Update on first bladder instill

[jen74]

Hi Gals.
Well, I did my first bladder instill yesterday and it was a nightmare!
They put the stuff in (heperain,marcaine,kennallog,biocarbonate) and told me to try and hold it as long as I could, preferably two hours if possible. Well, after they put the stuff in, I turned completely numb down there, to the point where I just did not feel right.
Thank God my hubby and I decided to stick around the hospital just in case. Well after two hours, I tried to pee the stuff out, and I could not go at all. I had to go back to the nurse and have her cath it out. SHe called the doctor and the doctor told her to send us home with a couple catheters in case I would not be able to go pee later after I got home. AFter I got home, I was in alot of pain actually and very swollen probably due to the meds they put in there. I was able to pee some, but nowhere near how I did before the instill. My stream is very thin and I dont feel like I get it all out. The nurse said to only use the catheter if I could not get any out. She said as long as I got out 50mls at least every hour or so, then that was fine.
I woke up this morning and an in alot of pain in my pelvic area(even more so than before I did the instill). I cried all night becase I feel that I am at a loss here. The nurse said that it takes a few times until it works sometimes, but I am sorry, for that stuff to swell me up like that and not let me pee at all obviously my body is telling me that it is not good for me and that I should not do it again. Especially since I am in more pain today than I was yesterdat before the instill. I am thinking maybe I am allergic to one of the meds or something, I dont know. But I dont think I should have more pain than before.
I am soo scared here. They dont offer anything else for the pain ans claim this istill is the only thing that works. The nurse went on and on how it has helped so many of their patients. Why did it not work for me. Why did it make me worse? My bladder feels like it is on fire inside. The nurse said that maybe the med was working and thats I why I could not pee yesterday. I am sorry, but that sounds idiotic. Even my hubby said that he would think that me feeling worse and not being able to pee is a sign that it is not working for me and that my body is not accepting it. I dont think I should do it again. Who knows, if it was an allergic reaction of some sort, maybe it would be worse the second time around. ALso from having to have that stuff cathed out, my urethra was in sooooo much pain each time I peed last night. I also had a little blood in my urine which I thought was odd. I am thinking one of the meds caused that. It was not alot, just a small bit.
Well ladies, I am at a loss now. I dont know where else to turn for help. I cant imagine living my life like this. I am a VERY big believer in quality of life, and my future does not look like it will have one, at least not with this disease. And I keep getting worse and worse.
Have any of you had this awful experience with these instills? Are these instills the only thing out there that will help with IC other than the elmiron? I tried that med and it gave me side effects. The nurse made it seem like there is nothing else. I dont know where to turn. The nurse expects me to keep doing the instills. My hubby and I both think that is nuts especially after what I went through with the first one. I am so depressed and feel like I have reached an end here. Sorry for crying here ladies, I am just in so much pain and nothing seems to be helping me. ANd this doctor I have dont seem to believe in giving out any other meds to help with pain issues or to treat IC. Thanks for listening.
Jen

[leelee88]

I am so sorry Jen that you had to go through such an nightmarish experience..I am another person with IC and my doctor refuses me pain meds.. He said I should have the instills.. I said NO thanks because I had such a bad reaction to the cysto/hydro I dont want nothing else going up in me!!..I think its just a doctors ignorance to deny us pain relief!!
Well I hope you feel better soon, I am so sorry you had to go through this..(((((((((((((hugs))))))))))

Leelee

[ICNDonna]

Our natural reaction to pain is to tighten up our muscles. When someone else catheterizes me, I have learned to relax and it really helps.

It could be that one of the ingredients in the instillation is an irritant for you. I wouldn't give up entirely on instillations until you have a chance to talk with your doctor.

Donna

[littlemyrn]

I too have had reactions to instills. My home instills are lidocaine/elimiron and were cytotec, but the cytotec caused an extreme reaction, fever, violent shaking, etc. so we took that part out. The way my uro described it to me is that they are now believing that the elimiron when taken orally is so weak by the time it hits the bladder that it is not effective, so that is why we are doing instills, it does help some. You may want to talk to yours about just those two ingrediants. I also use lidocaine jell afterwards or a frozen water bottle between my legs for awhile and that helps with the discomfort. Good luck.

[ngazerro]

I had my first instill on Tuesday. I called the doctor on Thursday because I keep hurting worse. She said it was should have made me fell better, and did not understand why I was worse. I go again on this Tuesday and I am not looking forward to it. My pain seems to be more in my kidneys and they don't understand that either.

[waterflow]

It does take time for your bladder to get used to it. I had a lot more pain from them in the begiining but with time that stopped to just discomfort. I would say to try just one ingredient at a time. That way you will know which one is not the one to use. I didn't start out on just the heparin/lidocaine. Had other ingredients also but they just made it worse. I too would not pee much after having one done but with time I pee up a storm afterwards. Don't give up on it yet. Just explain to them you want to try just one at a time. It takes all different combinations. You are just starting out to find yours. Did they at least use lidocaine in the erurethra first? If not I would tell them you want that. If they tell you that it does not help any tell them they are wrong and you insist on it. Or maybe find another doctor?

[waterflow]

ngazerro, my instill did not help me with the first installation. It took a lot longer. I don't understand why some doctors tell the patient it should be an instant relief. My Uro didn't.

[kadi]

Hi Jen,
Here's a post I wrote awhile back on adjusting instillations to work for you as an individual. Maybe there's something in there you can talk about with your doctor... Sending a hug & wishing you better days soon!

http://www.ic-network.com/handbook/selfhelp0206.html

[ngazerro]

Thanks waterflow.. Hopefully they will get better. I had to take a percet everynight since Tuesday. Today I am feeling a little better, but I did not have to work. I think sitting at my desk makes my worse. I also start elmiron
as soon as it comes in the mail. I sent it off to express scripts and so far it has taken them about two weeks to get it to me. I also start taking chantix to quit smoking starting Sunday. Hopefully that will work...

[MamaLoca5]

So much of medicine is trial and error. What works for one person doesn't necessarily work for another. My first bladder instillation was difficult too. My doctor catheterized me (always painful for me), put the medication in, then sat with me while I got past the pain. Then I was in heaven, no pain at all. He too told me to hold it as long as I could. After 6 hours, I tried to urinate, with no luck. I ended up having to catheterize myself, but the next day I was fine. I am fortunate to have a very empathetic doctor. Definitely talk to your doctor about your reaction to the medications and take an active role in deciding what to do next. Nobody knows your body like you do.

[Zygala87]

Hello Ngazerro. I just wanted to tell my experience with Chantix. Over 50 years I never went without a cigarette. I am now on my 52nd day without smoking. I am an A type person and would have bet $1000 that nothing could help me stop smoking. This stuff REALLY works. I have had a few times I wanted to smoke but found if I just put my mind some place else i.e. TV, computer, it went away. I have spent the evenings watching TV or something and when I was ready for bed I thought "Wow I have not even thought of smoking!" I didn't find the support that arrives on our computer much help but it is nice to see how much money I have saved and how many days I've gone without a cig. My Granddaughter is so happy that she cried. (20) years old. I can't remember how many weeks we need to stay on Chantix but I'm going all the way. If I can help please feel free to email me [email protected]. All my best. Ziggy

[jen74]

Thanks for replying Ladies.
I had the instill on Friday, and I still am not feeling right. I dont think it helped at all, infact,I think it made me worse. It may be that I am allergic to one of the meds they used, who knows. Maybe the marcaine they used in the instill caused my nerves to get all messed up and that is why I could not pee, or that it swelled me up to much. The thing is, I was in pain afterwards still, even worse than before I did the instill. I could understand if I did not feel any difference and that maybe it would take a couple times to work, but it should not have made me worse I dont think. I am not to keen on doing it again. I plan on telling the nurse that I am going to wait it out for a while before doing anymore instills. The pain after having that stuff in me and having to get that stuff cathed out because I could not pee even caused me more pain. It just was not worth it to me.
I still feel like when I pee, I dont get it all out and that sometimes, I dont even get the normal signals that I should be getting telling me to pee, or maybe because I feel so much pain down there that maybe that is why I dont empty welland am getting all these werid feelings.My hubby said that I am probably having a hard time because everything is swollen and inflammed. He thinks I should be on steroids, and I have to agree with him on that. But again, these doctors dont want to help for some odd reason. I just dont get it.
I Am a little worried though , as I dont think this doctor I see offers anything else. She definitely does not believe in giving anything for pain. I think it is absurd to stand by and watch your patient be in agony and offer nothing to help. THat is not being a good doctor in my opinion. She gave me lyrica, which I read is not usually used in helping IC pain,that it is more of a nerve pain med that diabetics use, and if it is going to help, it can take weeks to work.
I really need to talk to her, but I can never get her to call me, all I get is the nurse. This is insane. Anyhow, thanks for replying ladies. I just am at a loss right now as of what to do.I am in so much pain and have no help at all.
Jen

[Moonheart]

Jen, do you have any other doctor you can go to? It's just sounding so much like this is not a good fit for you. I hate to know you are suffering like that.

[sweettabby]

I know my first instills were horrible. I cried they hurt so bad after. But after about the first four I did start to feel better. Eventually they did work for me and are the only thing that works when I get bad. Hopefully, that won't happen again. Could it be you just need to give it time? Hope you find what works for you.

[jen74]

Thanks gals for replying.
Hi Moonheart. Actually , no I dont have another doctor to go to at the moment. I am looking into finding a different one though just to get another opinion. I am not sure what luck I will have finding another doctor as there does not seem to be any knowledgable docs around here.
Hi sweettabby. As far as the instill being severely painful, when they put the stuff in, I was numb the first two hours actually. I did not feel anything at all hardly, but it felt weird actually. Anyhow, then when I tried to pee the stuff out after two hours, I could not pee at all. It must have swelled me up insdie. When I was finally able to pee, my stream was sooooooo thin actually for the next day, so things were swollen I assume. It seems like I had some sort of reaction to the instill. I just Do not want to go through that again with not being able to pee. That was very scary. I did feel a little less pain yesterday, but I am getting some spasms this morning which I did not have before the instill. Not sure what to think.
ANyhow, thanks for responding.
Jen