03-20-2003, 06:14 PM #1
- Join Date
- Apr 2002
- Syracuse, NY
Revisit my surgery for those of you whom want to know more about the recovery.....
TODAY,Friday March 21, 2003 I CATHETERIZE MYSELF EVERY 4-6 HOURS. I DON'T FEEL ANY URGENCY, FREQUENCY, RETENTION, OR RETENTION PAIN.I DON'T FEEL ANY IC PAIN EITHER. I TELL PEOPLE IT FEELS LIKE A DOWN PILLOW REPLACED MY OLD IC BLADDER. I AM DOING WELL EXCEPT FOR SOME INFECTIONS, WHICH, WE ARE CURRRENTLY WORKING ON CONTROLLING (THE FIRST YEAR CAN BE A BATTLE WITH THEM UNITL THE NEW BLADDER ADJUSTS TO ITS NEW LIVING QUARTERS.) THE INFECTIONS DO CAUSE PAIN BUT IT'S CONTROLLED WITH PAIN MEDS. I AM STILL 100% HAPPY ABOUT MY NEW BLADDER AND WOULD NEVER GO BACK TO THE IC BLADDER IN THIS LIFETIME.
My history ---
Surgery(June 14th 2002 was the initial surgery at 7AM in the morning)
Each day is a struggle. Sometimes I feel good for a few hours and sometimes I feel like I was hit by a truck. Thank you so much for your kind words and support. When my doc went into my abdomen he was SHOCKED to say the least. My bladder could only hold 3 oz. Any more than that and it would start to leak. He said there were so many adhesions and scar tissue in there that it felt like a ball of cement and was the size of a walnut. The bad part is that my IC was so bad that the scar tissue infested the entire outside of my bladder. This scar tissue was inflaming all of the other organs in my body. The surgery took 10 and 1/2 hours All of my other organs down there were swollen severely. SoÖÖÖ..Yes I made the right choice. He told my family that there was nothing else we could do. I had a bad allergic reaction to morphine and had to be restrained by my mom, dad, best friend, grandma, and Allen. I was trying to run away from the hospital because I was in so much pain and the morphine made me crazy. For 3 hours they had to hold me down so I would not flee. I tried to bite the IVís out of my arms. I kicked, screamed, yelled, cried, and said every bad word known to man. All in front of my family. EMBARRASSING!!!!!!!!!!!!!!! To say the least. I was supposed to be in the ICU for 5 days but they needed my room for a stab wounded victim. I went up to the regular hospital floor for 3 more days, the hardest part was not being able to make a bowel movement. Unfortunately our stomachs wake up way before our bowels do after that long of a surgery, so we did have a lot of trouble regarding that issue right up until 14 days after the surgery when I could finally go. I came home and started recovering in my own bed and seeing a visiting nurse daily. (By the way, my Grandmother was a nurse for 30 years and stayed by my side for 2 weeks.
2 Weeks After Surgery
I had to go back into the hospital 2 days ago because I could not stop vomiting and I was having severe back pain. They did X-Rays, Cat Scans, UltrasoundsÖÖ.the works. They found a kidney stoneÖÖ.YAY!!! The kidney stone is not ready to rear yet so he will be blowing it apart in a few months from now. He was afraid that I had already been through too much at this time so he wants to leave it be for a bit.
The recovery time is about 3-6 months, so I have a LONG way to go. The hardest part is trying to keep still and not go out. I hate lying in bed all day. The pain from where the incision is does not hurt at all. It goes from 2 inches above my belly button and all the way down to the pubic area. I have 2 tubes left in me, a supra-pubic and a Foley catheter. (see below for pictures of the surgery) I have a nurse that comes in daily to check up on me and change my dressings.
2 and Ĺ Weeks After Surgery
Our 1st year Anniversary was on the 29th of June; my surgery was the 14th. Keep in mind, I have several tubes and bags and staple dressings. So I had to wear somewhat baggier clothing than I normally use. Otherwise I would have worn a sexy tight dress, but it was just not possible. I donít even know how I pulled off what I wore last night. My Hubby wanted to try and make the best of it so we ordered a 3 course meal from a phenomenal Italian restaurant down the street. My mom sent us 50 dollars to help pay for it. I set our new table, put some of our wedding pictures on the side of the table where no food was occupying and lit 2 wedding candles that were a gift from one of our guests. (see below for pictures of the Anniversary) While my Husband went to get the food I washed my hair, sprayed my body with some great body spray from bath and body works and anchored my supra-pubic catheter down as far as I could get it. I removed my bed bags from my catheters and hooked the leg bags on. I secured them snuggly to my legs, threw on a black slip, a new skirt that I had never worn, and a new black silk shirt that my mom bought me that I had also never worn. I put some great strappy sandals on, did up my make-up, and waited in the candle light for my Husband to get back. When he walked in he dropped the food on the table and gasped! ďOH MY GOD, WHERE IS KARA AND WHAT DID YOU DO WITH HER!!!!!!!!!!!!!!!!Ē He told me I was stunning and he cried tears of joy and love. I pulled off 50 songs on the computer that were played at our wedding last year and we listened to all of them as we ate and after dinner. We cried, laughed, and just held hands. I wanted to make love to him so badly it hurt down there!!! I pray that one day we will be able to make love again with out pain. He went to bed and I stayed out in the candle light and listened to the soothing music. Later I opened our balcony door and sat outside and listened to the music one more time. It was one of the best nights of my life and I will NEVER forget it. I guess God was looking out for us today and made it possible for us to celebrate the best way we could.
3 Weeks After Surgery
The pain is minimal if I take it easy. If I try to do too much I have to take a pain killer. My husband helps me take a shower. The catheters have to be irrigated because the new bladder is made of intestine and the intestines create a lot of mucous. We irrigate them with saline 3 times a day. The supra-pubic catheter is the grossest thing I have ever seen. There is a hole in my pubic area where it comes out of. Itís ugly, scary, and it hurts when it gets moved around. Gross I know, but this is part of the deal. I have been eating regularly. I have been able to have regular bowel movements but they are runny, this will pass with time, as they cut 1 foot of my small intestines to make the new bladder. I can walk around a bit but not too much. I like to keep my house clean so I try to pick up here and there but I get yelled at by my HusbandÖÖÖonly problem is he wonít do it so the house will look like Hell if I donít keep up with it. He does the heavy things like vacuuming and taking out the garbage. Mostly, I lie in bed and listen to books on tape. As of yesterday I have been getting extremely nauseated and dizzyÖÖÖI had blood work done. I have a very low red blood cell count and a very high white blood cell count. I am needing more fluids (Gatorade is the best) and iron tablets, as well as continuing my antibiotic, Levaquin. I have an appointment with my Doctor on Wed. I think the Foley catheter may come out then, which means I will have to start learning how to get the urine out with a small catheter. Overall my new bladder is healing well and I am following a normal recovery. It just takes one baby step at a time! In 3 months I hope to be my crazy old self (only with a new bladder) J I hope all goes well with self cathing!
4 and Ĺ Weeks After Surgery
Every day I feel a bit better but I know it will take lots of time to be back to myself. I am learning how to self cath and itís really hard and I hate it. I was leaking from the urethra after we took the Foley out a few days ago. He said that the 20 French Catheter that was in my urethra stretched it out and that it will take some time to get it back to its normal size. He also said that the supra-pubic is causing the bladder to expand and contract abnormally because itís a foreign object in there. He put me on DitropanXL for the leaking and itís working. No more leaking anywhere. I hate my supra-pubic tube! I originally had 4 sutures holding it in but now I only have one and it hurts so bad because itís pulling on the skinÖÖÖÖI canít wait for it to come out. I will be talking with my doc on Monday and weíll reassess the situation he may want to take the supra-pubic tube out. We are still having trouble with the mucous but we irrigate three times a day. Right now I am cathing every 2-3 hours. I hate doing it, I cry every time. My husband helps but I want to be able to do it by myself and I canít right now. I hate it. It hurts at the opening of the urethra but once itís in I donít feel a thing. Itís just learning how to get it in that is the problem. I can report to you today that there has been no pain, no urgency, no frequency! I lost 3 pounds but have already gained it back and I have no nausea at all. The only thing that hurts is the supra-pubic tube that is hanging barely on one sutureÖÖÖÖThe sooner I learn how to self-catheterize, the sooner this ugly tube comes out.
5 Weeks After Surgery
All of my tubes are now out. The visiting nurse does not come anymore, as she is not really needed. I catheterize myself every two- three hours. The catheterizing has gotten much easier as time has gone by. I donít need any help with it and Iíve already done it in 3 public places with no trouble at all! Itís a part of me now and I donít mind doing it as long as it means a better life. My doc told me it would not hurt because he cut the nerves from my bladder to my urethra or something like that, and he was right. I canít feel the catheter at all in my urethra or my new bladder. The only time I can feel it is if I am poking the wrong spot. Hehe!! Iím doing really well, a little urgency if I forget take the Ditropran XL, but I was told this will pass with time; no frequency, and no retention pain, although, sometimes I still have surgery pain from having the bladder removed, scar tissue removed, 1 foot of intestines cut off to make the new bladder, and the making of the new bladder, and the hook-up and recovery of being out for 10 and Ĺ hours. I take my pain killers only as needed.
This past 3 days I have had severe diarrhea from a bug I caught from my Husband. I was really sick as you can only imagine after having this surgery on top of it. Iím feeling a bit better now and will continue to report my story.
I have to go back to work on Aug. 7th, that is when my short-term disability runs out. I am as of now for the past 6 months, been getting paid my full compensation $755.00 every 2 weeks. On Aug. 7th, if I am not able to return I will lose 40% of my salary and my heath insurance. Allen still has no job and I am freaking out. I just went out into the community to see if I could run some errands and I am already at a pain level of 7, so I donít know what is going to happen to us. I am scared and really stressed outÖÖIím hoping that new door opens real quick and we can get out lives back on track.
If anyone has any questions they would like to ask, feel free to do so, I am a very open person and open to any questions. I am not shy about this surgery, who would be after something like this? No question to me is considered dumb or embarrassing, so ask away. I am here for information and support. I will answer questions as I feel up to it, it if takes me a few days to answer, donít worry, I didnít forget. I have a few questions myself for those of you whom have had experience with the Neobladder.
6 weeks after surgery
July 25th 2002,
Today my bladder is well. Actually my bladder and urethra have no feeling at all. When I feel pain, it's due to the other organs around my new bladder adjusting to this new bigger bladder. I've been drinking lots of water and I have been going to the bathroom every 3-4 hours. There is no pain, no urgency, no frequency, no retention pain.........I would say today was was a perfect 10 for my health. My doctor is filling out my LDT paperwork. I'm sad about not having a job, but I am not ready to go back. He told me today that I had 3 surgeries in one day, MAJOR surgeries. The ilium being cut is major and takes months to heal, the cystectomy is major and takes months to heal, the creation of the neobladder is major and takes months to heal and all of the scar tissue he took out around my bladder will take some time to heal. So he said I was accurate in not trying to push myself back to work.
So most pain that I will be feeling is surgery pain and not related to the new blader at all, it has no nerves to feel pain.
He said as the months go by that I heal, I will have some phantom urgency and other IC symptoms buthe says with time that will all be gone and I am considered IC free....
Sunday, August 4th, 2002
I don't even know I have a bladder anymore. I feel nothing down there where the old bladder used to be. There have been no phantom attacks of any kind over the past 3 weeks. I feel like a child in at an amusement park, that just won the BIGGEST stuffed toy that exists and one hand holding some nice pink cotton candy! Now, I tread very slowly as we speak because as you all know, anything can happen and anything is possible, so I am being very cautious about telling everyone that I am IC free becuase there's a part of me that fears it will come back and there's a part of me that thinks it still exists, and yes I am seeing a therapist for these feelings and my Husband sees her too.
But as far as the past 3 weeks, I have no urgency, no frequency, no pain, and no retention pain.........sometimes I forget to chatheterize myself because I have no feeling down there. My Husband keeps reminding me to do it. As far as cathing myself, I feel nothing. He promised me that he would cut the nerves to my urethra so I would never feel any pain down there again, and he was right. I don't feel the catheter going in and I don't feel it inside of my new bladder. In fact, I know I am in the right spot when I can't feel it going in.
My Husband still has not found a job, and I have lost mine and my doc whom has cancer has not had the time or the strength to fill out my long-term disability paper work, so I am going to be missing some pay checks. My parents as well as Allen's mother can NOT help us, so we may have to flounder for awhile.........I have tried to seek state aid as well as county aid and town aid and Allen and I are making too much money even on unemploykent and Disability to qualify for any type of aid. I was on the phone for 3-4 hours on Friday calling everyone I could. This situation is NOT h4elping my recovery. It's all I think about, what's going to happen, where are we going to live, what jobs will we have, when will any of this get better, why can't we find someone to help us out............I am seeing a therapist but I still feel defeated, depressed, and alone. I feel like this is never going to end. It's one thing after another. If I had the strength I would be helping my husband search for jobs, (he's beyond depressed and I can't even get him into the shower.........) but I DO NOT have any strength mentally or physically to do this yet. I want to but I am just as depressed as he is. We have no where to stay and that is what scares us the most becuase once my long term disability runs out wich will be in 2-4 months, we will have to move home because we can not afford to live in the Boston Area anymore. The bladder is great and I am happy about that but weary. I feel there is so much stress right now that I might screw the surgery up. But I keep going. I can't wait for the chat rooms to be up and running. I miss you all!
August 18, 2002
I am still cathing every 3-4 hours. I am in LOVE with my new bladder! It's my best friend now instead of my enemy! I'm excited but still staying reserved for trouble should it arise.
"Never take, I don't know how to help you as an answer."
03-22-2003, 11:30 AM #2
hi kara, glad to see you here also. it has been a long time since i have been here. like you i also had my bladder removed in 2000. i have the bag on the outside.they didn't leave any thing ,they took out my urethra and bladder. i also had long time to recover and get back on my feet. it took me 6 months to get there. unlike you my pain did return in a month. don't ask me how or why it just did. i am in pain 24-7 never goung away. the only good thing is i never have any problems with infections or stones untill now i have had one bad time but it got cleared up so ican't complain about only one. hope this helps others seeing what the other type of surgery is like also in case they need to decide on which one..you take a chanch no matter which one you choose so think about it very seriously first ..bye and you are in my prayers..deedee p.s unless you are rich your daily baths become only once a week because the bags begin to leak and mine cost me 140.00 for 10 of them so i can't enjoy the luxury as i call it ..taking a bath or shower..luckily i have medicare and my husband ins. but even with them i still can't afford it..some thing else to think of when any one wants to know the differences..bye again..deedee angeldx'd i.c in 96,too many treatments and meds to remember before badder removed in 2000.pain returned..has since been on roller coster of narcs ad other things..3 suicial att..went into hosp to withdrawl from sooo many narcs and wt. got down to 85lbs....came out eating small amounts ad keeping them down..the only pain med was ultram 50mg q 6 hrs..and gabapintien sorry..can spell..600 mg q 6 hrs..in 2003..nowin 2006-ive had mesh pulled from myvaginal walls 3 timesso pain is severe again but also in rectum now..had to add hydro/app q 4 hrs.!!!but i still pray there is hope..i just need o find it.
03-22-2003, 12:03 PM #3
- Join Date
- Mar 2000
Deedee, I noticed you said you have a problem with leaking. There are so many different choices out there for pouches, you may find one that works better than what you are using now. Almost all manufacturers will give you free samples to try.
Kara, glad to hear that things are going well for you. Judith
04-07-2003, 08:31 AM #4
judith; THANK YOU FOR YOUR ADVICE..I SURE WILL LOOK INTO IT....DEEDEE angeldx'd i.c in 96,too many treatments and meds to remember before badder removed in 2000.pain returned..has since been on roller coster of narcs ad other things..3 suicial att..went into hosp to withdrawl from sooo many narcs and wt. got down to 85lbs....came out eating small amounts ad keeping them down..the only pain med was ultram 50mg q 6 hrs..and gabapintien sorry..can spell..600 mg q 6 hrs..in 2003..nowin 2006-ive had mesh pulled from myvaginal walls 3 timesso pain is severe again but also in rectum now..had to add hydro/app q 4 hrs.!!!but i still pray there is hope..i just need o find it.
04-10-2003, 02:52 AM #5
grouphug You both have been thru a lot. my thoughts and prayers are with you..
kissing brat'The will of God will never take you where the Grace of God will not protect you.'
Users Browsing this Thread
There are currently 1 users browsing this thread. (0 members and 1 guests)
By jodiii in forum Bladder Augmentation & RepairReplies: 15Last Post: 05-21-2006, 03:12 PM
By Michelle in KC in forum Introduce yourself and share your storyReplies: 10Last Post: 02-27-2004, 02:03 AM
By ICNJess in forum Urodynamics & Other TestingReplies: 15Last Post: 10-01-2003, 03:39 PM
By Kara in forum Bladder Augmentation & RepairReplies: 5Last Post: 05-26-2002, 02:25 PM
By karhopp in forum Bladder Augmentation & RepairReplies: 3Last Post: 05-17-2002, 07:03 AM