Confused about instillations

[phoenixgirl]

I just got scheduled for a series of intstilations starting this Friday and then going once per week for the next 6 weeks. My uro said that they will be Elmiron instills and she also wants me to begin taking the Elmiron orally.

My main symptom right now is frequency and I don't understand how the instills are supposed to work. I think they help restore the mucous layer, right? So if I have to take the Elmiron orally and it may not work for 6-12 months, what exactly does the instills do? Just provide immediate help with the symptoms? I guess I'm really confused about what happens in the weeks between the instills being finished and before the oral Elmiron kicks in. Are the effects of instills long-lasting sometimes or do they only work for a few days? Any info that can be provided would be great. I was just diagnosed today and even trying to read the threads in this section, I really have SO many questions and don't really understand this process yet.

[ICNDonna]

It can depend on the individual, as well as the solution used, but instillations can help anywhere between a few hours and several months. Some ICers do instillations at home more than once daily to keep symptoms under control.

Warm healing thoughts,
Donna

[Linda May]

I agree with donna every icer is different when it comes to treatments. I have the DMSO treatments with out the elmiron. I do not even take the elmiron pills because they did not work for me. Some icers have the rescue treatments which is different than DMSO. What ever you find that works for you stick with it. Also its real important to stay on the IC diet its hard but you can do it. I am glad you found this sight we all understand and offer much information. I wish you the best and feel free to keep in touch and let us know how things are going with you.

[phoenixgirl]

Thanks, Donna and Linda. Yes, this is supposed to be a rescue solution. I just dont know whether or not I should get my hopes up that I may start peeing less after one of them, or if I have to wait until after the series of 6 is finished to get relief, or if I even will. I am also on vesicare and elavil. I don't even remember what it's like too pee normally anymore and I have no idea what to expect in terms of what these instills are supposed to do.

[phoenixgirl]

Also its real important to stay on the IC diet its hard but you can do it.

I have been on the IC diet now for 2 months but I've seen no difference at all in my symptoms. I ate some pizza last week just to see if it would do anything and my frequency didn't change at all. I am not experiencing the pain some get from foods, which is good, but I don't even know if I need to stay on the diet if it doesn't matter in my symptom levels at all. I'm still completely avoiding coffee, soda, juice, etc. but will there ever be a point again that I might be able to re-introduce those things?

[phoenixgirl]

I asked if I would be able to drive after leaving the office and the nurse told me that since they're using elmiron I should be fine. She said, "Sometimes the DMSO's can cause some real pain."

Can anyone who has had an elmiron rescue instill tell me how you felt afterwards? Thanks.

[L. Thomas]

My instills are heparin./ lidocaine as needed. I did Elmiron instills for several months during the heparin shortage. They were not effective for me in controlling my symptoms, one of which is frequency. There are a number of poster that have been helped with Elmiron in the instill. I didn’t have any problems with pain or anything as a result of the instill. I had immediate relief with frequency. Now I need to go every few hours during the day and 1 time at night. Before instills I was going about every 30-60 mins. day and night. I usually do the instills at night and don’t need to get up at night to go to the bathroom.

I am one of the fortunate ones that can eat basically anything I want. If I drink too much cranberry juice I do have some pain that disappears the next day.

Sorry I didn't see your post until today. I hope everything went ok. I have been instilling for several years and would be happy to share my experiences.

[phoenixgirl]

So L. Thomas, you do them at home now? Every night?

My first one was this past Friday and at first I felt worse because I had irritation and burning from the catheter whereas before the instill I had none of that. That pretty much went away though by the next afternoon. My instillation was a mixture of sodium bicarb, lidocaine, and 2 capsules of Elmiron. I went 2 hours between restroom visits on Saturday and this morning but this afternoon I'm feeling like the frequency might be coming back in. I don't know if I can attribute the slight improvement the last couple of days to the instills, the vesicare finally kicking in or the amiltryptiline, or a combination of all of the above. The nurse that did my instillation was so awesome, telling me what she was doing and always asking me if I was doing OK. She said that we hope for them to have a cumulative effect and that after the 6 treatments I'll be feeling some relief. She called it a "jump start" to my oral Elimiron. I just hope I can get some kind of break from peeing every 20 minutes or so. It's exhausting. I hate so much that a few months ago I had never even HEARD of IC and now I'm trying to work my whole life around this damn disease.

[L. Thomas]

I couldn't even say Interstitial Cystitis let alone spell it. I had never heard of it either. You will have to read my story (link in signature). You will get a hoot out of it.

I have done instills at home since the first. After I went to Dr. Dell for 2 weeks 3 times a week I started doing them at home. He wanted to make sure the instill was the right mixture and they were controlling my symptoms (and I learned how to do the instill). I live about 90 miles from his office. I did 3 a week for a few weeks and then had to increase to daily for a few months. Now I need one every few weeks except during allergy seasons. IC has a direct connection with the hystamine response with allergies. During the spring and fall when the leaves start to open or fall I have problems. I have to do them almost daily for a couple of weeks. He did prescribe Atarax for my allergies. He told me it is the strongest antihystamine you can get. A lot of posters here use Atarax.

Dr Dell has done research with Elmiron. He thinks it is a very promising drug but it is not the sliver bullet. He uses instills to jump start Elmiron too. Instills work so well with me. Elmiron really doesn't seem to help me. Everyone is different. Dr. Dell said since we caught my IC before it was in full flare that the instills would most likely control my symptoms and I would probably never need anything else.

Ask if they can use lidocaine gel on the outside of you urethrea before insering the catheter. I use a very small catheter. Actually it is a pediatric feeding tube..8fr x15". Most catheters used in hospitals or MD offices are 18 or larger. I have found that I don't have any discomfort at all if I insert the cather but you have to learn how.

[nat13]

I do twice weekly instills at home (3 caps elmiron/water/lidocaine/sodium bicarb) and have been doing them for over 3 years, they work okay, I do get stress flares and sometimes food related flares, but they are not nearly as painful. I think it took at least a month or two to really notice a difference. They tried to bump me back to once a week, I flared and got an infection. After washing (I use unscented castille oil soap and rinse real well in an effort to control UTIs). I put lidocaine on my urethral opening, let it sit just a few, I also use lidocaine jelly on the catheter which is a 10 french. I refuse to take elmiron because it seems to me that taking something which effects your whole body is silly when it just your bladder. Also, I have multiple, some serious, medication allergies, and am scared to take anything new. I hold it for atleast 4 hours and ALWAYS be sure to time my voiding so that I have a pain pill in full force - I did not the first time and it felt like I was peeing glass - although even that has gotten better. At first I would also take peridium, but now when I take it I seem to rebound and hurt the next day even more - I now only take peridium in extreme cases. I love my Uro, he is personable and always running way behind, he is honest as well and I am honest with him. I am a difficult case, but I know I am not the only one. I choose to supplement with natural stuff as much as possible, including:

Daily - aloe vera - soothes mucus membranes / helps with constipation
Quercetin - mast cell inhibitor for inflammatory response
Milk thistle - for my pour liver and the vicodin I take
Stinging Nettle - for allergies
Prelief - reduce urine acididy

As needed -
D-Mannose - UTIs
Marshmallow root, Buchu - soothing
Uva Ursi - UIT's

I take other supplements as well, (including kefir, pre and probiotcs and b-complex because I keep getting darn UTIs)

Hope this helps you some - I am sure I forgot something.

Natalie

[phoenixgirl]

I hold it for atleast 4 hours and ALWAYS be sure to time my voiding so that I have a pain pill in full force

YIKES!!! 4 hours?!?!. Wow! No way I could wait that long but you must not have bad frequency issues like I do. Your instillation cocktail seems to be the same one I take, except yours has 3 Elmiron caps and mine has 2. The nurse told me that 20 minutes is really all you need but I wanted to hold it longer. She told me that was fine as long as I didn't keep it in for more than 1 hour. She said anything longer than that and it could totally numb the bladder and make it so I couldn't pee at all. Doesn't sound like you have that problem but I am afraid to hold it any longer than what the doctor told me. I hope I'm not wasting it.

[nat13]

I don't know!?! I have been told at least two hours, but ideally four (and was also told to hold it as long as I could). I don't have frequency issues (at least not too much), but on the days that I do the treatments, I limit my liquid intake in the morning so that I can hold it longer. I also make sure and drink enough to "rinse" it all out before bed and also drink a lot of water the next day. That has seemed to help prevent some of the next day pain. I have never had a problem with a numb bladder, never ever (I wish). Although that 1 -1 1/2 hours after the instill before the lidocaine wears off is very nice. I wonder how long others have been told to hold it - How much it varies....? Perhaps I am holding it too long and that is why I have had to continue and haven't been able to cut back like others I have read about. Maybe I will try holding it less time (like 2 hours for a couple weeks) and see what happens.

Nat

[L. Thomas]

YIKES!!! 4 hours?!?!. Wow! No way I could wait that long but you must not have bad frequency issues like I do. Your instillation cocktail seems to be the same one I take, except yours has 3 Elmiron caps and mine has 2. The nurse told me that 20 minutes is really all you need but I wanted to hold it longer. She told me that was fine as long as I didn't keep it in for more than 1 hour. She said anything longer than that and it could totally numb the bladder and make it so I couldn't pee at all. Doesn't sound like you have that problem but I am afraid to hold it any longer than what the doctor told me. I hope I'm not wasting it.

You need to do what your doctor is tellling you. Dr, Dell says the same thing about the first 20 mins. He told me it was ok to hold it as long as I was comfortable. Before instills it was common for me to go to the bathroom more than once an hour and I would wake up in the night 4-5 times. After the first instill I drove home, about an hour trip, and didn't need to go to the bathroom until an hour or so after I got home. When I do instills I like to do them at night so I sleep all night. If I wake more than 2 times at night that is a sign I need to do an instill.

[phoenixgirl]

Well, I'm still confused, even after having several instillation treatments. Today was my third one and I don't really feel much better. The first day is always the hardest because I have increased frequency and some burning from the catheter being inserted. Usually by the second day, I can go almost 2 hours between voids. It stays relatively constant between an hour and 1/2 and 2 hours for a few more days and then the frequency and pressure starts up again just in time to have another instill and start the whole process over again.

The nurse asked me today whether or not I wanted to continue to get them and I decided I would just because I'm afraid if I didn't finish out the whole course that there's a chance I would miss out on improvement of any kind. At the same time, it's about $90 out of pocket every time I go in there and I don't want to keep throwing money at something that's not working. They use 2 elmiron capsules in my rescue instills. If they aren't causing a significant improvement that way, should I assume the oral Elmiron won't work for me either?

I know it's an accurate statement but I am SO sick of hearing, "everyone is different." I know. I know. But obviously people have to respond similarly to some treatments or they wouldn't keep being administered. I just wish I knew what I should be expecting from these instillations, if anything at this point, or if I'm to assume that they aren't working and try to find something else that will.

[L. Thomas]

I am not sure how frequently you are having instills or what the meds are in the cocktail. At first I did 3 instills a week but I needed to increase to daily for a few months. Then it started tapering off and now I only need an instill every 3 or 4 weeks.

Dr.Dell uses instills as well as oral Elmiron at the same time. He asked me if I wanted to take oral Elmiron but we felt the instills were working so well why change anything. Although I have never taken Elmiron orally from what I understand it takes several weeks before you can see effects of oral Elmiron.