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8 years 10 months ago #35115 by Patricia
Julie were you on Cipro at any time? Just wondering as that has a black box warning...torn tendons in the calf. I'd report it to Dr. Steinberg. I know they gave me that in the hospital but i did ok with it.
I know about that supra pubic tube...i pulled mine at some point and it drove me nuts until it got pulled out of there. I thought it was going to hurt like crazy when he took it out and they made such a big deal about it..the nurse held my hand and then Dr. gill started laughing as he had already pulled it out before the nurse took my hand. So happy i could be of some amusement to their day!!! The soreness went away pretty quickly once it was out. The neomycin should help some but as long as it gets a tug here and there its going to hurt.
I think if the doc in Evanstan is willing to follow up with you that would be great as i'm sure if he does Indiana's he's got a stoma nurse that can deal with them also. My surgery was 4 l/2 hrs away so i had to get someone in town..unfortunately noone had ever done an Indiana but i did get the top uro and he is starting to do them now. I had to show all the stoma nurses the tricks here and they actually appreciated it. You'll find its really quite easy...its frustrating at first as you will be tentative but you'll find your way. I always measure my output unless i'm out and about...there's a plastic measuring device thats measured out in cc's and you will soon get a sense of how much you put out in accordance to how much you put in.
No family left i'm afraid...but i did live close to evanston in Park Ridge at one point. We moved quite a bit around the Chicago area growing up. After i was married i moved back to Dundee for a couple of years..a lovely little community where all the airline pilots lived..boy did i ever get an earful!!
hang in there
pat

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8 years 10 months ago #35114 by mamatrausch
Pat
I didnt know you were from Chicago area Do you still have family here?
I can get Dr Steinberg on Email he is great about returning messages but his nurse just doesnt communicate well. I was just hoping that to have another dr and a set of nurses familiar with the indiana pouch closer to my home could help if I ran into a problem with cathing. If anything major I would always go see Steinberg but sometimes it takes me 2 1/2 hrs to get there verses a 30 minute drive.(and who wants to spend 6 hrs driving me around) My supra pubic tube and the surrounding skin has been hurting so bad for the last 2 days I will see on Tues at clinic appt whats going on. I learn to cath on Tues.(Then tube comes out in 9 days)I will put neosporin on tonight have been using bacitracin. Just on tylenol now. also my calf has been hurting I am watching for clot symptoms redness and warmth but the leg looks good maybe a pull I will watch it.
Julie

T1/G3-CIS 10-01-2010
10-27-2010-Indiana Pouch

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8 years 10 months ago #35072 by Patricia
I was born and raised there Julie..one of my favorite cities.
Maybe Cynthia can pass on some hints on how to get Dr. Steinbergs attention?? Or his nurse?? wierd.
pat

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8 years 10 months ago #35070 by mamatrausch
Pat thanks for the cathing info that eases my mind and also tells me what I need to ask next week when I have the nurse show me. 2 types of catheters makes great sense. I contacted 2 ostomy nurses from the web site you sent both called today they were both kind and compassionate even though only one had done indiana pouch. I will meet them because like you said they can help with other issues that come up. Also they are only 20 minutes from my home. The nurse suggested I contact a Dr McGuire (evanston) who is at the hospital closer to my home who does the indiana puches in the suburbs. She said he would be able to help me or one of his nurses who teach his patients how to cath and He is very kind and easy to talk with. So tomorrow I will call his office and make an appt. Thank you for all your time and effort for researching all these sites. It makes me feel so empowered!!!! Today I feel I have a plan and I will be successful and if I falter I have a back up plan.
I can never thank you enough I hope one day to meet you. Know you always have a place to stay when visiting chicago.
Love Julie

T1/G3-CIS 10-01-2010
10-27-2010-Indiana Pouch

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8 years 10 months ago #35056 by Patricia
Julie...i had my surgery done 4 l/2 hrs away from my home so it was necessary to find a stoma nurse in my area. Well i found out there were exactly 4 of them in the city and none of them had experience with the Indiana...most just with ostomies. So i kind of had to teach them. They did however know about rashes and other problems that may come up.
The biggest problem with cathing will be your hesitancy to do it...meaning since the area is completely numb you feel you cannot know when you've gone in enough or too much or other feelings of What if i poke through my bladder...which just made my stoma nurses laugh as they said i'd be the first one to do it!!
Eventually you will get a tactile sensation on your fingers as it goes through the different valves into the pouch and you stop once the outpour starts..sometimes it will stop up due to mucus and you swish it around a bit and more will come out. You'll also be using a saline solution that is prescription for internal use only...read the label...my pharmacy ordered the wrong one once. You will put in about 30cc's after you cath while the cath is still in place and swish the cath around and it either comes back out or not..doesn't matter..it will eventually and it breaks up the mucus. One thing i learned early on was to have 2 types of catheters available. I have the one 14" french 16" long that they gave me at the hospital and then i ordered the coloplast clear soft caths same size. Every once in a while the rigid one decides to not want to go in...not often...but the softer one you can manipulate around and it will get in there. Another one i learned the hard way!! Don't ask! Make sure your uro writes a letter for your insurance company so that all is covered..even the surgilube.
I couldn't wait to get that supra pubic tube out...and then i couldn't wait until i could get 4hrs of sleep!!!
:side: pat

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8 years 10 months ago #35054 by mamatrausch
ok Ill try just tylenol or advil I did try cutting the darvoset in quarters and it didnt make me so sick but I sure dont want constipation!!
I do try and call my doctors nurse she doesnt reply I think they are worthless also no compassion I dread having her show me how to cath next week. Im trying to still find a stoma nurse close to me I have some names at different hospital I found on the web and will try calling today. Ill try and E-mail my uro maybe I can get him to answer my questions. I WILL NOT use a heating pad Pat thats why I ask you all because someone has usually tried it. Thanks for all your advise
julie

T1/G3-CIS 10-01-2010
10-27-2010-Indiana Pouch

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