I'M SCARED!

[Kara]

Hi everyone!

It's coming down to my cystectomy and neobladder surger, just a few weeks away. Although I am very excited to be going through with it, I have to admit that I am getting really scared. I have 1000 questions! I'm wondering if there's anyone out there who would be willing to try and answer some of them for me. Those of you whom have gone through it. Your answers would be greatly apprecited and may even ease my mind a bit.


1. As an IC patient, whenever I woke up in the hospital with a catheter in, I was ready to jump out of the window in pain! Not even the STRONGEST pain medication could take that pain away. After the cystectomy and neobladder is constructed, will my urethra still feel this way? Is the feeling similar or do you not feel anything? I guess what I mean is, after they remove and reconstruct the new bladder will the old urethra still feel the same as it did when it was attached to the Interstitial Cystitis Bladder?

2.Do you wake up with that horrible urge to uriinate?

4.What do you feel like after going through a 10-12 hour surgery? Do you throw up? I hate throwing up!!???

5. Do you remember being in the Intensive Care Unit? If so, was it horrible?

6. Did yo have an NG tube? Where did it come out of? Did it hurt?

7.Did any of you have a pain pump? How does it work? Where do you feel the pain????

8. Did any of you have a spinal epidural nerve block while in the hospital? If so, how did you feel?

5. What tubes are coming out of you and from where? How do you breath? Is there an oxygen mask or tube in your nose?

6.After all catheters are removed, How do you know when it's time to empty your new bladder?

7. How many hours do you have to empty it at first and then after you recover how long can you go with out emptying it?

8. Do you have to wear a pad at all times in case of incontinence?

9.Do you lose urine often? Do you wet the bed? How much leakage is there during the day?

10. When I catheterize my urethra, will it hurt like it did when I had the IC Bladder?

11. Does mucuos come out and if so how often and how do you clean it and minimize it? What happens if it gets clogged with mucous?

12. Do your bowel movements change as a result of losing some intestine? For example I have a bowel movement once a week (will this change drastically)?

13. What is the first bowel movement like? Does it hurt?

14. If you have a spinal catheter for pain meds and or epedrual nerve blocks, where is it? Can you move around? Do you have to sleep on one side or the other? Can you sleep on your back?

15. If I am nauseated do they have more than compazine to make you feel better?

16. Can you sleep or do you have to keep waking up when the nurses come in? How often do they wake you?

17. Do they bathe you, do you feel clean? Can you brush your teeth or rinse out your mouth so your breath does not smell?

18.Are the keigal excersizes painful?

19. Do you have still have control over your bowels after the surgery? Will I be soiling myself while there are visitors coming to see me?

20. How long were your surgeries and hospital stays?


If any of you would like to take me through a step by step surgery and hospital stay, I would love to hear it. I'm so nervous!

I have this big fear that I am going to die during the surgery!


I also have a fear of throwing up all of the time while I'm in the hospital!

Thank You for your input

Kara

[justdeb1]

((((kara)))))

calm down hun okay? I cant answer the bladder surgery part, but I've been through enough surgeries to know that (especially one in Dec 01 that was ER life saving type) - so.....what you are feeling/thinking is NORMAL. Its normal to feel scared and frightened okay? The doctors and nurses will take good care of you from a surgery/pain point of view okay? You will have ALL the meds you need and then some - pain pumps are easy and will more than likely be what you are on in the beginning - you get to press the button every 6-10 mins and it admisisters the dosage, no more, than that dr. rxed for you. All the tubes and "am I going to hurt" and all of your questions about surgery are normal fears each of us face, whether it be just getting your tonsils out or having major surgery - no one likes to be put under and not remember anything - its scary. But speaking from having WAY TOO MANY surgeries, without answering each question individually - they are are normal, and you will be in great hands - they will take care of your every need and then some (except that hospital food [img]biggrin.gif[/img] make sure you gotta buddy that, when you are allowed to eat, sneaks ya in some good stuff k?)

The other questions re: the actual removal, others that have had it done will have to answer, but from a general surgery point of view (in Dec 01 they had to slice me from sternum to pubic bone because I had a severely obstructed and cut off due to scar tissue small bowel) - so....that wasnt any fun and I have this huge scar (but the surgeon did one HE&& of a job (pencil thin scar) and I was in for 5 or 6 days (cant remember, I know I begged to get out the day before my birthday, and the doc finally said okay)....so....not to worry okay?

Hang in there and ask your dr. and anasthesiologist all of these questions as well...you trust this dr enough to perform this surgery on you..you should trust him enough to give you honest answers hun k?

Tons of hugs
Deb

[ICNDonna]

Kara, Deb is right --- it's totally normal to be scared of surgery. I haven't had a surgery that put me in intensive care, but I did spend some time in the unit and I got excellent care and there was a nurse at my bedside every minute of the day.

There are different medications for nausea.

You will be given enough medications to keep you comfortable --- and when it's all over, you will have only faint memories of the worst times.

{{{{{{{{{{{{{{{You}}}}}}}}}}}}}}}}}}}}
Donna

[Judith]

Kara, as others have said your fears are normal. Some of these questions you asked can only be answered by your surgeon as all surgeons have different ways of doing things. The NG tube is in your nose and they usually put it in after you go to sleep. If it makes your throat sore ask for a spray to numb your throat.They do not take it out till your bowel starts to work again. I have woken up in ICU for other surgeries and it is not bad since there is a nurse pretty much with you at all times to take care of all your needs. They have lots of meds for nausea, make sure you tell your doc how freaked out you get by throwing up and he should make sure you get enough meds for that. The pain pump is wonderful since you have control over when to get your pain med. There is a little button you press as the need arises. As for the urethra hurting I can not answer that one since my urethra was taken out along with my bladder. I have a stoma that I cath and it does not hurt to do that. In the beginning you will be on a schedule of when to cath, and slowly the time intervals increase. I now cath about 4-6 times in a 24 hour period. Since I have an internal pouch I can tell when it is time as I feel a pressure. Sometimes I dont even feel that, but I know I can't go too long between cathing because that is the way an infection can start, so if it has been awhile, I just go cath even if I don't feel the pressure.As for your bowels, you may have diarrhea at first and then with time they will readjust. This does not happen with everyone, but if it does it is not uncommon. I had my surgery for my pouch 10 years ago and back then they didn't push you out of the hospital like they do now. I was in for about a month. Now adays they usually have people in for a week to 10 days as long as there are no problems. You will most likely have something called a Jackson Prat tube in your new bladder as well as a drain and catheter, but ask your doctor he will let you know what he plans to do. As for oxygen it all depends on how well you are moving air in your lungs. Most likely you will wake up with oxygen- it is no big deal and they take it off soon after. The most important thing though is to make yourself get up and walk, because the sooner you can move about the quicker you will heal. It will hurt when you first get up because of the incision, but make sure you hit the pain med button about 10 minutes before they get you up which will help. I think you will do fine!Good luck Kara. Please feel free to email me [email protected] if you have more questions. Judith [img]smile.gif[/img]

[karhopp]

Dear Kara,
I can't answer all your questions because I don't have an internal pouch. But I have just been through the surgery and got the external pouch. The surgery is not fun. You are full of stitches, inside and outside. The NG tube is in your nose, goes to your stomach. It does not hurt, they put it in after you are asleep. It also does not hurt coming out. They tell you to hold your breath, and they pull. Only takes a second. They probably won't take it out for a few days. I don't know if you will be throwing up when you wake up. I didn't, but it's a possibility. I was throwing up all night the night before. I got sick from the antibiotics that I had to take the evening before on an empty stomach. The day before is no picnic either. You have drink this awful stuff, and can't eat except jello and broth. And you probably won't get anything to eat for several days after your surgery, but don't worry, you won't want anything. I was in a lot of pain after my surgery and had a morphine pump. My surgery was on a Thursday and on Monday I made them take it away. It made me feel crazy in the head. It took 2 more days to clear the morphine out of my system and for my head to clear. I did get an epideral nerve block before surgery, but unfortunately it didn't take. If you get one and it takes, then you won't feel any pain. At least that's what I've been told. Bowel movements will probably be messed up for awhile. At first, they will hurt, especially if you have to push and strain. Everything down there will be very sore. I am still having trouble with mine. Seems they are sluggish and slow. From the time I feel like I need to go till I actually can go, can take quite a while. By the time I get to the toilet the urge can be gone, and then it comes again, and then gone again. This can take several trips to the toilet till if finally decided to come out. I was in the hospital for 9 days with my surgery. This can vary from person to person. Anywhere from 6 to 12 days, I was told. The first few days, a nurse's aide will give you your wash pan bath. That depends on how much you are able to do yourself. If you are doing real good, they will make you give yourself a bath. And they also bring you your toothbrush and toothpaste so you can brush your teeth. When you can get up and walk you can go to the sink and brush your teeth. It is also possible that towards the end of your stay, you might even be able to get in the shower. But you might not feel like it. I hope you will have someone that can stay there with you most of the time. I found that they don't come in and check on you very much to see if you need anything. But it does seem that the minute you fall asleep, they are there waking you up for something. But while you are awake waiting for them, they don't come. Maybe your hospital will be better about that than mine was. Unless you have serious complications after your surgery, you should not have to be in the intensive care unit.
I totally understand you being scared. I was so terrified myself as my surgery approached. The chances of you dieing during surgery are very slim, so don't worry about that. I had complications from my surgery and had to go in the hospital 2 more times. I did almost die the third time I was in the hospital from an infection. Please remember that everyone is different, and not everyone has complications. And not everyone has the same experience and the same problems after surgery. Please feel free to email me if you want to talk more about it. My email is [email protected] My thoughts, prayers and best wishes are with you. Good luck to you. Love, Karla

[Yvonne]

Dear Kara,

I remember being in the same position re: being scared like you are four years ago when I was supposed to go in for bladder augmentation. In fact the night before I almost cancelled out of the surgery I was that scared of the surgery and if I was making the right decision and on and on it went. Four days before the surgery all I was allowed was clear fluids which as most people know can get so monotonous. The day before you take this stuff to completely clear out your bowels, so at the end of it you are feeling a bit dehydrated. I went in for the surgery and because my veins were so bad they put in an epidural pain delivery system for after the surgery. After I was asleep they put in the nasogastric tube which stayed in for about 6 days. When I woke up after the surgery I could hardly believe that I had had the surgery. I felt nothing below the waist so I had total pain control the whole time after the surgery. Would recommend it to anyone. I always have trouble with nausea and vomiting after surgery but they controlled it fairly well. All though I thought they could have done better, I dry-heaved a lot as with the tube in the nose there was really nothing to come up.
I was in a step-down unit which is a step down from the ICU. I stayed there for six days where there are four patients and two nurses. They washed me the first day of surgery and after that they brought a pan to wash. I was supposed to get up and walk the second day after the surgery but due to the epidural I couldn't walk as I had no feeling in my legs, but the pain control was constant. I walked the third day with the help of the nurse and the physio and you get physio exercises to keep your lungs expanded .
I was allowed ice chips with the naso-gastric tube in which was a real help as I felt so dry all of the time.
After getting out of the step-down unit, I went to a regular ward and stayed there for five more days for a total of 11 days in the hospital. I had an superpubic catheter in after the surgery and for some time after the surgery until I got infection in the site. It rested the augmented bladder so it could heal properly. I had to use a leg bag when I got home but the super pubic catheter was not to bad. Unfortunately for me the augmented bladder rotted in a month and I had to have more major surgery in 9 months after that to have the ileo conduit, I only regret that I didn't get them to take the urethra out at that time as I am having so much pain right now. I am still waiting to have my surgery as there is more doctor's actions pending grrrrr.
I hope I have answered just a few questions for you and hope that you are bit more at rest with the thoughts of your impending surgery. I will be thinking of you and will be sending you good wishes. Let us know via your husband how you are doing ok.

All the best Kara, you deserve the next 25 years of your life pain free. I am so glad that you were able to get treatment at your age. When I was your age I had to go another 18 years with the agony of it all before I was diagnosed and put on medication. It was to late by then and my bladder was so diseased and shrunk that I was in the bathroom all day and all night.

Good-luck.