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Post by bchuckry on Jun 1, 2012 14:39:11 GMT -5
I've read on the IC network about treatments available and it seems like there are quite a few options. I'm hoping the diagnosis will come on monday and that he'll set me up with something like that stopping the twitching would be wonderful, definitely my most hated feeling. I guess I'd rather have twitching than my endo stabbing coming back right away though lol at least thats still gone!
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Post by bchuckry on Jun 14, 2012 16:31:50 GMT -5
So no real updates. Still waiting for the cystoscopy. They sent a homecare nurse two days ago to teach me how to self cath. the process was supposed to be three visits in one day, but after not getting anything the first time, then being way too sore and swollen to get it in. Problem is now I can't go at all! She's had to come back and try to help me go, I bit down on some blanket and told her just to force it yesterday and we finally got some urine out (plus alot of blood) My uro is a nut bag. He doesn't want to give me any pain killers or medicine, and only agreed to do the cystoscopy in exchange for me agreeing to see a psych! I wanted to smack him, but as long as he gets this test done. I've missed so much work, and I'm in so much pain, I'm at my wits end!
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Post by omaklackey on Jun 14, 2012 20:01:24 GMT -5
Your home care RN is a twit, and I'm not impressed. Get a little mirror on Walgreens (I have a post about it on IC network on the home instillation's) and read the section on IC network called Home instillation's. You aren't doing the instills but you can follow their directions for self cathing. It means bending in a bit of a pretzel but I'm very unflexable and quite overweight and I'm able to do it. AND when you hit a spot it "can't" make it past. DON"T force it. Take a deep breath and pull back slightly and try a different angle. Gentle smooth pressure, not stuffing it in is the best! They have a great write up on the IC network and I will try and get that link and get it to you. The mirror at Walgreen has a close up mirror side and a small foot that you can fit under your toilet seat. Make sure you have lots of light! Also ask for Lidocaine 2% viscous solution. You can use a little on the end and it helps get past the ouch. Also when you put on the lubrication (KY jelly if you don't have lidocaine) only put a tiny bit on the end because otherwise it gets so slippery you can't get a good grip on the catheter. It really isn't far that you have to go and a little goes a long way. If at any time you get so you can't go and your bladder is really distended you need be seen at the ER. Bladder distention is serious and needs to be treated. I hope you figure out the self cathing. People who have never cathed themselves trying to explain it to other people, don' t seem to do a very good job. AND please message me if your really stuck or just need a "help". The first few times were really awkward and now I can do it in a matter of a few minutes with no pain at all. Your body gets used to it, and you get better at learning where it needs to go.
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Post by omaklackey on Jun 14, 2012 20:03:56 GMT -5
here is the link for the IC network and the self cathing instructions. If you read through you will see that lots of other people have struggled with learning to cath themselves. Be encouraged it can be done. www.ic-network.com/forum/showthread.php?t=36637
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Post by Karen on Jun 14, 2012 20:33:39 GMT -5
Um, the uro is a QUACK if he insists you need a psych consult!!! I hope you run far, far away once you get the testing you need! NO ONE imagines that kind of pain!
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Post by bchuckry on Jun 14, 2012 21:00:31 GMT -5
My nurse had mentioned something to put on the tip to help with the pain, I'm just so agitated from the process I can't do it right now It also doesn't help no place has had the size 8 caths for me, I've been trying to use 10s but she started with 14s! (ouch) I picked myself up a makeup mirror with a magnifier but I will have to look for the one you mentioned. My poor bodys so trashed from this I'm afraid to even try again! And yea I'm so done with this Uro after the test. I was so offended he'd suggest it was in my head! Thanks for your help
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Post by loveshoes on Jun 14, 2012 21:04:07 GMT -5
I'm beyond outraged too - unreal. Hang in there - stick with Omack - she's the expert in this area and can help you with all of this.
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Post by omaklackey on Jun 14, 2012 21:52:50 GMT -5
(Walgreens) You can see the foot or stand is small and thin. The mirror tips up and down so you can position it. I found doing it on the toilet with the mirror in front of me, tucked under the seat, by that foot, to be the best spot but lots of people do it on the bed with a chups pad, or in the bathtub. When you get a chance find Pediatric #8 french catheters, They are slightly longer and so much easier to manage then an adult one, but tens aren't bad. Gives you more to hold on to. You need to get another urologist though. Ask around the IC network for someone in your area? Can you still pee on your own?
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Post by bchuckry on Jun 15, 2012 6:14:22 GMT -5
I've been reading alot on the IC network, so I'll be sure to ask around there for a better uro. I can go on my own most the time, just takes a long soak in the tub, burns like mad right now from how tore up my urethra is I guess. I'm hoping if I let things heal a little bit I'll be able to go a bit more regularly, then continue with the cathing when I run into problems.
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Post by omaklackey on Jun 15, 2012 13:38:59 GMT -5
Just remember that burning may also be from an infection if that RN had that many problems trying to cath, she most likely didn't maintain sterile techinque. That means that you need to watch for even slight temperature highs and going slightly more frequenly. Its a lot harder to catch infections when you have the symptoms we have because they are like infections!
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Post by JC on Jun 16, 2012 18:21:46 GMT -5
Your uro is such a jerk! I can't believe he made you promise to see a psych. I really like Omak's advice. My only thing I would stress is if you have to pull back slightly to try a different angle just try not to pull back too far because that will also increase the risk of infection. Pulling it out and re-inserting it is really risky for infection. This whole ordeal sounds like a complete nightmare. I hope that this gets resolved soon. What a jerk saying you are imagining all of this. If you were imagining it then you would gladly imagine the pain to be gone too! Ugh.
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