Bilateral Nephrostomy Bags: I could not find a really good definition for this surgery. I found a lot of sites but none of them really explained the procedure for someone with the kind of problems associated with IC. My doctor came back from a conference in Europe where the doctors over there were having great success with the surgery. So he decided to try it on me, I was one of the first in Rochester, NY to have this done. It worked for me. At least until the balloon malfunctioned. But I’m getting ahead of myself. I won’t be able to do step by step what happens in the surgery, but I can give the general gist of things. So here we go. This procedure is done in the radiology department. I was not totally knocked out before the surgery and I’m horrible with that kind of stuff. IV’s are hard for me to handle. So my 1 day surgery and 1 night stay turned into 2 days and 2 nights. I had to lie on a table under a big x-ray machine. The doctors would take x-ray to find out where my kidneys, and ureters were and where the tubes were going. They place 2 catheters into my kidneys. They were about the size of a pen. They put a couple of stitches in to hold in the catheters.The doctors also put a small line (it almost looks like a wire) into your ureters (tube that goes from your kidney to your bladder), and they blow up a small balloon to block off the urine. Some urine does still get through, so don’t freak out if you are still urinating. You do still feel the urge to urinate, which is aggravating! The balloon starts out right at the end of the ureters near your bladder. The doctors will move the balloon. Mine was moved every 2 weeks, I had the tubes in for 7 weeks. I have read about a man who had the balloons moved every 2 months but he was more long term with the tubes. Sometimes the x-rays are still up, especially when you are just having the balloons moved (which is pretty painless) and it’s really neat to look at them and see exactly how small the ureters really are. We are dealing with this horrible condition and sometimes it’s nice to see what exactly we’re dealing with. I did have some problems with the balloon deflating on one side, and it not holding in place. It doesn’t do anything to you inside, it just doesn’t hold off the urine like it’s supposed to, so I urinated more, then having a lot in my bag. So after the procedure expect to stay in the hospital at least overnight for observation. They need to make sure the kidneys are working ok. Ok here are some things to expect. There is going to be blood. When I had one tube in and needed to wait to the following day to get knocked out, I was urinating blood all night. Blood is ok. Even when the procedure has been over for a couple of weeks, you will urinate a little bit of blood. That is because part of the IC is bleeding ulcers in our bladder. When we are not blocked off we do not realize because there is so little blood and so much urine. But when the urine is being blocked the blood has a chance to show itself. It’s not a lot, but you’ll notice it. There will be a nurse assigned to come to your house. First it will be everyday then it will change to every other day or a couple of times a day. It will help a lot for the changing of bandages. It needs to be done everyday. If you have someone that can help you on the days the nurse isn’t there, it is a big help, I did change the bandages like 2 times, and it was so hard. I messed it up so bad!! I did have some problems with pulling, especially if there was a scab on the stitch. But if you have someone help you, take a q-tip and soak it in sterile water then gently rub the scab and it will come off. On the bandages there will be peeled off scabs and the person changing it will see the tubes coming out of your back. You can see it in the mirror if you turn around, it made me a little queasy. The moving of the balloons don’t hurt and believe it or not the removal of the tubes doesn’t hurt that much either. Some hints for the bags: the bags are long, and they have 2 slots on the top outer edges which is for the elastic leg bands. I didn’t use those unless I was in the shower. I used safety pins, and it worked great. On one of the websites I found a man (who was long term with the tubes) who had sewn buttons into his shirts and was able to button the bags into the shirts. The bags will hide inside of your pants if you hang them around your waist area, but you can’t have skintight pants. For a shower I used the two elastic bands and strung them through the slots and put them around my waist. It worked really well. As for bandages I got these 4″x4″ drain sponges (available at WalMart or any drug store), they have a slit coming down the middle and end half way down, so you can place the tube through the slit and it will fit very nicely around the nephrostomy tube. As far as tape, there is paper tape, which fits ok, but I had problems with it coming off in my shirt. The best tape I found was Hypafix, it sticks really well and if you have sensitive skin it doesn’t cause it to break out. The hypafix also has holes in it so it can breathe. Hypafix can be found at drug stores, and even WalMart. It is a little bit expensive but it’s worth it! The nurse that came to my house set me up with 2 products that worked very well. The first was called adhesive remover. When you change your bandages, whatever tape you use, you are going to have left over sticky stuff. This adhesive remover is a wipe (looks like a wipe that you use to clean your hands it’s small), you might have to use 2 or 3, you scrub the adhesive marks and it comes off on the wipe. It is greasy so make sure you wipe it off with a soapy wash cloth and get all the soap off before you put more bandages on (and also the site has to be dry). The other product is called skin prep. This is just like another wipe. You will have to use a couple for the area you are covering. What this does is it helps to give your skin a little coating so it won’t be as harsh taking tape off during the next bandage change. You know how bad it is when you remove band-aids. This helps it not hurt as bad when it gets pulled off. I think I have everything about this. I will be rereading and adding more if I think of anything else I can add.

Ileal Conduit Urinary Diversion: A man named Eugene M. Bricker developed this surgery in the 1940’s. It is still one of the highest used surgeries for patients after a bladder has been removed. It is low complication and has a high patient satisfaction level. It can be done in conjunction with a cystectomy to control bladder cancer, or IC. Or it is recently being done to help patients get relief from IC. The ileal conduit is created by surgically removing the ureters from the bladder and making a urinary diversion (so the urine will drain somewhere else besides the bladder).  Sometimes the ureters will be connected to a part of the intestine (that is removed from the regular digestive tract for this surgery) called an ileum, and it is brought out through an opening in the abdominal wall and made into a stoma. The stoma is then drained into a pouch or bag attaches to the abdomen over the stoma. The bag needs to be emptied periodically throughout the day, and is attached to a drainage bag at night. The stoma is about the size of a quarter, but it depends on your surgeon and your body type. The stoma can be circular of form to be a little bit football shaped. There is what is also known as a “continent urostomy.” This is created by forming an artificial bladder out of a segment of the small intestine.The urine will drain into this pouch and it will need to be intermittently emptied by a catheter. The stoma is much smaller then a stoma that empties into a bag. This stoma is about the size of a pencil eraser. When I had this surgery, I had no idea what I was going to be waking up with. I still have my bladder, and the surgery was done laproscopically so that they wouldn’t have to slice me open and it had a better recovery time. So I woke up in a lot of pain, and with a tube up my nose and a drainage tube coming out of my left side (my stoma is on my right side). I didn’t know about those tubes. But, they weren’t too bad, I was able to work around them. I had my surgery on a Monday. I don’t remember much from that day or through the night. I woke up on Tuesday in excruciating pain. I had a morphine pump, where I could press the button when I needed it. But it wasn’t enough. I had been offered an epidural before my surgery, but I’ve had a spinal before and thought they were the same thing, that I wouldn’t be able to walk and wouldn’t be able to feel my legs. I hated it the first time, it was the strangest feeling. So during Tuesday the pain clinic doctors (different from the ones I’d seen before), were in there a lot. They were giving me a lot of morphine, so much so that they had someone next to me to make sure I was breathing. Sometime during the afternoon, they explained the epidural to me, and said I would still be able to walk and feel my legs. So I went for it, I hated getting it (but I’m the biggest wimp when it comes to that stuff, I almost pass out every time they do my IV, so if you have to have something like that done ask for a anti-anxiety med first), and within 20 minutes I was feeling better. Still had some pain, but nothing like I had before. They couldn’t calm me down previous to the epidural I had been screaming in pain. So, if you have this surgery DEFINITELY get the epidural!! By Wednesday I was starting to feel better, I couldn’t get the tube out of my nose yet because I hadn’t gone to the bathroom. But I was able to drink water through a straw, which was helping with the dryness in my throat and the feeling of the tube. The tube doesn’t really feel that weird, it’s just awkward. I was still sleeping most of the day. On Thursday the tube came out, I was nervous about it and wanted the spray to numb my throat, but the doctor said she’d have to come back later then, and I just said pull it out. It wasn’t that bad. I thought it was going to be, but it came out really easily. So on Thursday I started walking, and it felt good to get out of bed. I did have an ostomy nurse come and visit me on Wednesday and change my wafer and bag, I didn’t want to do it because I would have to look down and it bothered my tube, it was just really uncomfortable. So on Thursday I was able to disconnect my bag from the overnight bag, and be able to walk. I had my IV pole to push, which was good it gave me something to lean on, and I also had the morphine drip and epidural pole to push. I had my mom or dad or the nurse I was walking with push that one, it was really big and bulky. On Thursday I was also ready to eat!!! I was so hungry. I started out small with jello, pudding and ice cream. They were worried because I still hadn’t gone to the bathroom, and that’s a big deal because they had been cut out part (a very small part) of my intestines, and reconnected it. By Friday my doctor told me I could have solid food, which was really good, because I was starving by then. I had eaten TONS of jello and soft stuff. So Friday I was getting stronger. It was hard for me to sit up without help, because they had done surgery in my abdominal wall, so after that your abs are shot for awhile. But I continued walking, they told me in the morning how often they wanted me to walk, and I did it, I tried doing one or two extra, but could not always do it. Saturday I continued to get stronger, and more walking. They also took away the medication that was going through the epidural. I was ok with it, I wasn’t in as much pain. Later one of the doctors took it out and it didn’t hurt. Sunday I was able to go home. They took out my drainage tube, which was really weird feeling. I could feel that it was all wound like an S shape in my abdomen. It didn’t really hurt it just felt funny. So the ride home was rough. It was hard to get into and out of the car, and any bumps we went over hurt. But it was really good to get home. I have some expectations for the surgery, some I have mentioned above and others I haven’t, but I feel like it’s important to tell everyone. – Get the Epidural!! You will still be able to walk and feel your legs! -You will wake up with a drainage tube and a tube in your nose that goes done to your stomach. They just want to make sure your not bleeding abnormally. When you get the tube out of your nose, you will feel 100 times better! -The first 3 days are the worst, you feel horrible and you don’t do much besides sleep. Get as much sleep as you can and let the pain pills take care of the rest. -Get up and walk as soon as you can. It helps you to get stronger, and you’ll feel better once you can walk again. -Your ab muscles are going to be very sore. It will be hard for you to sit up in bed. I used the controls in the bed to help me sit up, and used the side rails as well. Getting up on your own is good though to get some of that strength back. They will also teach you how to roll on your side, swing your legs over the side of the bed and use your arms to help you sit up. -The tubes do not hurt coming out. They feel really strange, but they don’t hurt as much as you think they are going to.