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Dianne
12-19-2005, 07:02 PM
Just checking in. Well I did it.

The good parts: I found a Dr. that was willing to accomodate all my needs - sterile water, not saline, no lube on the scope, can't clean me off with anything but sterile water, etc. He also found me an anesthesiologist willing to do plain bupivicaine spinal, no versad, atropine, etc. and run the LR very slowly and least amount possible to avoid the most sodium, etc. The roads were bare/dry going/coming, we beat the snow storm headed our way. My husband was able to come. The nurses were willing to accomodate all my requests too. My capacity is now 910cc UP from 625cc 2 1/2 yrs. ago. The appearance is also improved which is bizarre considering pain-wise I'm off the charts in the last couple of years. He said he wouldn't even know I have IC pre-distension but afterwards it looked pretty angry. Maybe the weekly solu-cortef has improved the lining just not much the pain. I think I got a pretty good stretch too with 910cc so I'm so hoping this will help me.

The bad parts: both last time and this time I didn't get very good pain control with spinals during the procedure. I could still feel way more than I think I should have. The dr. offered me IV meds. too but I didn't want any. Afterwards I could feel bladder pain all through the recovery period even though I couldn't feel my legs, butt, etc. I could still feel a lot of bladder pain. After 3 hours I knew I would need to void with 600cc total in. Tried to stand, couldn't, knees still buckling. I told them I needed to void. I suggested a bladder scan. Took FOREVER for them to get it. She got 216cc by scan but I knew that was wrong. I can usually tell exactly and was putting it more like 400-500cc and the pain/pressure were getting really tough. I insisted we get me in a wheelchair then and to the bathroom. Did that. I knew as soon as I sat that I wouldn't be able to go. Sat 15 mins. trying but couldn't even feel my butt. I rang the bell and told her to please bring me an 8F pediatric cath, blanket to kneel on and an emesis basis. She did that but said I wouldn't be able to kneel. It was tough. Kept falling and the cath while it looked like a red robinson latex it was hard but I was desperate and no feeling anyway so got the job done - got almost 800cc! The relief was unbelievable. Back to bed.

I was really anxious by then to get home before the storm. Still couldn't walk or pee. Could only turn and pivot but I insisted they let me go and off we went. It's 120 miles home with only one rest stop where I sat some more but couldn't go. Don't care to try and resolve that kind of problem again in zero degrees temp. at a roadside bathroom. Couldn't go. Headed on home. Finally in my own bathroom 7 hours after the spinal, I went.

I'm in a lot of pain tonight. More than I ever remember on the other two and have quite an egg from the spinal that is major sore but I'm packing in 800mg. of motrin and 300 mg. of neurontin and two azo and calling it a night. Thank you to everyone that have been so supportive to me, a non-responder that nothing has worked for. Let's hope the hydro does something this time.

Cheries
12-19-2005, 07:33 PM
OMG! You have been through hell and back today! I can't even imagine! I have had times where I went into terrible retention and I think it was one of the worse pains there is. I can't imagine after a spinal. Why didn't you get a general and have them leave a catheter in? Hopefully your bladder will calm down in the next day or so. Are you spasoming? You might need a bladder relaxant after all the trauma. I had a distention before they knew I had IC inwhich I was totally awake. It was one of the most traumatic experiences I have ever had. They filled me with over 900 cc's and I was literally screaming and clawing at the walls. (The nurses told me to calm down and I would just have to handle it.) Of course it only made me worse for awhile. My capacity is about 400 cc's, so you can imagine how fun that was. Oh the joy.

Well, the worst is over. I hope you are feeling better tomorrow.

emilyrose197377
12-20-2005, 01:44 AM
O am sorry for all you went through. I hope that the hydro helps you. I know how you feel with the retention I have retention 24 hrs a day I know how it can hurt. I hope you recover quickly.


:grouphug:

dyno
12-20-2005, 03:23 AM
I am glad it is over with for you and hopefully you will get some relief from it. Take it easy and rest now!

mallenajolie
12-20-2005, 04:01 AM
hope you feel better. i have been in your place. was in retention with over a liter at one time. i never thought of it, but i bet they did the bladder scans wrong. i ended up in the er that night and spent the night. a week later my bladder starting hemmoraging. i told my uro i would never ever have another hydro, and he has never asked again if I want one.

Sarojini
12-20-2005, 04:22 AM
Wow, that sounds rough!!! :grouphug: I hope you feel better soon after all of that!!!!!

Dianne
12-20-2005, 05:01 AM
I know with a bladder scan you need to make sure it is centered probably so we usually scan three times. There's a pic on the screen that tells you if you're centered which I couldn't see flat on my back. My part in it is I should have asked her to redo it. To their credit, they brought me a cath soon as I asked and no one made an issue out of no one caths me but me. It just took too long to get the scan over. I have pain with even a few drops although I can last upright much longer than lying down which I can't last even 4 mins. if I'm awake and without drugs. No one knows why lying down sends me over the edge. I've never heard that from any other IC patient. It would almost seem like a nerve but I've had numerous MRI's and seen numerous neurologists and no one can find anything. Oh well... Next time I will take my own catheter but other than that, I think it went as well as these things go.

mallenajolie
12-20-2005, 05:14 AM
I am glad it went well. Mine was a little bit of a nightmare. I was in a lot of pain,and I had to wait till they called my uro to get any meds. They didn't know what to do with me. I don't think they knew I was in retention till they called my uro. I had a d& c and lap at the same time, so I didn't know what it was.
My uro suggested I think about more agressive treatment, and I reminded him of my last surigical experience, and he remembered and kind of backed off. I think he felt bad it went that way.
take it easy, use the heating pad, ice whatever works for you. (have your husband) :angel: rent some movies and cuddle with your cat or dog if you have one.

ICNDonna
12-20-2005, 05:47 AM
When I have a hydro, I always have a three-way catheter overnight --- it makes it much easier for me.

Donna

louisianaman
12-21-2005, 05:10 PM
hi, this is directed to anyone that can help me. I was diagnosed with IC 6 months ago when i had a cysto done. I had one kidney taken out two years ago and was diagnosed with kidney cancer. I only have one kidney left and today I had to have an emergency cysto done. What I want to know is if anybody knows if this disease could lead to bladder cancer. I also want to know that since I only have one half way decent kidney is if this disease could cause more problems for my kidney. I now am told that I have to go through cysto every 5 months so it doesnt put too much pressure on my remaining kidney.My urologist is great for my kidney problems but knows nothing about my IC. What should I do and should I be worried. I really dont know about IC at all and dont know if Im doing anything right or wrong towards this very aggravating disease. Anybodys help would be greatly appreciated.

Thank you,
Louisianaman :toilet: :bonk: :headbang:

Dianne
12-21-2005, 06:59 PM
Just an update. My first night wasn't too bad after I took two Azo, motrin/neurontin. Yesterday was awful. Last night was worse. This morning was bad. Then it started to lift a little and I actually got a little bit of a nap, something that never happens for me because I can't lie down for more than 4 mins. without motrin/neurontin. So I was blown away to wake up like maybe 20 mins. later and was quite elated about that. It's the first wee bit of hope I've felt in a long time. I don't know if it will last. But the rest of the day was decent too.

massagedoula
12-21-2005, 07:54 PM
Lousianaman,
IC does not lead to bladder cancer. You may have more replies if you post in the "newly diagnosed" or "symptoms of IC" categories, rather than jumping onto another person's thread.

Dianne,
I hope that when the soreness of the hydro wears off you get a nice long remission....Thinking of you!

Dianne
12-22-2005, 05:04 AM
Well I'm bummed. Last night was dreadful. I had taken a lasix yesterday morning which I have to take as needed for the swelling from the motrin/neurontin and I've noticed I get better for about 12 hours after I take one, possibly because it lowers the potassium which is an irritant, no idea, just know I get a little better. So I'm guessing my nap yesterday was from that and not the hydro. I feel very sore and bruised again now, just like after the hydro. Now I'm afraid I won't get any relief out of this. I keep telling myself it's early. I'm on day 3 so trying to still feel hopeful here.

Janie Miranda
12-22-2005, 11:55 AM
Dianne,
Sooo sorry to hear that you are having a rough time with it. I hope you'll start feeling better soon and will get positive benefits from the hydro.

coco1234
12-26-2005, 06:18 PM
My uro has planned a hydro for feb., and im really scared, do you stay in the hospital over night? Is it worth going through?? Is there any complications or things it can make worse?? Could anyone explain what they actually do and the process of recovery, my doc said they put you under for this procedure and I wont have to much pain afterword, but I have heard that before for other Non-IC procedures I've had so I dont know if I beleive that...so if Anyone isnt to busy I'd love to hear more about this, Lots of Loves!

quiltz
12-27-2005, 11:45 AM
Hi Diane,
Sorry to hear all you've been through ....and I hope you're feeling relief soon.

I wish some of us could come over and give a gentle hug ...to make you feel better!
Liz

mary124
12-28-2005, 03:56 AM
Dianne:

Hope you are feeling better! Much love, Mary :grouphug:

mallenajolie
01-03-2006, 03:23 AM
I would go through and have this if you haven't already. The first one isn't usually too rough. It was my third one which was rough, but I had other surgery with it, that made it rough (D & C and lap). I would not recommend it, having all that surgery