!!!

I still have spasm after urinate, but everyday are less. I continue with alot of frequency (and I don´t know why), maybe 40 times a day, and only 1 at night. But I can live with frequency, I can´t live with pain!

[Dixiefireball]

Sandy,
Bless your heart i'm so sorry you are in so much pain. I do hope you get feeling better soon.
I do miss our chats.
sending you hugs and prayers
Rhonda

[Jeanne D.]

Sandy:

I hope you are feeling much better by time you read this.

900cc is 30 ounces of fluid -- close to 4 cups. No wonder you have pain! Hopefully once the pain from the surgery subsides, you will feel much better and have less frequency. I never had a hydro but I have had pain after being biopsied, especially when they biopsied the trigone (area in the bladder where the ureters enter), this area is quite sensitive to pain.

Try a hot bath to relax those muscles. Helped me quite a bit. Also helps with any burning.

Gentle hugs to you.

Jeanne

[ICNDonna]

My uro usually manages to distend my bladder to about 700 cc, but that's with anesthesia. My "awake" capacity is much less. The 900 cc is good --- a normal bladder will expand to about 1000 to 1100 with anesthesia. I just hope it will improve your symptoms for many months. My last hydro lasted a full year and I do feel fortunate. It's worth a few days of yuck to feel good for that long.

And yes, I'm a little nervous about going in again. I always am, and probably always will be. I've been watching the Democratic Convention on TV and that's kept my mind occupied for a while. And I have a good mystery book to take to bed with me tonight, along with my vicodin so maybe I'll sleep.

Feel better soon!

Donna

[windwalker]

Hi Sandy I hope you feel better real soon, sorry you went through so much. Take good care of yourself and rest ok?
(((HUGS)))
Dawn

[YankeeCandle224]

Thank you everyone. I sure wish I could say I feel better today but I dont. I still hurt, especially in my abdomen, from the diagphram to my thighs and getting up and down out of bed or a chair is the worst part. Also, I am now passing tissue when I urinate....sorry to be so gross, but after almost no bleeding, now I have this odd tissue thing going on. There are also noises when I pee.....I feel like a freak. I just want to feel better and no pain meds do it, 3 aleve help some with the achiness, but really no improvement. I can only say I am not wigged out anymore from the anesthesia but sure do sleep a whole lot. I'm so glad I'm on macrobid because I would surely be thinking infection by now, but maybe my body just is slow in healing because of the fibro, cfs, crohns, etc etc etc etc..........I just wanna be better and I'm so depressed because after checking my mail and popping in on here I have to go back to bed.

Sorry to be such a downer, but how come I cant be one of the lucky people that just heal overnight and see so much success? :-(

Thanks again for all the support, it helps more than any pain med ever could.

Sandy

[windwalker]

Sandy, I will say a prayer for ya. Definately just rest as much as you can.
(((HUGS)))
Dawn

[Nicole in ATL]

Hi Sandy,

Hopefully the worst is over now and each day you will be feeling a little better.

As others described, I also had 2 hydros with my cysto/hydro. During the cysto/hydro I also had biopsies taken, urethral dilation, and meds put into bladder. I was so worried about waking up in pain, so uro had them give me extra pain meds in IV before I woke up...which helped.

You do have persciption pain meds right? I noticed on your one of your posts that you were taking aleve for pain. The only thing that helped my pain after the procedure was percocet. Which I take now for pain too.

I also had more pain in my bladder than in my urethra...I was surprised b/c I expected a lot of burning...especially since they stretched my urethra. I had a lot of bladder spasms and it felt like someone had kicked me in the stomach, very sore. I also had trouble standing up and sitting down...it hurt. But within 2 weeks I was feeling much better.

I hope you feel better soon!! If you need more pain meds or a different type of pain med, please call your uro.

Take care,
Nicole

[Flore]

Sandy:

I have had 10 hydros since I was diagnosed, and I remember that in the first 2 or 3 I was in pain for 1 week or more.

I agree with Nicole, you must call your dr and tell him about your feelings, and maybe he can give you another meds

I hope you will be better soon, and stay in your bed all the time that your body needs for recover

[YankeeCandle224]

Dawn, thank you so much for the prayers, I need them. I'm forcing myself to stay up for a while because I know being up some and upright helps the healing. I'm glad I got to read your post because it helps me to know people care and are out there rooting for me. I appreciate it very much.

Nicole, thank you for your post as well. I do have pain pills, I take oxycontin for other pain as well as IC pain and also norco and neither the norco (which is lortab with less tylenol) or oxy help much. The aleve is the best thing right now it seems, but awful on my stomach so I have to watch how much I take. I have a seperate pain doctor who rxs all my pain meds and I think I might have to call him today to get something else to help me more. He knows about this procedure and said to call if I needed his help, which I guess I do. Did it really take you two weeks to feel better? I have 3 kids and have to start functioning soon because hubby is going back to work in a few days. My kids are pretty self sufficient but I will still have to cook dinner at the very minimum which seems impossible now.

Thanks for letting me vent. I feel like a big baby sometimes.

Hugs, Sandy

[YankeeCandle224]

Flore, thank you as well. You must have been writing when I was. I'm going to be a good girl and call the uro, the pain doctor and get in the bed. Thanks so much to all of you.

[Flore]

Sandy, if you can´t cook a dinner, because you are sick, in these days ask a pizza or chinesse food. Your family have to understand your pain.

When I´m in a flare, I´m not a big baby, I´m a very small baby!!!!!!!!!!!!!!!

[ICLori]

Hi, sweetie, sending good thoughts your way and wishing for a quick recovery. Please put a call in to the pain doc, I am hoping he or she can give you something to handle this increased pain and you will be feeling much better soon!

Blessings, Lori
P.S. I agree with the ordering food in idea, so you don't have to cook for awhile!

[chinacat]

I understand, Sandy. I just had my first cysto/ hydro on the 19th and I am still in terrible pain (they also did a laproscopy at the SAME time and scraped off endo on my bladder)- I also suffer from all the "autoimmunes"- think we'll ever get a break? Just wanted you to know i"m thinking of you- now I'm going to lie down too!!!

[YankeeCandle224]

:confused: But, I'm still a bit confused because I have the oddest pain in my lower back, kind of a throbing, and I'm not able to lay on my stomach because my bladder feels like a big ball and it hurts to lay on it or even touch it. I guess things are sorta getting better tho and I'm more hopeful today then I have been since Monday.

Thanks to all of you for listening to me whine. I dont deal with pain well, and forget everything I know nursing wise when it comes to me. Basically I stink as a patient.

Hugs to all of you and I hope I didnt scare anyone to death that may be having these procedures done soon. You have to remember we are all different and I have a lot going on physically, as well as shingles that are still hanging around.

Love, Sandy

[Nicole in ATL]

Hi Sandy,

I'm glad you have pain meds. I hope they start working better!! You can always call the pain doc and ask for something different. I hope you are able to rest. Just take it one day at a time and get help from anyone who offers. You can order food in, as others suggest.

My bladder was really sore too and I didn't like things touching my stomach. I was disappointed after the procedure b/c I didn't get the benefits that other's describe.Stretching the bladder and urethra didn't improve my symptoms. But I am really glad I had the cysto/hydro b/c that gave me a more conclusive diagnosis of IC.

I went back to work after a week, but had to force myself to do it. Had to take alot of pain meds. The pain lessened slowly over time.

Thinking of you,
Nicole

[ICLori]

Sweetie, (((HUGS))) I don't think you are whining at all, I think you are hurting and scared and need relief soon!

I hope so much you will be feeling much better very soon.

Blessings, Lori

[Sarojini]

Big Hugs, Sandy :grouphug:

I hope you are beginning to feel better now!!!!

[YankeeCandle224]

Thanks for the well wishes. Just wanted to pop in and say I'm ok here, still hanging on. Was SOOOOOOO nauseated and vomiting last night that I had to call the uro to get some anti nausea meds. I feel a bit better now.

The uro asked how I was doing, told him about the basketball in my stomach, and how tired I am and he said I sounded normal, except for the nausea.

Sooooo anyway, I'm moving on day by day and every day the pain gets a little better, but the fatigue just never seems to get better as I sleep almost half the day then all night too.

Also I've been peeing about 25-30 times a day and told the uro that, and he said "well, what can I do for you on call?", so I guess that when I have my followup appt we will address that issue. sigh

Thanks sooooooo much to all of you. Hugs, Sandy

[Iris]

Hi Sandy, hope that you are starting to feel a little better now. Take care and let us know how you are getting on, soft hug Iris. :hi: :grouphug: