UOAA Discussion Board

Hello everyone! I'm brand-new to this but, really needed someone to talk to who may understand what I/we are going through.

My precious husband had his bladder removed on April 10th (just a little over 3 weeks ago) and now has a new Indiana Pouch. We had the surgery done at MD Anderson in Houston, TX. We are from Mississippi, about 12 hours away.

So my topic... Does life change THIS MUCH??

I guess neither of us were prepared for the severity, complexity, or changes that would come with this surgery. My husband is only 51 and has always been VERY active and fit... doing pretty much whatever he wanted. Now he is practically bed-ridden. He is still in a LOT of pain, he produces up to 200 ml of urine in less than an hour and if we don't drain him every 45 minutes to an hour, he leaks. I mean a lot. He is still swollen and stays in the bed or recliner almost all the time. He eats there, sleeps there and usually I drain him there. It wears him out to just go to the bathroom and back. It wears me out to be up every hour through the night. I'm usually up for 15 minutes to drain, clean, etc... then it takes me 15-20 minutes to fall back asleep, then 20 minutes later it's time to wake up and do it all again. We have tried putting on a night bag, but it does not drain very well and he can usually only keep it on for a maximum of three hours before we have to remove it. He still has very little control over his bowels and most of the time can not make it to the bathroom in time. He does get up to walk a few times a day. He doesn't every smile anymore and I wonder how we can keep going. He seems to be very depressed. He has been on a couple of anti-depressants and they seem to make things worse. I feel soooo sleep deprived. He will not be able to go back to work, which means we rely on my income. I'm blessed to be self-employed, however, I MUST have time to work, but can not leave the house, unless someone is here to be with him. We live way out in the country about 30 minutes from town and my family is almost 3 hours away.

I don't mind doing anything and everything for him... but I'm getting really tired. I love him so much, but it hurts so much to see the love of my life be so "life"less. We barely hug, because he hurts so much, he's on 6 prescriptions, and I am his main care-giver. We have 6 children together. Our oldest son just got married yesterday and he was not able to attend the wedding. We had his sister come care for him, just so I could be at the wedding.

I just wonder... where did my husband go??? No smiles, no hugs, no nothing. He is in the bed 23 1/2 hours a day. My children are not even getting the time they deserve, because his care requires so much. Please hear my heart... I am NOT complaining. I love my husband with all my heart, as he does me. But, I need to know... is there something different we could be doing??

Thanks for your time and God bless you all!

Sleepless in Mississippi

I have no experience with your exact situation but having to constantly drain the pouch every hour sounds excessive to me. The little bit of understanding I have of an indiana pouch comes from reading about other diversions. I thought the purpose of the indiana pouch was to keep from having an appliance and allowing some storage of urine that can be conveniently drained on a reasonable schedule. I would certainly check with a professional about the situation as it sounds unmanageable.

There are other people on the board that have much more experience with this (or similar) situations and I am sure they pop in soon.

As far as being 'lifeless' it sounds like my life before I had my ileostomy so I can at least relate somewhat to that. It gets really old, really quick....but keep working on it and hopefully soon you can find something that works and allows you both to get back to living.

Hang in there....

Thank you meandean... I appreciate your words and encouragement!!

Hope to hear more soon from others as well!

Have a beautiful day!

Valerie

Well, this all happened just 3 weeks ago. Their is a technical term for what your husband is going through. It is 'Recovery'. Give him a few months for his body to acclimate to the fact that it was just cut open and a part which is near and dear to him has been yanked out. Pretty soon he'll be back to normal. The main thing is not to let him believe the myth that he's infirm, or less then he was. Heck, my bladder was removed when I was 2 and I've done everything anyone else can do except write my name in the snow. My suggestion? Stop helping him as much. Be there for him, but let him do stuff on his own.

Wolfva,

Thanks for your response. I probably am doing too much for him, but he seems to need me. But, I'm feeling really alone and it makes me so sad to see him soooo down. I'm ready to just see a single smile...receive a tiny hug... He tells me often that he loves me and appreciates me so much. He says I'm the best nurse in the world... but he just seems lifeless.

He had a fever today... went up to 102.1. Ended up having to go the ER... seems he has an infection now. New meds, and they put in a perm catheter until we can go back to MD Anderson. At least we can get some sleep!! He's producing WAY too much urine!! Over 2400 cc in less than 12 hours.

Thanks again!

Sleepless in MS

I have an Indiana pouch, it is almost 17 years old and yes in the beginning it is rough. 3 Weeks is way too early to be judging how things will be. Once his infection is under control he may start to feel better. He is alos going through the loss of his bladder, which many people go through the grieving process. It is normal! So not only did he have his bladder removed but he also had his bowel resected which is why he is having trouble with that too. It will get better, his body has to adjust and it can take months, but dont despair. In another few weeks he start to feel more like himself again. He really needs to start doing what he can in the way of taking care of his pouch, that way he claims ownership of it and it will make him feel more in charge. Of course you can be there to give him encouragement, but make him cath himself. As you said you need to do your work. Call MD Anderson and tell them how much he is putting out, they should be aware of that, they may have suggestions. I am 53, I work, I garden, raised two children, go hiking, do just about anything I want to do. My only restriction has been heavy lifting, which honestly doesn't bother me in the least! I was 30 when my bladder was taken out, I first had the ileal conduit and wore an external pouch for 6 years, so I am loving my internal one. Keep asking questions, hopefully I can be of help. Judith

Life DOES change this much.

Then, somehow, the expectations and the bar gets reset, and we plastic humans adjust to a new "normal." And, life goes on ... sort of, seemingly, not so changed anymore.

Squid & Steven~

Thanks for your replies. I do realize that God is in control and we are truly blessed that we had options.

One day at a time!

Thanks again,

Sleepless

Sleepless .... I am so sorry you are getting so little rest. Did the hospital or discharge folks or anyone say anything about a home health nurse for a few weeks? A Medicare beneficiary would almost automatically be given that option, but it might be an issue for the kind of insurance you have. Still, it would be good to look at the possibilities. I do agree with what Judith said about allowing him to learn to do self-care as he has the strnegth to do it, but home health will have that same goal, meanwhile taking a load off of YOU.

Now - sleepless in Mississippi ? Trusting that all goes well, by early August you will both be ready to come to the UOAA conference in New Orleans, where you will both meet some of the folks who post on this board, as well as many others who have been down the same road. See more details at http://www.uoaa.org/conference_2009.shtml .

And, though you didn't talk about cancer, I am reading between the lines. If you have not already located these resources, you might find some valuable information at the Bladder Cancer Web-cafe http://blcwebcafe.org/ and the Bladder Cancer Advocacy Network http://www.bcan.org/

Here's to you both getting some zzzzzzzzzz's and to a full and quick recovery.
Linda

Hi Linda,

Thanks for your reply.

Early August... if my darling is better... we will be at a seminar in Dallas, TX for Mary Kay. I am a sales director and he enjoyed it so much last year... I think it would be good for him.

As far as the cancer... he did not have bladder cancer... he had prostate cancer in the bladder. It was his third occurence.

You are so sweet... hope to talk more!

Hugs from MS,

Valerie

So here I come late to the dance as usual. Oddly, I logged on today because it has been 3 yrs today since my Indiana Pouch surgery and I am still mentally grieving and missing my friends on the board. Please do not get discouraged and do not give up. It seems like just yesterday for me and I can physically feel the pain and frustration he is going through.
3 weeks is a very short time and I do not believe in any way it is an indicator as to how he will heal and eventually get to his "new normal" as my doc explained. Please allow me to offer some thoughts and suggestions. I was in so much pain for about a year preceeding my surgery all I could think about was feeling better. I was never diagnosed with bladder cancer (4 biopsies including one at Mayo) but had some bizarre condition that caused my bladder to stop functioning, shrink and harden. I was urinating about every 5-10 minutes. So, due to pain and lack of sleep all I could pray for was relief. I had a wonderful doctor and his staff who cared for me in the most gracious way (Dr. Mark Austenfeld in KC MO) and took a great care explaining to me what to expect, I didn't care. My point here is that often, people with chronic pain and problems don't think about the impact following the surgery. You are changing your way of life forever. You feel helpless, you wonder "why me" you feel like a freak, you are in pain and you just can't seem to get a grip. That is something he (unfortunately) is going to have to overcome on his own. All you can do is be supportive, remind him how blessed and what a lovely, strong and courageous person he is. You can push him a bit, but until he is ready,forget it. Find something that inspires him and set a goal. Does he have hobbies or anything that really gets him going? Get him to focus on how wonderful it will be day by day as he heals body, mind and soul and can look forward to getting around again. Trust me it helps. I was fortunate to have two 14 yr olds in my home (girls) that I felt I had to be an example for. They were my inspiration.
Second, you can push him to cath himself but there are a couple of things to remember. One is the pain, he may not be physically comfortable doing it himself it takes some getting used to. Especially when you don't quite understand the physical feelings you are having yet. At this point, you are training the new bladder and it is hard to understand what you should feel. Be sure to use gravity as your friend, make sure at all times the bag is lower than the bladder. When laying down sometimes it does not naturally pull the urine down and that is a challenge. Secondly, he may be "afraid" to look at his new body. I was frightened, scared and didn't want to see it. It meant accepting it. It took me about 4 weeks before I would look, touch etc. The best way to overcome both issues in my mind? Have him try standing at a sink while he goes, either in the sink or a receptacle of some sort. This helps in two ways, it is much easier to look in the mirror at where you are going with the cath and 2, you get used to it sooner. Once I learned how to look, touch and understand, my recovery went much quicker. He has to learn to get comfortable and be accepting of his new self. If he leaks, misses the receptacle etc it is ok. If he gets urine on his hands or feet, it is ok. This is such a hard thing to do with the way society considers urine or fecal matter such a hush hush thing to discuss and sometimes people are stigmatized for it. You will need to get him to understand he is not alone. Once he starts to feel better, he will eventually learn to laugh about it, laugh at himself and make jokes. He will also learn that unless he wants to share his situation with people, they will never know. He will be amazed how many folks are mesmerized by it when he does decide to share. Infections are common, especially within the first year. If he continues to have them, you may want to ask the doctor about liquid neosporin which can be inserted through the cathetar with a mix of saline. He will need to learn, with your help, how to flush the bladder out. Unfortunately, intestines are naturally mucous makers (I assume they reconstructed out of intestinal track). If the mucous is not flushed out regularly, bacteria can take hold and cause infection. Of course, as you introduce a foreign object into the body you risk infection. I have lots of tips on how to sterilize etc but I would discuss now with your insurance company about a single cath use. It took me over a year but once I convinced my insurance company, my infection recurrance decreased significantly. Please keep this in mind. Lastly (boy this is a lot longer than I thought it would be) I would be following up with the doc etc about a home health care nurse as suggested. I am concerned with his amount of physical pain and infection etc.
It will get better, I promise. I remember thinking I would never be "right" again. He will adjust. Just as important as him, you need to take care of yourself. Don't be afraid to ask for help, it is not a sign of weakness and you will be shocked at how many folks there are that want to help but don't know how to offer or what to say. You MUST get rest and realize how important you are as the caretaker and wife. You can not be strong for him if you do not take care of yourself. You may be surprised how quickly he "steps up" when he sees you doing things for yourself again. Trust me, he does NOT want you to get yourself run down or sad over this. It is very hard to be "taken care of". My prayers are with you, I would be glad to offer help via cell phone or email so please let me know what I can do. God Bless you

Hello, life does change this much, but it gets so much better. I had my surgery in KC, Dr Mark Austenfeld is my Dr. It was done in 1994, I was 44. The Indiana pouch gave me my life back. I did have home health nurses come to visit for a couple of months and did have some infections. Had the nurses not come to visit I would not have known what was wrong, cause I was the only one in western KS. at the time that had this. The home heath nurses had never seen this procedure either so it was a learning experience for all of us. I am very independent and did as much as possible for myself. I had to wear a leg bag for the first 3 weeks during the day and a night bag when I was laying down. I didn't get much sleep with having to irrigate every 2 hours at first, but by 6 weeks post surgery felt like a new person. Your husband may have been starting to get an infection from the get go and that may be why he felt so bad. It is not an easy surgery,but I found that if I walked around instead of laying down all the time I felt much stronger. I also found that if I stand when I empty my pouch it works better than when I sit. I don't empty out completely if I sit. I didn't have anyone to talk to when I had my surgery done, it would have been so helpful to have a forum like this. Today is my first day, I just found the site. If you have any questions feel free to ask. My husband has been great with all this. I was afraid the bright red stoma would bother him but he thinks it is cute and loves me as much as he always did. He says I'm unique, not a freak like I was afraid of feeling. It's wonderful to not have the pain I had from the interstital cystitis that I had for over twenty years. I promise things will get better. I can do everything I want to except heavy lifting. I have 5 grandkids ranging in age from 2 to 15, all know what a stoma, catheter, surgi-lube and saline are. I can now enjoy playing with the kids and doing anything I want pain free. and this is much better than having to wear an external bag. My dad had his bladder removed 9 weeks before I did, also by Dr. Austenfeld, for bladder cancer. We have matching scars, they were going to do the continent procedure on him but when they got in the cancer had spread outside the bladder wall so they had to do the traditional iliostomy on him. He is also doing fantastic, he had stage 4 cancer and was only given a 30 percent chance of living 3 years with chemo and surgery. That was in Dec. 1993, he's 82 and extremly active, takes no meds whatsoever. I don't know if your husband had cancer or not but if he did that can also cause depression and worry. Dad had a great attitude and kept active, he is definately a success story. I like to tell people about him cause most people only hear the horror stories, not the successful outcomes. I hope things start turning around for both of you soon. Sheri