To continue instills or not?

[jen74]

Hey Gals.
Well, I am suppose to go in tomorrow for my third instill. I have had 2 so far. I am to have 1 once a week for six weeks. Well, as you all know, I am very sensitive to the meds they use in the instill (heperain,marcaine,kenalog,biocarb). I can never pee the stuff out afterwards and have to self cath it out (actually my hubby did it as I am so nervous to). Well, the first instill I did, I had alot worse pain for the first 2 days afterwards and then a couple days of some pain relief. This second time I had the instill last Friday, I was sooo much worse, I acually thought I got an infection from it and called my urogyne on Sunday and asked her for some antibiotics. I was in pain until Tuesday. Then On Wednesday and Today, my pain has been some better.
I am not sure where to go with these instills. I mean they help some, but I seem to be way worse for three to four days afterwards and then get a couple days of relief. Also the fact that I cannot pee the stuff out after and have to cath it out is no fun and also a risk of infection on top of it all. Also, I worry that maybe I am hurting myself by doing these instills since I cant pee the stuff out, is it my body having a bad reaction? I am usually able to pee better after I cath that stuff out. But I have not read of any of you who have had this reaction where you cannot pee the meds out. Is this odd or an allergic reaction?
My urogyne just tells me to keep doing them and that the pain should get better with time. Well, I am going on number three tomorrow and am still waiting to be pain free. According to the nurses there, they say that after doing 6 treatments, I should be way better and not to them anymore. I thought that sounded odd as there is no cure for IC. The doctor did say that some women do need to continue them though.
My biggest concern is the fact the it makes me not able to pee the stuff out, which makes me feel like my body is rejecting it or having a reaction even though my urogyne says it is no big deal that I can just cath it out. But I am wondering if these meds could permanantly damage me if I keep doing them. I do get a couple days of relief from them, except for this last time, I was in alot of pain for three to four days after. I am not sure if I had an infection or not, but it sure felt like it and it was the weekend so I could not and would not wait to get a culture. I did not want to take that chance if it was in infection. The urugyne said she doubted it was an infection since I took a macrobid an hour before the instill, but gave me the antibiotics just in case. Now I thinking it was either an infection or if not, then it is the meds in the instill that are causing the pain.
Part of me says to just maybe try it again tomorrow and see what happens and if I get more relief. But then I just know. ANyhow, I am really confused as if you cant tell
Thanks for listening. Hope you all are doing well.
Jen

[ICNDonna]

If you're getting a couple of days of relief, it may be that the more treatments you get, the longer your periods of relief will be. Some people do instillations at home and do two a week or even more often with good results.

I just hope they will help over the long run.

Donna

[vm]

That would be such a tough decision. I completely understand your hesitance about whether or not to do it again. I do know, though, that others over the years have posted about the first few instills being hellish, but it actually paying off in the end. You might talk to kadi sometime about that - she is one I remember for sure.

Good luck.

[waterflow]

I guess you have to weigh both sides of it. I only had the DSMO done 3 times. The pain from it was unbearable and it felt like I was peeing needles. Now with the heparin/lido I did it once a week for 8 months straight before I started getting help with it. I was in more pain after each instill and even so for a few years after that but I would not give up the instills for anything. I had an awful fear of caths in the beginning too from pain but with time it has gotten easier. Still will feel sore for the day but that is nothing compared to the help I get from having the instills done. I don't believe what your doctor says that you will be pain free after 6 instills. Find that hard to believe. How did it go at the other Uro?

[kadi]

Hi Jen,
My home rescue instillations are 10,000u heparin, 5cc sodium bicarbonate, 10cc marcaine & 30cc sterile water. Might be worth discussing the formula & your side effects with your doctor for an adjustment perhaps?

Also, one thing that immediately comes to mind when I read your post is that I was also initially unable to void the solution & would be stuck holding it longer than I wanted to & it would start to burn after awhile. So, my doctor & I agreed to increase the amount of sterile water to the 30cc I now use, so that it would have more volume & I could void it when I wanted to.

Also re: discomfort/burning. I started out only holding the solution 25 minutes, then worked up to an hour. My doctor wanted me to hold it for longer, but I've found that it increases the irritation if I do that & I do get relief at an hour holding time. (One time I fell asleep with the solution in & wet my pants the whole next day. I guess it made my bladder too numb.)

It took some fine tuning to get the instillations to maximum effectiveness & minimal side effects. Here's the post I wrote about that. Maybe you can talk to your doctor about some modifications.

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

You're right, this is a tough decision. And it's worth discussing with your doctor to make this treatment personalized to you. I would have quit the instillations in the beginning, except that I was so hopeful about the "good days" (before this there weren't any). I became very determined to figure out how to minimize side effects & took that approach with my doctor. "Ok, this is the relief I'm getting. How do we reduce the problems - and this is what they are..."

What I really felt was panic ("Oh, God, I've failed about every last treatment available, not this too."), but I tried to be very factual & problem-solving. And that led to finding a way to use the instillations that has kept me feeling ok most days!

Sending a hug,

[jen74]

Thank you all for your replies. It is a hard decision.
Thanks Donna, I agree with what you think, just that I really dont like the fact that the stuff makes it so I cannot pee afterwards and have to cath the stuff out. That just does not seem like it would be right. I just dont know.

Thanks Kim for replying. Yes this is a very hard decision.

Kadi, My doctor unfortunately is not willing to change the formula of the instills, or cut back or add anything. Well, she did cut back the marcaine to 25ccs when I asked her to, but that is all she will do.
As far as volume helping to urinate after the instill, well I actually drank alot after the instill and still could not pee at all. Then my hubby cathed out the stuff and got over 15 ounces out. So volume was not the issue and did not help. Also, my urogyne even told me not to drink anything before the instill at all as it will overstretch my bladder. Last week when I had the instill, I drank a lot of water and after two hours was only able to barely get out 6 ounces of pee, but then my hubby cathed out abother 15 and half ounces because I could not pee it out.
I really dont like that this stuff makes it where I cant pee it out. That worries me, makes me think that I am allergic to or having a bad reaction to one of the meds in the instill. But my urogyne is not willing to change anything as she is pretty closed minded I guess and figures what works for one should work for all.
My instills consist of the same thing yours do, except for that she also puts in a steroid in mine(kenalog).
I wish she was more open minded and would listen to reason. I even tried to convince her to omit a couple of the meds to see which one was bothering me, but she would not and said that I need all those meds in order for them to work.
I am worried about them causing long term side effects, meaning since it makes it where I cant pee right after the instill, well if I keep doing it, maybe it will permanantly damage my bladder where it wont work at all eventually. ( yes, I tend to worry alot, and dont trust most doctors or their judgement as I have been to alot of bad doctors in my past).
Do you think these instill can cause long term effects since I cant pee that stuff out and have to cath it out? I mean if I continue to do the instills will my bladder eventually just stop working period and I wont be able to pee again on my own? That is my fear since they really dont have any long term info on people using instills.
Waterflow, I have an appointment with the new uro on the 17th of this month. I was suppose to see him this week, but the office called and said that he had to go out of town and my appointment got pushed back.
So I will have to wait and see what happens.
I also found it weird when the nurse said that most patients get alot better after only 6 instills. She said some have no more pain for months to even years. I actually almost laughed out loud. I mean there is no cure for IC, and I have never heard of anyone being cured for years after doing just 6 instills. That even worries me that they actually believe this.
Anyhow, thanks again all of you for you replies.
Jen

[Emma's Mommy]

am i the only one who will never ever even think about doing an instill??? I'm sorry but when i'm in pain down there the LAST thing my bladder needs is to be cathed (OUCH! in its self with a flare up) and have chemicals poored all over it and left there for hours on end!

maybe it just feel that way because my old uro (whom i HATED) wanted to stop my pain management treatment that was working (i went through about 15-20 lortab a month...a number that was slowly decreasing) and start me on instills 3 times a week which would have cost me an arm and a leg, made them more $$$ than seeing me once a month for a refill on lortab, and consumed my entire life!!!

i became even more skeptical when i asked about other oral medications i could use to help prevent flare ups b/c i was not ready to go the invasive procedure route yet (and yes being cathed is somewhat invasive to me.....and painful) and was told it was Instills or NOTHING at ALL!!!!

needless to say i no longer see that uro, and i tell anyone who pm's me and asks me for a local uro to stay far far far away from that group of docs!

but anyways back to the OP if i were you i would stop the instills because they are doing something to your bladder that it dosn't like because you can't pee afterwards! and the fact that your uro dosnt seem bothered by this really sends up a red flag for me!

[kadi]

Dear Jen,
Honestly, after reading your posts, it sounds like you do not want to continue the instills & understandably so.

You're right that there is no "cure" for IC and that most treatments require some level of maintenance. I often wonder if doctors who claim to have an abnormally high success rate are just thinking that the patients who don't come back to them are fine now (as opposed to seeking treatment elsewhere).

I think getting a second opinion is really important, as is having a doctor who will work WITH you. There is nothing wrong with taking a break from the instills til after your second opinion. You can just tell your first doctor that you are needing to take a break for awhile due to personal reasons & not disclose that you are seeking other treatment options. That you appreciate her support & will come back to finish the series when you are able.

The bottom line on all this is that this is YOUR body, no one else's.
Frankly, I'd be looking for another doctor even if that meant driving further. You need a doctor who takes your concerns seriously & recognizes that not all IC patients are the same.

Wishing you the best,
Kadi

[jen74]

Thanks Ladies.
Erika, Yes I think I am probably not going to continue the instills. I went and had my third one today and once again I could not pee the stuff out, and what is worse is that I am still having trouble going and it has been over two hours since my hubby cathed the stuff out. This time I seem even worse with the retention than the first two times I had the instills. Well, I think this has made up my mind. I cant keep doing this as something in the instill is really messing with my bladder.
Kadi, I do have an appointment to see the new urogyne on the 17th of this month. I am going to hold off doing anymore instills until I see what he has to say, especially since I am having a worse time with the urine retention after todays instill. This is awful, and should not be happening. I asked the nurse today if any of her other patients have this problem with retention after they do the instill and she said no that I was just a special patient. You would think that my doctor would try and work with me and knock out some of the meds she is using to see if I would not have such a bad reaction, but she is not willing, so I guess I need to move on. I just hope these instills did not mess me up permanantly where I am not going to be able to pee right or empty my bladder completely anymore.
Thanks again for the replies and for listening.
Jen

[Emma's Mommy]

Jen im sorry this experience was worse for you.....if i were you i'd drink a ton fo water and soak in a baking soda bath to get as much of those chemicals out of your system as posisble

[jen74]

Thanks Erika.
I am feeling better today and am able to pee fine, thank goodness.
I am really upset at my doctor. I mean the instills do help my pain level some, but having the reaction where I cant pee afterwards is scary and having to cath out the stuff everytime cause I cant pee it out.
I would be more willing to continue with the instills if the doctor would just work with me, and cut way back on some of the meds she is using. The nurse thinks it is likely the marcaine causing my bladder to as she put it"sleep". If the doctor would just cut it back even more. But she wont. And I can hardly ever get to even talk to her, I am always talking to a nurse.
This is frustrating, especially when they tell you there is no other help for this disease. I wont do the hydrodistention( this is the only other thing she offers). I am sorry, but I have retention issues with just a isntillation, there is no way in hell I am going to blow my bladder up and make things worse, which I am sure that it would with my luck.
I would only do the hydro if it was like my last resort. I know there are others on here who have had great success with them, but my gut feeling just says not to do that.
I dont want to take pain meds regularly either, but I mean I have to have some quality of life or what is the point. I just dont understand it. I mean people that have fibromyalgia, RA, and other painful conditions are not treated half as bad as us with IC. I mean ask for something for when the pain is severe, we are treated like lunatics. It is not fair.
Thanks again Erika for the support.
Jen

[kadi]

Jen,
Have you tried Elavil? That's the first medicine I tried & it helped a huge amount (went from voiding 60+ times a day down to 15, went from unable to sleep at all to only one or 2 bathroom trips a night). I'm on a pretty low dose of it. Something to consider if you haven't tried it.

Your doctor sounds more unrealistic each time you post. I'm glad you're going to get a second opinion. (And considering how many doctors don't handle IC well, might be a good idea to set up an appt with a third doctor if one is within 90 minutes driving. I was appalled at first when I realized my IC specialist is 60-90 minutes away, but since he's helped me so much, I only go 2-3x a year now.)

Hang in there---