What to expect

[melissa227]

I was diag with IC 2 weeks ago, after almost 3 years of going to OBGYN's thinking I had female problems. Well I tried the Elmiron oral med but it was too hard on my stomach. I had heartburn, headaches, very bad bowel problems, and begin to pass blood and other tissue and mucus looking stuff. I called my doctor this week and she has set me up for Rescue treatments and I have stopped taking Elmiron. I have a consultation on the 18th to discuss this with her. Sooo I was wondering if any of you with experience would have any suggestions on questions that I should be asking at this consultation. And also if you can just tell me what to expect with this treatment. I'm not sure what drugs will be used yet, but I know I will go once weekly for nine weeks.
Any feedback would be greatly appreciated!
Melissa

[SandyRN]

:welcome: to the board Melissa. I am going to see a new urologist soon and hope to be starting the rescue instills ASAP. I can't take elmiron either as I have too many stomach problems even BEFORE I take it--and it makes my stomach hurt really bad as well...plus my hair fell out :(.

If you haven't already done so you can look at http://www.ic-network.com/handbook/ and get some good ideas there, as well as a link to diet tips that can help you out.

Hope you enjoy it here...it's a great place!

Sandy

[Dixiefireball]

I would ask her what type of cocktail is she going to give you?
could she use some type of numbing gel before the installment?
I would also ask her how long does she expect you to hold the treatment?

I do these treatments at home i find it a real help for me to use latex free caths. (less burning for me)
remember to relax and please give the treatments a fair try so many people use it once and give up.
I can't use the elimron either so i use the heparin cocktail at home up to four times a day if needed (i had to work my self up to that many day with the doctor okay)
it has really helped my bladder.
best wishes and I pray it helps you too just remember to try to stick it out the first few hurt some.
after the treatment drank lots of water to help wash the treatment out. its said in our handbook and I've heard other say and my uro said you only have to hold it twenty mins. if it gets to much go ahead and let it out. (don't put your self threw heck) each time you will be able to hold it longer and longer.
if you believe your going to be nerous take someone with you to drive so you can take something for pain. if you have anything.

what they will do is put you on a table drain your bladder. mix the cocktail then put it in.
I hope all works well for you
sending you hugs and prayers

rhonda

[Romans8:28]

Rhonda gave you some great advice!! On top of all those things, I learned to plan to come home and rest after my instills. This helped me to hold them longer and as with any after pain! If you have some sorness afterward soak in a warm bath!
Do find out exactly what they are using in you instills. Read many of the posts about instill combination so you know what is usually in them! I agree with giving them time to work too! It takes time! It also may take time to find the right combination of meds for you!

Hope all goes well and you find great relief!

[melissa227]

Thank you all for your input it has been very helpful!! I'm glad that I have a place to get good advice from people going through the same thing. It's a good feeling to know you're not alone. I have read most of the IC handbook and started changing my diet. I'm just looking forward to getting this IC under control as much as possible. I'm sure I will have more questions for you guys.

God bless

[amber sevy]

Today I had to start over on my DMSO treatments and this time my Dr. gave me a shot of morphine befor he did them. everyother time he has just given me demerol for the pain. I guess what I am saying is find a Dr. that cares about you and how you feel and they will ork with you and your pain and finding anything that will help you.
Take care and know that you are inthe right place for HELP and SUPORT. :grouphug:

[IcyAngel23]

Rescue Instills are normally lidocaine, sodium bi-carb and heparin. If you can get them to use a lo-fric catheter there will be less irritation. If not my uro also use pediatric feeding tubes because they are smaller than caths. Ask for lidocaine gel first before the treatment it helps. Also ask for pyridium if you don't have any already. This will help with buring (when you urinate because the cath bother the urethra, This may be tender for a day or so) or irritation that may occur. Rescues normally help right away. It doesn't burn like DSMO. It just feels like a cool liquid going into your bladder. Rest maybe rent a good movie. A nap with a heating pad or a warm bath (as someone already suggested) I do the rescue instill 3-4 times a day myself. Good luck with everything. PM me if you need any thing else.

Kristin

[melissa227]

I just thought i'd share what the dr informed me today.

My rescue treatments will be once a week for nine weeks.

They will insert Heparin, Marcaine, and a soothing solution. (can't remember what it was called) The dr said the Heparin would help with inflammation, the Marcine is like Lidocaine for pain, and the soothing solution would help my bladder tolerate the treatment more.

I'm supposed to hold the solution for 1 hour. Isn't that an awful long time? From what i've read most people say 15-20 mins, I was shocked to hear one hour.

Also since my biggest symptom is pain. ( i have little urgency or frequentcy complaints) She reccomended Pelvic Floor Therapy. I'm waiting on a call to set those appts up.. Do you guys have any input on this? Have you tried this therapy and has it helped any? I'll post another note in that thread as well.


Thanks again for all your support!

[IcyAngel23]

Melissa-

Holding the solution for an hour is normal for that instill. I find it helps if I lay down or take a warm bath.I've also been told to roll around on the floor to move the drugs around to coat it better. A nap is the best way to keep it in. The shorter time is normally DSMO. It burns like hell.

I also tried Pelvic floor therapy. It is very painful during and after. I had manual manipulation of the muscles and a TENS unit. It just caused more pain and I would be useless the rest of the day. I did it twice a week for 2 sets of 16 visits. Maybe it will help you but know going in not to plan on doing anything else that day. If you have pain with sex or penatration you will hit the roof with pain. I saw two different PT's and both saw lack of improvement in the those muscles. I'm a severe(pain) case and from what you've told us you are too. Good luck. You can ask me if you have other questions. Pm me or e-mail me PhelanKristinE@ambrose.sau.edu

Kristin

[mela414]

Rhonda,
When you do several instillations a days....do you take the cath out and just go about your day and do things or do you lay there with the cath and wait the time out and then drain the solution. About 2 weeks ago the cath came out so when I tried to void I couldn't. I'm not sure why as I am able to void at other times with marcaine......maybe I put more and it stayed in longer so it got really numb!
Does anyone use solu-cortef in their cocktail and waht are your feelings on it?

[ICNDonna]

One thing I always suggest is taking a note pad with you to a doctor's appointment so you can jot down what he is telling you. That way you won't forget anything later. You can also make a note of any questions you have so you don't miss any when you're talking with him.

Donna

[Sarojini]

I find it pretty easy to hold a heparin/lidocaine instill for an hour. They are quite soothing.

I have also gone through Pelvic Floor Therapy and it has helped with some of the pelvic pain that comes from muscles, but of course, since a lot of my pain comes directly from the bladder, the PT didn't take away all of the discomfort.

Donna is right. You should take notes at these consultations -- I always say this to newbies, but it is YOUR body and therefore you have a right to know what the doctor plans to put in it. In addition, you should know the names and dosages of ALL of your medications in case there is an emergency of some kind and you need to go to the ER -- that way the doctors there will know and won't accidentally give you something that reacts badly with what you are already taking. Keep a list! :)

[Romans8:28]

My doctor has me hold my rescues for as long as I can 1-3 hours.It feels soothing anyway so wish it could just stay in there, always:)! Mine also include the solu cortef and I can't function without it!

[Dixiefireball]

i use the same treatment every day its heparin marcaine and water mixed together. me or my husband mix it before each use and i ALWAYS use a new cath (that is because i get so many real utis) but if you can't use a new cath each time make sure your is clean each time i use to wash mine caths and still do wash everything else (exp. my needles) in anti soap and warm water then soak them in white vinger and wate for twenty mins then air dry for the next use this kills all the germs.
my needles i just wash down with alcohol and rince the other out with vinger and water let is set then push it out. Everything i use is very clean.
im also on a very low dose of anti once a day at night when i dont have a real uti.

I've never left my cath in longer then it took to use a treatment.

Oh and with heparin rescue installments my uro said for me to start out holding them for twenty mins longer is always better but for me to never try to make my self hold it longer it would increse the pain for me to let it out when i had to go. the way i started being able to hold it longer was for me to take it at night right before i went to bed with my night meds this helped me sleep longer and the hold my urine longer that way the medicine had more time to work.
I hope this helps someone somehow.
sending you all hugs and prayers and never give up there is always HOPE.
Rhonda

[mela414]

so after you put the meds in with the cath......you remove the cath? Or do you lay there with the cath in for the whole time and then drain the med out?
I used to lay there for half an hour with the cath still in and then drain the meds out before I got up. Now, I put the meds in with the cath and then take the cath out right away and lay there for a little while but then I get up and try to hold it a little onger while i walk around, take a hower or do other things. sometimes it stays in for almost 2 hours before I void. I'm using marcaine, bicarb and elmiron but I want to try to do heparin, marcaine and bicarb in between.
When you get your scripts does your dr right a script for a one month supply?
I've been thowiing the caths out too! but boiling some of the syringes and wiping the needles with alcohol. I am going to try to add the white vinegar and water too.
Thanks for all the info rhonda. :)

[mela414]

romans,
what else do you put in your rescue instillation?
how are you feeling?