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Should I do another bladder instill or not??

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  • jen74
    replied
    Hi Waterflow.
    I have no clue what I am going to do. I cant make up my mind. half of me is saying "no, dont do it" and the other half is saying " but what if it will help in the end".
    I talked to the doctor and she thinks I should keep doing the instills and says that there is nothing else left to help me. Of course it is easy for her to say since she is not the one who could not pee after the instill.
    I aksed her to omit the marcaine and she said she could not. She said without the marcaine, the instill would be just to painful. She said she could cut it down to 25ccs of the marcaine though. I am not sure if that will help or not.
    She made it seem like it is no big deal to just cath the stuff out if I cant pee. Well, for me it is really painful. Plus, if it swelled me up last time, what if it is worse the second time around. I just dont know. Her idea is that it should get better each time. I have to do six instills in total, doing 1 once a week. I dont know though.
    I did the instill last Friday,and got over the side effects by late Saturday evening. Then Sunday and Monday I felt less pain in the bladder from the IC so I thought maybe something in the instill may have helped, but by Tuesday I was in pain again and today I feel just awful. I am swollen inside and when I pee, I cant get a strong stream because of everything being so swollen inside. I am so confused. Am I worse because of the instill, or does the body have to adjust to the instills.
    My hubby and I cant seem to figure out what to do next, or if I should go through another instill or not this Friday.

    I am going to see another urogyne for a second opinion, but dont know what to do in the meantime, as I am pretty much stuck with her.
    So that is where I stand right now. Any suggestions are appreciated. :o)
    Jen

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  • waterflow
    replied
    Don't worry about ticking off the nurse. I've done it many times to many of them. You have to fight for help at times so don't let her or the doctor tell you all you have are the instills. You are going through what I went through with my first doctor but at that place there was no bladder problem. I really do think you should find another doctor. Maybe ask around even? My Uro did not know about the tens being used for IC pain. i foudn out about it on the interent and asked if I could try. He said sure. You need a doc who is willing to listen and try. Hope things work out for you. Are you still having the instill done on Friday?

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  • jen74
    replied
    Hey Waterflow.
    I just talked to the nurse and she said she talked to the doctor and told her what happened about me not being able to pee after the instill. She said the doctor told her I did not have a reaction at all and that she reccommneds I continue with the instills as that is my only hope to get better as that is all that works.

    I told the nurse that I am sorry, but I disagree and that I consider what happened was a reaction to one of the meds. I asked her if it was possible to maybe omit a couple of the meds and maybe just use the steroid and heperain. Well the nurse said that she doubts the doctor would go for that since you have to use all those meds for them to be able to work.

    well, I told the nurse that first off, marcaine is just a numbing agent and will help only with the pain until it wears off. I told her that I believed that the steroid and the heperain would be what would help in the long term. I also asked if she could leave out the biocarb and the nurse got all upset and asked me if I was a pharmacist or something since I was asking about all the drugs.

    I am so mad I am literally crying as I write to you. She said that it was no big deal , that I could just catheterize myself if I could not pee, that alot of people do it and it is no problem. I told her that for me since I have IC IT IS A PROBLEM to cath and it is very painful. Besides. I told her that what if I do the instill again and have a worse reaction the second time around. She did not know what to say. She just said that the instills is all there is that will help me get well.

    I dont know what to do waterflow. I am so frustrated. Thanks for listening. I think I may have ****** off the nurse because I told her what I thought.
    Jen

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  • waterflow
    replied
    Have you tried any of the pills? THere is more then just the instills. I take 4 cystoprotrek, 100 mgs. of hydryzine at bedtime, have the tens 24/7, heparin/lido instills once a week and now the vicodine. How about the prelief? That helped me for a while.

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  • jen74
    replied
    I actually dont see that doctor anymore who said IC will get worse if not treated.
    I am on my third doctor now as it is. There are not many good doctors in Chicago I guess that know anything about IC.
    As far as the instills, well if if were not for the fact that the stuff swelled me up and I could not pee, I would probably not have an issue with trying it again, but that was just to much pain and to scary to go through again in my opinion.
    If the doc could tell me which med was the likely culprit, then I would try the instill again, omitting the bad drug. But I dont think she will know which one caused me to have that reaction. I may not be able to do the instills again and in that case, there really is no other treatment that works or at least that is what I was told.
    I do seem to be getting worse and worse as time goes on. When this all started in May of last year, it started off like a bad UTI and then went away for about 4 months then BAM, it came back and worse. Well, I had a regular cystoscopy done in December and was Dx with IC. Well even since December, I have gotten steadily worse and worse it seems. So I believe I will just get worse if I dont get any treatment. This is what is scary. I think it is likely all autoimmune related. I wonder if oral steroids would help. Thanks for the reply Waoterflow. I will keep you updated on what my doctor has to say or offer when I talk to her today, that is if she calls me back.
    Jen

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  • waterflow
    replied
    That doc who told you, you will get worse with time (even with the instills) is wrong! Yes, some people do (and I am one of them) but lots of people do get better or stay the same. Don't let what he said throw you off the instills. That is a dumb thing to tell someone. I suppose diabetics should just stop doing their insulin?? You might be better off finding another doc. After what I went through with some I know now I should have been more demanding and not trying to be the nice little patient. I did have a go around with my uro about pain meds but after asking and asking and a few other things he finally did give them to me. I am his only patient who has pain meds. I'm his only IC patient as well. It seems I am the only IC person in my city. Think you need a long talk with your doctor to help ease your mind and questions. Getting the right instill combo can be a hard long road but if it helps (which it does with me) it is time well spent.

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  • jen74
    replied
    Hi waterflow.
    I actually think the marcaine may have been one of the meds that caused me to swell and not be able to pee. I am not sure on this, but I was thinking since it numbed me so much to the point where I could not even feel anything, maybe that is why I could not pee at all. I am not sure though, as it could have been any of the drugs I suppose.

    I called the doctor and she is suppose to call me later today(I hope). I am not sure what to do though. I think maybe something in the instill helped me a little as today and yesterday I have felt less pain, but also one of the meds I did react to since I could not pee, and I dont want to go through that again as being cathed was EXTREMELY painful for me.

    I am trying to go over in my head what could have caused me to not pee and swell me up. I may be wrong, but maybe it was the marcaine or biocarbonate or maybe even the heperain. I dont think the kenalog would have caused the reaction since it is a steroid which is suppose to be an anti-inflmmatory drug, but I just dont know. I was thinking of asking the doc if I should just have the steroid put in, but not sure if that is the way to go. This is so frustrating to say the least. My pain is coming back now, and I have no clue on what I am going to do or if she even has any treatment options left.

    I am really getting depressed as I know that there is no other help out there for this disease other than these instills. I mean I cant even get any meds for pain, and even with those meds, they will not heal the bladder at all, just help with the pain, but the bladder damage will just get worse and worse in time, or at least that is what the one doc I saw before said. He said that without the instills I would just get worse ans worse until my bladder shrinks. This is depressing. Thanks for listening.
    Jen

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  • waterflow
    replied
    The bicarbonate made my pain worse big time but I still tried it for 3 weeks in a row. you need something added for pain I would think and the only thing I know of the marcaine or lidocaine. Amy might have a better idea since she seems to be very good at knowing things. If you can't get to see the doc hardly at all maybe a new doc would be the way to go. My uro I can see anytime I want as long as he is in the office. Mondays and Fridays he works at the hospitals. When I first went one of the woman who worked the phones hated me. One time I went to see uro I heard her tell him to tell me to stop calling. I was calling to much for her. Next time I went she was gone. Some who work the phones think they run the place and doctors won't know unless they are told.

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  • ICNDonna
    replied
    I have heard of ICers being sensitive to the bicarbonate and using sterile water instead. You might ask your doctor about trying that.

    Donna

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  • jen74
    replied
    Hi Gals,
    Thanks Amy and waterflow. As far as getting an appointment to see my doctor, forget it, I cant get in to see her until the end of May,heck I can hardly ever get a chance to talk to her even. I am always talking to a nurse it seems and they converse with the doc back and fourth and relay all the messages. It is ridiculous.
    I am going to try and call the doctor today and tell the nurse I want to talk to the doctor, but who knows if I will get my request or not. I am really thinking about switching doctors. I talked to a lady who has IC and she is seeing this doctor not to far from where I live, so I am thinking about maybe seeing him. The only bad thing is, it takes forever to get a first apoimtment usually so I may have to stick with my doctor for now.
    I think the instill did help me some as far as the pain in concerned, as I have felt less pain these last two days. But I was in alot more pain right after the instill, and could not pee. Oh , and what you said Amy about maybe having them add sterile water to make more volume, well I actually drank alot of water an hour after I had the meds put in my bladder and believe me, I had a full bladder, but still could not pee at all after I held the stuff for two hours. To be honest , I did not even feel all that pee in me as I was numb down there. The total instill volume they put in was about 90ccs which is about 3 to 4 ounces I think. Well when they cathed it out, I had about 375ccs of liquid come out, so my bladder was full, I just could not pee.
    I believe the bladder neck was swollen up somewhat and that is why I could not pee. The reason I say this is because my urine stream when I did finally start to pee was very very thin and that lasted for about a day. On Sunday, my bladder pain was less though, so I figure it must be the instill helping somewhat. I just wish I knew which med was helping and which one was the one that swelled me up and made it where I could not pee at all.
    I still feel somewhat swollen inside though. Last night I peed like 15oz out in the middle of the night which is really odd for me. I never could go that much in one sitting. Dont know if that is a coencidence or not. But I do feel like when I pee, especially in the middle of the night or in the morning, my stream is weak and is always starting and stopping. I just dont get it.
    I will try and cal the doc today and see if I can talk to her. Thanks for the replies.
    Do you think it would be fine to ask the doc of I could use just the kenalog(steroid) and the heperain in the instill and just omit the marcaine and biocarbonate?
    Jen

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  • waterflow
    replied
    Amy, thanks for explaining how the heparin works! I have been wondering how it helps with the pain/peeing. Since the bladder wall is fine now I know it goes through the lining into the nerve part and numbs that up for a while. Thanks for making my life a little bit easier in the mind department.
    Now I will go back and do half in the morning and then half in the evening. It doesn't last long no matter what the amount is. That info really has made it so much easier to understand. Oh, I have sterile water added to mine also. ALways have.
    Last edited by waterflow; 03-27-2007, 01:51 AM. Reason: editing

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  • ihurttoo
    replied
    I agree with Waterflow...I would make an appt with your Dr. to discuss what happened and how to proceed. Like you, I had trouble urinating after the first one, but after that, my Dr. changed the formula and included sterile water in the instill to increase the volume so I could go afterwards. That may be the only tweak you would need. I dont know, but I would discuss your concerns with your Dr. I am sure that he will want to know and can make adjustments that will work for you. We are all so different, and the same formulas that work miracles for one person dont do anything for someone else.

    As for the heparin, it does coat the bladder, but it also helps to thin the walls of the bladder to help the other meds absorb into it. That is why most people get relief from the instills even after they urinate them out...b/c alot of the ingrediants have absorbed into the bladder wall.

    In my case, it took several instills for me to see a noticiable difference day to day. After the first one, like you, I couldnt urinate. After the second, I couldnt hold it for as long as they wanted, but my bladder spasms calmed considerably. But, the next day, they were back. After about 6 treatments, my relief began to last for a few days at a time. That's when I started getting them 3 times a week in the office.

    Now, I do them at home and they are r/xed for me to do every day, but I have to do them every other b/c my urethra gets too irritated if I do them daily. But, I (usually) get several hours of relief from them, even after all this time. But, equally important, since several parts of my bladder lining are damaged, I need something to coat it to help with the pain and to prevent further damage. The heparin does that. Even if the instills quit helping with my pain, I would still do them to prevent further damage to my bladder lining. (I dont take Elmiron or Cytotec, but they also help protect the lining of the bladder.) Some people instill the Elmiron into their bladders for this purpose, since there is some question about the amount that reaches the bladder when Elmiron is taken orally.

    I also like Waterflow's idea of isolating the ingrediants, to see if one of them is causing a problem. You might ask your Uro if that would be possible. IF the heparin was causing you problems, they might switch to instilling Elmiron. If Marcaine caused the problems, they could switch to Lidocaine, etc.

    Utimately, you and your Uro may discuss this and decide to discontinue the instills. But for now, I definately hope you will schedule an appt with your Uro to discuss your concerns.

    Hugs,
    Amy

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  • waterflow
    replied
    The heparin is supposed to coat the bladder wall. Like the Elmiron would do. Not really sure how it works other then that. Good luck with it next time if you decide to do it. Don't you even get to see the doc when you go there? Maybe make an appointment just to go in and talk with him.

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  • jen74
    replied
    Thanks gals.
    I am really so confused about all this. I feel like maybe the instill did help a little with the pain after the first couple days, but I did not like that immediate reaction I had and not being able to pee. Something definitely did not agree with me in that instill. I could ask the doc if I could try one thing at a time, but even that I am a little leary of. I think the only thing that would really benefit me as far as the meds they use with the instill would be the kenalog(which is a steroid) and maybe the heperain, though I dont see how a blood thinner can help.
    I have to call the nurse sometime tomorrow and I wish I could talk to the doctor. They never let me talk to the doctor, the nurses are always relaying all my messages. I hate that. How am I to know the nurse is telling the doctor everything I want told.
    Thanks again for all the info. I still am at a loss. I need pain relief, and dont think this doc offers anything else other than the instills.
    Jen

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  • Trishann
    replied
    So sorry Jen that it was painful for you. I wish I have an answer for you. Everyone is different, some gets help with it and some don't.

    Just sending hugs, Trishann

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