pain,infections after bladder removal

[countrygrl]

I havent been on here in awhile. I had my surgery Feb.20th and I have had nothing but hell! I have had infections so bad that they put in a PICC line for 7 wks now I am on oral. My Uro is at a lose of what to do he doesnt want to take out the whole bladder yet I had a new bladder made w/small intestines I dont recommend it at all!!!! I have had staph infections 6 hospital stays and I have yet to get rid of the UTI since the surgery. I am going another Dr that all she studies is IC and other female related problems to IC out of state I go to get a 2nd opinion.I am so frustrated and depressed and tired. I cant even be a mom to my 7yr old. Has any1 ever ran into this problem? I have lived w/IC for 7 yrs and I am tired and ready to give up :confused: . I hope this new Dr is really helpful. Thx for letting me vent.

[sacausa]

Do you still have your old bladder (the original one)?

Have you tried Cytotec, or Cyclosporine-A? They both have pretty good success rates in IC patients and I think it's worth a try before bladder removal!

[ICLori]

Countrygirl, I"m so sorry for the terrible time you've been through, and I hope so much that things get better for you. In addition to Cytotec and Cyclosporine-A, I've also read about Adderal sometimes being used for IC and a new anti-allergy type drug called Xolair (it's worth doing a search for these "odd" drugs and reading about them.)

I'm just listing meds you might be able to try, because I hate to think of you going through more surgery, with all the problems you've had with this one surgery. :( I just hope so much things get better for you soon.

Blessings,
Lori

[countrygrl]

I have tried Adderall and it didnt work the problem that we seem to be running into is that my system has had so much meds that I have gotten pretty ammunined to them. Plus when they put the PICC line in it pretty much wiped out my system so I have to be extra careful because I have no restaints to anything. They has that if i get another infections or phenumonia again that I will end up in ICU because of my immune system.I am going to ask about those other 2 meds I have heard to much about them and I am willing to try. An as far as my bladder I only have 1/2 of it the rest is made from my small intestine and so far my body wants to reject it and that is what is part of the problem plus right after surgery I got a UTI & Staph infections and we haven't got it cleared up yet.I am afraid they are going to put that PICC line back in.:cussing: so frustrasted!

[ICLori]

Boy, you've gone through so much! I hope things get better. Makes me not want to ever get that particular operation, I'll be honest with you.

Hmmm...well, if your body is trying to reject the new part, maybe Cyclosporine-A might kill two birds with one stone. On the other hand, you can't take it if you have an active infection because it is an immune suppressant drug and it stops the body from being able to fight infection as well as it could. It doesn't completely knock it out, but it damps it down some, if that makes sense.

Anyway, it might not hurt to search for the studies on here of these drugs (it will take some reading) and then print them off and take them to your doctor, and see what he thinks is a good option to try, if any.

Wishing you good luck,
Blessings,
Lori

[countrygrl]

I am going to give all ideas and new meds to run thru w/my new Dr. and go from there. I dont recommend this surgery.I havnt heard of any success stories now that I have done its to late to reverse only option is forward and crossing fingers. I feel my only hope is complete removal. At this point I dont care I just want relief. Thx for the encourgement and listening:angel: this site is a great help.

[marsi4]

Hi Countrygirl,

I,m so sorry to hear that you are worse off after the surgery. I really don't know why doctors continue to do this augmentation repair surgery. It has never been successful on any patient. I just wish doctors would stop doing procedures that are prolonging patients pain and suffering. I guess this is for them, a last attempt to save the bladder. I just wish doctors can be better educated on ic and avoid doing surgeries that only make matters worse. Countrygirl, I,m so sorry that you had all these infections and are in a lot of distress. I hope you don'T have to wait long for your appt with the specialist to see what could be done next. At this point I think a a full cystectomy would be necessary and I pray that , this will be your answer and your pain can come to an end. Please keep us posted and let us know what your doctor suggests. You're in my thoughts and prayers.

Marsi4

[countrygrl]

thx I'll keep ya posted.

[Kara29]

I'm on a Keppra/Lyrica kick. These two meds seem to be helping afer a surgery such as what you just had. I am at a loss for words of wisdom here as I am not fond of partial cystectomies. If they're going to take it out, take it all please on the first try!

I sure hope some light starts to shine your way! I wish I had some more advice at the moment. I just wanted to give you some hope that those two meds (Keppra and Lyrica) seem to be helping me and giving me pain relief after my complete Urethrectomy and Construction of the Indiana Pouch.

Warm Hugs to you and well wishes. I hope you find some answeres real soon and feel better!

Kara

PS:Countrygirl, if you go for the complete bladder removal, I have TONS of good advice and can give you FULL SUPPORT.

[dancemomof2]

Sorry your having such a crappy time with this. I think Kara is the best resource for support for you she has all her ducks in a row and seems to be handling her story with grace and dignity to spite the set back. Please catch up with her and get some advice.

[countrygrl]

Thx for the words of wisdom and I will mention those meds to my new Dr that I see in 2 wks. Glad to hear your are doing ok and have some relief. I'll keep ya updated Hollie

[Judith56]

Hollie, I know just what you are going through. I have been there too! I had an augmentation done many years ago. The IC spread to my new bladder because they had left in the base of the bladder. I had constant infections, was forming bladder stones, etc. After 8 months of it they ended up taking out my bladder and urethra- THANK GOD. At the time I had a 3 year old and a 5 year old. Having my bladder out allowed me to be the mom I wanted to be. I also went through a time of being resistant to almost all drugs for my infections. It is very scary, luckily after being without my bladder for over 20 years things have settled down. I do have a chem port for when I get an infection, much better than a PIC line. I would be happy to answer any questions you might have. Judith

[countrygrl]

So you have had your bladder removed completely is the bag inside or outside and how often do you empty? Oh and thanks for letting me ask ?
Also this chem port where is it? my picc line was in my left forearm and I carried the medicine in apouch bag around my waist and had to keep my picc
line area from getting wet so showers was VERY hard and baths are out the ? . I have 1 more oral antibiotic I can take because I have run out of all others. I am having to take strong narcotics to kill the pain. I go see a new specialist monday because my partially removed is NOT working. Thanks for all your help and answers. Hollie:angel:

[Judith56]

Hollie, at first I had the type where you wear an external pouch- I had that for 6 years. Then I got it switched over to the internal kind which is what I have now. My current internal pouch is almost 15 years old. I only empty it maybe 4 times a day, plus I sleep through the night. When I had my augmentation I was not able to urinate on my own- the only way I could pee was to cath myself. My chemport is located under my skin in left chest area, about a few inches under my clavicle. The port is hooked directly into a major vein that goes into my heart. I have to get a nurse to access it once a month to flush it if it has not been used. It is wonderful to have because when I get sick all they have to do is just put the needle in it and hook it up to an IV. It makes things easier for everyone! I can do anything I want since it is under my skin- nothing sticks out, which means I can shower, take a bath, go swimming etc. I have had it for many years. Good luck on Monday! Hope the new doctor can help you. Judith

[countrygrl]

I got bad news at the Dr visit.They the surgery i had has done more damage than good. They are pushing the ins. company to hurry and schedule surgery because the bladder replacement is damaging my kidneys.They are going to put in a chemport to start fighting the infection and get me ready for surgery I am scared but ready.my little 1 is worried and i will have to be in the hospital for 21+ days and I will be 2hrs away and my little 1 cant visit much because he is in school and thats gonna be hard because we are each others rock.:confused: but all i can do is look to the future. Thx all!!!
pls just :pray: and i will get thru this i am trying to be strong but its hard.

[Judith56]

Sounds like how my situation was. When I had my urostomy switched over to my internal pouch the hospital was a 2 hour drive away. I was in for a month and when my husband brought our sons to visit my youngest would try to hide in the closet so he could stay with me. It was hard but we got through it. When I came home he had to sleep iin our room next me on the floor becuase he was afraid I would go away again, but we got through it. The best you can do is to make sure he can talk about his fears and do things like make you cards, write letters ( he can dictate them to someone) etc so he will feel not so lost without you. Maybe you can record yourself reading books, wirte little notes etc, and put them away till you go in and then who ever is staying with him can do one thing a day for you so he will feel connected. I love having a port, it will be sore for the first few days when you first get it, but after that you will be so thankful that you have it.

[countrygrl]

Those are some good thoughts.I will do that because we read together evernite so I will read to him and I think we are going to try and get a lap top comp so I can have my web cam and be able to see him its just at 1st in ICU it wont work. But I am so ready I think. Thx and I will keep u informed or ask more ?? . Again Thank You:bunny:
Hollie

[Judith56]

I am here! I would love to help you if I can and please do let me know how things are going!

[Imustpee]

Hang in there girlfriend! I had my bladder and urethra removed in Dec...after a few problems I am almost homefree! I am hoping that tomorrow is MY LAST DAY OF TUBES BABY!!

I also had 2 PICC's for 8 weeks total and 2 PNT tubes, 1 Kidney stent and leg bags for over 5 months now...I haven't been able to take a shower when I want since April, and NO baths since early Dec......my hubby has to plastic wrap and tape up my 2 PNT tubes that stick out of my back before I can shower.....they must stay dry at all times...I am so looking forward to a long hot bath with lots of bubbles!!!

I feel GREAT! I cath every 4 hours about 2 1/4 cups of urine.....I get up once a night ....I eat/drink WHATEVER I want ....this week I have been eating fresh limes..at least 2 a day....yum!!!.....and I have painfree sex...Life is good..I am going to go back to school this winter...I take my puppies for walks....I have a life....and NO I.C. symptoms at all!!!!

[Kara29]

Hollie! I am sending you HUGE hugs and prayers! I am so sorry you have to go through this with a young one around. We are all here for you when you need us! I may not know what surgery you are having, but I know what it's like to be away from home. I was 7 hours from my home for around 21 days. I made it through and I believe you will too! You are so strong to be going through all of this. I'm sure it feels like a nightmare that won't go away. I pray that it will and your suffering will end with it. With these surgeries it takes time to heal. We will heal with you! Let us know if you can what surgery they are going to do. I'd like to understand it so I can help you through it. I just went through reconstuction surgery in May so I may be able to help with some of your questions. I don't have a chemport.Judith expained it wonderfully! I did however have lots of things done to my bladder and urethral area so I understand some of what you are going through. I looked back through this thread. You didn't mention if you knew what you were having done? Or don't you know yet if it will be internal (continent) or external (Urostomy/Ileal Conduit). I didn't know before surgery what I was going to end up with so I know the fear.

Oh to answer your question is my pouch inside our outside?. The answer is that is is inside. It's called an Indiana Pouch.

"Indiana Pouch Reservoir"

"With this type of surgery, a reservoir or pouch is made out of a portion of the large intestine (the ascending colon on the right side of the abdomen) and a portion of the ileum (the last segment of the small intestine). The ureters are repositioned to drain into this pouch. The urine flows freely in a downward direction from the kidneys into the pouch. This positioning prevents urine from backing up into the kidneys, which protects the kidneys from infection. A short piece of small intestine is then brought out through a small opening in the abdominal wall (a stoma). Unlike the Ileal Conduit, no external bag is needed, and the stoma is very small and can be covered with an adhesive bandage. Instead, a one-way valve is surgically created to keep the urine inside the pouch. Several times a day, usually every four to six hours, a small, thin catheter must be passed through the stoma and into the pouch to empty the urine. An adhesive bandage is worn over the stoma at all other times (when not actively emptying the pouch). Catheters are washed with soap and water after each use. The catheters do not have to be sterilized. They can be taken on trips or social events and simply stored in a zip lock bag."

This information came from a site that I love to send newbies of bladder removal to. It explains several types of bladder removal and the advantages and disadvanteges to each one.

http://www.clevelandclinic.org/health/health-info/docs/3900/3927.asp?index=12546&src=news


My thoughts and prayers are with you!

Sincerely,

Kara