Self discoveries

I had my bladder surgery in June 2002. I did it because I had intersticial cysitus (sp?). Basically this means that I was unable to hold my urine for any length of time. I was never able to leave the house unless I knew there was a bathroom available, I had tried medications but they did not help at all. You have no idea what it is like to urinate every 2 minutes out of emergency need unless you have been there. This was a 24 hr a day thing. It never stopped, but certain things I would eat or drink made it worse. I would urinate before I left the house to go shopping, drive the two miles to the local WalMart, urinate as soon as I got there, quickly shop, urinate at the back of the store when I got to it, urinate at the front of the store either before or after checking out, and urinate again the second I got home. Then I could unload the car. This was a daily thing, getting worse for me as I got older. I have to laugh at women who complain about urinating every three hours! What a joke! I would never have had this surgery if I was able to hold it that long! Yes biopsies were done on my bladder to confirm this disease. I was unable to go to the movies, or concerts, or visit with people, even go to church. It was impossible for me to do much of anything and more than just a little embarassing to be at anyones home, or a party/get together etc.

After many years of this, and finally being completely insane over it all, I decided to have this surgery. Other options were discussed but this seemed like the best option for me. I was in the hospital for ten days. The nursing staff was excellent. There were complications after surgery but I managed to pull through. It took me almost three months to get over the surgery. It was extremely difficult on my body, an enormous amount of pain, and my energy level had decreased to nil. Thank God for antibiotics that helped get me through it all.

Just a few months after my surgery I was having trouble, and the Dr ordered a cat scan. It showed that my right kidney was beginning to fail due to the right ureter clogging up and allowing a back flow of urine to kill the kidney, tho I was not told about the kidney issue. I was told it would probably clear itself with time, that I was doing well. I started paying particular attention to the smell of the urine, how cloudy it was, if it leaked out of my body at all, if there was any pain, etc. While I remained on antibiotics I felt pretty good. A few days after stopping them, the energy level would drop rapidly, the smell came back, the cloudiness in the urine, it would leak out again, and there was pain. I would even have difficulty getting the catheter to go in.

I urge you to pay close attention to your urine and all that it entails getting it out of the pouch. The urine has a regular smell that no longer exists with this type of surgery. It has an awful smell that is regular due to the amount of extra cloudiness from using part of the intestine for the pouch. When this gets infected, the smell is much worse. This is the first sign of an infection, so watch your urine, look at the clouds in it, some are normal, lots of them or nothing but them is not.

Make sure you use a clean catheter, sterile, and sterile gloves etc to clean the outside of the pouch before you cath. This may not seem like much, but it is imperative. I am now at the point where fighting with insurance has won me the ability to have a new catheter for each use, and a new supply kit for cleaning with each use.

I have found that often the catheters will bend over inside the tube that gets them to the pouch making them near to impossible to get out and yes it is very painful. What I find works is this. You can feel it when it gets stucks, it hurts like the dickens and wont move. You cannot pull it out or move it further along. It takes both hands, one pushing on the opening of your tube, the other pulling out the catheter. Basically you have to be pushing and pulling at the same time. If you cannot get the catheter to unbend inside you, it will still come out, along with some blood, and lots of pain, but it takes work. Once you get it out, use a new catheter. There are many kinds of catheters, I have tried many. I find that the ones I like best are much harder, difficult to bend. They can handle the pressure it takes to get past the internal valve prior to reaching the pouch.

The pouch itself will leak. You will not feel it at the time, you will suddenly notice you are all wet or feel the heat from the hot urine. I have begun to wear the small bladder leakage pads to prevent my outside clothes from getting wet. I still have a good many accidents, so I tend to always have a change of clothes in the car. I have also wet the bed. It seems when you lay in certain ways it pushes the urine out, or if you drink a lot at night before bed it cannot hold it all in and just leaks out. I wear a small towel on my tummy to help with this. Always drain your pouch before having sex! Trust me! Bending and sitting can also make the pouch leak.

The pouch in general has no feelings. You can feel it getting heavy, pulling on your insides as it fills up. This is letting you know it needs to be emptied. The more it fills, the heavier it is, the pain will start. Pay attention to the pain. It is your warning sign of things to come. It can mean you need to drain, its infected, or you have been too active and have irritated it. Do not freak out everytime you feel some pain. Learn what is normal, what each thing means. If it is hurting, and you do not drain, it will leak out on its own. I have been standing ready to drain and had the urine shoot right across the floor a couple of feet! I try to never let it get that full, but it will happen. I drain every three hours except for overnight.

I have had a tremendous loss of energy. I was never a hyper person, but I was able to get things done. Since this surgery, I am exhausted all the time. I must nap in the daytime. It makes a big difference. Do not over exert yourself. You get weak, there seems to be no way of recuperating from it. Your life will slow down and you must adjust to it. All my tests came back normal, but yet no energy for living. I am now taking vitamins, b12, c, and multi, daily.

If you feel any pain, try and figure out what it is caused by. I start by draining. Sometimes the pouch fills more quickly because I have drank more liquid and it cannot wait three hours. If you have not been very active, have drained but still have pain, you may have an infection. I mentioned earlier to keep tabs on the cloudiness and smell of your urine. It is all intertwined. If there are many clouds, pain, bad smell, it is most likely infection. Sitting in a chair where the stomach is bent can cause a great deal of pain after sitting for sometime. This will subside when you no longer sit this way, or go to bed, etc. Consider the things you are doing, if you basically are smooshing the pouch, it will cause pain. No need to rush to the Dr over this, just take some aspirin, tylenol, motrin, whatever and rest in bed overnight.

Living with an Indiana Pouch Introduction

Ok. I am new at this. So bear with me if it is not what you expect. I have been living with an Indiana Pouch for 5 years now. There are many things I wish to express to anyone that currently has this surgery, or if you are contemplating having this surgery. I am doing this so that you may benefit from my experience. I also hope that there will be some Dr's that read this, so they can change the surgery in the future or advise their patients of my findings. I will keep this updated from time to time. I will write more tomorrow as I need to get some dates correct. Stay tuned, send feedback if you wish. Till then.