questions - Indiana Pouch

[liblet68]

I've had my Indiana Pouch since January and I have so many questions. I am new to support groups, etc and really don't know what I am doing. My have trouble with leakage quite a bit. Also don't know if it is empty or whether it is just cloged with mucus. The longer period into my recovery the harder it seems to empty. My stoma is so sore. It hurts - like it is pinching and raw. Will I always have mucus? Will my stoma always hurt? Will it ever get on a schedule where it won't leak. I am in my 50's but feel like I'm in my 80's. This is really hard but at least I am alive. Just need some help from someone who has been through this.

[squid56]

First off welcome to the board! I have had my Indiana pouch for over 15 years. I got it when I was 30 and am now 51. Now for some answers- it is not unsual to have leakage, especially during the 1st year. You are still in recovery- it takes LOTS of time, they say it really takes a full year for your body to get back to normal, not to say that you will feel so awful for that long, but it does take a long time. You will feel better and better so very gradually that you will not be aware of it, until one day it will dawn on you that "Hey, I am feeling better!" You will always have mucus in your urine since the pouch is made from bowel , that is one the functions of bowel- to produce mucus. In time though it will be less and the more you drink, especially water, the thinner the mucus will be. Do continue to irrigate.How often are you doing it? Is your doctor aware of what is going on? Are you using plenty of lubricant when you cath? Are you having any other symptoms, such as fever, foul smelling urine, backache, etc? If so then it may be a good idea to get a urine culture done to rule out infection. If there is no infection, then think about asking your doctor for a prescription for lidocaine gel that you can use on tha catheter as lubricant. This will numb the stoma so you will not feel so much pain as you cath. Can I ask why you had the surgery? This may play into the reasons why you are feeling the way you do. Judith

[liblet68]

thanks for answering so quickly. I sure appreciate all the info. I had my bladder removed because of bladder cancer. I had a complete pelvic exoneration. I do not use lubricant as I find it too hard to guide the cath because it is so slippery. I irrigate at least once a day sometimes I have to more because of the mucus my cath will get clogged. I drink at least 8 glasses a day, usually more. The more I drink the more bloated I get. I was never much of a drinker before, I rarely get thirsty and do not perspire much. I really have a hard time telling if my pouch is emply or whether it is just clogged up. I spend a good deal of time in the bathroom. Any other special hints you have will be appreciated. I do have strong urine at the present time and am also on antibiotics. I have had several infections. Seems like once a month but do not feel bad.

[squid56]

I understand about the lubricant situation BUT do ask about lidocaine and then if you get some or even just try with what you have, by putting a tiny amount on the very tip of the catheter, just to help it go in easier. You do not need gobs of it on there. You may also wan to talk to either an ET nurse or your surgeon about setting a schedule of irrigation and how much you should use when you irrigate. I also can sympathize about not being a big drinker.I never was either due to the disease I had- interstital cystits- which every time I even took a sip of fluid I had to pee several times in a row. I used to pee at least 30 or more times a day, I am not exagerating as I had to keep track how often and how much I urinated for my urologist. Anyway I ahve gotten to the point now where I can drink more without getting all bloated up, though I still sometimes revert to my old ways. It is an ongoing battle/struggle for me to take in enough fluids. Old habits die hard, especially not drinking much for 30 years. I think also as far a cathing how often do you do it and how much are you getting out when you cath? Again it really hasn't been that long, it takes months to train the pouch and get it to hold increasing amounts of urine iof you do it right. Since you had cancer and additional pelvic surgery, no wonder you are so wiped out! When they put you on antibiotics, did they do a culture and sensitvity or did they just put you antibiotics? Maybe they need to make sure you are getting right antibiotic. I am sending you a private message, so up at the top click on messages to get it.