New to Indiana Pouch Please Help

[cupcake53]

Hi! On Jan 26, 2008 I had my IP surgery and as of Feb 8 I had my stents removed and have started cathing. Everything is going ok I guess except I do not have any mucus or very little and I have not irragated yet. I'm really not sure how to do it and my doctors office is 4 hours away and it is very hard to get into see him. When he removed the stents and showed me how to empty my pouch he didn't mention anything about irragating my pouch the way I found out about it was on this web site (the address to this site was on the paperwork that he gave me). Is it necessary to irragate? I dont want to end up with any infections or any other problems that might happen. Is it normal to still have alot of pain 4 weeks out of surgery? I still have my superpubic cathether it isnt being remove until March 10 and if I have any problems cathing through the stoma I to use the superpubic one. Could that be why he didnt tell me about irragating my pouch? The surgery took 12and a half hours because there was alot of scar tissue from previous surgeries. This site is great alot of my questions have been answered and there is alot of info and tips that I know I will use. Please be patient with me I have never been to a discussion board or ever emailed anyone before so I am not sure what I am doing. I just know that you have helped me so much in 4 days then all the paperwork that I was given to read by the home health nurse than you could ever imagine and that I want to thank you. Laura

[Lynne]

Laura,

Welcome ! I'm glad you've found this site to be helpful. We have a few "experienced" people with Urinary Diversions, and I'm sure one of them will respond to you soon.

[squid56]

Welcome Laura! Congratulations on being the proud new owner of an Indiana pouch . My pouch is around 16 years old. So far you seem to be doing very well, dont stress out about the irrigating. Even though your doctor is 4 hours away you can always call them and ask about irrigating, then we can walk you through the steps, okay? I think though it is because you still have the suprapubic tube in you. It is very normal to still have pain, and it is not uncommon for it to last quite awhile. It hasn't even been a full month since you had it done! Can I ask why you had the surgery? I am happy to hear that you were given this site by the home health nurse. Anyway ask as many questions as you can think iof of and we will try to answer them. We are here to help, Judith

[rikki]

welcome. i don't think the pain is unusual either this early and please try not to worry. amazingly everything will get easier with time. i've had my pouch for seven years and definetely am not the most knowledgable person on the board but i may have an occasional answer and am always hear to talk. rikki

[cupcake53]

Judith: I can't beleive that it has almost been 3 weeks since I was on here last but what a 3 weeks it has been. I've been back in the hospital two times once for 6 days home for 4 and back in for 4 for a severe infection. Then this weekend I almost died from medicine interactions but I'm alive and so blessed that I am feeling great. The reason that I had my bladder removed and had the IP was because of incontinence since I was 2 which at that time I electrocuted when I put a spoon between a 220wt plug and socket. I was thrown 20ft across the room the electricty blew out my tailbone. And 52 years ago thet doctors never new what to really do so they just closed my up and said I was alright to go home after 2 days in the hospital. The older I got the worse the incontinence became causing me to have 5 bladder tacks, 9 slings, and numerous other procedures (25 trips to the OR in 6 yrs) all this started at age 15. Believe me when I say I talked my urologist into it and it was not an easy feet. He tried everything to avoid doing the surgery that when the insurance approved it he was so suprised. He was just worried that something would happen to me because I am a very complicated medical patient and have numerous allergies to antibotics and pain meds that it wasn't worth taking the risks of surgery. But I did have a few scares but believe me it was well worth it. Sorry to have rambled on and on about such trival things but I guess I feel better than I thought. While I was in the hospital I did have one of the residents teach me how to irragate my pouch and that god beacuse I had to do it this weekend. Now I just wish that someone will answer my questions with striaght. How often am I suppose to change cathethers? One doctor said use only one a week and throw it out every Sunday. One told me to use a new one every time I go for the first six months until my pouch is completely healed. No one has given me any prescriptions for anything so I'm not sure where to get my supplies. Where I live I went into a medical supply store and the only two cathethers he had in stock expired in 2004. He said he doesn't even sell 12 in a year so he doesn't carry them. So where is a good place to get supplies? I have a feeling there is so much for me to learn that I didn't research for I asked for my IP that I guess I'll be learning by trial and error and through this group. I promise I will end now and hope to hear from you again. Laura

[Charles_in_Tx]

Laura; Try this site:

http://www.continentostomystore.com:80/ ... de=CONTOST

[rikki]

i am by no means an expert but i change my catheters every week. i find they become too flexible for me after that time. if i find myself someplace where i can't wash it properly i throw it away. i also had trouble finding supplies but have developed a relationship with a local medical supply store and they order my supplies for me and keep stocked with an extra months worth of supplies. i use 14 catheter, surgilube mini packs, and an adhesive bandage with only a small adhesive area. my favorite catheter is made by bardia but it seems everyone is a little different on what they prefer. glad to hear you are doing better. hang in there. rikki

[squid56]

Wow Laura! Since you are having the infection problem you may want to change your catheters every day till things settle down. I tend to change mine once a week, unless they get soft before then. I need mine to be very stiff or else they can not negotiate my tract. I get mine from a medical supply company. I use Edgepark Surgical Supply as that is who my insurance company says I must use. There are many other companies out there though. Do you have insurance? If so contact them and see if your policy covers supplies and who if anyone, you need to buy them from.
Are you drinking enough liquids? Really try to flood yourself with water or toher drinks. This will do 2 things- it will thin out any mucus you have and it will also keep the urine dilute, less chance of infection that way. Please ask lots of questions, that is the only way you can learn and that is why we are here! How are you feeling now? Judith