Instillations - PLEASE HELP

[Jamie1983]

Hello,

I have been getting weekly instillations for my IC since January. My IC is very severe. My cocktail includes Elmiron, Sodium Biocarb, Lidocaine, and sterile saline. These instillations instantly take away my pain. However, once I pee them out - the pain comes back. I do have some relief from the instillations, as I was MUCH worse in January than I am now. However, my doctor wants to stop doing them. This completely devastates me. I wanted to ask her to learn how to do them at home, and hopefully do them everyday - they work way better than a pain killer and allow me to live a normal life while I have them in. I have been able to hold them in for a full 5 hours.

Does anyone do daily instillations? Does anyone do weekly instillations for over 8 months? Is there ANY research that shows instillations can negatively affect you in the long run?

I see my actual doctor next week and really need to get as much input as possible to convince her to let me continue the instillations. I will be heart broken if she makes me stop and my pain goes back to a 10.

Any feedback is welcome - please - I want to bring the responses to my doctor next week. I am extremely upset and I know there are people out there who have been getting instillations longer than me and who self-cath at home and give themselves an instillation everyday - that is my goal.

Please help!!

Thanks,
Jamie

[kadi]

I do instillations of Marcaine, Sodium Bicarbonate, Heparin, Sterile Water twice daily. They've given me back quality of life. My IC is also severe. Before I did this, I tried Elmiron, Atarax, Tagamet, DMSO instillations, change of birth control pills 3 times, Detrol, Detrol LA, Levbid, antibiotics-- these all failed. I got partial relief from Elavil, Oxybutynin, Flexeril, Necon 1/35, physical therapy - but not enough. I began doing the instillations daily in 2005 and increased them to twice daily in 2008, I believe. I do also have pain medication that I use every night and also during the day when I flare above my meds, which can be several times a week.

Without the instillations, my quality of life is very poor. With the instillations, I am able to work full-time as a teacher, exercise, travel (with some restrictions, not like before, but still good!), make plans and actually keep them.

I do see you're holding the medicine for 5 hours. Is that ok for you? If I do that, I get symptoms from the irritation of the meds. I hold the solution for usually 1 hour, at most 2.

I hope this information is helpful to you
Best,

[Sharyn]

Instills

I have instills done at the doctor's office for about 3 mos.
Before that I had them once a month and was doing very well. Today, immediately after the instill I had pain on a scale of 10. I used uribelle and a vicodine. Still have the pain. Anyone else experice this and what did they do. I put in a call to the doc.

[momw/ic]

There are many people who do the installations themselves once or twice a day. I used to but moved out of state and my new uro won't let me do it yet. I say yet because I'm gonna keep bugging him until he lets me. It's a small town and he has never had anyone make such a request so it's a new concept to him. I keep telling him "that doesn't make it wrong...just makes it different".

In my opinion the self home instills have a much better result. It's easier, you can do them when you need them without having to wait for the doc office to be open or have an appointment. For me, there was less irritation and pain from the catheter because doing yourself causes less trauma to the body since you can go slow, adjust the catheter size if you want and lubricate with lidocaine jelly if you want. A lot of docs don't use numbing gel at all when the use catheters on patients. If you are doing them at home you don't have to try to hold the meds in as long either since you know you will get another later that day or the next day. If your doc is concerned about that it's just another pro for self instills. I don't ever hold mine more than 2 hours - if I can wait that long. Did your doc say why she wants you to stop doing them?

If she won't let you do home instills maybe another uro or your family doc would let you?

[janet.]

First rescue instillation-help

Hello. I have had 4 DSMO/hydros but all have been under general anesthesia. I am trying my first rescue instillation this week. I HATE cathers. My urethra hass hurt after the procedures in the past. Are there different types of cathers or any advice for discomfort/pain after the procedure? Thanks for any suggestions.

[L. Thomas]

There are many people who do the installations themselves once or twice a day. I used to but moved out of state and my new uro won't let me do it yet. I say yet because I'm gonna keep bugging him until he lets me. It's a small town and he has never had anyone make such a request so it's a new concept to him. I keep telling him "that doesn't make it wrong...just makes it different".

In my opinion the self home instills have a much better result. It's easier, you can do them when you need them without having to wait for the doc office to be open or have an appointment. For me, there was less irritation and pain from the catheter because doing yourself causes less trauma to the body since you can go slow, adjust the catheter size if you want and lubricate with lidocaine jelly if you want. A lot of docs don't use numbing gel at all when the use catheters on patients. If you are doing them at home you don't have to try to hold the meds in as long either since you know you will get another later that day or the next day. If your doc is concerned about that it's just another pro for self instills. I don't ever hold mine more than 2 hours - if I can wait that long. Did your doc say why she wants you to stop doing them?

If she won't let you do home instills maybe another uro or your family doc would let you?

If your doctor is receptive to working with an IC specialist have him call Dr. Dell. He is very happy to discuss treatment with doctors. If you have problems contacting him please let me know.

I have been doing instillations for several years. At first I needed them daily. Now I do need them almost daily durnig seasonal allergy season. The rest of the year I need one maybe every 4-5 weeks.

There are links in my signature that include articles on treatment of IC. They may be helpful.

[janet.]

Rescue instillation

Thanks for the advice. The smaller catheter and lidocaine makes sense. I have no further instills scheduled. I had a DSMO on 9/19, so I thought this might give it an extra "boost." I have to get back to work. At this point, if it can not really hurt me (other than some short term discomfort/pain)- I am willing to give it a try. My work schedule did not make it possible to do the rescue instillations, but I may have some brief "flex time" so this could be a new option. I do have a very small bladder capacity, so maybe the full DSMO and stretching of the bladder is advantageous.(I continually wake up at 2-3am and rarely go back to sleep before work. ) Recent falre up has had such a HUGE impact-I am hoping this is going to further help the DSMO. I have had good responses to the DSMOs in the past (the first lasted over 12 mo.). However the time between has been declining. Regardless just over 4 years since my first-so not so bad in the big picture. I did also try a chlorpactin treatment about 3 mo ago, but it really didn't help. NEXT TREATMENT PLEASE...

[Jamie1983]

Thanks

Thanks to all of you that responded to me. It really means a lot. I am praying tomorrow will go smoothly and my doctor will let me do the instillations myself. I will be devastated if she makes me stop them. I have been through 9 horrible doctors and this is the first practice that knows how to even mix an instillation and understands IC.. They just have patients that get better from 6-12 instillations and I am obviously a more severe case, so they need to treat me differently. If the instillations are helping, I don't understand how she could tell me to stop doing them, when there are lots of people doing them.. please wish me luck tomorrow - my bladder is throbbing from the stress... I just want her to agree with me.. I feel like I know more than my doctor because I do research on IC every day and I live with it every day.. I hate this

[nanawaggs]

Hi, Jamie ~ I'll be praying for you. I'm learning my own instills this Fri. I have have them pretty much 2-3 times a week for the last 1-1/2 years and it's time to do them myself.

Hopefully you can relax a little to help calm your bladder down. Please keep us posted with how tomorrow goes.

Prayers,

[L. Thomas]

I feel like I know more than my doctor because I do research on IC every day and I live with it every day.. I hate this

Dr. Dell says that most MD do not diagnose IC until it is at the advance stage. IC is the great immitator...it has so many different combinations of symptoms. He feels if IC is treated in the early/mild stages that it will keep the IC from advancing. Instillations are a newer form of treatment. Information on IC, including sessions at medical conferences or information from drug companies is very limited. If the doctor isn't aware of the effectiveness of a treatment they probably won't try it.

[Jocotter]

Is it hard to learn to self instill? I'm not sure my doctor would let me, but he is a very understanding doctor and the day may come where I would want to do that. Right now I'm doing instills once a week.

[nanawaggs]

Hi, Jocotter ~ From my understanding of those here on the ICN, it's pretty easy to do self instills and a whole lot more convenient. I'm learning today....we're going on a little vacation up in the mountains and since I've been retaining up to 300+ cc's the time has come. I'm sure you'll hear from others who do them all the time, but I'll try to update with my opinion later today.

Take care,

[Omaklackey]

Its definitely NOT hard! And with practice it becomes quite fast. My instill last night took exactely five min. start to finish. That was including washing and alcohol swabs and doing everything clean and safe. I'm NOT advocating rushing at all, I just timed myself out of curiosity! I have a mirror that actually has this funny little foot on it that I was able to slid under the toilet seat in front of myself while I sit on the toilet and then the mirror actually pivots so you can see what your doing. My hubby found it at Walgreens and it works like it was made for the job. I found the toilet the easiest for me personally because I don't bend very well, but I'm used to that angle. The first time was by far the scariest. I had to get over some self image/body issues but once I did it was quite easy. If anyone wants to message me, I can show you a picture of the funny mirror, or a link. I love it! http://www.walgreens.com/store/c/stu...118298-product

[Jocotter]

Thanks for the info. I did wonder about having a mirror and you already answered the question! I believe my doctor's appoint is coming up in a few weeks, so I may ask about it.

[nanawaggs]

No Problems!

Hi, Jocotter ~ Well, I'm home from my appt to learn my self cath....wow, it was so simple. I think mixing the meds will be more nerve-wracking! Of course I did have "3" hands, haha, as the nurse assisted with holding the mirror. I love the idea of the Walgreens mirror. I'll try mine first and if it doesn't work, I'm heading to Walgreens. (Thanks, Omaklackey!)

I was the talk of the front office as I left since they said how easily I got it! Not too bad for an old lady!!!

Take care and here's another one who can now say I can do it too!