to instill or not to instill...that is the question...

[stef000]

I was wondering about the instillations....
For the people who have had pills and such and switched was it worth it???
Did you have the pain in the urethra too???
If you are one that had pain in the urethra too was the instill worth the extra pain and irritation???
I am just stumped at what to try for maintenance/preventative therapy....whether i should just take elmiron again or if i should try something like instillations....
Elmiron seemed to work and then would cause me wee lil flares(but painful) then my stomach screwed up and then i got a nasty cold so i stopped and now my bladder is very angry so i dunno if i should look into something new or not for preventative therapy......obviously the elmiron did work a bit but i would have break-through flares anyway so is it worth going back or trying something new....:toilet::bonk:
Just thought to ask your opinions on this one.....
or are rescue instillations just the route to go.....like just put it in when i need it and go from there???
just thought to see what people have found...
well i hope people are having good bladder days
take care
hugs n better bladder days
:hi:
:cat::cat:

[muxerr012]

LisaBar might be able to answer your question about instills because I know many people have pain when using a standard sized adult catheter. They're just too big and really irritate the urethra. Some folks use a small pediatric sized one. Hope that is helpful somewhat and I hope you feel better soon!

[lisabar36]

Hi stef000. I can tell you my experience with instills, when I went to the doc and had one a week for 6 weeks they were GREAT! They cut my spasms in half, and frequency and also made my bladder feel better, but that offiice I went to, they invented these tiny little caths, smaller then a ped cath, and I never had any urethral pain and I didn't even feel it. Now I have a new doc that taught me to do these at home and they only have the 10fr ped cath and that I have a problem with, that hurts my urethra and causes me discomfort. They do have 8fr ped feeding tubes that many use as caths and I have not tried them yet because I can't find them. Now we all respong differently to bladder instills and it depends what your doc uses for your instill and also you may respond differently, they help some but not all. I use sodium bicarb, lidocaine and hep. I am not going to do an instill until I find the smaller caths because as I said they 10fr ped cath really hurts me. Hope this helps you. :)

[lisabar36]

Also, I am on Oral meds as well, I did not switch to instills, I added them on top of my treatment because they really help with frequency. You would need to discuss with your doctor the best treatment approach because my doc wants me to do instills and also stay on all my oral meds. It takes Elmiron a while to work, so in the meantime I am doing the instills to also help me with pain, spasms, and frequency. :)

[GriffsMommy]

I think for most people instills are just part of their treatment. I think there are only a few people on the boards who ONLY do instills. I have oral meds that I take that you can see in my signature and I also do the instills. I started the instills because the oral meds that I had been on did not give me any relief. I was on Elmiron for 11 months and saw no improvement. I stopped it and when I started seeing my new dr he added some new oral meds and I had just been taught how to do home instills. I found that they do help with my bladder pain espically while the meds are in my bladder. My urethra is very sensitive though and had to come up with the right steps for me to take to insure it wouldn't cause me more pain than relief. I use an a 8fr 15 inch long pediatric feeding tube. I was having trouble finding them from a DME supplier so the NP at my local gyn's office is ordering me a box and I will pick them up from there and just pay the dr's office for them. Even with the small size of these caths I would still have urethra pain if it were not for the urojet my new uro gave me. It is lidocaine gel that is in an applicator that you can put directly up into your urethra and push on it. It gets the lidocaine directly up into your urethrea so it numbs it before you put the cath in. This is what has worked for me but I have heard some people say their dr's would not let them use urojets at home so every dr is different just like every IC patient is different. I like doing the instills though and though I'm not sure if they are giving me any long term relief at this point the short term relief is still nice and I am hoping in the long run they will start to make me feel better for a longer period of time. Hope this helps.

[stef000]

Thank you for your responses
I think i will go back to the uro and see if we can add something to make maintenance therapy last longer....
I keep getting wee flare ups :bonk::toilet:
I would like to actually have something that will allow me more time between the pain and such
This is such a hard thing to have when some things work for some people and for others they cause more pain so ya never know what to try.....
:bonk:
Well i think for sure i need to see my uro again since things have changed since last i saw him so i think it would be good anyway.....
thank you so much for your advice
take great care
hugs n better bladder days...
:hi:
:cat::cat:

[L. Thomas]

I am one of those "instills is my only treatment". My IC was rapid onset, diagnosed early and my symptoms were not severe.

My uorgyne thinks that my IC will not progress as I responded to treatment quickly and the instills have been so successful.

Instills take care of all my symptoms basically immediately.

It is probably 60/40 with the 60 on the side of instills helping somewhat.

[bjcov]

L.,
how often are you doing instills?

[L. Thomas]

L.,
how often are you doing instills?

Now aobut 1 a week. At the beginning 3 a week and increased to 1 a day for several months. I have seasonal allergies and during those times I need one at least everyother day.

[Bea]

when I have an instill, my bladder numbs for a few hours, but then my urethra hurts so bad I could scream.. and it is like this for days.. It is really frustrating.. I use a 10fr.. and that is sometimes hard to get in.. my urethra is a mess.. I am still doing the instills though, but so unsure if I should continue or not.. the pain in my urethra after is just agonizing...

[jenn73]

my doc doing install this month. I had the dmso it didn't work. I like everyone need a pediatric cather . I been in flare up for 2 weeks and now i got a uti with protein and white cells and blood in my urine. haveing ic puts a damper on most everything in my life.
curret meds are
lortad 10 mg as needed
klopin 1mg 2* a day
trazdone
zolft
esterdon
invage
I also suffer from anxiety attacks panic attacks high heart rate and low blood pressure
my bladder is down to 250ml hydro helps when my doc does them i am having it again in March i just has one in Dec.
jenn73
:loco: is how i feel at this moment

[bjcov]

good luck girlfriend. Hope it works for you. Then in March you will feel better too!

[jenn73]

bjcov
thank you..... I see I am not only one up late tonight. can't sleep when you feel like you have to pee and can't

Does anyone have yahoo messager on here?
If so would any one consider added me to there yahoo my id is

sweetjen_a@yahoo.com


i could use someone to talk to that know what i am going thru

[bjcov]

hope you were able to get sleep last night. And that today will be a better day. I pray everyday for the people w/ this disease for healing.

[GriffsMommy]

Bea,
I would suggest that you ask for a smaller cath. I use an 8fr 15 inch long pediatric feeding tube. This is what the NP who taught me how to do instills used and I can't use anything else. I will say even with this very small cath when she first started doing them I was having a ton of urethra pain aftewards. I even called her after my first or second one in the office and told her that my urethra had such pain after I voided the meds out that I wasn't sure I could keep on doing them, it just hurt too bad. She tried putting some lidocaine on the tip of the cath before inserting it but this still didn't help. Once I started seeing my new dr who is a pelvic pain specialist he gave me a urojet to use before my instills and this has been my lifesaver.
When I used to have DMSO treatments they used a much larger cath and I couldn't figure out how that didn't hurt but the little caths did. When I was getting DMSO they were using a whole urojet in my urethra before hand so it was very numb.
In cause you are not familiar with them a urojet is an applicator with lidocaine gel. You put the small applicator tip into your urethra and then push the lidocaine gel into your urethra. I only end up using about 1 ml per instill because anything more than that and it just starts squirting back out my urethra anyway and I'm wasting it. I wait a couple of minutes after I use the urojet before I do the instill. Sometimes the cath is still a little bit uncomfortable when I do the instill but I never ever ever have any urethral pain afterwards since I have started using it.
I would ask your dr about the urojet as it has been a lifesaver for me and without it wouldn't be able to do rescue instills in the office or at home. Good luck to you.

[sphinx]

I too, instill, but it is not my only treatment. However, it wasn't until I started doing instillations that I really started to feel real relief. I do my instillations daily at home. I first started once a week at the office for 5 weeks.....I only had moderate relief them, perhaps feeling ok for several hours but then back to normal. I wanted to try home instillations in hopes that doing it daily would help-and it really, really has! My frequency has decreased at least by half. I still have to watch out for my dietary triggers, but luckily only affected by a handful of those.

I had urethral pain any time I was cathed before, because the catheter sizes used in the office were so large. At home I use a 10 french. Some people use lidocaine gel but I find I don't need to. I rarely have uretheral pain, although when I was first learning I occasionally did. For me, instills have been a godsend.

[bjcov]

What is in your instills? Will you continue to do them indefinately?

[sphinx]

What is in your instills? Will you continue to do them indefinately?


When I was doing them in the office she used Heparin, Marcaine, lidocaine gel and a steroid......At home a merely use 20cc of 2% lidocaine and 2cc of 10,000 units each heparin.

I was told to use them daily as long as I was having symptoms, or could do 3 times a week. I sometimes do skip, like if I have a day off work. At first, when I skipped, I'd still be in the bathroom a lot. But now, not so much. So I am considering cutting down to 3 times a week and seeing how that does.

[erikaic]

Hi Stef...noticed you live in BC like me....I would reccomend the rescue instillations myself. I have found that overall they keep my remission time longer then elmiron. I would reccommend a specialist like Dr. Teichmann at St. Pauljs hospital. He is the expert in this area. The instillations are free if you get them done at the hospital. Good luck!

[stef000]

I am trying elavil and using my OAB med more and when flare ups happen i use muscle relaxants and if its really bad i take tylenol with codeine.
If nothing else it knocks me out....
I have had to stop elmiron since it was definitely contributing to my stomach pain.....which i probably have to get checked out again....:loco::bonk:
I will request to see my uro and see about rescue instillations since before i was diagnosed i definitely had a bit of bleeding from my bladder so i do not want that again so i will want to do something to protect the bladder....
I do like my uro-----he has been my dads for over 15 years now and i sorta know him and i know he knows what hes doing so i am more comfortable seeing him.....but thank you though..:)
i hope all are having a good day and if not i hope you get some relief real soon i hope that for all of us.....:smile tee
take great care
hugs n better body days :toilet::loco::bonk:
:hi: